A place to talk death and dying issues
This post is for those of us with concerns and issues about death and dying to talk about them.
IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE. We do not need people telling us to live life or to hear that other people have lived a long time, we have concerns. We are living life and would like for our diagnosis/prognosis to be changed. However, we are stuck with it and not in denial.
Comments
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I almost don't know where to start. Like many stage IV people, I've had big ups and downs. I had a near death experience about 2 1/2 years ago and I'm probably heading into another one right now. During the first one, I was very sick when I left the hospital but very concerned about my brother and mother - both were very dependent on me.
During the first episode, I was able to help my brother become independent with the help of a community organization. A couple of weeks ago, I was able to put my mother in touch with someone I believe will be a good resource for her - she is 85 but still living in her home in the country. I've been able to set her up with people that help her maintain her home, help with paperwork, etc.
I am so happy that I did the will, health care power of attorney, etc. many years ago and don't have to deal with any of that. I am currently looking into things I want to give my sister and brother now versus later.
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I know what you mean, i feel likei'm always being told, but you have to fight. Unfortunately for every long termer i can probably think of 3 who went from NED in a week or 2. No i am not planning to do that, but i want to be able to tall without feeling akward. Good topic
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Nothing to add except I hope each and every one of you/us finds the information that we need in order to do the things we need to do when we need to do it.
Many Hugs and Blessings
Jean
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I appreciate the post. Though I am not close to dying from this disease yet, I know that one day it is likely I will be (unless I die of something else before). When I have tried to talk with close loved ones or friends they are obviously uncomfortable. I am at peace with the logical conclusion of having cancer. It hasn't stopped me from planning for the future or sent me running into my room to wait to die. I live each day the best I can. I plan for vacations with my DH I look forward to seeing the kids get married, hopefully have grandkids someday, maybe building one more house together. I may not get to see any of this, but it is the hope that gets me through the day
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I have meet one of my goals, I watched my daughter graduate from high school. I would like to see her graduate from college also.
I do have all my final papers in order and it was a stress relief for me and I did not stop living because of it. I know this ugly disease will be my cause of death, but I do like to talk about some concerns, like; will I be comfortable my last days and be able to deal with the pain?
I am lucky enough to have a sister that knows even what jerwlery I want to go to who. We are currently planning a July 4th party, if I am well enough.
Another thought, my daughter's graduation party ended up being a family reniun with people coming in from texas and other places, it made me feel loved and at the same time spooky because they came to see me before I die.
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Thank you for the thread. I am living through yet another death. Since my diagnosis, my son-in-law died at the age of 35 in 2007 from prescription drugs. His children are still grieving. My sister-in-law died in 2008 at the age of 57 of something totally stupid, a perforated colon. If it had burst she might have survived but it slowly leaked. My brother came home and found her dead. Now my brother is dying from lung cancer. He has four to six weeks. I am sure her death has led to his giving up. They had one son and he is freaking out that he will be left alone (he is an only child). My daughters assure him that this not true but I know how things progress and eventually unless he finds a permanent someone he will be alone. Our family is tiny. Two daughters, two grandchildren, and the one cousin. I have BC and my husband has heart problems. I always thought I would be there for them. My mom lived to be 91. How can we avoid talking about death. It surrounds us. I wish there was more on TV; not the cliches, not the we will see each other in heaven, just what ordinary people think and how they cope. Hugs to everyone.
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i hear you imbell, it is hard, i only have a little family too...and thanks ma for this thread. I went through my mother's cancer when i was 13, though she survived it, it was my first meeting with 'death'. I have been through my fathers death, my best friend, the love of my life boyfriend, a close friend, my mother died a few years ago on my daughter's birthday, I have given birth to a still born baby..death is a fact of life..
I do want to be able to talk about things. I wish i had a sister like you ma..i try to tell people what i need to say re even the little things, but they inevitably say"oh dont talk about that, its not going to happen for yrs'..
I know some of my posts have been considered depressing by some, my psychologist wont even let me talk about what is ahead, and i thought that would be one place/space where i could freely talk about my fears, concerns, beliefs, at least for one hour a week!..but i saw she felt uncomfortable, and said i am 'wallowing in it', by coming onto this site, and reading as much as i can on this disease..i was furious, as i believe that however we choose to handle this diagnosis, is our own choice. If reading and talking about it gets me through, then that is what i need to do. My friends change the subject, and say it is good to talk about other things, to take my mind of it. I dont talk to my 13 yr old about it...I feel i am handling it rather well, i still laugh, joke, cook dinner, daydream, listen to the birds, but i am in need of straight forward conversation about the future, my future, life, death. It was an extremely hard 9 months of facing this disease, but i have got there i think, and i am living.
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My decisions now can't be made without thinking of a shortened lifespan. With that in mind, last month I created a firestorm when I insisted my siblings in another state would now have to be responsible for my very difficult 85 year old mother. It was a fight to get even her to agree as she is a completely self absorbed hoarder and not too rational these days. Last week I put her on a plane to assisted living near my brother. He's furious and fairly lazy, he figured he wouldn't have to do this with 3 sisters but it's his turn.
My adopted and mentally disabled son........well I found his birthmother and they have been talking daily by phone and he will be going for a visit this summer for a month. She knows why I'm sending him and understands the plan is for him to eventually move back to her. She is thrilled to have him back in her life. My family rejected him long ago. They are real winners I know.<sigh>
I made the decision to go on SSDI now rather than wait 2 more years for regular SS to be sure that my husband will benefit from the higher amount when I do leave this world.
I'm a bit of a project manager by nature and that is how I have approached this.
Having said that I have no plans to go anywhere, anytime soon. But we make plans, God laughs, isn't that the cliche?
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project manager, thats great chickadee
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Thats-life:
I have a psychologist that I found through my 2nd oncologist (I'm on my 3rd now) and he is a treasure. His expertise is death, dying, and mourning and he has a lot of experience with cancer patients. I have had many good discussions with him about how others accept death and the mourning process that you go through over your own life. I think that you do mourn the things that you are leaving behind, the people, the things you love to do, and the things that you can no longer do. He has been a tremendous support to me especially getting me to understand that none of us can control the time and cause of our death - we never had that control - not 20 years ago - not now..
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Wow, you guys really got me thinking. I have all my paperwork but never filled it out yet. I have been floating down the river of "denile". I have talked about death and dying with my DH. I have even figured out who gets what of my things since I only have boys and they don't want "girlie" figurines/jewelry ect. When I mention these things to other family members, they are appalled that I even suggested "dying" and think I am giving up. which pisses me off to no end. Why am I doing tmt huh? I don't plan on leaving for a long time! I need to make myself do the paperwork while I am coherent (does chemo brain count?)I flet superstitious that if I filled it out I was marking my time. Silly me.I am the procrastinator manager! Dawn
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nurse ann: i was refered to this woman on dx, and as she had alot of experience as an onc nurse for 20 yrs, and involvement in the bc world here in australia, i thought she would be great. But i have had to admit to myself, this week, that i have spent most of our sessions defending myself, defending information i have found here, my fears, my feelings. This is what i am most angry about: my hesitation re chemo in the future (as i have chronic infection isssues) is interpreted by her as a suicidal wish..my participating on this board as 'choosing to be depressed'..my need to look at potential situations in the future i.e. fractures/ mobility as 'wallowing'...far out, her fall back is to tell me i have to start 'living'..or show me stories/videos of women who have lived over ten yrs with this dx. I get that, and i hope im one of them!, but i am processing a devastating dx, and i have realised that how i choose to 'live' with this dx, is my way of coping, and individual, and if it works for me, then i will keep doing it..someone else's version of 'living' may not be mine. ( early into my stage IV dx i was told by one 'expert' in this field to take up knitting, well, um, maybe not right now, thanks anyway..lol) Thanks for the comparison...i am going to see my GP, and ask if there is someone local, who specialises in death, dying, mourning, as you said, thanks
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China:
One reason to do the health care power of attorney and your final "physical" wishes is that these documents can get very scary and detailed like when they should give or withhold water, food, etc. I hate to be so graphic but I am so glad my husband and I did these 10 years ago and I don't have to deal with this now with everything else. I think it's good to get this stuff out of the way and into your desk drawer.
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Hi Chickadee,
I am not in your situation, but I have a question. I was diagnosed with the same as yours. Except I never got a response by doctors as to the HER2 dx. How many lymph nodes were dissected for you. Positive or negative?
Thanks.
Mary Grace.
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I like this thread. I am not a forward thinker and never plan. I had no life insurance. Well, my company switched life insurance companies and a one-time offer was made for everybody to get life insurance, no questions asked. Needless to say, I jumped on the offer and bought the max. Now, at the time I was stage II and had high hopes for full recovery and a few times I've looked at that money coming out of my check and wondered why I bothered.
Now, I'm so glad I did. My family will get an extra $100,000k upon my death, and that will help pay for my son's college if it's within the average range.
I have no idea what else I need to do to plan. I really need to get rid of "stuff" - I'm not a hoarder like Chick's mom, but I like clothes and all my closets are full, and I guess I should pare some of that down. As far as other planning goes - it's hard to know. I hope to work quite a while longer - it's all kind of up in the air right now.
What other financial things are necessary? When people say they get their affairs in order, I always assumed that meant they had a fling with Brad Pitt.
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HAHAHAHA, Coolbreeze. Thanks for the laugh! I like your thinking.....Brad Pitt sounds much more fun than doing a will!
I have two young kids, and I have done so many things for them.....scrap books, a CD with my favorite songs, projects, gifts, letters, journals. They each have cards for every birthday until age 21 and every major event I could think of. etc. I have done video messages. I have bought books and writtien notes in them. They each have a box full of stuff. There are other unfinished projects I am still completing. I am a bit obsessed.
I am going to make them not only "remember" me but also know how much I loved them. I feel better having done all of these things.
Lori
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Wow, Lori, you are so organized. I love to scrapbook - I have completed exactly ONE for my family, and that was 15 years ago.
I've done others for others as gifts over the years, but not for us. I would love to finish/star these books but I don't know how I'll have the time or energy. Maybe I'll feel better when my new chemo starts but right now, I got to work, come home and go to sleep. My husband woke me for dinner and we watch TV and then bed.I need to do more of this stuff, but it's hard when you have a job.
Im such a control freak I want to leave notes to my husband: don't forget to not gulp when you drink your coffee, make sure you wipe the sink. LOL.
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Hi ladies,
I really have no problems talking about this stuff and never did really. I have done very well so far but I know, as does my family, that I could take a turn for the worst and be gone in a very short period of time. I do just live my life each day and try to leave good in my path. This may sound cliche but I really want the funeral home packed with those who love me. When people talk about me after I'm gone, I want them to laugh at the fun we had and be grateful when times were bad and I was there for them. I want to be remembered much like my grandma who's great great great grandkids still hear about her as if she is still alive. I want that...to be remembered as someone who made a difference.HUgs, Mazy
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Oh by the way, I do have a will etc. My kids and hubby all know my wishes and wont cause a fuss about anything. I told them if they do I will come back and haunt them LOL.
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I used to work in a law office so my will, power of attorney, and advance directive was drawn up when I was diagnosed. I had a family member's name put on my checking and saving's account. Now I'm working on paying for my cremation and planning the service with my friend who is more than willing to do this. She lost her husband to cancer about a year ago. I also will be making a list of specific items being left to friends and family and writing some letters to leave behind for family members.
I quit work and cashed out my life insurance to pay for continuing insurance coverage. I really enjoyed my job but found the drive and half days brought on more pain than I could handle without pain pills. That was hard for me. Slowly I have given up marathon walking, working, throwing dinner parties, and anything else that I have not enough energy doing. I keep telling my mom I totally know how older people feel when they can't do what they used to do. At first I fight it then I get to acceptance. What other choice is there?
Hardest thing for me is when someone says we are all dying. Yes we are but don't you think it's much harder when diagnosed with a terminal illness? Like you can forget about it when you are in chemo for life. I'm just saying.... -
Fighten,
And the fact that we have so many side effects and aches and pains from cancer. Some people just dont get it. Cancer ages us. I know I sound like my Mom with all my aches and pains and complaints. I'm only 52 but physically I'm sure its about 70 LOL. Mentally I am 27 tho LOL. HUgs, Mazy
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Imbell, How awful, I am sorry sorry there has been so much death in your family.I will pray for you often. Hopefuly the one son that is still with us is seeking, or already has, a psycholigist!
That;s life,
I am lucky to have the sister I have. You are living for sure. You have also had more than your share of death in the family, so sorry. It is part of the life cycle, but that doesn't mean we like it. I think that when there is a lot of death in one's family it makes us more aware of what we do not want to happen and also aware of the grieving the family and friends will go through with us passing on. I have a now 17 year old and do not want her to have to make any descisions for me, so everythign is in writing and I even planned my own funeral. As hard as it was, I am glad I did it. I even picked out the sign book and cards. I don't have a husband to do it for me.
Consider changing psycologists! We all need a place to talk about death and dying so we can get de-stressed to live! I also think that with the dxs we have antidepressants should just come with it and we shouldn't have to ask.
I just read a new study that treating depression help stage IV breast cancer patients live longer and had a better quality of life. Oh let's talk away.
I like your, we control our destiny. So many times people think we can. I hate that!!!! Like I have any control, hello.
Chich a dee,
You are so well organized, my respect to you.
China, It is very hard when people think we are giving up just because we want to organize things, it is usually even for the peole that unintentional know us down.
Things I need to do yet- fling with Brad Pit, letters or videos for my daughter.
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Ya know, one thing I hate is when peole knock me for my decsions. Like, no more harsh chemo. Do they really think that is living? Not being able to walk, eat and going to the er for fluids is not living. When treatment is a thing for the rest of your life, what is you definition of living?
Mine includes being able to drive, hug my dayghter, walking, eating, etc.
I went with a vaccine trail instead of the tradional chemo. I had the TCH and hated it. It was hell for my daughter to see my so sick.
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I am very new to stage IV but I am going to start a memory box for my family, I am going to fill it with letters, photos, stories about our family and all the documents I have gathered when doing our family tree over the last 10 years.
I need to do all the practical things like wills and eastate planning. Where to start I have no idea.
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Lori, you are my hero! I have been saying that I would do those thing for 2 years now. I really am going to start it this summer. I love that ma11 started this thread. I really have no one to talk to about these issues. My husband has had panic attacks since my diagnosis and my sister pretends nothing is wrong. I think she will be the one to fall apart the most when I am gone. My in-laws are in full cheerleading mode, which I love. But it doesn't allow for much reality at times. My mother died from cancer herself and my father just plain and simply cannot handle hearing any discussion of death. This is a very lonely disease and I thank God for you women. We are all so strong even if we don't always feel that way.
Susan -
Two years ago I made attempts to get my life in order. I have yet to complete my will. My diagnosis, although it has a good prognosis, is the incentive to finish it. If there is one thing my experience has taught me, it's that nothing is a given, even from the beginning I went from DCIS, to IDC after surgery. I think planning for the future is a responsible decision, and I feel for anyone that get's the brush off when they are attempting to do these "hard" things in life. I'm not yet married, and I got the brush off yesterday...funny that this post showed itself to me this morning. The finanical guru's have a lot of advice on planning and completing wills. I think Suze Orman even sells a kit (which is not necessary) I liked Dave Ramsey the best of common sense type planning. There's also all kinds of software that is cheap, like Will Power. There are all kinds of state regulations, but I think purchasing a software with state specific guidelines, and then a consult with an estate planner after you complete everything would be the cheapest way to do it. I would think the American Cancer Society would have some info available too. I've only had life insurance through work, and was laid off before my dx, so now I squirrel away money for the inevitable. It's a secret so far, but I feel like it gives me some control. Of course that's all just the business of the end of life. As for the emotional part, pictures have the most weight for me. I'll never be a scrapbooker, but I've been trying to capture images of those I love, although I'm not in any of the pictures, I'm hoping that the images I make will evidence the love that I feel for those around me.
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I have a hard time getting anyone to talk to me about my passing and what I want. I've just gotten NED results and believe me, I do appreciate this time and will enjoy it. But I am not a fool, not pessimistic; just pragmatic. I know this time is likely to be brief. I am Her2+++ with IBC. This generally translates in to "screwed". SInce I'm on Herceptin, brain mets will probably be the culprit, and they will grow very, very fast.
The problem is that since my results are all sunshine and lollipops right now, no one wants to hear that I am essentially and always will be still sick - any mets will grow very fast. That sword of Damocles isn't going to go away. I am in a golden era right now where I know how easily my life will slip away, but have been given a reprieve. But if I get brain mets, it will probably be a fast decline and who knows what part of the brain it will attack? By the time people are ready to listen I might not have the faculties to talk.
Sorry. Feeling down and in pain today.
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(((((((PaminWV)))))))))
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I think it's a wierd place to be. I have terminal cancer. I'm perfectly healthy and active. I don't look like I'm dying, and for all we know, I'll outlive them all. But I have to face reality that with this disease things can change quickly. I got a taste of that when I went from normal TM to 300 point gain in 3 months which led to the discovery of mets to nearly every thoracic vertabra. OK. So I can deal with that, but it's sure a wake up call to get my affairs in order. You all may know all of this, but I'll post it here for your consideration. (I have to know my affairs are in order to stay sane, I HAVE to have a plan)
I work full time and carry the health insurance on hubby and I. I've called two insurance companies. Because Hubby is self employed he can get group insurance. It is pricey, but do able. With a group policy I can be added when the time comes. It is more cost effective for us to stay on my employer's policy as long as possible, then get hubby a group policy of his own. Only when I must quit work and file for SSDI will I join his group policy. That will cover me for the two years until I qualify for Medicare. It's all kind of expensive, but it's doable.
The group plan I prefer is a $2500 HSA. The first $2500 is out of pocket. After I have paid all expenses, including drugs, up to $2500 the insurance pays 100% of all costs after that. It is recommended you have at least $2500 in an HSA account, but it not required. I really like this because it caps my out of pocket expenses. No more $40 OV co-pay, no more script expense, just pay the monthly premium and whatever cost I encure over the year up to $2500. On a good year that could very little, on a regular year I could max out. I like this cost contaiment feature.
I have two life insurance policies, one through work and one is a 30 year level term. When I file for SSDI I will also file for advance benefits on my life ins. The 30yrLT will "lend" me up to 50% of the policy. The balance will pay my burial expenses. The policy through work will allow me to cash out 100%. This money will help cover the loss of my income and the cott of the insurance premiums.
I just can't bring myself to do it just yet, but if my prognosis changes I'll consolidate all my accounts with my husbands. I love him, I trust him, but there is just that little bit of me that really likes my complete financial independence.
Because I live in Kansas with no heirs I don't really need a will. I actually own nothing but half a car, and half a truck and have no outstanding debts. Hubby will automatically accquire all my worldly possessions. I'm sure he'll look good in a size 12 dress! *LOL*
I have a living will.
I have a folder started with my favorite psalms and such for my funeral.
So far I haven't come up with any more ideas. I think I've covered most of the bases.
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Thanks, ((((Kezzie))))). I sure do appreciate the virtual hug. One of those days!
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1st off- i love this post! I am not near the end yet but like many of y'all said you know its looming ahead. I have so many thoughts and fears about dying so this post is truly a blessing for me to read. (i never talk to anyone about it so i dont sound morbid or something)
Imbell- that is pretty crappy. Even if you had a larger family that is a lot of death in a realativly short time. I agree there isnt enough out there on tv for us to gain from. mostly the feel good stuff...
Ma111- i am going back home to visit and want to do a huge bbq/party because a lot of these people i havent seen in 10+ years, but i am afraid its going to turn into one of those "lets see her before she passes" type of thing... Is it wrong for me to start lying and tell people i am "all better?"
I have been putting off talking ewith my dr about putting me on an anti depression med- but i am def going to ask on my next appointment which is monday- i just feel that i cant handle the depression myself... i dont want to do anything, i look at my dishes and it make me more depressed!
thats-life- i get that a lot too "oh dont say that, you'll be around for YEARS" I want to talk and work through my feelings! I think its too hard on our loved ones to even think about it let alone say it outloud. Take up knitting LOL thats too funny!
Chickadee- Sounds like you're related to me! I have a lot of "winners" in my family too! Good for you to stand up and send your mother off to your brother- i cant beleive that no one in your family offered to take care of her knowing what you're going through!
Coolbreeze- LOL i wanna get my affairs in order if it means Brad Pitt LOL- thats my thing too i need to get rid of stuff- like why i am i holding on to a lot of this stuff!!!!
Lori- i do write in a journal 1 for the kids and one for my husband. i have thought about the video messages but somehow i cant bring myself to do it. I think to myself that NOW is the right time- i am health(ier) my hair is grown in and i look good (dark circles under my eyes have gone) so if i am gonna do a message it would be now, but thats as far as i get.... When did you write the birthday cards? Right at you dx or more recently?
FightingF8- OOOOh that boils my blood! Of course we are all dying and i hate when people say that, i wanna say to them "i wasnt aware that you have diblitating joint pain too!" (or something else that i am going through at that moment) Because our dying comes with so much more than someone AGING (not dying!)
Kezzie- that sounds good- i may have to do a memory box... or maybe memory videos (like telling my fav memories on tape)
Pam i get that too- my last scans showed stable and so everyone is like "well thats it!" no sorry that not it, i will still have to do treatment to keep them stable and God forbid there is any progression! BTW happpy to here youre NED- question about your comment since you're on hercepitn brain mets wil lbe the culprit- explain LOL i am on herceptin too does that mean brain mets are more common for those on herceptin?
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Chele- thats a funny image your husband in your dress LOL
I like your idea about putting together your favorite psalms for your funeral. I really am going to do a video sometime to be played after i die.... i am going to use pictures set to music, honestly i want to do it A- so they dont put in some crappy pic of me looking all gross LOL and B- it will be too hard on my husband to do something like that....
Okay this is so funny i thought i'd share. My daughter got me a card for my bday that was shaped like a pickle, on the inside it said "Bet you didnt expect to get a paper pickle for your birthday" I want to get some made that say "Bet you didnt expect to get a paper pickle at my wake" And i want to sign all of them... Leave the other side blank so they can add after i pass all the information. Reason being is i got that card when i was going through chemo and it was towards the end and i felt so crappy but when i opened the card and read it i laughed the biggest i had since my dx and it was one of those laughs that i just couldnt stop LOL you know where your whole abdomin hurts from laughing! Of course people are going to cry when i die but i want them to LAUGH! to remember my funny side...
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Thank you for this thread.
I'm much like Pam in my status - Stage IIIc with TN that was chemo resistant by the end of my therapy. I still have a positive node that we are treating, and while I am currently NED everywhere else, I am realistic and so is my doctor. We are just trying to buy time.
I'm really trying to get my DH to talk about my death and its consequences, and it is hard. He travels for a living and LOVES his job. I stay at home with the kids. We don't have any family where we live. He is freaking out a bit about the idea that he will have to change his career and stop traveling, and he is terrified of being a single father. So he just doesn't talk about it much.
My mom, who is staying with us, also won't really talk much with me about it, my wishes for a funeral, things I want to accomplish before I die, the bucket list car I just bought...she just can't cope well with the thought of losing her daughter, and will only focus on me living until told otherwise.
I feel like I'm walking a knife's edge, in between life and death. I have no real reason to be hopeful that I will beat this, except so far I am, but I can't start planning for a different fight because I'm not there yet.
I don't have any answers, but it is good to read everyone's response. Thank you.
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Well Timothea, the deal with Herceptin is that it doesn't cross the blood-brain barrier. So it could be working great on your body from the neck down, but you could (and many do) still get brain mets, even after complete pathological response.
But! I have two strikes against me that lower my chances far more than most people. The first is IBC, which you will always see quoted as "the most frequently fatal and most aggressive form of breast cancer". This is because it moves so fast that you can get a recurrance while in rads, while in chemo, or literally weeks after a complete response.
The other is my Her2Neu status - my cancer cells are far more positive for Her2 Neu overexpression than are most people. Which is great in theory with Herceptin, but not so great about the brain...
So, I guess what I'm saying is that you should get scans periodically, but I don't mean to scare you and say "everyone who takes herceptin will get brain mets" at all. It's just not the case.
Like a lot of us, I'm just hoping to buy time for the Next Big Thing in cancer treatment. Normally I'm pretty hopeful about it all, but every now and again I have to bring my head down from the clouds and face icky reality.
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Timothea- I started all my projects which include to all my close family/friends and my husband when I was diagnosed stage IV in 2009. I had all the kids birthday, confirmation, wedding, baby, etc cards done the first few months after my diagnosis. I would sit in my room and do a few at a time when I had a chance. The younger birthdays don't say a lot, but I love you, you are amazing, etc. With the older birthday cards, graduations, weddings the messages got longer and deeper. it was not an easy task. I cried a lot!
Susan, haha, thanks.
Another thing I did which was important to me because my kids are SO YOUNG.....I went to Tiffany's and bought them each a special gift.....both crosses which I had engraved to be given to them when my husband thinks it is appropriate....teens or so since they are not exactly inexpensive. I just hope my husband doesn't forget to give the gifts!
I have what I can an "instruction manual" for my husband when I kick it. It has i with different subjects of things i do now or wish him to do in the future. I am such a flippin control freak!
I was a "weak" stage IV from the start but knew I would eventually have big preogression which I did this past February/March. It was nice that a lot of my projects were done, but I am still working on more. I think of or find new things to do all the time. My kids are going to be sick of me even when I am not here! haha!
One thing I have not done is address what I want done at a funeral/memorial, etc. I have faced a lot, but that is a topic I just don't want to think about. I feel bas as I should make it easier on my family, but I just can't do it.
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PaminWV,
Your complete pathological response actually gives you a really good chance of staying NED for a long time, if not forever. I know how you feel, don't get me wrong, but you had the best response possible for an IBCer. Don't jump to giving yourself brain mets just yet. That being said I understand youir worries. I would go by the motto "expect the worst but hope for the best" and enjoy LIFE!!!
Hugs,
Lori
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I'm intruding in your group to post this cautionary tale: an acquaintance of mine, a lovely man, died of cancer last year. He had a particularly aggressive type, and despite chemo and rads he succumbed in little over a year. He did almost no preparation. I don't know if they were hoping for a miracle or what; I do know his family kept him in fight mode. His wife, especially, was a wreck over his diagnosis, and maybe she didn't want to face the fact that he was dying. Also, if I were him and had to face the fact that I'd never walk my beautiful children down the aisle, never see my grandchildren, I might be in denial, too.
I won't go into details because I don't have permission, but suffice it to say that the aftermath was a mess. I've come to the conclusion that preparation is one of the best last gifts we can give to our loved ones. My husband and I have a will, POA and directives in place; my insistence, when he presented with heart disease. Even though I have a good prognosis, I have done things like make sure all my retirement accounts go to him, if I go first: he will need the money, I've decided, if he lives a long time, given his health issues.
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As long as your requirements aren't complex, Legalzoom.com is a great place to create your various documents. I have used it and found it very good. POA's, both durable and medical can be done very inexpensively there.
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My biggest fear is dying and leaving my two kids behind without a mother
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Suze- i think thats the same reson why my DH doesnt talk about it either- they dont want to think about being the sole parent
... Also my mom was acting like i was on my death bed @ dx! She is so dramatic- which remind me also my brother in law was SO weird right before i started chemo he was trying to get me to sign over custody of my kids to him! (this is my husbands bro) He is in renial failure and goes through dialysis 3x a week so how is he more capable of taking care of my kids than myself?! (or my husband for that matter lol)Pam- thanks for clearing that up. Because of my stage i do get routine scans done and so far no brain mets and i dont really think they'll work their way up there lol (or i hope) i do have lung and various bone mets though....
lori- yeah i cry when i write in the journals... I idd write my daughter a very poignant letter when she was only a few days old (so 5 yrs before i was dx) i need to let my husband know where that is LOL to maybe i will leave an instruction manual, just with basic things like where i keep the warranties on everything LOL or else he wont know!
Chickadee- i am def gonna check out legalzoom, i've see thier ads but havent taken that step to do it but after reading memory's story i think its important to get that stuff together before anything serious happens.
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Excellent thread. Thank you. ma111, for starting it.
I do have a living will/advance directive/power of attorney which gives my Pack Rat the authority to speak for me medically if or when I can no longer speak for myself, and since we've talked about it, he knows what I would choose to do for particular medical situations. His name is also on my checking account (the only money I have, and it's only just enough to live on) so he can pay my bills and rent for me if necessary, too, or if I can manage things tlll the end, just claim whatever's left, if any, when I'm dead and have no more need of it.
I have very little of real material value, If I was going to die today, which I doubt, the only things I have which anyone could use or sell would be a 5 year old Toyota Corolla, and some 1995-2005 era Macintosh computers. I have no houses, no investments, no insurance, no jewelry. I also have no children to worry about, thank goodness (getting spayed may very well be the smartest decision I ever made in my whole life! LOL). I actually started to write a will but haven't finished it yet. I know I want my Pack Rat to have the car and my Macs -- he doesn't need them like I do while I'm still alive, but he might find them handy for something down the road -- and my clothes can go to Goodwill, but I don't know what to do with MY music (archival master tapes of the seven albums I composed and recorded in the 80s) or my rat collection. I guess leave them all to him too. And on top of having next to nothing that's actually worth any money, I don't even want a funeral service -- I'm not religious and I hate funerals because I think they're an expensive ripoff, the funeral industry taking advantage of grieving loved ones when someone dies. Good thing I feel that way because it'll probably use up all I have left to pay for a cremation! (and you'd think I'd look into arranging that too, right? wrong!)
So I don't need or want all that much, I'm worth next to nothing in terms of material value, so it should be an easy document to finish it. I'm not usually a procrastinator either; I'm one of those disgusting punctual prepared types. Like today for my appointment with a new eye doctor, I showed up ten minutes early with the glasses and contacts I presently wear and a list of all the medications and supplements I'm taking -- yeah why would an EYE doctor want that?! The lady who called to confirm my appointment asked me to "bring all your medical information," so OK -- hell I'm a terminal cancer patient so I keep a list in my computer which I regularly update as applicable, and bring a printout with me. And I'm such a gloomy and doomy person anyway, as in eternal cynic and pessimist, wih a mad scientist black sense of humor and was like that for about 15-20 years prior to getting cancer so it's not like I only got morbid when I came down with a serious disease -- so what gives with me on this will thing?
And yes, I bookmarked sites with willmaking software within weeks of my diagnosis (Stage IV out of the gate), which I plan to use after I finish writing "The Final Frontier."
Imbell, please accept my sincerest condolences for all your lost family members.
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Lori, I just got back from my Oncologist - the first time I've seen him since surg - and he explained what the complete response meant in terms of prognosis. I knew it was good but didn't know it was that good.
You're right, I need to get my head out of my butt and go live!!! Right now I'm too stunned.
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texasrose - it is such a scary thought, I know, that I cut DH some slack. He's trying to work through this just as I am. But it makes it hard when I want to talk brass tacks, like "this is how you pay the bills!"
This conversation is great - Lori and Lena - you bring up very important things that should be addressed. I need to get started on the stuff for my kids, pictures, videos, cards, gifts...and I need to do the important things, such as a will, as well. I'm like you Lena, I don't have very much in my name - we do most things under DH's name, it is just easier. But my car, my jewelry, my shoes (my shameful indulgence), all need good homes.
I did give my sister a pair of my shoes and a necklace the last time she was here. It freaked her out, but I told her that I wanted to actually see her enjoy them.
I'll have to check out that legal website. Our will would be pretty straightforward.
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Memory,
Thanks for the post. It is nice to hear postive things about why I have my final things in order. It is so hard for people to understand we do this so that our family does not have to, especially those of us who are single moms.
I would rather have a good prognosis, but we don't always get what we want in life.
PaminWV,
I have also read in a few places that the IBC is the worst, escpecially with the er&pr-. HER+. My tumor didn't show up until a few months ago and it looks like IBC with skin mets. I presented with swollen nodes in 2009. I am also on Herceptin and thinking it will be the brain mets that will get me from what I read. I have much considered no treatment for brain mets as I want to function and keep my drivers liscence and like being able to walk, etc. I feel as if I have lived a long functional life for the dx and path report. Don't you hate it when people tell you they know people that have lived 10 or so years with breast cancer being treated as a cronic disease. They just don't understand that the subtypes are different and they won't let you explain crap to them. I am getting to where I feel like being scarstic with them, but don't want to hurt their feeling, but they are hurting mine. Such a frustrating thing.
I do hope you stay in NED for a long time. Consider some vaccine trails while you are in remission to keep you there. clinicaltrails.gov. I have had good results with one at the NIH. In July they are starting a vaccine only trail.
I do need to write my daughter some letters, I will cry on that one.
Lena,
my sister can take a loan out in my name jusy in case there needs to be some bills paid. My life insurance will apy off my house and my 17 year old daughter can live in it.
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PaminWV,
I did not at all mean to minimize or dismiss your feelings, and I hope you didn't think that is what I was doing! I know as well as anyone the aggressiveness of IBC. I have spent the last two years reading everything I can about this disease and talking to many other IBC patients. My MDA onc quoted a study to me about patients who have complete chemotherapeutic response, and I was surprised by the positive statistics (for once!)
I wish you a life long dance with NED. If an IBCercan do it, based on what I know about your path report, it's you!!
Lori
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Those of you who are stage III, I hope you are keeping your optimism. I'm not sure you need to be posting to death threads yet!
You have a 49% chance of being around in five years - Stage IV only has a 15% chance.http://www.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage
I do believe it's important to be realistic but lots of women at your stage have a complete response and end up NED so while it's good you are being realistic, you don't want to be TOO realistic!
Prepare, sure - it's what I did when I bought that life insurance even thinking I'd be cured - but plan to be in that 49%.As far as herceptin and brain mets go - 50% of women with metastatic breast cancer end up with it in their brain. The other 50% don't. However, Tykerb does cross the BBB so maybe you all can consider getting on that?
I don't know that I need a will. Everything will go to my husband. I can designate some jewelry for the kids, although I have boys, I suppose. I should do an advance directive though. My husband is a great guy but very passive. He is not going to ever argue with a doctor, he's not going to demand or ask for anything, he won't do any research or question anything, so I'm going to have to make sure I spell it all out as plainly as I can.
The problem is I don't know what "it" is yet. Except, of course, a visit with Brad.
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I prepared everything that I could last year, including what to do with my body. I was sad that I couldn't be an organ donor anymore. But then I found a program through our local teaching hospital (University of Washington) and I willed my body to them. They will pick it up at no charge to my family, and it will be used as a cadaver for medical students. Or, they may just harvest certain organs or whatever for use in teaching. Whatever is leftover will be cremated and either sent to my family if they chose that, or buried along with others in a non-denominational service that all the med students attend each year.
My friends think it's a little nuts how happy I was to find this program, but it has brought me a lot of relief. I like knowing that my body will be put to good use. I like knowing that my parents have the number to call and the body will be taken care of. I like that they won't have to deal with a funeral home and pick out a casket or whatever. I think my mother will probably still have a service of some kind, but I've told her that's for her and she can choose to do it however she wants. . . I'll be gone, so it doesn't matter to me if she wants to do a church thing or outdoor party or anything.
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Cool breeze - not a Brad fan, but im plotting my Gerard Butler weekend, lol.
I do appreciate your words about still being Stage III...it resonates. Unfortunately my odds are a bit lower due to TN and chemo resistance...probably 20-30%. So I'm trying to be prepared...but I do have still have hope!
And if I'm lucky, a weekend with Gerard... -
All of you ladies are amazing! When I thought I was on my way out last year, I did the health care directive, cremation plans, and will from my hospital bed. And I lived!
At least I don't have to worry about all of that paperwork now. But I am worried about what will happen if I become very ill again. I'm not married, but I have a sweet partner of many years who saw me through last year.He's freaked out whenever I talk about death or dying. I don't want him to have to take care of me and watch me deteriorate, so I'll probably end up in a hospice house. Not sure how I feel about that either... It all seems very surreal. I have lost both parents and many others along the way, so I'm not unfamiliar with death. And I'm not in total denial because I address these things but still... wow... anyway... I'm currently NED and holding on tight!Love to all...
Rose.
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petjunkie, i felt the same, sad that i couldnt do organ donation..i like your idea, i am glad you found something you are happy with.
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Pamin..I understand how you feel. No one wants to talk about this stuff but us it seems.Something I do for those I know love me to pieces but cant handle discussing my funeral etc is that when we are all together, say at a party or just chatting while playing cards...I will bring up someone else who has passed. While speaking of their funeral..I just casually say things like how much I liked that type of service. Or which funeral home is my fav etc..Just over time I do this. I have a sis in law who I know will remember these things. I am certain she will be a part of planning services etc. She will make sure my clothes are all matched with my earrings, etc. LOL..Other than my hubby and kids all I have left is cousins and an uncle. I have 2 cousins who have been there thru thick and thin but one of them is technically sicker than I am. She has lupus and her kidneys are starting to fail. So my hubby will most likely turn to his sis for help. His sis also had a great idea that I think I will help get started. She thinks it would be great if instead of waiting for each of us to pass away...give eachother some special momento now. Maybe even give things like that at xmas instead of store bought gifts. I have some things picked out for her specially since we have gone thru alot together. HUgs and LUvs, Mazy
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Coolbreeze, be very careful. If you're in California, and you have no will, your husband won't necessarily get everything, since you have children (for certain types of property, he'll get half, if you have one child and a third if you have more than one!). Chele says she doesn't need a will since she lives in Kansas (apparently she likes the distribution provided for by the intestate succession statute there.
Every state's version of intestate sucession is different. If you don't make a will, the state supplies one for you (in the form of the intestate sucession statute). If the intestate succession statue changes in your state, so does "your will" (if you haven't made one for yourself). If you decide you don't need a will, be sure to monitor any changes in those laws!
There are other advantages to having a will (even if you do like your state's intestate sucession statutes). You can choose your personal representative/executor. You can provide that they can serve without bond (if you like); otherwise, they will have to purchase a bond to protect your estate, and typically the cost of the bond will come out of the estate. You may or may not want a bond to protect the estate, but if you don't write a will, you don't get to choose.
You may want particular things to go to particular persons. That's not something that can be accomplished if you rely on the intestate succession statutes. Please consider consulting an attorney in your state about whether you should want a will. Your state's bar association may publish a pamphet on the subject, as well.
Best wishes to all of you!
LisaAlissa
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I don't even know where to begin. I don't raise the issue and my wife doesn't raise it often either. She has no will. We have life insurance....when I was 32 my 30 yr old wife died from complications in child birth, so I made sure we both have insurance. We still have two kids at home, 12 and 15. Not gonna say money won't be an issue, but I will be able to pay off the house and should be able to pay the bills from my income. I have a good job. We need a will but I havn't wanted to broach the subject. A living will also, because she has told me that she doesn't want to hang on at the end...but that hasn't really been defined. I have no idea how my bride would want to be burried, or where.I know this needs to be discussed, but I don't want to bring it up. We are planning a vacation with our children (including the 21 year old) at the end of the year. My wife is also applying for a promotion. We spent the evening tonight going over possible interview questions. Maybe we are sticking our heads in the sand, but I am glad she is being positive
I know we have to deal with these things because her health could turn on a dime. I just don't know where to start. Or how.
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hi pizza dad, i just want to say feel free here to discuss anything you want to discuss, i know ma111 wants a place where we feel free..so do i
You have had it hard, and i wish you many more enjoyable years together with your wife. I wish i had someone like you!, willing to be a true partner, even when it comes to the hard questions, and things that need to be addressed. A living will is a good idea..i have mine in a draw ready to fill in with my gp when im ready..its hard isnt it..i forced myself to write a will with my brother, who came down from queensland to help me get those things happening...one step at a time.. -
just want to add, i said NO to my appointment this week with my psychologist, and felt great about it. I want some me time. I have had 9 months of appointments/referrals/scans/sessions with her..im taking some time out to think about me. and do nothing, if nothing is what i want to do
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This has been a very interesting discussion. It seems I always see things differently. And this may have been mentioned before, but here's what I'm doing...get the plot, and the funeral home and I wrote my obit since I know DH wouldn't be able to name some of my relatives. DH and I discussed and said he would want to plan psalms, readings, planning other stuff because really, I'd be gone and the funeral is really for the loved ones left behind and that he wants to plan it because it would help him grieve...by planning and deciding what he thought I would have wanted. He said if it were all planned, he'd just go through the motions of going to a funeral and not be involved. I thought that was pretty cool and I'm totally okay with it if it will help him and my kids.
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Just FYI.....a durable power of attorney for healthcare is more important than a living will......at least here in Ohio. A living will only comes into play if you are declared brain dead by two different physicians.
Like I said this is the case in Ohio.
Lori
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Apologies, Off the Topic:
Lori, I didn't think you meant it that way at all. I know you know about IBC and what it can do and how fast. I wish neither of us had ever heard of such a thing, but you are braver than I. The info available about IBC is scary, sad and depressing, like the 12 yr old girl who died from it. I really believe IBC is caused by injury, including surgery, to an existing tumor - I think my injuries were caused by my mountain bike wrecks.
The other reason is that the best and newest knowledge about IBC isn't necessarily available yet except to networking healthcare practitioners, with the two clinics it's changing so fast.
Anyway, please forgive me, all, for hijacking the topic, especially such a vital one.
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Steelrose! I KNEW I forgot something! I'll have to find a hospice house that takes nearly indigents, though. But I'm sooooo with you -- I do NOT want my Pack Rat to see or deal with what's left of me if I get all debilitated!
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Petjunkie- i love that idea! i wonder if them Huskies would want to come get my body from texas??? (i am a transplant org from Oly...) Maybe they can learn something that saves a million lives!!!!
Pizzadad- its not really sticking your heads in the sand as much as living life to the fullest. I am 28 mother of 2 and my youngest starts school this fall, what do you think my stage 4 butt will be doing???? If you guessed going to college to get my RN degree (or whatever they call it) you'd be right. Its a 2 year program and right now i am feeling well enough to go to school, so i am!!!! Oh i know that i might not "make it" through my class but eh what if i do LOL
Lifestooshort- great perspective.... i am glad your husband told you that. i think i will plan everything for "just in case" so if he doesnt want to do it he doesnt have to, if he does then no worries
I dont think i want my kids to see me dying, but for clousre it might be best...
who knows we'll see how old they are when the time comes- if they're still this young i prob will go into hospice... I doubt my husband will let me though- he doesnt even want me going to WA for a 2 week vacation (bought my tix today) he is already depressed that we are going to be apart for 2 weeks- come on we've been married 10 yrs 2 weeks isnt a lifetime! LOL -
Hospice can be done in home as well and that costs less than doing it in a hospital. Depends on the family dynamic whether that's a good idea or not. My neighbor who recently passed away had in home hospice and died at home. It was a great comfort to his wife. Insurance(private, Medicaid or Medicare) can cover hospice or palliative care and from my reading, many hospices also try to assist those who don't have insurance or limited income.
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Suze Ormand has a site that I used to do my will is how I did my will and I change it often....I love that you did this cause we need to talk to others that feel the same as I..
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Thank you for that info, Chickadee. Still don't want my Pack Rat changing my diapers or wiping my drool though. I hope I die before it gets to that.
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Pizzada,
I log off to think of a response. You are a very loving husband to want to know what your wifes wishes are. For me, having my final papers in order was a stress relief that lifted a ton of weight from my shoulders. It was than that I felt I could live life to the fullest. Your wife might also be thinking about how to start the conversation and may not want to upset you. Maybe start off with saying; "I will make sure your are as comfortable as possible". If she wants to talk about it that might just be the opener.
What do the rest of you think?
In regards to living will, the PA laws kick in when you cannot speak for yourself, you do not have to be brain dead, brain mets counts as not being able to speak for self. The idea of going to a site with state specific laws is a good one.
Thatlife,
I have skipped more than one psy appointment. Sometimes it feels good to be in control and take me time. We need that now more than ever. I get tired fo playing patient all the time. This week I told my onc we are going to every 3 weeks on the Herceptin.
I also don't want anyone one to change diapers or wipe drool. Brain mets is the fastest death, hmmmm.
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pizzadad..after talking to my brother about all the loose ends i hadnt organised, and which were bothering me over the phone one night, he suggested, as i mentioned earlier, that he come down, in about a month, and we would get through some of the crappy things that were on my mind...it was good in that i had time to get ready for it, and was so relieved to get most of it out of the way. When he left, i felt much more in control. So maybe, an idea would be to approach it like 'why dont we organise a weekend to get all the wills/POA/wishes out of the way, then we know it's done, and we can focus on our holidays, and the future'..or something to that effect...
ma111...yes, its good to take control for once, and get off the merry-go-round
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Lena: i admired your stand on the other thread..
i recently asked my best friend from 30 yrs ago, who was also my first serious BF at 16, to administer what is necessary when the time comes (with hospice nod) so that i dont 'linger'..palliative sedation i think its called, and he was happy to take the role on...but my vanity is now thinking, do i want him, who loved me as a young girl, to see me and spend time with me at the end?...who will shave my tamoxifen whiskers before he arrives??? lol....so am reconsidering...im thinking, hospice outside the home, as i dont want my 13 yr old to have to peep in my door every morning wondering if im alive, (at whatever age she will be) as i did with my mother.....and just professional staff to help me...its a hard one..
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that's-life - the in-home hospice is something I struggle with, as there are no free-standing hospice centers within 30 minutes of me. I want to have access to my family and vice-versa at the end, but I'm afraid of it being traumatic for my kids, and then they'd have the memory of me dying at home...
Is it possible to do in-home hospice, then go to the hospital at the end? Is that even preferable? -
Lena! NEARLY indignent? I'm there!
Maybe we'll start our own Hospice House. Doomy gloomy indignents only... love it!. I try to keep it upbeat, but man, this cancer is ****!!!!Texasrose... So fantastic that you're getting that degree... no limits...
xoxo
Rose.
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Thank you for starting this thread.
I think planning for something you know is inevitable, and not just dumping it on the survivors to deal with, is not only practical, but a great act of kindness.
It is also a relief to be able to talk about these issues that most others in our lives understandably want to avoid. I also enjoy the humor that runs through these posts. I'd be lost without that.
Hugs to everyone,
Rachael -
Oops, Lena... "Indigent!"
Yeah, well, me too... it's getting gloomier by the minute!xoxo
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Lena and steelrose,
So sorry to hear that you guys are in the gloomy phase. Praying for you that you are as comfortable as can be.
Suzie35,
It is very much possible to start at home than go as an in patient. Most hospice have both for that reason or you could go to the hospital.
One of my biggest fears is that part taking too long and being just totally miserable. I hate thinking about that part.
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I think I wouldn't want to be at home with my family. It would be much tougher for them never being able to get away. I do fantasize about dying by the sea (which would be far from where I live). I read about a woman dying on a boat during a sailing trip. I think that was a story in Dr. Susan Love's Breast Book. There is something romantic about that.
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My family are having a hard time believing that I am going to die, that I have a terminal illness. I get all the time 'but you look so well!'. I feel like screeming at them but that would be a futile exercise on my part.......all I can and do do is let them know what my wishes are little by little as they become open to the suggestion. The rest is up to me to make sure that I have all things ordered in such a way that it is easy for someone to just step in and carry on. I am, over time, cleaning and sorting all of my possessions so when need be, my daughters will be able to dispose of things easily and in order. I have so much craft goods that I will let them know that I would like all of it to be donated to a charity that can use it to raise funds. My jewellery etc has already been designated as to who is having what so there will be no arguments. I have a trunk full of things that belonged to my son that I have put away for his son and this will be put in the hands of my eldest daughter to give when she feels that he is ready and responsible enough to have it. The household will stay as is and will pass along with my car directly to my DH as is the law here. I have discussed what music I want played at my funeral with my eldest daughter as I know she will remember (she has a memory like an elephant.....never forgets a thing). I have already reistered with Paliative care so all I need to do when required is to make a phone call and all with be put into action. We have spoken of the 'Plan' for later and what I would like to happen but of course that totally depends on wether I am able to be at home. It will I think all change should I need to be hospitalised. The rest, I think, will be a day to day thing and hopefully the days will be many.
Love n hugs. Chrissy
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I love this thread. Its so comforting that I can read your post and feel that same. I have 2 children and I struggle with the thought of passing at home. My mother died of breast cancer and spent most of the time at home. She was on oxygen 24/7 and seemed to be uncomfortable. It was a struggle for my dad and younger sister that still lived at home with her. Her last 3 days were spent in the hospital. This was 17 years ago. My sister & dad said it was very hard. I was married and lived 30 minuets away. Visited everyday but its not the same as living with her. I feel that our home should be a safe haven and something not filled with sadness. I have cleaned out my jewelry box (of junk jewelry) and closets of things that do not mean anything to me. I told my husband I want to be cremated and have the urn at the funeral home, no coffin or body. After that I want them to do what ever they feel they can handle. My feeling is there is no right or wrong I am already gone and anything they choose won't hurt my feeling or be wrong.
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thank you for this thread..
I am fortunate to have an organized husband and we have addressed many logistics. I will talk to my kids about home hospice.. They are very familiar with it actually.
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DH and I have been working at the paperwork end of things for a couple of months now. One resource I've used in the past and even my atty today says is good, is Nolo Press, a great self-help legal group, with several state-specific items. They have everything - I did my own divorce through them back in 1975. I am now ordering "how to be an executor" book for our nephews who will be our executors, and sticking it with the final papers. You can find them at nolo.com.
My best to you all.
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ma111, don't worry, I'm ALWAYS gloomy! That's part of my NORMAL personality, it's not all on account of the cancer. I suppose it helps to be gloomy now that I DO have the cancer (when you think the worst and it happens, you're not so surprised and disappointed, but when you think the worst and something GOOD happens, it's a really pleasant SURPRISE!), but no, I didn't suddenly turn into a cynical, bitter pessimist upon hearing the doctor say, "You have inflammatory breast cancer. It's Stage IV." I already WAS like that! LOL
Actually I just GOT about an even amount of mixed occurences, so here's a perfect example of it:
1. When I was told I had to have a BMX in May, I thought my whole summer would be shot due to having to recover from it.
2. As it actually happened, the sequelae of the BMX (plus removal of some skin mets on the skin on my right ribcage area) has been turning out not nearly as bad as I thought, and no, recovering from the surgery will NOT ruin my summer. I even got to start my container garden. Oh, and even BETTER? My surgeon told me that as far as evidence was concerned, she got ALL the cancer out, and she goes on to add that with this serious reduction in the tumor burden my body was carrying, I might actually feel some physical energy soon. Key words here are, of course, "as far as her evidence is concerned," which now brings us to:
3. She says I really need to have rads on that area where the skin mets were, and she's positive that if I don't, they and probably more just like 'em will be popping back up again within a few months at most, and I know my oncologist (who I have an appointment with next week) will back her up strongly, since she (my oncologist) has also occasionally whispered the word "radiation" since I showed her the first skin met.
Conclusions:
A. Did my surgeon say RADS at the same appointment she said "physical energy"? I guess I'm the only person who even notices things like this. Sooo, I was right the first time: My summer IS going to be ruined, even if it's rads that ruin it and not the BMX. I mean, how is being exhausted at best from rads, between the rads themselves and having to drive 60 miles a day round trip to go get them, for however long I have to go for treatment. Still waiting to be scheduled to see the radiation oncologist though so I don't know the precise details of my dosage, number of treatments or for how long I have to get them -- going to allow me to enjoy the summer or get some energy going?! I mean even if ALL I get is tired -- which would be "good" because I really have very fair, hypersensitive skin as it is -- like how much time am I going to have to enjoy and how easy will it be to make plans to, or actually do fun things, i.e., actually live my life while I still have it -- if I'm constantly tired plus busy every day driving to and from the cancer center?! (and THAT's ONLY if it goes GOOD: i.e., no skin issues in the treatment area.) And no I don't like to drive, so that won't be "fun" I can mix up with the treatments.
B. You see, I was right from the get-go on this. My summer is going to be totally or almost totally ruined. Good thing I'm so negative! LOL
If I was one of those cheery optimist "hope" types, I'd probably have gone insane having all that hope smashed against a brick wall.
So OK, back to the Gloom and Doom... LOL yeah steelrose, "indigent." Don't tell me you already have brain mets...! :-O
Anne -- yup, I know what you mean -- "let them" (them being those you leave behind) do what they want with your cremated remains. I suppose I'll actually need to clarify more that kind of thing in my will (when I finish it: still haven't gone back!). I mean it when I say that I personally don't need or want a funeral, so that's why I won't be planning one or leaving any kind of guidelines, but if there's anyone who WANTS to have a funeral or memorial service of some kind because it gives THEM closure and makes THEM feel better, it's OK and they can do what they want. (Like I'll have any control over anything after I'm dead! HA!)
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ma111 - thank you, that is reassuring.
Chrissy - I hope that my family will agree to palliative sedation early on, rather than waiting. It is something my mother will understand, but she won't talk about it much with me now
.Anne - I agree home should be a safe space. I want to spend as much QUALITY time as I can with my family, but when things turn, I want to be able to go to the hospital. I can only hope that is the right choice. I also want to be cremated and have the urn at the funeral home. After that, it is my DH's choice - he can have me interred at the cemetary with my grandparents, or keep me around until he is sure he is settled. He would likely move to be closer to his parents.
Thank you for the link Lost_Creek - I will check that out.
Some things I HAVE started doing are journaling for each of my 3 kids, mostly day-to-day stuff but I always try and sneak a "life lesson" in, hopefully not too obviously. I've also gotten three plastic bins and started putting things in for each - pictures they've drawn, notes they've written, art projects. Things that mean so much to me and that I want them to have. I also had my wedding dress cleaned and packed for my daughter so she'll have it.
For those that have lost a parent, would it be too difficult for my children if I bought them things for throughout the years? For example, a cute outfit for my daughter for when she's older? Gifts for birthdays? Cards? I just so want to be a presence in their life regardless, but I don't want to make it any harder.
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I like dying on the boat.
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Just wanted to let you all know this regarding Hospice. My psycologist encouraged my husband and I to get our questions together and visit our local Hospice - we did this about a year ago. We had an appointment there with a Nurse Practitioner and ask a lot of questions about in-home vs their facility (they only had 6 or 8 beds available at that time). They seemed to indicate that these facility beds were saved for certain situations. We probably spent 2 hours there with our questions - I think it helped my husband a lot.
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Several years ago I saw an interview on some TV show of a father and daughter. The topic of discussion was the letters the deceased mother had left for the daughter. Very interesting. After much searching and googling I've found that it was Rebekah Gee and her father, who is Pres. of Ohio State. Google Rebekah Gee Letters from My Mother. Tried to put a link here, but couldn't get it to work. Maybe someone else can. Couldn't find what show - but at least I know I didn't dream it. My memory is that the letters were both a blessing and a curse.
I do not want to die at home. Even with Hospice (at least, our local Hospice) family members are the caregivers. No way do I want to put that burden on my only surviving daughter. My dream is to live at home, pain free (thanks to hospice) for several months and then go to hospital and peacefully check out! We'll see.
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Anne- you said it- our homes should be a safe haven... even tho i live in an apartment (right now) i dont want my kids to thing "thats the room mom died in" refering to which ever room i am in... Thats why being away from home makes sense to me right now... maybe in a few years that will change....
Lena- Yeah i hated every minute of the ride to rads which for me was 45 minutes each way... It sure did take a lot out of my day! I would say cancer did ruin my summer last yr when i was first dx because i had bought water park tickets (season passes) for me and the fam in feb- pain got really bad in april, dx in july with cancer, everytime we made it up to the city with the water park (3 hrs away) it was to see which ever dr for whichever scans. We ended up ONLY going to the water park 2 times! Very bummed out over that. This yr we got sea world passes and i dont give a crap what i feel like i am going NO MATTER WHAT lol (i have my days where i am miss gloom and doom LOL) BTW i dont think it was the rads that made me tired but the LONG drive!
Suze i wonder that too- like could i be hurting them more to leave gifts behind or will they look forward to it and see it as a positive...
Alpal i think this is the artical you're talking about http://www.dispatch.com/live/content/local_news/stories/2010/06/06/letters-from-mom.html
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Thanks so much!
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i teared up reading that artical... it just reinforces the fact that we are so important to our children- i think had her mom not written her those letters she might have had a harder time coping with her husbands death... Her mom gave her the coping skills after she passed...
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One of my friends mother dies from cancer when she was young. Knowing I am stage IV, she told me how much the letters her mother wrote to her mean to her. She said when she really gets to missing her, she gets them out and reads them.
I also do not want to die at home as I think that would bother my daughter who plans to live here. One statement she made was also "I'm I going to come home and find you dead, what do I do?" She is 17 now, but still too young to have to deal with much from a dying mother.
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I noticed all who said they didn't want to die at home mentioned that they thought it would be a burden or upsetting to their loved ones. I think that opens the door to talk with the family members about their feelings.........they might agree or perhaps they would consider it more difficult in a hospital setting.
I think the person who visited and talked with Hospice folks made a wise practical decision. Visiting a hospice and talking to hospice workers when the time is right would give us the full spectrum of information to make a decision on.
Personally I dislike hospitals with a passion and I think I'd prefer hospice support in my home but I'm nowhere near that decision yet, but it's food for thought.
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One thing that I find amazing about Hospice workers (and over the years I've talked to many) is they really feel strongly about what they do and like what they do and believe in what they do. One of the best nurse practioners I've ever met was a man named John at my former Onc's. Prior to that he worked at Hospice for many years.
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Alpal and texasrose - thank you for the link. It gives much food for thought. I think balance might be the key. Special letters and gifts for the big milestones, but maybe not for every year. Ugh I tear up just thinking about it :-(.
Chickadee - if my kids were older, I'd stay home no question. But they are so young, I worry about the impact of knowing "mom died in that room". My oldest (10) already believes our rainbow bridge doggie sleeps with him at night (and hey, she just may well!), they are so impressionable.
I'm not near this yet myself, but I know that can change on a dime. I truly appreciate you all talking about this with me...I'm "still" Stage III, so my family won't yet listen, but I'm so close to Stage IV, with an aggressive pathology, that I can't help but feel the need to talk.
You are all amazing. -
So I guess, I am the crazy one with all the cards, letters, gifts, videos for my kids! I do worry that it will be too morbid for them so I told my husband to do what he feels is best for them. They are all there and can be shared when appropriate.
I have made a point to talk to people (mostly women) who have lost moms at a young age, and they have all said they would have liked to have more things like this from their mom. I have completed a mom legacy type journal.....it has a few hundred pages of questions for which you then write a response. You can get one at Hallmark. One woman told me that she has so many questions about her mom....simple things like her favorite colors, what her first date was like, etc, but had no answers. This "journal" takes care of a lot of that stuff,
My kids are so so young that they will likely not even remember me at at all (especially my daughter). In some ways I think that it will be easier on them that way. (sob sob)
Thanks, all. Great topic even though I hate we have to think about all of this stuff.
Lori
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lorieg: i think we instictively know the right thing to do for own children, based on the type of people they are, so if you want to do what you are doing, maybe that is the best you can do for your children..go with your instincts, nothing is right or wrong...xxxx and thankyou for the hallmark idea, and those simple questions i would not have thought to write about, but which i see i would have liked to have known about my mother
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Lori - I'm completing a similar book "The Story of a Lifetime". It asks everything from favorite color to thoughts on religion, very comprehensive. I agree, i want them to know the simple things, as well as the complex. And I think we all as moms should follow our instincts. There is no wrong way to do this I'm beginning to see. My baby girl is also so young, I don't think she'd remember me. Easier on her, but I agree. SOB!
I thought of another thing I'm doing - I am collecting DVDs of all of my absolute favorite movies for them to watch one day, like every Monty Python flick. I hope they get a sense of "me" that way. -
I actually have 17 year old twin boys and 3 older kids in their 30's and I wonder how I am going to handle it, I also have grandchildren. I want to do video tapes and i want to write things, which I started a couple of years ago.
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Lori,
I love the book idea and plan to get one for my daughter. I really think she will like that.
I still haven't written any letters. I want to do one for my funernal, her college graduation and wedding. Than the book I have to go get.
I like the ideas.
Origanially I was planning an in patient hospice, but some good points were brought up. I will have to reconsider what would be best for my daughter and not just assume I think I know.
I should visit a hospice as someone else did and discuse the subject with them. They can start in the home and they probably would know what would be better for my daughter come time.
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Lori- No you're not crazy for doing all that, but loving your family! I like the idea of the legacy book. Next time i am near a hallmark i will see if they have it, if not i will order it online.
I havent seen my biological dad since my parents split when i was 8 (so 20 years now) He is living but i wonder the same things, like do we do this or that the same, what does he thing about diffrent things. Heck i dont even remember what he looks like but in pictures and i have few memories of him. (He was in and out of jail a lot growing up) ANyhow after my dx i tried looking him up and sending letters to a few of his last know addresses. SO far 2 of them were returned to sender.... Anyhow its not the same thing because if i really wanted to i could hunt him down (we live 1500 miles apart) , but for those whos parent passed away you will NEVER be able to get the answers that you want.... So leaving behind a legacy book or something like it is great!
Blondie- I think with your grandchildren maybe compile a few videos of y'all together, (i am assuming they are young because of your children's ages) They wont remember things before age 3 or 4. Regardless of the possiblity of death. I think having those videos would be a treasure.
Ma- agree talking with someone that works in a hospice would be beneficial to us all concidering it. And there isnt a cookie-cutter death plan out there- like someone mentioned on the last page we each know our families and know how well they can handle certian things....
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I like the DVD idea!
The book I referenced at Hallmark (name escapes me, and it is in our safe!) covers simple topics up to life philosophy type stuff. It took me a while to finish it. Every Hallmark I have been in has it in stock. They have one for dads and grandparents also.
Lori
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Texas- I'm sorry about your dad :-(
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I didn't lose my mom when i was a child, but I was 22. I wish we would have talked about death, we knew she was dying but it was not discussed. I wish I had letters, even at that age, I want to remember her handwrtiting, I have nothing of that sort, just photos. I would love to hear a recording of her voice, of course when I lost her, technology was alot different, but there where some types of video. I think we were all in denial, she died of ovarian cancer, and was diganosed as late stage. It's been 22 years, I think of her all of the time, I miss her smile and her fun loving spirit. She died in a hospital, not at home, I think I was old enough to handle her dying at home, but she felt more comfortable in the hospital. At this point,l think of all of the good times, and even though I lost her at a somewhat early age, I was thankful for the person she was and thankful that she was my mom and that she was around for 22 years, I would have loved more years with her, we were at the stage where we were becoming best friends.
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Lori- his lost not mine
i live quite a bit aways from the civilized world LOL so next time i am in the city i will go to the hallmark store - really neat thing: my mom got me the chicken soup for the teenage soul journal when i was 16 or 17 and i filled most of it out. Recently i was going to toss it but my husband suggested me keeping it and letting my daughter read it when she is in her teens... I just remembered that...BKJ- Sorry to hear you lost your mom. Thanks you for your input it makes me see the importance of leaving things and such for my children. I def am going to record me talking and singing to them (i make up these silling songs which get them all riled up LOL
All- Since my dx i have been tring to get rid of things, i had a few boxes of baby clothes saved because i couldnt bear to part with them, well my sis suggested taking a picture of the items that meant the most and then scrapbooking, but i did one better check it out http://youtu.be/E_MsPB5NSs4 (i am going to leave this link open until monday) Surprisingly i was able to get rid of 2 boxes worth of stuff and these were the only ones that i took a pic of to save.
Its not the best quality or anything but it was fun to do- i cried while doing it, but i like the end result!
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Hi
I'm looking for advice - my friend is in a hospice nearing the end of her life. She was diagnosed with stage 4 breast cancer 3 years ago, then mets on her bones. The latest brain mets were discovered just after Christmas. Her oncologist has said that she will receive no further treament and to try to 'enjoy the summer'. I'm struggling with knowing this when she doesnt.
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Circleof3,
It's nice she has a friend like you. I think she would know.
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I'm confused, if she is in hospice then one would assume she knows.
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i dont think so chickadee, not really. she went in initally after her hip replacement last november when she wasnt well enough to go home but the hospital she had the op in needed the bed back. She lives alone with her 13 year old daughter. Of course she knew her care would be mainly palliative with stage 4 but we've never had the what if conversation. she may know deep down but how can i bring up the subject if she doesnt and then walk away and leave her to her thoughts in the hospice??
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Circleof3,
Talk with her nurse at hospice, she may be able to give better advise than us, as she knows her.
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texas rose: it was an honour to watch your link, it made me cry, it is beautiful, and so are your children xxx
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I just went at one point in the past and prepared a last will for each of us, signed two friends as witnesses and gave Olga to sign hers. That's it. It was over in a minute. In Ontario it is VERY MUCH recommended to have a will, otherwise the surviving spouse will go through the hoops with the government and they might even restrict your account access for half a year. No need for a lawer, thankfully.
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Timothea, what a wonderful video...
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Circleof3, please talk to the hospice nurses, they have experience with such issues.
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thanks yan and thats-life
i think i should check the laws here where i live. really i fear my parents would make a hassle for my husband over my kids- i dont know why they never made a mention or anything about it, but i feel that they will try something weird like that....
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LisaAlissa, I am in CA and have no clue what any of your post said. But, I got the message loud and clear. Get a lawyer.
Which I will. I don't have much but whatever I have I want to go to my husband and kids and not the State of CA. They got plenty over the years.
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That's LIfe-----hi it's sheila the stethoscope sheila-----. You, I know are in the process of finding a knew counselor. Either you or someone else described who , what , why etc about what the person should be. Please, recontact whomever gave you that referral and review with them why they shouldn't make referrals to this person. She is completely inadequate to the needs, that you asked for. The importance of this is self evident, she might waste someonelses money and time. Also , puts them on notice that they blew the referral-------they didn't meet your need.
Someone wrote about putting another person on their bank account. I thought that was the way to go. But it is state dependent. Native Mariner pointed out that in her state(Maine?) all accounts are frozen until a determination as to how that money is to be allocated thru the will. I did it with my son so he could access my accounts, should I become incapacitated and ASSUMED it would automatically be his. But below is away to assure that the funds are immediately available to survivor designee--------check with your bank or credit union to see if it is allowed in your state.
After 9/11 banking laws were changed, you could add either TOD transfer on death or POD payable on deathof the primary account holder which is the first name on the account to the designee. This was changed because so many, effectively, young people died with families not being prepared. Prior to 9/11 tod and pod was not available on bank accounts.
Tod/pod can be used on so many instruments, and only takes a phone call to each institution for the proper form. My husband and I always made that a part of the discussion -----is a beneficiary /tod/pod listed. We missed one small stock on his. That will take years to settle now because I have decided to do an asbestosis claim.
A Wll under all circumstances is needed. For example. Everything is defined in a trust, But something unforeseen happens i.e something that leads to litigation post death that is not covered by a trust. A Will will allow for distribution of monies received from a litigation where as a trust might not. A Will and a Trust
In my last job we took the max amount of offered life insurance. We both developed CA. His was not continuable ,because he had Ca, once I was terminated for medical reasons. Bummer. Point is reread your company life insurance polices for the small print. Mine can only continue as long as the LTD people believe I am disabled-------even though I'm disabled by soc sec permantently. The LTD company carrying the insurance can declare otherwise and negate the policy ( fine print). So, looks very good, until the fine print readable with a spy glass.I have been waffling about my will for months b/c I can't get beyond how to divide the assets if my son predeceases me or within 30 days of me , if he has no lineal descendants. DUH- I'm worried about someone being mad b/c they didn't get left something and someone else did. I should be able to say , I don't care I'm dead. ------------I know LOL. But it has kept me from completing a very important document. Check with your lawyerMake sure that your power of attorney paper has a statement regarding guardianship should you became incapacitated. Declaration of Guardianship has great importance should someone fight for control of you in an incapacitated state. It has stronger legal power than power of attorney. Put it in the same document and all should be covered. The Shiavo case is a good example. Check with your lawyer Review insurance policies, to see how much you have , sounds logical, but until my husband died in 2010, it was a surprise. We did our policies when we were young, with the idea that the other would continue working. Didn't plan on disability. Mutual funds/stocks---tod/pod/beneficiary review. Remember we missed one little stock.Should either of you die remember to change beneficiaries on everything. I was amazed in the whole process , no one suggested this to me. I had to figure it out on my own brain anguished self.Make a single list of assets, that will become a check off sheet for whomever has to do the estate. Makes it so easy to get through the material. As you progress through things make your executor aware of what you have done in case of your sudden demise, they are not at a loss of where to begin with things. My son is tolerant of these discussions , but you can tell he rather not have them. Make sure they know where to find the safety deposit key and are a signator.Spouses of deceased are eligible for many things. Check with the Local social security office ---don't depend on what the 800# folks tell you. Also, there can be a reduction in property taxes --call the county tax appraisers office, there can be a reduction for disability also. It can be simple if you talk to a real person. WE lost thousands over the years because we did not know about eligibility. Again, donating to county coffers.Cars if your going to transfer titles, make sure how you want to do it. I didn't think it through properly and it will be several hundred dollars donated to county coffers in the next go around. Check your insurance policies for a disability clause----should you become disabled your premiums may be paid by the company with the proper paperwork suppliedI'm going to post this now b/c to rewrite would make me crazy and we have had fairly frequent power surges in the last few months. Hope something here helps someone. All has been learned through happening/exposure/ etc. I am not a lawyer , so all rec's chould be checked with your lawyer. L&H's sheila -
Don't know what the deal is with the address and / ><---------it came up in the post . I went back in to delete them and they are not visible to me to delete--------probably government because i mentioned 9/11.. I'll give it one more attempt. EDIT____VERY INTERESTING----------they don't appear in my view in edit , but there they are?????????? And whole separation of paragraphs are different. I'll contact the Mods for an explanation.
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I live in Illinois and our wills are written so that the spouse has immediate access to all accounts and is made available to our kids immediately if my hubby and I die at the same time etc. My mom had me added to her checking account and I had immediate access to that account after she passed away. I did have to present her death cert and will when they found out she passed but that was all. Her name has to stay on the account for at least 2 yrs in case any checks get issued to her because the bank wont deposit them unless her name is on the account. I'd have to go thru a lawyer otherwise.
My kids are not on our on checking account but when we die all they have to do is present the death cert and will, fill out some paperwork and have immediate access.It does help if you have banked at the same bank for along time because they know you. Our bank knows our whole family and would make sure everything goes easy. Hope this helps..Hugs, Mazy
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oh sas, it could only happen to us lol (re strange typing issues lately)..thanks for that wealth of info, im sure it will be beneficial to many...it was thoughtful of you..i am sorry to hear you lost your husband x and thanks for the advice re the person i was seeing to help deal with the diagnosis...9 months of it, wow, till i realised my time could be spent in a much more peaceful and sometimes fun way
the wonderful ideas that are coming in here are inspiring me to get going on the emotionally hard stuff, like photo stories, dvd's, thanks all. Last night i saw my daughter hug the woman who will be having her when i cant any more, it was a long hug, she doesnt hug me like that, it was a powerful moment, comforting in a way.
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That's Life------There have been many great suggestions here. The memorabilia things---yes I can do those.---------
I contacted the Mods re the strange stuff in my post_________-she assurred me the government had nothing to do with it. There has been maintenance going on and it can occur if you type off line then post(I didn't)
Mazy your post is specifically why I said check in your state and with your own lawyer-------because each has there own rules. I was really surprised when Native Mariner said the accounts were frozen. That would make final arrangements VERY difficult. How do you pay for things if access isn't there. Whats interesting Mazy about your post is yes you are presenting a death certificate and a Will. A Will can look official, but that why Wills are probated. The court declares that the Will is the document. I can have something notarized and dated and witnessed and it not be the real document or final document it could have be declared null and void when a later document written. Maze -----the system seems to work in IL. It would be nice to think that no one would take advantage of the situation. It surprises me that there hasn't been problems. If it works , it works.
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SAS,
Great information, thanks, but sos orry you had to experience what you did with your husband. Than you were kind/strong enough to share with us to prevent our family from going through the same thing.
thatlife,
Even though that hug was comforting to see, it had to make you cry.
I am thinking about putting my house in my sister's name to avoid problems.
I also still need to write my daughter letters. That will make me cry, but probably be a stress relief.
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Ma1111-------------------problems if you put your house in your sister name-----she "Inherits your base" You are better off putting it in a Trust for her or less of a benefit into a Will because that will trigger probate. If you put her name on the deed>>>>say your adjusted base is 100,000. You may have bought at say 50,000 +plus relators fees + improvements made to the house. Your house will be given a fairmarket value by appraisal on the day you die. What if with the way market for land changes and where your property is located is now valued at > 1 million. If you left it to your sister by preferably trust(can help to avoid taxes) or at least Will---- They owe no tax because the adjusted base is established on the date of your death. If you add your sister now to the deed she inherits your adjusted base---. and it could ultimately cause her money grief. Not your Intent. Do A Trust-- Avoids probate---allows her to recieve the property without hassle, and you can define successor trustees should she be deceased at the time the instrument needs to be executed---------you are dead, she is dead>>> you have named next in line
I'm not a lawyer, consult a lawyer that is familar with this stuff. sheila
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l need to add that even if you have all the legal paperwork done weii, it is possible that your wishes will not be carried out as you had set forth. Many states have very week laws concerning misappropriation of the estate by the Trustee or Executor and nothing happens when it occurs even if family members obtain their own attorney to get the illegal actions of the Trustee corrected or to get the misappropriating Trustee punished and monies returned Because of that, if there are certain items you want to go to certain people, then give those things to your loved ones while you are alive. You will know they got them and they will know you love them because you entrusted them with you treasures. The possible alternative, if you leave the division of your property to a Trustee who may have no better intentions than the one I observed a few years ago, you have no idea who got your treasures. Family members who have just suffered a huge loss because of the passing of their mother also suffer injury in seeing a supposedly trusted Trustee thumb her nose at the deceased as well as the legal system. In addition in our case, the Trustee first helped herself to anything she wanted and then allowed her favorite from among the beneficiaries to take all she wanted...which was everything but the trash. The Trustee should have gotten nothing as she was not listed as a beneficiary and only the immeduate children were to share and share alike in the estate as beneficiaries. As it happened only one beneficiary split the entire estate with the Trustee. Another more painful aspect happened as well. The mother had wanted to be buried within 5 days of her death and if was included in her file on her funeral plans and discussed with the Trustee with several witnesses present. There were no questions about her wishes and the Trustee had promised that her wishes would be followed to the letter. The mother passed on December 19 which meant her funeral should have taken place by Christmas Eve. However, the Trustee claimed she could not have the funeral that soon.(all plans had been made for years and casket, grave, and.stone had all been chosen, paid for and had been waiting until needed) .that she had Christmas plans that she must attend to and her "accomplice" beneficiary joined with her in that. They set the funeral for two weeks ffrom the mother's death to the strong objections of all the rest of the family and refused to change it to the date the Mother had clearly requested. Family members were forced to endure that Christmas and every one since it thinking of their Mother and Grandmother's remains lying in cold storage , forgotton, while her Trustee and one beneficiary were fulfilling their Christmas obligations attending and giving parties. Then when time for the service finally came, her Trustee, the ugly sister of the family, got her final long awaited dig in against the beautiful deceased older sister by insisting all parts of the remembrance would be open casket although the two week passage of time had clearly taken it's toll on the appearance of the deceased making the visitation and funeral not recomebeded for youn chilfren. All functions sould have been closed casket if the Trustee had had any decency in her at all.
While this all may sound like a made up night mare scenario, all of these things did happen and most if not all could have been avoided if the Mother had given some consideration to the situation and soufght help from other family members or social workers who were available to her for this very purpose if she felt incapable of handling it all herself.
Some suggestions you may want to consider:
Give away what you can of you most important things while you are living.
When choosing a Trustee or Executor, avoid anyone who HAS EVER been shown to appear to have more greed than integrity....even if they were 5 years old when it happened. When some one departs this life owning even just a small amount of property, something unspeakable seems to take over the souls of certain people and they are possessed by a determination to own as much of the deceased's property whether or not they are entitled to it per Will or Trust; or whether or not they have a need for it You may want to speak with your bank about their Trust Department and what services they offer and what the fees are. While anyone can choose to take advantage of what they may see as easy money, the bank would help to protect the intentions of the Deceased in order to protect their reputation in that field. So if State laws are lax, non-existant, or not enforced in your state regarding inappropriate activities of Trustees and Exectors an independent Trustee from a business concern (maybe the larger the better?) may help support the intent of the will or trust maker.
Be sure that every Beneficiary has a copy of the trust and/or will as soon as it/they are signed, witnessed.and notarized and leave copies with a well trusted best friend, your attorney, perhaps a doctor or trusted, well known insurance agent would agree to hold a copy for you in their secure file on you. The more copies you have out, the harder it will be for some one to obtain and destroy them all. While a home fire safe may protect important papers in a fire, remember that the entire safe (unless securely and permanently fastened to your house) can be removed from your home while you are away at the doctor's office, etc.. This has been known to happen when one sibling wanted to insure their receipt of cars or houses, etc., and things such as bearer bonds or gold cons. Individuals lacking in integrity have been known to steal and destroy all known copies so that once the maker is deceased , no wills or trusts can be found. In this case some one may obtain a larger share of the inheritance by state law than the deceased had intended them to receive.
Needless to say these activities can be fatal to a continuing family relationship among family members. So if they can be avoided before they happen, the health of the family relationship is protected. In spite of this, untold numbers of families are destroyed every year by disagreements over inheritance following a parent's death.
These are all issues you may want to consider when it comes time to make or revise a will or trust. I wish my mother had been more open about her will and had not succumbed at age 94 to a many year long campaighn aimed at getting her to change her Trustee/ Executor because she was the mother I told you about above. I was powerless to help prevent what unfolded. By sharing this information with you, I hope you can be thinking along these lines and protect your family from this kind of devastation. I am sure there are other pitfalls that could occur. Discussing these issues with others on this discussion may bring up a wealth of information or pitfalls to avoid. My wish is that no one has to lose a parent and a family member at the same time due to the family member's uncontrollable need to steal everything a dying parent may own. Her nature was well known and conclusions on my mother's part that every one would behave and play nice when she passed on were at best naive. In truth, she probably was not in a sound frame of mind when she caved to my aunt's relentless campaign to change trustees. But those laws also are vague in my state and require a difficult court trial that would be de-moralizing and cruel for an ill or elderly person to be subjected to, if ability is challenged There should be a private and direct moral criteria for an attorney to be obligated to use if he should be asked to draw up new papers that change something as important as a trustee or beneficiary in a long standing document especially when that new "Trustee" is the one always attending all the meetings, speaking for the one who's will or trust is being changed and makes phone calls to the attorney regarding the trust or will when the owner of the document is not availabe and it is clear the call is not at the behest of the owner and the "Potential " new Trustee is clearly in charge of the "owner" and the situation. (When my mother was made to sign a new trust it not only changed the Trustee, it made it easier for the Trustee to have her declared incompetent. I know definitely that my mother would never have knowingly signed for that change. If it contains one change she would not have approved if she were operating on her own free will and knew what she was doing, why should I or anyone believe that the other change was one she approved of operating on her own free will?). We must lobby legislatures in all states for laws that protect the sick and the elderly as well as protecting their (duly prepared according to law) wills and trusts from those who would take advantage and choose to steal a deceased's property intended for others.
(I know this has gotten really, really long and I thank you for your patience. I couldn't figure out how to say it shorter.).
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sas and Karie - this is all EXCELLENT discussion on the legalities, thank you. I just assumed that because I have no real personal property, a will would suffice. But I will be sure to give away the stuff going outside of the family while I can still be here.
Question - I have a sizable life insurance policy, private - so no employment issues. Does that need to be treated in my will, or does that just automatically go to the beneficiary (my husband)?
Time for a lawyer... -
Wow - I couldn't access BCO last night and you all have been busy. Frankly, I'm lost and need to go back and read from the beginning. Suze - I can tell you that life insurance goes to the named beneficiary and should not even be addressed in a will. It is not subject to probate, either.
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Kari and SAS,
Thanks so much and I am so sorry to hear how your family was torn apart even though your mother wishes were know. That had to be hard to share with us. I will literaly take that information to the bank!
My daughter is a minor, so that why I was considering putting the house in my sister's name. It will now go into trust for my daughter. I do have my funeral planned, hopefuly it goes well. I did tell my sister that and told her what the plans were so that there are no questions.
You 2 have really opened my eyes when I thought I had my S------ toghether, I cannot thank you enough as I want things to go smoothly for my daughter and not have her concern with details. I am a single mom and trying real hard to make it as easy as possible. I also don't want things to cost extra money for the family, like extra taxes because I did the house wrong.
Thanks a bunch!!!!
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Suze35,
AFAIK, the beneficiary will get the insurance money regardless of the will. At least this is how it works here. You should verify that with your insurance company.
Take care,
Yan
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I would second what leprechaun has just said. I've had several occasions to talk with my life insurance company recently regarding accelerated benefits etc and found them very accessible.
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Ah the circling vultures. I have mentioned my brother is in Palliative Care for lung cancer. A few days ago his deceased wife's aunt showed up asking if he had made his financial arrangements. They stayed 10 minutes. This coming from an idiot whose idea of financial planning has been hanging at the casino. My brother has already had a visit from his lawyers when advised to do so by his doctor. I so wish he had more time. No commiserations please. Just sharing.
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Since I'm broke, guess I won't need to worry about the vultures. Silver lining? Hmmm...
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Beneficiary gets insurance here too regardless of will. HUgs
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Well I don't have any life insurance and hopefully Science Care will take care of everything and give me back to my family without them having pay for cremation, etc. My mother died when I was 32 and my father at 34....She died of ovarian cancer and knew it, we talked about everything when the money was she put me on their account she told me what she wanted which was to die at home and my father said no so she died in hospice, people pick who they want to be with them with they die, I walked out of the room to say goodbye to a friend of mine who came to visit and when I came back she had passed, sad but as I said we discussed everything....
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Thank you everyone for the input regarding my LI. I guess I was afraid to call the company, I know that is silly.
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Diagnosis: 9/17/2010, IDC, 6cm+, Stage IIIc, Grade 3, 8/12 nodes, ER-/PR-, HER2- -
I just bought that book mentioned earlier on Amazon. I have two kids but I guess they'll have to share.
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TexasRose, Your video was so touching and beautiful, it made me cry. I am so sorry you have this stinking disease at such a young age.Dawn
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Rose - I finally watched your video. Beautiful!
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Goodness!!! All this legal mumbo-jumbo is making me GLAD I'm poor and have jack shit. Who the hell who doesn't make obscene amounts of money can AFFORD an attorney and to have all that crap done?!!?!? OMG! Praise ratness I don't have to be bothered with it. And please don't suggest that I do, because other than writing a will for my "valuable only to me" possessions and maybe having it notarized since I can get that done for free at the bank, that's all, folks! Cripes! :-O
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WOW thanks so much SAS and Karie- so much to think about...
Apal- i second that, def a silver lining- i dont own much and and a broke joke. But i think there still will be the leeches that want every little thing like photobooks and such... I remember when my grnadmother passed over 20 years ago, my moms sister still hasnt talked with either of her siblings over it!!!!!
Thanks china and rose, this is the first chance i've had to get on line today so i never made it private so lucky y'all
Oh and i was DETERMINED to talk to my dr about either an antidepressiant or antianxiety med but they called me 30 mins from my appointment saying that there was some sort of leak and the fire department wasnt letting anyone in the office (i drive 3 hrs to get there) so i actually had to go to another location for my herceptin (which really want due til wed but for some reason i was on the calendar) so i never got to talk or see my doc... I am going to call tomorrow and ask if they can phone it in.....
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TO ALL -----Karieb is soooooooooo right . I saw 3 cousins as excutors RAPE the estates, they were entrusted with.
I was entrusted with one estate. I did as several have suggested above that all items on the gift list were sent to the intended receiver before my dear M died. Dear M was not my mom she was a dear relative. I enclosed a letter that said "Dear M has just entered assited living and we are in the process of closing her condo. You are receiving the following item because she wishes you to have it. Please drop her a note or a phone call to tell her that you have received it. It will give her great joy to talk about the precious item she has sent you. __________my name. Then I wrote a hand written note on the letter as to what was sent. AND had include her new address and phone number.----------Going to close this to check back one page something is starting to sound to familiar-------
sheila -
TO ALL----From page one to this is page 5----------there are so many great suggestions on preparation. Preparation is so good, It avoids pitfalls that didn't have to be. I would not let my son go off to gollege without at least a "Living will, power of attorney, and Surrogate for health care' In a do over I would have demanded a Will. Everyone thought I was typically me OCD. But If we aren't prepared------tomorrow could be our day. Then what------things are a mess.
Say to yourself based on all the good info here--------will it allow my loved ones an easier time, will it prevent someone from taking advantage of what I wanted. Can I trust those that I have entrusted everything too, to not take advantage of my trust. Does the law in my state protect what I have done.
I had a dear friend prepare for death for 18 months. After he died, his wife found out she wasn't on the bank account. She was locked out.-----------no money for anything. It was just as we were receiving Bush's Tax money thing, it was 500$-------I just signed it over to her. A miss on their part they thought they had their bases covered.
Cover the bases-----sheila
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Sheila i really like that idea of the note going to the indended recipiant. Thats a great time to give away things when you're reaching the hospice or assisted living stage. I have gone back and forth with the few little things i'd like to gift to people- WHEN????? i dont want them to think i am giving up my fight but i want to know they got it and enjoy it
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I like giving the things when you are going into hospice idea. I also like the note thing....I don't have anything. I do not own my house and do not have any money but I do have jewelry that is what I am leaving, that can be done before......thanks guys for the ideas!!
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Wow, this topic began only a week ago and so many of you have something to say; so it had to be a very timely, important subject. I just found the topic today; read the first page...plan to read all of the pages (currently there are 5 pages) when I have time.....and will be keeping up to date on what everyone has to say on this matter.
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MOthers with young daughters, here is an idea to do with your girls now.
A friend mentioned this journal that you and your daughters can keep together, share thoughts and privacy. She started it a week ago (with her 10/11 year old) and it is going wonderfully.
I have boys, they would so not do this!
I have a journal of 'letters' to my boys about my thoughts, advice and just btdt stuff. I also have a box with books and some other keepsakes for them to have. Simple, not to calculated. Oh, not to mention the dozen scrapbooks I have made over the years.
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Janis, that's a wonderful idea. Funny thing is my kids are older but still live at home. I'm pretty sure both my twins would love this idea (boy and girl) not sure about my oldest son. I think both my boys would have done it at a younger age, but maybe not as young as yours are. I might just start it now, even at their advanced ages.
No matter what I think I definitely will start journaling for all of them.
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Hi Girls, I have only posted a few times on the TN thread, and I have spent the last couple of days reading all the posts here and I would just like to say thank you for all the info being posted. I have been stage IV since 2006, and in remission twice, however the remissions are getting shorter, and the progressions faster, so I am trying to get a grip on what is yet to come. I had come to think of myself as being chronic, and really thought after all this time of good results, it would just continue. I am not giving up, I am still functioning, gardening (lightly), walkling the dog, etc. But I know it can explode at any time now, so I think I should quit procrastinating and do some of those things mentioned here. I have 2 boys, 17 and 27 (single), and no grandchildren. I love the legacy book idea, and I am also planning on getting the audio books for my future grandchildren, where you record yourself reading the story. Just sounds like a sweet way to connect. I see some of you are soooo young, with small children, breaks my heart. Prayers and hugs to all.
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One thing I would add is a cookbook of all your favorite recipes. I asked my grandmother for that when I graduated from high school. She did it, and I still use in when making brownies, muffins, tea breads, and cakes. I made one for a childhood friend and third cousin when she graduated, and she still uses hers.
Still the best chocolate brownies I have ever tasted.
These were all great ideas. I am trying to think if there is anything else my mother did. She was really concerned with a smooth transition, and she achieved that goal. The one thing that I haven't seen is to make sure the executors can find all the assets. She had most organized, but there were a couple of stock funds and one small bank account that surfaced two years later. We gave it to charity as opposed to re-opening the estate.
Even if not Stage IV, I have things I need to clean up so thanks for this thread. And I thought I would add these suggestions.
My big one is what to do with my great aunt's silver. Her and my mother's wish were that it stay in the family. I have know idea who might value it. I may need to adopt one of my friends as think more important that the recipient value it than it go to a family member. I don't have children. - Claire
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Heelo all,
I have been in Bethesda for the vaccine trail, so I have not posted for a while. I stay at my sister's that is in charge. My other sister has already trying to take over and pump for info. I am glad the sister in charge is assertive enough to speak up and say "she has this arrangment made and we are sticking with it". It all in writing and I keep reminding my one sister that the other one is in charge. I so hope there are no problems and things go smoothly!!!!!! I have started getting assertive with that sister and I have repeatedly told the whole family which sister is in charge, even e-mailing it to some. Why do I have to do this? there is already BS>>>>>>> and I not dead yet!!!!!!!!! This post resulted me in having a talk with my sis in charge to reinforce that she is in charge and everything is in writing and she knows where the orginals are and she has a copy. Everyhting is also wittness, signed and notarotized.
Per advised we talked about the house in her name. She said that if I put her and my 17 year old daughter on the deed, than they would not have to pay inhertinence tax and my daughter would not be able to sell it without my sister's approval. (Earlier I talked about putting it in her name now.)
I still have not bought the Hallmark book that I want to do, but have started letters for my daughter, one for college grad, general, etc.
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There's just one thing more I need to say, which rella's post unintentionally/inadvertently reminded me of. Just because we Stage IV cancer patients are thinking about and openly discussing dying and death in this thread, and/or have decided to, started or finished creating legacies to leave for our loved ones, or "wrapping up our affairs" legally and financially for the Very End -- well, OK, I'll just say it:
It makes me see scarlet red when a sister here who is thinking/talking about/planning/doing/is done with all of these things -- feels upset or embarrassed NOT because she's going to lose the life she took joy in living; NOT because she feels she won't have time to do something she always wanted to do, and NOT because she won't be able to spend more time with her loved ones or see her children grow up, graduate HS or college, or get married -- but rather because she feels, and she's afraid that her other sisters here are going to think of her as having "given up the fight" against her disease so she apologizes for talking about this or making any kind of plans and says she “isn’t giving up.” NO NO NO NO NO!!!
Sisters, please excuse me if this truthsome thread has led me into being so excessively truthsome you find it offensive, as (IMO too) many people DO find truth -- about ANYTHING, I'm sad to say. In keeping with ma111 when she opened this thread, I'll at least warn you though: if the pain of truth is too excruciating for you, please scroll ahead to the next post and don't even read the rest of this one as soon as you get to the period at the end of this sentence.
OK now about this "fight" and "we're brave warriors" business; GRRRRRR! I think a LOT of us could stand to get some effin' SENSE already! There is no "fight," not at Stage IV. Remission/an affair with NED is merely one of life's many unexpected surprises, a good one instead of a bad one, that's all. The more remissions, and the longer they last -- presuming the good of remission doesn't end up canceled out in the way of too many or too nasty SEs -- the better! Dancing with NED? Woo-HOO! And you feel good enough to DANCE? Double Woo-HOO!!!:-D Even “just”stability is cheersome. But this is not a FIGHT, it's a CRAPSHOOT! I cheer a sister’s good remission (a long one with few, light or no SEs) or stability in the same way I’d cheer her if she won a couple hundred grand or more in the lottery.
For the most part, those of us who aren't going to be "lucky" enough to have a run-in with the proverbial bus (or something else) before the BC can get us, will be gotten by the BC. It frickin SUCKS, but it's TRUE.
Which means, I guess I'll have to write an addendum in my will too, so if that bus doesn't hit me tomorrow, my Pack Rat will know in uncertain terms that I did NOT "lose a battle" with cancer before I finally died from it, or, I did NOT "fight" a long illness before I died from it, or whatever euphemistic brave warrior crap that I hope he doesn't tell anybody. At least I don't have to worry about him telling anyone I "became an angel," since he's agnostic. I am just seriously ill as are all sisters who have metastatic breast cancer, and if nothing else gets me first, I'll have died from a serious disease.
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Love ya, Lena! Point well taken. I celebrated my b'day last weekend and seriously wondered if it will be my last. Last year I was too whacked out on chemo to really celebrate... this year I'm NED and gloomier than ever. Explain that! Still I love a challenge and I'm spitting mad! Impossible odds? You bet. But I'm still a foolish gambler.
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Thanks fitz- i just added that book to my cart! On pay day i'll check out... Now what to do equally for my son... LOL
Clare- oooh good idea too! I know my husbad wont remember how i make anything that i make LOL
Lena- Honesty is the best policy!
With that being said I do feel that there is a fight- not a fight for my life because hells bells i know that BC prob will get me before that bus, but a fight for time and quality time, not being sick all of the time time. Get what i mean? If this or that that i do will give me an extra month or day or even an extra hour holding my babies i will fight! Next month will be a year since my DX and I KNOW i have fought this whole year. I fought the urge to puke, i fought the urge to say no more treatment, and in that open honest policy i fought the urge to blow my brains out- yes horrible that me someone who is mostly sunshine and lollipops had the thought that it would be better for my family to lose me quickly than slowly watch me deterioate. But i slapped myself in the face and said "Stupid woman! if you just hold on and fight through this you may be around when a true cure comes around... I think if i can just make it 10 years there will be a cure i just know it!" Please dont jugde...
BTW lena i respect you and enjoy your posts i dont want you to think i am upset by what you said- just my honest reply
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I have a question. Just in case I don't go through whatever $ I have left and just in case I don't have to cash in my insurance policy to live on: When a person is on title 19 and the state takes their SS checks and all their assets, are they allowed to take the proceeds of life insurance when it's left to a beneficiary? When my mother died the state of Ct took every penny, but I can't remember if they took her policy of $1000 from where she retired. Thank you for responses.
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amontro:
I had to make arrangements for this regarding my brother in my mothers will. We set up a trust in NY state (where my brother lives) with a couple of my sisters as trustees. If my mother were to leave my brother money directly, he could loose is Medicaid, and other benefits. The trust prevents that and controls how this money can be released to him. I think it cost around $1500 to set up the trust.
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Happy birthday steelrose. I just had mine too June 9th but celebration -- cheesecake made especially for me, and "fireworks" with my Pack Rat! ;-) over the weekend. My third since diagnosis (Stage IV at the get-go). Hmmmmm Three down, two more to go if I "win" at the craps table. LOL
texasrose, I see no problem with agreeing to disagree. It's OK.
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Happy birthday both of you and you know everything that happens I think that, I do think I will be here this summer and thanksgiving and christmas, easter I assume so but next year is the iffy part and that is only cause the medication is not working and who knows what will happen with the new one I go on tomorrow....
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happy birthday steel rose, and lena! for last weekend. I had my birthday too on saturday...not woohooing, but am glad to have seen it.
this is why i like this thread. This is where we can talk our truth, a place without frills, i agree there should be no apologies for what we feel.
Lena: i hear you and agree for the most part. We may look 'brave' and seem like 'warriors', but what choice do we have but to endure?. (though i must admit i do feel a litle proud that i havent fallen in a heap) (yet anyway lol) Claire in S: i love my recipe book too. My mother made a scrapbook recipe book for me, covered in brown paper. Inside are some of my grandmother's recipes and hers, and all my 'favorites' as a child. It is really worn now, i am trying to figure out how to 'enclose' it somehow in a new one, where i can add more of my daughter's favorites tec-any ideas?? Ma111: good luck with the trial! and again, so glad you made this post. Texas rose: you are young and strong-hang in there, i have those thoughts too sometimes....personally im not sure if im up to the chemo fight, it is confronting to consider letting nature take its course, and sometimes i think thats what i want, but then i havent been told 'its chemo or the end' yet, so i am unsure of what i will do when that time comes, but it is something i think about/debate with myself alot
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Happy Birthday to my June friends, Lena and thats-life-! I was June 12. Maybe my gloomy moodiness is 'cause I'm a Gemini!? Today I was pretty upbeat and positive... it's a rollercoaster. Also, my oncologist told me I should really be enjoying and taking advantage of this time (NED)... so every day I feel this intense pressure to LIVE!!!! Yikes. I can barely get out of bed some days. Living takes lots of energy!I truly am grateful to be alive though, as I was diagnosed at Stage IV and in bad shape. Thanks Ma111, for starting this excellent thread. I've never been one to shy away from the truth. When it's time to hang it up, I'll hang it up. But I'll think about that tomorrow...
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I was a month short of 61 when diagnosed. Just bone mets but they were extensive and I was in pretty bad shape. I was scheduled for 6 cycles of TC but it worked so well and really wasn't that hard on me so I begged my onc for more and I ended up having 8 cycles. If I could do "hard" chemo at 61, you all can do it. It really did a job on my bone mets. Of my original 20+, 3 keep coming back but we've been able to knock them down, so far. I was tempted to say no chemo, but sooo glad I didn't. What's up with all the birthdays? Happy happy to all of you! Mine's not til August. 64 years old. Woo Hoo and only one more year til Medicare!
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yes, we must "LIVE!!!"..start "LIVING!!"..im trying LOL..
64 alpal!, well done, and thanks for the positive chemo story, im just a big chicken, i should start a bwark bwark thread maybe..
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deleted my post, in respect to konakat.
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thats's-life- my chemo wasnt as bad as i thought and the anti-nausea meds worked wonders. It really is a personal decision as each of us are affected diffrently, and like alpal pointed out she was 61 and did "hard chemo" so it is doable!
I personally think of Elizabeth Edwards and wonder what made her say enough was enough and let nature take its course. She had young children like myself and so i would think that would never happen, but i know one day it will.
BTW my doc phoned in some meds for my depression and anxiety- i called him yesterday, going to get the kids ready to go pick them up
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Timothea - you have such a fierce and courageous outlook on life, I can feel your pain for your children. Mine are 10, 7, and 4. I am glad you are able to take something to help with the ups and downs that come with this disease. I think when our time has come (many many years from now!), something inside us reaches an understanding, an intuitiveness, that allows us to move on. At least I hope that is the case.
I am currently reading the book "The Art of Dying," which researches deathbed visions, and the need for caretakers and family members to respect the powerful reality of these events. It gives me comfort, but also I think shows that when it is time, that peace can come. -
Alpal
Being 61 and er+ and Pr+, means, even though you had a hrash chemo, it was not the same dose that they give to premenopasual women how are er-, pr -. you cancer is not as agressive so high dose is not necessary.
my dose of Taxotere was 276my and Carboplsting was 800mg. Us young ones get such a high dose we cannot walk, do grocery shopping, need to take care of kids or live a lone, have to go to work to pay the mortage.
I realize that you were trying to encourage people to do chemo, but pleases consider where they are coming from and their point of view. Your post can be seen as bulling. nThis is a place for people to tralk openly about death and dying. Young people that are premenopausal have more agressive cancers that require higher dose to get a little result. Did you have problems walking, were you able to get up and get yourself a drink of water or hug your child, could you get the grociers out of the car, A lot of us are too young to be comfotable using a cane because of neuopathy and if we use a walking stick, it really bothers our childern. My daughter did not want me to go through harsh treatment again because she cannot stand to see me that sick again. 16 years old is too young to have to take care of their mother. Please understand what we go through before commenting.
To all the birth day sisters. It's a lot of you this month. I didn't celebrate my last one. I am still in the age rrange that breast caner is the number one cause of death for women. If we make it to 55 it changes to lung cancer. realisticly, I probably will not.
In regards to the trail I am in, the crappy 2nd part I had to do after the vaccine is the taxotere I started yesterday. I still have neuropathy from the first round and they told me that even at low to regular dose I am extra prone to neuropathy. I almosr fell flat on my face today in a crowd of people. If the neuropathy continues, I stop Taxotere, which kicks me off the trail. The other choice that my private onc said about is the Tykerb/Xoleda mix. The independant study I read is that it would only buy me 4.1 weeks of decrease quality life?????????????? Why are treatments like that recomended?? Are they insame? Do they really think we do no research.
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ma- i am not sure what my dose was but i def can ask my oncoologist, i think alpal was just sharing her experince. I didnt read it as bulling, but thats me
I am young, not sure if my cancer was aggressive but the largest was 11cm, i was able to do those things. i actually drove 3 hrs home after my next day shot. granted i would usually pull over at the 1/2 way point and take a cat nap because i was tired, but each of us have our own endurance levels. Young or old it doesnt matter- its a highly personalized reaction. 2 identical patients could have 2 opposite reactions to chemo.
And yes nuropathy is a bitch! i just started feeling my toes 6 months out!
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Ma111 - I'm not familiar with the term bulling and am thinking maybe you meant bullying. Whichever, I can assure you that my intent was only to encourage. You may think that because I'm "old" that I am not well versed in cancer treatments, especially for younger patients. You would be incorrect - my oldest child, Elizabeth, died in 2006 of breast cancer. She was diagnosed at age 31 and lived 4 years.
Thank you, TexasRose, for correctly interpreting my intent.
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Whomever had neuropathy with Taxotere------Did anyone talk to you about icing during therapy----------I only learned about this week. Please go to taxotere thread and review. Check out last three pages of Catholic thread for Theresap60 comments on Taxotere. It made me question enough that I went to the Tax thread Theresa inadverntently did her own experiment while on tax. VERY interesting on outcome.
Texasrose ---------------you are sooooooooooo right ---same drug toxin given to different people can lead to two totally different outcomes. So wish every person receiving it, deliverying it, ordering it could understand your statement. This statement or a composite should be plastered everywhere in cancer centers
So tired of people recieving the same drug-----saying"I had no problems", Delivering it(nurses)"WE don't see this reaction". Those ordering it' It must not be related, we only talk about cancer here" They are frigging giving us poisons, of course we aren't going to react the same.
There was on article by a researcher for the clinical trials of Arimidex after the drug was FDA approved and all the aftermarket complaints came in regarding muscle/ bone/ joint pain. His statement"We did not have all these complaints while the drug was going through clinical trial. We don't know what to make of it. We will have to go back and take another look" I love researching things----At least used to, brain is not up to it now--------In approxomitaley, 39 years of researching. I never heard a researcher on a clinical trial make the statement he did. I was dumbfounded. I then had to say why? as a researcher would do. 1. do they really care and want to correct something. 2. Is it to cover there ass, by saying publically, that we never had these problems complained of----ergo we aren't responsible for the physical damage. Hate to sound pessimesstic, but i'll go with # 2.
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I have most everything in order. I have written a will, power of attorney, medical proxy, and a statement regarding my end of life wishes. Just as important, and perhaps in some ways more important, I have had talks with my husband about life without me. I have discussed how I want the proceeds of my violin to accomplish. I feel strongly that if he remarries, the assets that I accumulated should be used to help our daughter get started in life.
Equally important, I have had this discussion with my Mother since she is one tough cookie. I am not forbidding a service or party. Doesn't matter what I said and or wrote, the Mother will do something and I wouldn't be able to stop it. She is appalled that I don't want a final resting spot so if she wants a service, how will this harm me?
I have organized all of my client files, properly notating the master passwords, access codes, and a map to the backups. In the back of the Will folder is all the passwords to websites so that my husband can post as appropriate to the communities to which I belong.
And finally, I am teaching my daughter the things I want her to know. She didn't understand how a mortgage worked, or why someone might want life insurance. We have discussed how to have a reasonably priced wedding, how to clean the silver, where the special linens came from. She is paying better attention to my family stories, and watching our marriage as she tries to decide if she wants to marry the current boy. I made her do her own taxes this year, with my assistance. I can't stand that I might not see her grow into full adulthood and find myself pushing my ideas to her more often. Sadly, she still can't manage a clutch, so I can't leave her my cool mini cooper.
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ma111 and others, please lets not devolve to the place where we attack each other. I haven't read anything on this thread that even hints of bullying.
Respectfully, I think the point of someone telling you they had no problems with a particular treatment is to encourage and try to get the patient NOT to anticipate the worst when those problems may not happen. I have lost too many women in my life to cancer -- several of them were quite young. Sadly, many of them were women who were afraid of SEs and who based on the possibility of SEs declined a particular treatment. I wonder what would have happened if they had thought there was a chance they wouldn't have the worst SEs and had tried the recommended treatment.
But like Elizabeth Edwards, each individual must make their own decision when it is enough, when quality outweighs quantity. My godmother went farther in her treatment than anyone I know. I would have given up long before. But it was her decision, not mine.
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susan: i can relate to that so much...i was in the car with my daughter, who is 13, explaining how to build a good relationship with her bank, and how to build a real estate portfolio...then i saw her looking at me like '.....??what the hell is mum on about???" LOL, oh well..hope some of it sinks in.
Texas rose, alpal, ma111: i made the comment that texas rose is young and strong, which i think may have motivated alpal to comment that she did very well, and then etc etc...I should clarify that i did not necessarily say TR was young and strong as a claim that she would handle chemo better than i would. I just meant that her strong/young spirit was shining through. I am pretty young myself to be dealing with this, but have other health issues that i fear would cause all hell to break loose on chemo, the oncs are trying to work on those issues at the moment, and my treatment plan may end up a bit different to the norm if those issues cant be resolved...so i suppose i should be clearer when i say i am afraid of chemo, because naturally, someone may feel a need to try to help by saying they did well. so sorry if this has stemmed from what i said. I would so hate for this great thread to turn into a debate in any way..ma, you make a good point that our personal experience with chemo is just that, but sorry alpal, if you were only trying to put forward a positive experience. I think we are all shocked and sad at the moment, konakat's death has affected me deeply, even though i hardly knew her, emotions may be running high...x
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To all Wonderful people here----------we are all trying to find our way , let no word lead to anger or assumption about what another is saying. We have all been blindsided with something we can't control. WE are just seeking
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I have to comment about Elizabeth Edwards, because it makes me sad to think there are people who believe she gave up. While she kept many details about her treatment private because she didn't want other BC patients comparing their treatment to hers, at the end chemo stopped working for her. She had progression on 3 different chemotherapies. So I wouldn't say that she chose to stop treatment, but that unfortunately the treatment didn't work for her and she had progression to the liver and lungs that killed her.
I'm not sure where someone got the idea that er-/pr- cancer was more or less aggressive? Hormone-receptive cancers have different treatment options, thus different outcomes for patients. But I've never heard that hormone-receptive are more or less aggressive. Her2+ is what shows aggression.
I also disagree that premenopausal women are given so much chemo that it's more harsh on them? Everyone responds different to treatment. Dosages depend on the drug, sometimes are set by body weight and other times by age and other health issues. I had taxol at 34 for 8 months. While I suffered side effects, I was able to live a relatively normal, bald life. I had a very high dose, but was lucky that I never got neuropathy or other conditions that would have made it hard for me to live alone (as I do). Older women in my support group have gotten lower dosages and had a harder time.
I am on Xeloda/Tykerb right now and hope to stay on it for years and years. It's buying me valuable time with a very high quality of life. Everyone needs to make their own choices and do what they feel is best. I support any woman who decides to stop chemo (or never take it). What bothers me is when people make blanket statements about how their side effects would be the same for others, and thus discourage women from trying a treatment that may really benefit them. I hope we can all remember that we speak for ourselves and based on our own experiences.
I have given my house to my parents, set up a living will, given medical power of attorney to the people I want to have it, and made arrangements for my body to be given to a medical school as I described in an earlier post. I feel "prepared" in the ways that I can be, but am still scared of death. And as much as I will plan and organize things as best I can, I also will keep fighting as long as there are new drugs to try. I'm 36 and I have some very big plans for my 40th birthday party!
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Petjunkie-----------I had this long response----------it went to computer netherland----------as long as you are sure that what you have done will not hurt your folks financially --your good to go--literally. Try to set things up that there land taxes are covered for the time period that they stay in the house, Plus homeowners and flood and car insuranse.
When I say literally---it is not intended to be a laugh--------------------it means all bases are covered, everyone is safe from unexpected costs that puts them in finacial trouble.
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Sas-- yes, my parents are well-off financially and have no grandchildren. They owned half my house to begin with, as they helped me to purchase it originally, so we have a tenants in common agreement. Well, we did. When I was diagnosed stage IV I gave them my half of the house (there is no mortgage, we owned it outright). They will sell the house after I am gone, but for now they pay all the utilities, insurance, and taxes. Basically, I live here as a rent-free tenant (and have renter's insurance, too). This way, I have no assets to worry about and there will be no estate taxes. They view the house as an investment they will someday sell. They are also beneficiaries for my retirement account.
I realize I'm in a special situation, being single and having parents than can afford this. But basically, it's how I live on Social Security payments and do not have to worry about housing or medical expenses. (Because I live in their home and am deemed disabled, they can claim me as a dependent. Which means if they pay my medical expenses, including my COBRA payments and co-pays, those are medical deductions they can claim on their income taxes.)
We met with an attorney and accountant to figure all this out, which came at a cost. But it's all settled now and the peace of mind is AMAZING. I am so grateful for the generosity of my parents, it is making my life so much easier. When I'm gone they can sell the house and get 100% of the money, so I don't feel too bad about taking money from them now. Sometimes I feel like I've lost my independence. But as they tell me, I'm just spending my inheritance early :-) . It makes my mom feel so much better, too. They can't control anything, and my mother has told me that it makes her feel like she is doing SOMETHING. She loves that when I feel good, I can go out to lunch with a friend and not worry about if I'll be able to buy groceries that week, too.
It is an amazing blessing and I am very lucky. Others might benefit from looking into some of these options if their situations allow for them.
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Ma111 thank you for this post.
That's life, Texas rose and the many others who responded, thank you so much for the supportive and well thought advice. I am going to find a way to bring up the power of attorney so that her wishes can be observed and I'm also going to find a time when we can discuss those desires.
No, we are not totally sticking our heads in the sand but I want to have every moment we can have and so does she.
For the woman who wrote out the cards, notes, and set aside gifts for her kids but wasn't sure they would want or understand them.....When I was 32 years old,, my 30 year old wife went into labor. There were complications and she died 2 weeks later. Our son is 12 years old. I met my wife when my son was 8 months old. I have been married 11 years.He knows that his mother loves him. He knows that his other mother also loved him. His grandmother is a part of our lives, having dinner with us on a weekly basis and sometimes taking him for weekends. I have her grade school papers,, and a large collection of leters, cards and emails that she and I exchanged during our courtship and marriage. He sometimes has questions for me. I answer them when I can. His grandmother also answers them when she can. I can assure you that he would like to have letters or notes or anything from her that was specifically for him.
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All of these posts are so truly meaningful & real. This thread caught my attention under active topics. I've worked in hospice for a long time. I started because I believe that our passing whatever it is from, is as meaningful as our beginning ( birth). Death is of course painful and horrible but I also learned it can be beautiful. I sat vigil with many patients as they pass, they were all peaceful and some down right amazing. I am not a religious person but many patients that were -lucid held there arms out and indicated there was " something" there to accompany them.
My best friend passed from BC. Mother of an 8 yr old, she fought like hell. When it became apparent that it was time, her Daughter Kaityln crawled in bed with her and said " it's ok Mommy the children in heaven need a Mommy angel to take care of them". Debra said " thank you my love I will always be with you".
Debra passed within an hour. Her last words were " oh it's ok now" with a smile on her face.
I know when it is my time it will be something very peaceful.
Xoxox. -
corian, what an incredible post, thanks...to know that it can be peaceful, and often, thanksxx i wonder what they see?, wow.
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Pizza -dad-- your special and all you have done--------LOVE& HUGS&PRAYERS- sheila
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Corian-----------Thank you for that beautiful story Namaste sheila
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Ma111: im on my own with a child, though i have a friend staying with me, she works in the city and is gone 13 hrs of the day. I am finding it hard to shop, drive kids around, cook, carry grocery bags (they make my rib mets/back hurt for 3 days afterwards)...and im only on tamoxifen..either stress or the drug or the cancer is making me vague and tired and often useless....im thinking of you going through this treatment...i hope you have a beneficial response.xx i wish i was nearer..i wish we had more than words sometimes.
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Apha,
I am sorry about your daughter and am glad she had you to help her. Some of us are on our own to take care of our childern and feel they would be better off sometimes when we have the reactions to the point that they have to take care of them selves. Please don't take my post as offensive.
Texas, one and a half years and I still do not feel toes or fingers and now I am back on it. The NIH is going to make a case study out of me and I agreed to let them biospy to see if they can figure out why taxenes cause neuropathy so they can start intervening. First they have to know why it is caused.
Susan, Make sure the proceedes go into a trust now, or if your husband remarries, a new will in case, god forbid happens to him. I have heard stories of the new husband dying and it turning into a Cinderella thing. Talks with family is very important!
Pizzadad, nice hearing from you, thanks for the update.
Sas, I never heard of the icing thing before, I'll have to check that out as today I almost fell flat on my face because my legs didn't want to work, (taxotere).
Corian68, What abeautiful story! Thanks for sharing. It's nice to hear that it doesn't always have to be so grim.
Thatslife,It is hard when you are the only one with no help to do the simple things in life. It is also hard watching my daughter doing without a life. When this 1st started she was a junior in high school and was going to take college classes and apply them to her senior year and graduate high school with 18 credits. Well I couldn't take her, so she graduated high school, but with no college credits. I hate seeing her life affected so much. If I was dead, my sister who lives in VA would have been able to handle getting her back on track. She will be 18 next month and is accepted into college. She has done without so much because I have been sick a long time now.
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Thatslife-
I wish I could help!!! My heart is heavy thinking of what you are going through with minimal help. Is there a local BC support center near you that can provide help? Say with grocery shopping amd errands? We women often get the short end of the stick...you deserve a little help right now!
I wanted to add this...I sat with my Grandpa when he was dying. He was 88 & had emphezema. It was very hard for the rest of the family but I stayed until the end. He could not move, his eyes were open but could not speak. A few hours before he passed I was sitting in a chair next to his bed. He started to scratch the bed rail. I got up & looked at him. He looked right at.
me, I asked him if he was ok? Needed more morphine? He had a pump so it administered on a schedule. Didn't seem to be in pain....He just kept blinking & scratching. He was trying to tell me something.. He looked away corner to the corner of the room and was watching it. I held his hand trying calm him.
As I sat there with him I thought I smelled my Grandma's perfume? It caught me off guard a bit, she passed some 20 years before. I looked to see if the nurse had come in....nope. I got the chills I stood up and asked him if it was Grandma? He kept blinking, so I did what they do in the movies...blink once for no amd twice for yes. Is it Grandma your seeing? Two blinks...asked him again...two blinks. Of course I start crying, I lean over and hug him and say " of course it's her she's come to take you" ..then I made a wise ass joke and told him - he has some " Splaining to do" ( he had remarried after she died) lol! He closed his eyes and one tear rolled down. He went with her that night to where ever we go.
And I will be forever grateful to have been there.
Sorry for all the mushy stories but I believe in living and I believe in dying. It's something we ALL have in common. We are all going to die. Some of us sooner than later...I pray that we as a society can learn more about dying, gawd that probably sounds morbid!! But the 11 deaths that I accompanied they were peaceful and when my friend Debra said " oh it's ok now" it changed how I feel about death. She saw something or felt that it would be ok....
It will be ok. -
Ma111
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corian, thanks, im ok, there isnt an advanced bc group in my town, and i have never heard of a bc support center. I had a leaflet arrive in the mail from our biggest supermarket chain here, saying they now do online shopping and delivery, so i have given details, and will start shopping online soon, if only to save my back...i asked to see the cancer social worker at my cancer center, she more or less told me there is no help available until i am admitted to hospital for something, and then help can be arranged, for light housework, mobility issues etc..otherwise, i have to wait for when i access hospice/palliative care..i must admit i was shocked that there is so little available here..It is early days for me, im not suffering as much as many others here, but it sure is tiring...and this is the one thread where we dont have to apologise for being morbid, ma111's orders lol, so dont apologise
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to all here that believe in life after death this story may have meaning,
A few seconds ago sas-schatzi wrote:
Their is a nurse Karla on the Nurses thread who described that when she was on a trek in the Himalayas. She would observe the Sherpas greeting each other with hands as folded in prayer. Their greeting was Namaste. She asked for a translation. They told her it meant "I SALUTE THE GOD WITHIN YOU" After hearing that story, it so gripped me, within the deep soul of me. The strength of the statement in analysis goes to the heart of our belief in God. For if we believe that this statement regarding God-- being within each person. Then he is a part of our being. If that be true, then we are each joined together with him, and therfore we are each apart of each other. So, what happens to the one, happens to all. Yes Paula, thank you for reminding me. A periodic telling of the story helps my forgetful mind. Namaste Sheila
SAS -
Thatslife, register with Palliative care as there are things that they can do to help you. I know it sounds premature but I have done this purely because once registered it is easier to access help as needed. It's just a phone call and a visit from a Palliative care nurse who will assess you and your needs and go from there. Good luck!
Love n hugs. Chrissy
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thanks chrissy it will be confrontational, but if i can get a little help, that would be great. i think im ready for some help, pain levels are rising, hoping its the tamox kicking in more.
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The Palliative care nurses are great and they will try to organise things to make your life easier. Yes it is a little confrontational to begin with but it is also freeing once you've done it. Good luck.
Love n hugs. Chrissy
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Corian68,
Thanks for sharing your story about your grandpa. I don't want to die but know I will. It is nice to hear stories of peaceful deaths. I so hope it is peacful for my daughter and I.
Thatlife, I also found that there is not help avaible when you are able to talk and walk into the doc's office. I will check to see if our local grocery store has home shopping, Do they charge extra?
Sas, I also think we all worship/pray to the same God regardless of our relgion and we will all see each other later.
Crissb, thanks for the information. I din't know we could registar with Pallitive care while on a vaccine trail or other treatment. I thought we had to wait untill the very very end.
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This IS a morbid thread! But I can't stop reading.
I like to think my daughter escaped the Tiger Mother Syndrome because I was too sick and therefore could enjoy childhood pleasures more. Instead of two hours of violin, 20 minutes was fine. No extra math problems. Not everything is about academics all the time. We have a lot to teach them beyond school stuff. I forced my daughter to take walks with me and listen to my lectures on life. This seemed more important to me than preparing wills and stuff. But now that I'm stronger I should get more on the legal and financial ball. When I'm done de-cluttering.
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Ma111, I don't know if it's the same in the States but here in Australia if you are having problems and are stage IV you can register at anytime. It wouldn't hurt for you to check it out anyway....nothing ventured, nothing gained. Good luck!
Love n hugs. Chrissy
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LOL heidihill...morbid!...and what is a tiger mother???
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this place isnt morbid! its a safe place where we can discuss the hard stuff...though your first line did make me chuckle
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Heidhill,
Your first line made me chuckle also, it is a little morbid, however we need it. Spending time with your daughter is very important!!! Glad you were able to. I find it a stress relief to be here and I am getting a lot of good advise. I still need to buy the Hallmark book.
Crissyb, I will check into the pallitive care thing, thanks for the needed advise.
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Tiger Mother refers to a parenting book by Amy Chua. I like this review of her book by a New York Times columnist. I haven't read the book though.
http://www.chron.com/disp/story.mpl/editorial/outlook/7387295.html
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Good Morning. I am relieved to find this topic as everyday is an emotional battle. I tried talking to my husband once about funeral arrangements but he would have nothing to do with talking to me. I don't ahd POA, Don't have a will but then I don't have anything as I have lost everything. I too still work so I can have insurance and I cover my husband..
I am scared. Wish I knew what it is like to die.I am thinking of donating my body to medicine. Maybe we could find a cure. God bless all of you.
Nicki
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It's been almost 6 months since I found out I was stage iv. Since that time, I occasionally have dreams that include people I know who have already passed on. My DH and I had a dog "Tippy" when we first married that eventually died. Tippy showed up in one of my dreams after I received my dx. Then another time, the dad of one of my childhood friends was in my dream. He passed away over 30 years ago. He was a very sweet man whom all the neighborhood kids loved growing up. And one or both of my parents who both passed over ten years ago have popped up in my dreams.
It's not every night that I dream of these dearly beloved departed ones. And its not scary or creepy, it's just part of my dreams from time to time. It's not something that had really occurred before.
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I have had grand parents that have passed show up in dreams. I think it is them talking to me.
Also, I have read these books to help me process.
On Death and Dying. (about Hospice).
Don't Kiss them Goodbye and We are their Heaven (the TV Series was based on the Author)
There is a website that you can fill our your final wishes..funeral songs, gifts, etc... If I could only find it again.
I did write my own obit...and said they better publish a decent picture.
The jury is still out where I will spend my final days if I have control. If my boys are in HS, it will be at home, I think they can handle it, but they are only 10 now, so I don't think I would choose it right now.
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Like many of you, I also have a personal story that brings me comfort...
When my stepfather was in hospice dying from Alzheimer's, one of the nurses stopped my mom and asked who "Gladys" was. My mom was a bit shocked, and told her that was Richard's mother, who had passed 3 years earlier. The nurse told her that he had a lucid moment and told her he was enjoying his visits with Gladys. My mom knew then the end was near, but it brought us all great comfort to know that he had his mother to be with him in those final days.
I believe that something happens when we die, that we do indeed move on to a different existence, I just don't know exactly how or why. This will sound very morbid - but I am actually very curious to know. I don't WANT to die anytime soon, that's for sure, but it doesn't necessarily scare me. What scares me is what I am leaving behind. I hope that makes sense! -
Suze35, I perceive it in a similar way. I have no great concept of anything beyond death but what upsets me is the unfinished business and loved ones left behind.
Funny, I'm so sure that if my husband died I would manage but I arrogantly think that if I die, he will be a basket case.
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Thatslife
There really should be more resources available to you, you can't be the only one in your area that could use some help, errr! I agree with Chrissyb resister with palliative care. They will have people to shop, light house work, whatever you need really. There was a patient where I worked that had advanced cancer, diabetes, COPD. ( mess) before she began palliative care, she thought she'd have 6 mo's to a year. She was also 89
She lived nearly 6 more years on hospice. We would sit and talk for hours, we were both convinced she continued to live and enjoy life because of the care she received. When you begin palliative care our Souls are cared for too & they help you daily or weekly. Obviously treatment stops but your mind, body, spirit care begins. You have your own team: M.D , social worker, nurse, volunteers, chaplain, some provide meditation/ Reiki. When you are ready they are there waiting to help.
Peace- Corian -
Fitztwins
I have read that book by Allison D. Great book. Also Steven Levine has great books about end of life. I believe that our loved ones come to us in dreams. Since I was young I have dreamed of them. One time I woke to find my dead Grandma sitting on the edge of my bed. Try to explain that to people haha! A year ago last May a girlfriend had tickets to see an Intuative named Lisa Williams. I went, she was Fabulous!!!! At the end I got to meet her. She gave me a hug & said " you have the gift , ( i believe we all do) when you see things and hear them...believe it" it's sounds crazy I know. She then told me the coming year would be tough and to be vigilant and strong!
Ok...great....that sucks. In Oct. Is when I found my beast in my breast. No insurance and getting a doctor to listen was almost impossible! Finally got a mammo & ultrasound. Then radiologist said " it's not a tumor not a cyst or fatty, let's wait 6 mo's and recheck" really? Yes, really...no biggie he said.
That night I woke up hearing. " no! It is a biggie" didn't know who's voice but it startled me.
Long story short...I had to beg borrow and almost steal to get a biopsy Dec.15 th. To reveal a 1.5 cm malignancy. Then 2 more months for BLMX.
I know in my heart that ' someone' warned me in the middle of the night.
I always listen now and feel grateful when I dream of my loved ones -
I've posted this experience before but thought I'd repeat it on this thread. Some of you might blow it off as the vivid imagination of an old lady. I know I did when I first heard it, but some might take comfort in it.
When I was in high school back in the mid 60's (that's right, I'm old, LOL) I was dating my first husband. His grandmother described the first "Near Death Experience," I had ever heard of. This was an old German country woman who had never heard of such things so I take what she had to say as the whole truth. She told me when she was young back in the 1920's she had a surgery that went terribly wrong, and she died on the table. One of the doctors even went out to the waiting room to tell her husband she was gone. Somehow they did manage to bring her back, but while she was gone she described much of what we have heard about "Near Death Experiences" today. She said she saw what she described as a narrow dark staircase with a very bright light at the top. She started to climb that staircase while looking back and watching them work on her body. An "out of body" experience. She said she made it almost to the top when something called her back down. That's when they revived her. This was not a woman who read books or watched much TV. This was also the first time I'd ever heard of something like this. At first, being 16-years-old, I thought "Yeah right," but she repeated this experience to me several times always with tears in her eyes. She cried every time she told it. It was that real to her. Since then there's been lots of information about "Near Death Experiences," but this was back in the 1960's and very little was known about it then. A rather uneducated country woman would not likely have heard of anything like it. To her the experience was very real. She would tell anybody who would listen, and she'd been telling it since the 1920's when it happened.
Hearing something like this from somebody I knew so well, somebody who had personally experienced it tells me that there is something more after we leave this realm.
Peggy
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Just wanted to say that I did a simple will on Legalzoom.com for only about $70. All you have to do is have it notarized once you receive it. Very easy and you can be sure your family is protected from the legal hassles if you die intestate. I had a friend in Texas who died intestate and they didn't have much of anything, but it was still just the biggest hassle for her. Everything did not just go to her automatically, there were lots and lots of court dates and problems - it just about killed her.
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Meant to say her husband died intestate - sorry.
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Sincitydealer
fantastic story!!!! Thank you
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palaminoridesagain, I think it is normal to be scared, I know I am. i would like a peaceful death like is described on this post a few times. I am sorry your husband doesn't want to talk. Maybe your living will can be done and you can put it on your chart at your doc's office. I did find it a stress relief to get some stuff done.
Others, I find the dreams intereasting to read about. That tells me we will go see loved ones when it is our turn.
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I had a lot of catching up to do on this thread as I have been on vacation.
Tears have neem streaming down my face. Thank you to everyone for sharing their stories.
I am not so much scared to die as I am scared to not be living. I think many of you can relate.
Hugs,
Lori
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I am not Stage IV but I know that we are all going to suffer the same fate...dying. I may not die but breast cancer but obviously I will die from something. And the thing is just because I have early stage BC is no guarantee either. It can come back. I cant say I am prepared for it but I have accepted that it can happen. You guys are so courageous. A lot of you have young children which makes it even more tragic. My youngest is 21. I think exactly the same way you do chickadee. I dont think it is arrogant to say you could handle losing him better than vice versa. That is exactly how it would be for my spouse and I. He is smart and has a good job but totally out of the loop for handling finances or even interracting with our youngest son. I have begged and pleaded and threatened and he will agree but never does anything about it. I shudder to think what will happen. He was in the Trauma Unit for 3 months; they saved his life several years ago and I had to handle everything. I managed but I dont think he could have. YOu guys are so courageous. I am praying for all of us - especially all of you. Remember what Jimmy V said...(if you know who he was) never give up....diane
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Lori - yes, that is it exactly. I'm scared of what I won't be here to do - raise my kids, love my husband... I know in time they will be okay, but it saddens me beyond belief to think of someone else raising my kids, sharing the future I had planned with my husband...even though that is exactly what I would want for them, to find love again.
Chickadee - I was arrogant enough to think that my husband would be the one to die first, I don't know why. -
For ma111 and those with children..i copied this out from a book i borrowed "When a parent has cancer" (cant remember the author, but she lives with stage IV cancer.) i wanted to write it here, as it helped me tremendously..one other line from a book, which also helped me..."pity is poison to children"
* when my children work around my limits, they are learning flexibility
* when my children respect my special needs, they are learning tolerance
* when my children tend to my needs, they are learning compassion
* when my children wait for me when i am slow, they are learning patience
* when my children see me as a whole, they are learning about self love
* when my children pick up the slack, they are learning about team work
* when my children fend for themselves (when they are perfectly capable of doing so), they are learning self sufficiency
* when my children deal with my setbacks, they are learning perseverance and resilience
* when my children continue to grow and develop, they are learning that they are worthy, independant individuals
* when my children nourish dreams, they are learning about hope
* when my children have times of happiness, they are learning about joy
* when my children feel loved each and every day, they are learning about love.
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What is this "went peacefully" stuff? It seems to follow each and every "passing" that is posted, said at every funeral, etc. Etc. Is it said to make those of us still here feel better? Or do those who are dying reach a peaceful stage before they die? (I just can not imagine myself doing it "peacefully"; will I be the first they write - she fought tooth and nail until the very end, and cried as death took her from us????
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Scutters
I get what you're saying. Maybe the wrong phrase to use. I'll say from a by stander's point of view, watching my friend pass it was more like a " Knowing full death" that probably doesn't make sense either?
Debra fought like hell. 43 with an 8 year old. Chemo & radiation until the end.
Like I said, when it was time.....her 8 yr old Daughter " knew" and gave her permission to go.
Then before Debra passed she said " oh it's ok now" I think she " knew".
I hope when I go, I finally understand and my loved ones around me get to witness it and learn from it.
I won't be able to pick the way I die but I truly hope there is an awareness of never ending love.
Any one of us could be struck by a car tomorrow, we just don't know...but if it is disease that takes me...I hope it's like the passings that I have seen. Hope I haven't rambled and made things more irritating!!
Corian -
Lori, Scared that pain and other side affects will be out of control is one of my fears of living. I also don't like the thought of someone needing to care for me. Right now I am not a good mother when I am sick, so as far as raising my child, I something think she would be better off at my sisters.
edwards75, thanks for the encouraging words.
Thatlife, I am printing that out and hanging it on my kitchen wall tonight. I like that very much and iy really makes me feel better about not being able to care or help my daughter. Thanks a bunch, that made my day today!!!
Scutters, I can understand how peacefully about dying can be upsetting. My definition includes; no family fighting with the doctors, acceptance of fate, control of symptoms and no issues about funernal or will. The card I choses for my funeral talks about not crying for me because I am in a better place with no more suffering. I don't think you will be the first they write about fighting tooth and nail about. My definition of peacefullt does not include the lack of fighting, but the undersatnding that one cannot change fate. I don't want to die of this horrable disease, I just know it is lickely to be my cause of death and would like to be prepared. I even hate knowing that it will be my cause of death and the pressure of preparing. Hopefully this helped.
Right now I am traveling 4.5 hours to be on a vaccine trail in the hope of gaining more functional time than traditional chemo, that's fighting and if they write about one fighting, it will be me. I don't think that anyone here is not fighting, just the realization that this nasty disease will get us. I have found a lot of useful information on this post that may help my daughter after I am gone. I don't want extra taxes taken out of the house or any questions about how I wanted things. I and others also realize there comes a time when medical science cannot help us. They want to, but the diesease is not always curable, therefor chemo in some sitations complicates the inablity to function or prolong life.
I like reading the stories and having hope that my daughter will do ok after I pass.
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I appreciate the advice from PizzaDad that it'd definitely a good idea to write things now for our loved ones to have when we are gone. I've kept a journal, sporadically, over a number of years. But I am going out this week and buying a blank journal and write some of my thoughts dowf for my teenage son who will be off to college soon.
I also looked up some journals that have questions to answer and found several on Amazon. I will probably purchase one of them. It is going to be hard to pick just one. They all looks promising. The ones I like are:
"The Story of a Lifetime: a Keepsake of Personal Memoirs"
"The Book of Myself: a do-it-yourself Autobiography on 201 questions"
"To our children's Children: Preserving Family History for Generations to Come"
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Thanks for the suggestions for the books love them and saved them to my wish list. I told the dr. the other day that I need him to keep me around until next june when my kids graduate high school after that is just gravy, of course he said he intends on me being here longer than that, and I appreciate it.
I started writing in journals (just spiral notebooks) for a long time, actually just my older kids, 36, 33, and 30...not for the twins who are 17, one for each of them and now I have 6 grandchildren 15, 13, 8, 5, 17 months and 16 months so I think I will write just 1 book for the grandchildren based on the books above and continue to write the individual ones for the kids.
Am I scared don't think so, I am just worried about my kids, all of them, we have not gotten along for a while (the girls) the boys just blow me off, but unfortunatelly for them I think I still must parent them even if they are in their 30's and if I don't like the way they act or talk or treat people I feel the need to say something. so that is an issue with them, but they will understand when their kids get older and they see them doing things they shouldn't be.
Unfortunately, I live with the twins (and one of the twins can't deal with being around me so he is staying at my daughters since he got out of school, which is 10 minutes away) and they are not handling it very well and well lets just say not very nice to me and the others don't really know anything and I find myself pushing them away, just don't want them hurt, my son (the oldest) has his head and the sand and I think for all of them because I don't look like anything is wrong with me, they think I am lying about the illness or blowing it out of proportion. I must say that I miss the twin that is not here and want to spend time with him and make memories for us but it is too hard for him and he is mean to me so it is better that he is there....
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TheDivineMrsM - I got The Story of a Lifetime. It is very comprehensive, but there are some sections that don't apply to me - i.e. Military Life, and Golden Years (though I hope that one will one day). Still there are some great questions in the book, and extra pages at the end if needed.
Scuttlers - I hope the words that describe my death are "fought like hell with her last breath". I'm sorry if what I wrote came across poorly about a peaceful death. I think I just truly want to hope that in the end, when we know there is nothing left to be done, an innate, intuitive understanding comes over us that helps ease our fears and apprehension. I can't know if that's true, I just hope it is. -
Eeeesh. I'm now going to have to applaud ma111's opening post warning those who wander in here who are squeamish about the death and dying thing -- "IF YOU CANNOT HANDLE IT, THAN GO TO A DIFFERENT POST PLEASE."
Well do you like THIS one? I am going to have to stop coming to this thread now. Oh, I can handle, relate to, occasionally even join in on all the general and specific talk about the "we should make plans for what to do about what kind of medical care we want or don't want, who we want to have our stuff or our money, before we're too ill to do it or even speak for ourselves"; if we'd "rather decline and die at home or in hospice"; writing obituaries, leaving scrapbooks or what-have-you for those we leave behind, making funeral plans (or not) and so on, and I don't think that's even slightly morbid, Oh, and good one, Suze35, about wondering what those we leave behind will do after we die; as in feeling heartbroken at the idea of one's husband or lover "moving on" after mourning us, yet at the same time wanting them to be happy and loved even though it can no longer be with us. I do totally get that one -- no kids to raise but at the same time I shudder at the thought of my Pack Rat loving and being loved with someone else, I have to smack myself and yell "HUH, what is THIS crap? You WANT him to be unloved and celibate for the rest of his life after I die? NOT!!"
However, I can NOT handle this thread any more on account of all the hope and afterlife and prayers and the still pervasive warriors who go out fighting attitudes and the mere idea which is held implicitly, sometimes explicitly, that stopping treatment = giving up the "fight."
Sooooo.... I gotta go. All the best to you.
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That's Life------Chrissy is so right. Palliative care is a fairly recent concept. The doc's involved have taken special training and are so good as are the Social Workers. Nurse too. Sheila
This was in response to Chrissy responding to ThatsLife on p6 . This thread is moving fast
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MA111- Yes, you are right about the scary unknown of dying. I think I am so scared of not living that dying seems, in comparison, to be not as concerning. That sounds really stupid!! (me stupid, not you, hee hee)
Scuttlers- I understand what you mean. My attitude is similar. I also know that eventually treatment stops working. Although I fight as hard as I can and do the most aggressive treatment possible I realize that I will die of this cancer.
I don't think it is "giving up" to come to peace with dying. I pray to God that I handle what comes along with this cancer "journey" (including death) with strength, grace, and dignity. I refuse to let cancer define me, but I don't mind if the way I handle it is part of what defines me. That does not mean I do not fight like hell each and every day to be here.
Lori
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I've been reading here since the begining of the thread, but until now had not posted. Well today I got AHA moment and decided it was time.
I'm grateful for a the suggestions about wills, things to be given away etc.,etc.......Today I was at onc's office for Taxotere second round in a year. Arimedex and Femara failed me and I started to get new tumors, none to organs thank goodness just progression. Anyways onc said I'll continue til mid July then they will scan and hopefully start Faslodex, but if Faslodex fails then I'll be on chemo forever. That's when AHA or OH SHIT moment hit! Do I really want to do this the rest of what ever life I have left and when will that enough is enough moment hit?
Looks like I better get busy planning that trip to Tuscany (with what money I don't know), Gotta get my papers in order, have THE TALK with DH. Not that I feel like I am going anywhere soon, but I know that all of you get me.
Take care all and thanks for all the advice I'll be getting busy soon.
Peace and Love,
Edie
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Lori - you have so eloquently expressed how I feel about this. Thank you.
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Lori,
That does not sound stupid! I undersatnd what you mean and thanks for explaining the peaceful death/fighting issue more clearly. You are a good writer.
Lena, I understand.
Hi cookie, I will say a special prayer for you tonight. Not everyhting has to be done right now. Sorry to hear it's all chemo for you now, this disease just plain sucks!!!! I am on a vaccine and low dose chemo trail now and the side effects are so much less. i also saw some disease reduction with just the vaccine. They wait 3 weeks after the vaccine before the low dose chemo. However, it is a phase 1 study and who knows what the results will be.
Well all, I am taking Vicodan today and it is times for me to nap, I feel like a kid saying that.
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I think it takes so much courage to deal with everything from the first words out of the drs. mouth "the results are postivie" or " you have cancer" or "it isn't good" or whatever the words are, from that point in time how we deal with it is an individualized time. Someone want to know everything, some people don't want to know anything.....we hope and pray that whatever the professionals put us on based on their education and experience is something that will either get rid of it for ever or a period of time, or keep us comfortable or extend our lives. We know what is coming, eventually, are we allowed to be upset, depressed, down absolutely we don't have to be strong all the time, we don't have to be strong 1/2 the time, we need to live our lives whatever they are which ever we want to, surrounded with the people that we chose to be in our lives. If people don't like how we are "handling" it or the way we "talk" about it, then they don't need to be included in our cicle of people, cause they are supporters. Supporters, IMO are the ones who love you anyway and are there for the right reasons and don't leave you when "cancer" is too painful for them to tolerate.
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blondie, Your post is just so sad. I wish grown kids of those with cancer would just really think about their actions and realize what they are missing. HUgs and luvs, Mazy
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Does anyone know if one can die at home w/hospice care if one lives alone?
I thought I read somewhere that hospice will only come to a person's home if a relative/friend of the dying is there 24/7.
If this is true, it worries me terribly. I live alone and do not have family, nor can I expect a friend to take time off from work to be at my home 24/7.
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good question jelly!!
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Susan- Love the humor at the end- i wanted to give my niece my nissan sentra but she couldnt learn how to drive standard either! (her dad wanted to take over the payments) Its good that you do these things with her, even if you didnt have bc these are things she'd need to learn.
Thank you for that insight pizzadad! It solidfies what i am doing
corian- thank you for posting, it is really wonderful to hear of people peacful passings.
I have a sister who says she doesnt believe in God, her son was 1 at the time and he was in the hospital with meningitis. He had been there a few days because they really didnt think he was going to make it, she had left to go to work while her older son and hteir father sat with the baby. When she came back she saw through the window a woman standing there, when she opened the door it was just her family. She asked where'd the woman go and both her son and boyfriend were puzzled, she knew right then her son was goingto be okay. He had a gaurdian angel there with him. Funny my sister says she doesnt believe in God but accepts the fact that his messangers existMa- thats wonderful that they are going to use you to study why- maybe one day NO ONE will get nuropathy anymore!
Peggy- i believe her story with no doubt in my mind, how in the 1920s would she have learned of something like this before TV, and internet! Now we chalk it us to the idea was planted in our minds because of a movie we watched and so we dream of it.... Nope this sounds like the real deal.
chickadee- because of my husabands line of work i assumed he'd go first (police officer) Not that he'd die in the line of duty but statistically officers often die within a few years of retirement, not sure why....
Blondie- sadly they may not realise til its too late to make up for that time lossed, maybe if one of them went wth you to the drs and heard first hand.... (i had a sister in law, well still have but havent talked to her in almost a year- she went all crazy thought i ws faking my cancer and actually called the police who showed up at my chemo treatment- LONG story but anyhow i figure its her loss not mine)
Jelly- Not sure that'd be a good question to ask them... -
I need to get busy.
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Texas rose--------Please tell the story of the SIL sending cops to your chemo--------What did they say to you? This is so far off the map. Then what did SIL say. Was she sited for making a false police report? Details please, real nosy on this one !
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Talk about toxic family members.........that SIL takes the cake.
Like anyone would put us through treatment without clinical evidence of the disease......sheesh. Guess she thought you were getting RICH off those SSI payments........NOT.
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Okay this is the story- (sorry its very long)
My husband has 7 brothers and sisters, each one is married- so thats a LARGE amount of in-laws... My husbands brother F is married to K, she has in the past done things others that was rude and immature to other people, but has NEVER in the past shown me her true side. I am close to a majority of my husbands brothers and sisters- even when they arent talking to eachother they are always talking to me- sorta like the glue... So anyhow we moved back to TX in Sept of 09 went to F&K's son's birthday party in nov. with no problems, they came to my sons birhtday party in nov as well... We kept calling them to see if we could get together for a dinnre or something and they'd say we'll call you back and never call. It got to the point where we knew they were giving us the cold shoulder, which for me hurt because i knew i never did anything to either of them, when everyone called her the b word i would stick up for her and say this or that about her....
So fast forward to July of last year so its been 8 months since we've talked to either of them... Oh as a side note i am friends with K's sister and i went to her sons bday party in may 2010 and of course f and k were there it was a little akward at first since i knew they had been ignoring me for so long, so anyhow my daughter's birthday is the 1st week in July, at that time my husband had wed thurs off, we in june moved 3 hours away from our family so we opted to do a birthday party in their city. Of course that means either wed or thurs, my brother in law has to undrego dyalisis mon,wed,fri every week so we chose to do the party on thur so he could come along with his 8 year old daughter. We did a BBQ with a bounce house for the kids, it was a bug themed party- very cool and low key. Needless to say even after i mailed off the invitations 2 weeks before the party they didnt RSVP for the party, or show up. No sweat off my brow really. Also my husbands sister L didnt come either, didnt rsvp or anything either. (this is important later) So that was july 8th, on july 22nd i was dx'd with breast cancer and we figured it was bad because there was lymph involvment.
Cancer is NOT news you want to have to tell anyone over the phone. So i called everyone and let them know that we were going to have a dinner @ my father in laws house and we'd love for them to come. Simple like that, well of course F&K and L did not show up. L actually called and said she couldnt go because her husband's mom showed up, i said bring her with but she said no they cant make it. Fine no problem. For those we came we let know of my dx and let them know that we could really use their emotinal support, but we told them NOT to tell any of the family members who decided not to come. We didnt and still dont want any fake sympathy. People who are there for you should be there in your good and your bad!
So of course i have a sil that is only 23 and very immature- so she goes and texts K and made it seem that my fil was sick, she said something like "have you talked to our fil recently? someone is sick in the fam" Anyhow so they get into it and it comes out that i have cancer and lo and behold they call me!!! I was angry beyond belief and instead picking up and cussing at them i let it go to voice mail. Both of them apologised for not being there and such. After a week i felt better and called both of them. The conversation with K was so emotinal, we cried, she said she quit smoking and she felt that my dx was her dx ect... She explained to me that she felt we had intentionally planned the party so she couldnt make it, they actually never opened the invitation until the day of the party (goes to show where we are on her priorities), i explained why we picked that day and told her had she called me i would have gladly told her. She went on to say when she got my voice mail she heard it was me and deleted it without hearing beyond we want them to come over. SHe said she figured that we were re-doing my daughters bday party (wth you are not that important htat your presence was missed enough to redo a party) Anyhow so we squashed all the bad blood. Oh yeah and she told me the reason she was ignoring us and not answering my emails, texts or calls was because i was close to the other siblings that she didnt like- which to me isnt really a good reason.
So she really turned this new leaf (for the moment) she was calling me constantly to see how i was doing, added me to her facebook, started the fundraiser which was successful. Really a new leaf. Whereas the other family memebers that had been there for me started backing off because i was so close with K. So it was like a double edged sword. There was a lot of bad blood between all the family...
SO sept 18th we had the fundraiser, raised a little over $5,000 and as you all know in the begining there are so many doctor visits, tests and all that i had over that much is co-pays, not to mention gas and all that so it was helpful. By this point i was already undergoing chemo, knew i was stage 4 etc...
HERES WHERE IT WENT WRONG- i am not sure how many of you are aware of the famous river walk in san antonio. We had the fund raiser at the VFW post off of the riverwalk and so there is a lot of foot traffic- me along with K's sister sat near the riverwalk enterance and solicited donations. There was this whole group of bikers that showed up because apparently the head of their chapter had them come, it all and all was awesome. Meanwhile my other bro in law D and his friend was bbqing the chicken (part of the plates we were selling) and apprently the chicken was underdone. A co-worker of k's said that she couldnt make the fundraiser because her mom was in the hospital from food poisining (which happened before the bbq but K was so stressed she snapped) she started flipping out and i have a saying "its just a speed bump" meaning whatever life gives me it may slow me down but it aint gonna stop me. She was yelling its not a speed bump its a damn mountain ect... But people were satsified i never got any complaints. I personally raised $1100 that day and had it in my bag, they had the rest of the money and instead of just giving it to me there she said she'd take it home to count it and give it to me later.
I was staying at L's house so that is saturday, sunday all hell breaks loose. I wake up at 6 in the AM with a bunch of texts from K saying that i went above and beyond what my chemo is going to cost me and i need to pay back the people that donated (besides the bbq fundraiser she set up one of those online donation sites which my friends and family donated to- that raised a little over $500) SHe said she was going to keep a certain amount for her co-workers. i told her to do what she felt was right. SHe then tells me to go onto face book and see whats going on, i told her L was sleeping (the computer is in her room) she demanded i get on, so i woke up L and her husband to get on line. There was her friend on her own site saying that her mom was in the hospital from food posining, K replied that we'd pay any hospital costs. And all this other crazy mumbo jumbo. (On a side note that friend of hers emailed me personally and let me know that they NEVER made it to our bbq that her mom got the food posining from a breakfast taco)
Anyhow so K was saying that i should be happy that i made all this money and that if i didnt pay back whatever was beyond the cost of my chemo that i ws making a profit off of my friends and that i did this for the money. I old her to calm the F* down, she can have all the money, i never did any of this for money and in fact i never even suggested they do a fundraiser because even though my husband makes beans we will eventually pay off our debts without the help of all these people. SHe was wigging out and so i grabbed L's car keys (btw my kids were still asleep at this point) i had intened to drive over to K's house and kick her ass! l grabbed me and said she'd go over there to talk to her and calm her down. I handed her the bag with ALL the money and said take it. K wants it, she can give it all back i dont care.
K had made all these accusations in our last call so i told her "you're a crazy psycho b****" and hung up.
So I called my best friend to come and pick me up so i could stay with her, i had chemo the next day and my husband was back home working. I told L that i was only going to my friends to wait for my husband to pick me up (which wasnt true i just didnt want them bothering me)
So K preceded to email a few of my friends off of facebook that had been the biggest supporters of me (which all 3of them forwarded to me) that she thought i was faking my cancer, that i had yelled she was a B**** after she asked to come to my chemo, that my head was obviously shaved (no shit as most of you know you get tired of the hair falling out in clumps so you end up shaving it yourself) among other things, so totally discrediting me to my friends. How did she explain the port? Self surgery??? My friends asked that then she changed it saying it wasnt as severeas i was making it out to be.
So she is saying on FB where everyone can read that i am faking it, that i am refusing to allow them to come to my chemo and all this other shit. Like how i was "running up and down the river walk beggin for donations" Everyone that knows me is blasting her telling her that she's a liar ect.... I told her through one of the friends that she was emailing that she is more than welcome to come to my chemo, see my dr and ask any questions that she wants. I will pay for the time if needed. She says fine she will send her sisters husband to come because he has the time off. I say no problem, i have NOTHING to hide. Also as a side note he sister is also saying these awful things about me as well.
Well monday rolls around and i got to my chemo appointment, i get there and there is this police officer there, i remark to my brother- i hope that cop isnt here for me. My bro says no K wouldnt stoop that low (well yes she would!) So the cop comes and goes, instead of goingto the infusion room my dr asks to see me.
Just as a side note as i am typing this all these emotions are flooding back, i can feel my heart racing, sorry if it seems all over the place!
So i go in and see my dr and i ask, were those cops here for me? He said if i knew who "X" was, i said yes that's K's mom. Well apparently they thought that either my dr or myself was running a scam on everyone and that i didnt have cancer, my dr showed hte cop my medical records. Oh and they accused my husband of coming to their home on sunday and breaking in (funny cuz i he didnt really come back into town) My dr and i had a talk about these kinds of people (he felt K was crazy just by what she was doing). Then i got hooked up to my infusion, about an hour into it my dr comes back and says K and her sister are here, they'd like to talk to him and he can turn them away or be open with htem its my choice. I said lets nip this in the bud because they obviously need to see for themselves that i am being truthful because the cops couldnt convince them.
So they talk for an hour, they both come out crying apologising to me and everything and i am like okay. its fine its just a speed bump, go home rest ect... They leave and my dr comes in and says they left a cashiers check (the $5000) for me so they (the dr office) could apply it to my balance, but he said that it wasnt their choice what i did with my money so he gave it to me. I finish my chemo and head back to my bros house...
Well unbeknown to me they had come back to the oncologists about an hour after i left and asked what they did with the check, they told her that they gave it to me, and that set her off. They had to ask for her to leave.
All of a sudden i am getting all these texts from my friends saying to get on to facebook, so i get online and see she has posted well over 25 messages, how this strange truck (also posted the pic) was following her, that someone keeps coming over to her house and trying to rattle the windows and some other crazy nonsense. THEN SHE POSTS THAT SHE SPOKE WITH MY DR AND THAT MY DR CONFIRMED THAT I HAD STAGE 4 AND THAT I ONLY HAD ABOUT 2 YEARS TO LIVE BUT HE SAID IT WOULD DEVESTATE ME TO FIND OUT! why in the hell would you post that on my facebook if you are concerned for me?!?!?!?!
Well of course my friends arent gonna let her say these things without commenting back, it went back and forth til tuesday (when i had to get my next day shot)
And i chose to take the high road and not comment back AT ALL, apprently that pissed her off enough where she and her sister removed themselves from my fb friends, well she would call me and i would let voice mail pick it up, she'd leave 1 message sounding sweet as honey and then the next day call back and say evil she said "that the reason why you're dying is because you need to get right by God and that no one can save you now, I cant save you no one can save you but Jesus" puhleese! I still to this day nearly a year later have not contacted her at all! I ended up having to change my number because she kept calling.
Oh yeah and after they removed themselves i posted pics of my fundraiser on my fb, somehow within minutes of me posting they knew, her sister texted me and asked me to remove ALL pics of anyone in her family, i did and within minutes again she texted me Thanks. So i deleted anyone that was a mutual friend, obviously they were able to see my private pics! Family or not so L was removed.
Oh and L when i left her house made this big dramtic scene saying how she knows i will take my kids from her and she was sobbing over them, they were 5 and 2 at the time. i told her that no i will always be in her life and i will see her later, she said i dont believe that, so i said see ya at my funeral which pissed her off- i said it jokingly because she was making a scene. Well anyhow i sent her pics of the kids (snail mail) she never called me, i called her for her bday and she never called back... so she once agian is ignoring us too...
i will say thing, when someone is dying or died it brings out the worst in people. this was while i was still here, just imagine what she is capablie of when i am gone. this should be a reminder to get our affairs in order.
edited for clarity, lol when i read back i seem to skip a lot, let me know if i lost y'all
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chickadee, this actually happened before SSI, but yeah like i am using this terrible disease to make $, when people ask if they can help i turn down money saying prayers please
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OMG, Timothea! This is the last kind of stuff you need while dealing with stage lV breast cancer! What is wrong with people?
I'm so sorry you're going through this added stress. They sound like a bunch of crazies! Stay as far away from them as you can, even if you have to get a "restraining order".Peggy
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Texasrose-----------the woman is unglued. She is so far out their that it's hard to fathom. It's too bad to have someone in the family that can cause so much disruption to those that care about each other. I'll be back want to ask someone thing about this-
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Texas,
Oh my God, OMG< OMG.
I will never feel sorry fro myself that my sister hollered at me for telling family I had cancer!!!!!!!!
Like there isn't enough to deal with, family of all people act like a*&^*s.
You are a better person than me. I am planning on ditching a 4th of July family party because that same sister is now out of denial and celebrating my possible last holidays. How do you manage to forgive her and ever have given her the time of day. I guess I hold to many grudeges.
I agree with Peggy, "restraining order". Stay far away. I don't know if I would have let them in the doc's office.
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texas rose-----I was going to ask someone that might be able to give some legal advise. But then decided against it. I agree with MA, restraining order for your treatment center your residence etc. Itseems to me she has violated your right to privacy by putting your private medical information on the internet. That could have an economic impact on you in the future. You mentioned that money was tight. Contact the legal aid department in your community and see if you can't get their opinion. Or let this ride here for a few days and seewhat other people have to say
or delete now. C&P and send it to someone her that will archive it for you. The reason off the top of my head regading deleting now is----------she' fruitloops enough to try and say you are sladering and /libeling her.Since you have your real name associated with Texas steell rose. She is fruitloops enough to have figuired out how to monitor what you say here.
ON "OMG THEY FOUND A CURE FOR STUPID" WE FOUND MANY OF THE THINGS WE WERE SAYING WERE BEING REPRINTED On FB
Delete from here as fast as you can. MY instincts are strong on this one, IF you feel safer deleting do so. but get it off the board somehow fast. I'm posting now and will give details later hopefully you will see this real soon sas
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TEXAS ROSE-------when we found out things were being put on FB, that included our names and dx many of us deleted info from our profile sites. If you notice i'm just ----sas----Thats why.
Others that had picture avatars changed them to something else like chickens.
I'll pm you with my other thoughts
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I moved to Tx to get away from crazy family members. So sorry you have to be even 3 hours close to this one.
I think SAS may be right. You've revealed too much and this crazy B might just try to continue causing mayhem in your life.
Reinforces my decision not to get on these social networks like FB. People use it for some pretty horrific behavior.
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My brother died at 1:25 A.M. today. He had been diagnosed with lung cancer less than 3 months ago. I am feeling so dead. I should be crying. Instead the chemo brain makes me forget temporarily what has happened. This is the third member of my family who has died since I was diagnosed in 2006. All younger than me. I feel weird like they were sacrificied so I could keep on going. I think I am losing my mind.He died in Palliative Care and yes they have come a long way. He had breathing issues but they never let him be in pain. May we all have the same when the time comes.
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imbell, I'm very sorry you lost your brother.
I know you will miss him so much. This on top of everything else you have to deal with. Don't feel like your family members were being sacrificed so you could keep going. Some types of cancer take people sooner than other types. I knew two people who were diagnosed with cancer the same time as my Mother and they are gone now. At least with breast cancer there are lots of treatments.Peggy
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imbell,
I'm so sorry for your brother's passing... May he rest in peace.
Yan.
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Timothea,
I'm like... OMG!!! There're some nuts people around...
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Imbell,
I'm sorry for your loss. My condolences.
Lane
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Imbell, I am so sorry. It's not possible that they were sacrficed for you.
Texas, OMG again and I think the others are giving you good advise. There is not telling what that B will do.
Others, I am not aware of what has happened that you took pictures off.
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Imbell, I am so sorry to hear about your brother. I'm glad he had the type of care that helped him be as comfortable as possible.
Keep your loving memories of him. Some day they will bring you joy.
May G-d send you comfort.
Leah
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Imbell, I'm so sorry for your loss. We don't know each other at all, but I'll take the liberty and call you Dear One. You are not responsible for any of this.We know not the time or place nor the reason of our demise. It happens. No explanation can make us understand. No explanation can make it easier. It is. If you have been blessed to love each other and have happy memories to carry with you in your heart for those that you have lost, it will make the tears easier. When you are sad about each of them leaving, remember the very special times you had together. The tears will flow, but they will be less hurtful. Let those happy memories gladden your spirit. This is not a trite statement, it can help you avoid despair. You loved them all, that is heard in your words. For you to care that much, they loved you too, they would want you to continue and be the person they loved. Dear One listen to them, they love you, Namaste
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Chickadee-----what allot of people don't realize here, is we have lurkers and people that can register and have access to info that can be quoted or if they are registered can be C&P to the outside like FB. So, if there is anything you don't want known to the world ---don't put it here. Our PM's are ours. the outside world can't reach them. So, when writing , think do I care about anyone reading what I write. I was naive at first, when I found this out I changed my username pronto. Wish I had been more creative, I just looked around and it's me and my dog. I love your name Chickadee, I love Tinkertude, and Tigerblood and so many others, but i'm in so deep now it would confuse to many people.
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Ditto to what SAS said, I'm 100% sure that insurance companies have lots of spies here too.
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Jelly
When I was working in hospice several patients lived alone -
Jelly
When I was working in hospice several patients lived alone -
TX Rose
Good gawd! People can be as toxic as cancer! We need something similar to chemo to remove stupid from their bodies..... " stupid be gone O"
Take the high road girlfriend, you are worth more than that -
Imbell.....I am so sorry. Losing a sibling is sooo hard. I will keep u in my prayers. Luv and hugs, Mazy
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Imbell - so very sorry for your loss. Warmest condolences.
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Imbell, my sincerest condolences........I know how you feel as I lost my bother to lung cancer three years ago. (((((((hugs)))))) It's hard to loose a family member but to loose three must be so difficult but you are in no way responsible.
Tomothea...OMG a nut case for sure. Please make sure you give nothing that she can turn against you.
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Imbell, I'm so sorry for your loss. I have five siblings and know I would be devastated to lose one. Heck I was devestated when I lost a cousin. Just know it's not because of you!
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Corian, thank you so much!!! I've been worried sick about that issue.
Mary Bell, condolences on your loss.
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Mary Bell, sending a cyber hug your way, I am so saddened to hear this! Sincere condolences.
T - wow, and I thought I had family issues. So sorry. Don't know if I would give them ANY access to anyone in your care circle. Take care of you! -
I am so sorry for your loss, imbell. And what you have had to go through with your family these past years.
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SAS, I used my first name for quite a while and didn't give it too much thought, but it's spelled uniquely and one day I just felt exposed, so I decided on a favorite backyard bird,the Chickadee with it's cute little black cap.
Think I'll play around with the picture now. There ya go, nice little Chickadee. Scary world out there.
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Imbell, sorry for your loss. I lost 2 of my brothers; one was killed by a drunk driver and the other way dropped dead suddenly at age 50 and I was working in his office at the time. The pain is off the chart so the only thing I try to dwell on is the happy times with him. Like the others I dont think anyone is being sacrified; I just think God called them home sooner. Stress plays a big role in our recovery so rely on the support you have from other family members and friends. Diane
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chickadee ----Ditto-on the scary world. Love the pic.
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Oh Imbell, I'm so very sorry to hear this news. It is so difficult to lose a sibling... my thoughts are with you and your family. Sending you love...
Rose.
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imbell: its ok to feel 'dead', and to forget for a minute..its all ok, all part of grieving, all part of life and death...we have no control over the cards we are dealt, our only choice is to live the best life we can xxx
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imbell - I'm very sorry about the loss of your brother. My thoughts are with you.
Texasrose - I have no words. How horrible! -
[[[[[[[[[[IMBELL - HUGS ]]]]]]]]]]]]]]]]]]]]]]]]]]]
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IMBell- I am so sorry for your loss. To lose anybody is hard enough without the added stress of our dx's.
Re: my crazy in law. I am over it. All is forgiven but it doesnt mean i will ever have anyhting to do with her or her family again. I miss my nephews terribly but that just something I have to deal with.
I dont get why it was suggested that i change my name and deleat the ost though...
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The suggestion to delete the post is to protect you in case your crazy inlaw would go so far as to find that information and use it in some hurtful way yet again.
I think it's not a bad idea to delete it, otherwise it becomes a permanent record in cyberspace.
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I can relate to you TexasROse, some people are crazy and doesn't have a heart at all. My SIL posted in her FB the day she found out I had a breast cancer, she goes "You reap what you SOW and I hope you deserve what you get. I haven't done anything bad to her, its just that my crazy MIL is telling her bad stuff about me. I hate my dh family, they only show fake sympathy. I wish I have my family with me, at least I wouldn't feel sad sometimes. Hugsss :-)
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Sweet angle, Your SIL is sick. She must have been referring to herself.
Others, You are a great bunch of people. Post after post of sending cyber hugs to people in need of them.
Tomorrow I am going to the SSI office. Getting to sick to work. How good/bad is the SSI health insurance?
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ma...Since u have stage 4, u should have no problems getting approved. You can apply now but have to put in ur 5 months of not working before you get ur first check on the 6th month. My Medicare didnt start for 24 months after the date of my first check. I have a medicare supplement plan and our clinic usually accepts that and Medicare as paid in full. I did have to pay $12 this year for some shoe risers. LOL. The prescription plan isnt bad but not the best depending on what drugs u r on. I have 2 very pricey drugs and it really hurts my purse when I am in the "gap" or "donut hole". As a whole I have way less medical expense since I have been on Medicare as opposed to my former health ins. I carried COBRA for a total of 27 months til Medicare kicked in. My former employer tried to drop me after 18 mo but could not because I had become disabled while on COBRA and that qualified me to keep COBRA for a total of 29 mo and in some cases it coulda been extended to 36 mo. I dont know if its different state by state. I am in Illinois. Also, if u are low income u may qualify for SSI while awaiting SSDI to start and theres no waiting period on that but its not much compared to SSDI. But anything is better than nothing. Hugs, Mazy
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Mazy, I am glad there is an office close to me because I don't even understand the difference between SSI and SSDI.
My current insurance has a $5,000 out of pocket expense and covers everything. I have had a lot of compliments on it. I can get a pet next day, I have had 5. It covers Herceptin, celebrex, Taxotere and everything else people have ordered. I have the option of keeping it for $500 a month. There is no donut hole. After the $5,000 I don't have co-pays for meds or doc visits even. I'm trying to figure out if I would be better off keeping the insurance I have with the extra expense or going on the SSI insurance. What are your total co-pays?
Sorry I am asking you for a lot of info.
Thanks
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I'm no expert on the social security stuff, but I don't believe there is an SSI insurance. SSI is income and asset based, you only qualify if you really have nothing. It's not insurance though, I think if you qualify for SSI then you'd qualify for Medicaid. But I'm not sure, you should check with your social security office. I know that in my state, I didn't qualify for SSI because I had a 401k.
SSDI is disability insurance-- you've paid into this if you have worked. It provides a check, not health insurance. At Stage IV we qualify for this when we stop working. You have to be on SSDI for two years before Medicare kicks in. For the two years in-between, you have to have your own private insurance. Or it sounds like you could continue your current insurance through COBRA. That's what I do, and I even got a COBRA extension so I'm covered the extra six months (typically COBRA expires after 18 months).
There are a few threads about SSDI in the Stage IV forum and also in the Financial Issues forum. You might check those out. Also, if the place you get cancer treatment has a social worker, it would be worth talking to him/her, they usually know about a lot of this stuff!
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Thanks for the advise. I called SS today 1-800-772-1213. They said I have to wait unyill I no linger have an income above $1,000. It than takes 5 months to a year to get approved, however they do back pay from the time you apply.
So, back to some grim thoughts. I have a daughter and would like for my funeral to be paid for and leave her the house. If I go on disability my mortage is too high and I loose the house. Won't be able to afford food/utilities or car payment. Ouch, the grim reality of dying, why can't it be fast instead of losing everything before you die. I hope that what causes me to not be able to work is brain mets, that fairly quick.
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Ma,
Petjunkie is correct. SSI is not health insurance. Its simply a small amount of money each month for those who are very poor. They do count equity in your home etc. In 2007 I could have no assets above $3000 to qualify but thats for Illinois. When you go on Social Security Disability you have to wait 24 months before you can start medicare. Medicare is what will then be used to help pay your medical expenses but you have to have a seperate ins (small amt) for pescription coverage.I was approved in 6 weeks for SSDI. Many of us wont be able to leave our loved ones what we had hoped. Its sad but there's no easy answer to that question. If you cant afford to keep your home, you will probly have no choice but to sell it or let it go back. I hope this all works for you somehow. One thing I noticed that has changed since I applied for SSDI...I wasnt allowed to have any income at all for 5 months and you said that you could have under $1000. So thats good. Hugs, Mazy
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Maybe I can rent the house I am in and my Daughter can still get it. I am the only parent she has, I really want to leasve her something. Not being able to work wil really increase my stress level a lot. I don't like thinking of not maintain the house. I world so hard to save money to get it and I love it.
Life just sucks sometimes. Maybe after I stop working I can get a part thing going and try to get help from American Cancer Society ro someone and maybe keep it for a few months. Deep depression if I lose the house.
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Hey y'all. My results w SSDI: had to resign job. As of Feb 1 I was unemployed. By late Feb-early March they notified me that I would receive SSDI. However, the payment starts in July but for some reason I wont see it until August. Not at all convinced that the money will be retroactive. I dare not even dream that. Really doubt it.
May I ask a favor? If and when I pass, may I not be called an angel? How about I turn into part of the universe? Too cynical for an angel. :^). Kathy -
kathy, i hear you there, and i feel the same
you have made me think that maybe we could have a thread, or the moderators could make one, called something like "how i would like to be remembered on bco" I know that Konakats friends were eating chocolate in celebration of her life, wanting to do something....we could then have one place where we have said how we would like the notification worded, if we would like donations to a charity, or a slice of bco chocolate cake, or even a poem or saying or a message to be posted.....i think if we wrote these things prior to when we are coming to the end of the journey and unable to, it would help our friends here to know what to do, or say, or just be comforted.....what do you all think of this idea?...we could put it to the moderators if you all think it would be a good thing?
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If there is a choice I am going to Phecda, part of the big dipper. That's where my brother was headed and I am going to join him. Don't know why he chose that star; loved astronomy in general.
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Omg, that's a wonderful idea thatslife!
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SSD is the retirement money you would have gotten when you would have retired at 62,65, it is not for poor people it is the money you put into social security since you started working, that is why people that never worked outside of the home does not qualify for it. Yearly you get a form if you work) saying how much you put into SS....I applied for medical insurance because I didn't have any and got it under the "healthy women program" It is medicad and I use my access card that I get my food stamps on....
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THATS LIFE: Beautifully put! How do we start the thread?
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K-lo, You are not too cynical to be an angel. I am one to say that we should not expect too much of ourselves. Our situations suck and we are forced to deal with it in an enviorment that the public thinks breat cancer is a curable situation and we should not indicate otherwise.
That's life, I like that idea. I picked a card for my funernal that says, "don't cry for me I am in a better place". So when it is my turn, please eat choclate.
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K-lo,
To start a thread go to the forum index. At the top of whatever forum you want click on start new thread.
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thanks klo, corian, ma111...i thought i would be nice.. anyway......
imbell phecda, thats so nice....we will be trully part of the universe...see you out there xx
ma111 hope things are looking up a bit for you, thinking of you x
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thatslife..greattttttt idea
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The thread has been created called 'How would you like to be remembered?' Please feel free to add your preferences.
Love n hugs. Chrissy
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About SSD- it is tricky because it only counts your work credits after the age 21 (who knows why?) and up until you become disabled. Thats why i didnt qualify for that because my work credits were in the wrong time frame- i stopped working at 22 to stay home and raise a family. But 16-21 worked guess it didnt count.
Medicade is typical government insurance- things may take a while to get approved and also there are limited drs that accept it. My oncologist doesnt so i pay my co-pay from my primary insurance to see him, when i got approved for medicade i didnt feel like switching oncos in the middle of my treatment.
Thanks chrissyb!
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New thread on social security questions answered by a lawyer whose wife has BC. Knows his stuff------posting on a bunch of threads---------go to financial forum
Can't make link work without trouble, not up for it.
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thanks!
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hello all,
Sorry I haven't posted for a while. They decreased my dose of Taxoterible on the vaccine trail to prevent me from being hospitalized. No intake results in dehydration and malnourishment. I was discouraged and considering stopping treatment because I cannot stand being that sick all the time. Stand up get dizzy, drinking water hurt the stomach, how much are we supposed to withstand? My tumor markers have decreased faster than when I was on the high dose chemo for my first round and I was on Taxoetere, Carboplatin and Herceptin.
I don't like to post when I am down and discourage others. But really, let's keep treatment resonable so we can function.
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Hi Ma, sorry you are feeling so down but perhaps the lowered dosage may give you a better QOL.....here's hoping. It's good that the tumor markers are going down. You can come here to post anytime, wether you are up of down because either way, you still need support.
Love n hugs. Chrissy
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really happy to hear from you ma111....and hope we can help some way, i do not get discouraged by sharing
...talk away, im here to listen any time -
The reduced dose did help me feel better and I am able to intake at least fluid this week. But now, I am having trouble with my legs and feet. Both feet trip me and my legs a wobbly. I might skip next weeks Taxotere. It's the vaccine that's helping anyway. The markers are going down faster than last time. However I half to do some of the chemo or they kick me off the trail and I cannot have any more vaccine. I want to be able to walk and take care of myself or I will be a misurable person one would not want to know!
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ma...
I'm glad you're feeling a bit better. I hope you will regain some strength in your limbs as well so that you can continue on with the trial. Great news about the TM's! I am thinking of you and send you love...
Rose.
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Thanks ladies for the support. I also hope my legs get better quickly and thanks for understanding I want to walk. Some peole just seem to not understand not wanting chemo when we go throught he hell parts of it. So many times I am sick from it I think bad thoughts and think well, just let myself go throught the dying process and lets get this over with. I would rather live, however I want QOL so very much and some days just don't have it to my satisfaction.
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I have been e-mailing the study doc. I am allowed to skip the 3rd chemo this session and stay on the study. Today my feet and legs are still weak, but I will be getting another vaccine.
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how would i like to be remembered?
as the director of the invisible choir.. (in the sky).
Best of luck to you ma111.. may you recover. My onc. suggested nutritious infusions (by infusion) at the cancer center if I got so weak and depleted.. I've not used that option yet.
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that is a good question apple, how would I like to be remembered?
As someone who cared about the feelings of others and loved her children and grandchildren!!
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I started a thread called How would you like to be remembered!
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This is my first visit to this page, primarily because I was to chicken to see what others are going through. As I am getting more "comfortable" with this dx, I can now look at it. I'm not in denial, heck I knew a long time ago this was going to take me eventually. All my paperwork is in order. Living will, power of attorneys, final arrangements. I just can't bring myself to finish the actual will of who gets what. I so admire the others here who have written notes for special occasions, memory boxes, letters. I can't do it without breaking down in tears! I know I need to, I have 3 kids, a step-daughter and one grandchild due in September. How do you do it?
DH really doesn't want to talk about it. As does anyone else. I'm worried as many have stated about the last weeks, the pain, how long will I be able to walk and take care of myself. The most dreaded thing in my mind for some silly reason is - if I have to go to the hospital, will it be the last time I look at my house, dogs, family as they wheel me out? Whew! I can't say these things to anyone else but the feelings are sometimes overwhelming. Not consuming, just occasionally popping in my pea brain. I had to get out of bed this morning because I started tearing up when DH rolled over to give me hugs. I laid there for a while and thought, what will he do without me, what will I do!
Sorry for the Saturday morning blues, but for some reason I got brave, opened this topic and spilled it!
Deborah
Foxy -
i hope you feel better for letting all that out foxy, i have those worriess too, but they come and go, and less often as time goes by, and i have realised that life is temporary for us all. a close friend died surfing the other day...made me realise i just have to enjoy the days i have on earth, do things that are important to me....i hope you have a nice weekend. x
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Hey girls, these thoughts are always going to pop into our heads as no-one wants to leave loved ones. I also think what will my DH do without me but I'm also reassured in the knowledge that whatever happens, after the initial grieving he will survive and that makes me happy.
Love n hugs. Chrissy
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Chrissy, I know he will. My kids have said they will take care of him. I worry about him more because he went into such severe depression after my first dx. It was incredible. He was the rock through all treatments, with the kids, taking care of me and the farm. When they said you are in remission, he fell, and hard. Four years of severe depression. Lost his job, had to pour ice water on him to get him out of bed. He's great now, no meds and his happy old self. People that really know us are a bit more worried about him than me. Lol.
Since the dx I have been showing him how to do things around here and started a calendar for general maintenance. The new fancy washing machine had the engineer stumped for a bit. Lol
Now teaching him about giving shots and worming the horses. How to look at them everyday and make sure they are ok, wound treatments, ect.
He will be ok, I'm a worry wart and a control freak! That's been hard, giving up a lot of control.
Thanks for the support and hugs!
Deborah
Foxy -
Deborah, the teaching thing must be in our blood as I've been trying to teach my DH to cook and operate the washer and dryer. His biggest bugbear is that fact that I have not long ago put in a new stove and he has to relearn how to use the it.
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Apple,
I like the choir thing. They haven't offered iv nutrituin to me. I still have to hang on to something to walk. It's getting better.
The one thing I havn'et much thought about is how I want to be remembered. Not badly of course.
thats=life, sorry to hear about your friend. That does bring to the surface that anyone can go at anytime, even with out our dx. Sometimes I feel that at least we have a chance to get final stuff in order.
Foxy, It seems to be common that DH don't like to talk. As you can see we talk about everything. It makes me feel better, however I need to post when I am down to help me feel better. Hopefully this site helps you out.
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thats life, sorry to hear about your friend. It does bring home the fact that anyone anywhere can go at anytime...
I wonder how my husband is gonna get along when i am no longer able to do for myself or die... dishes, laundry, paying bills, so many things he needs to learn to do.... I am glad my daughter has started doing the dishes
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I cannot find the how I want to be remembered thread.
Texas, your childern are so young and I remember other stories about your family. In the end, maybe hospice will help out to teach them what they need help with. They say that hospice helps the whole familoy and sticks around after we are gone. You can only do so much now. My daughter found it freaky when I was trying to teach her basics of banking.
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I'll bump it for you ma111
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Topic: How Would You Like To Be Remembered?
Would people try to keep this one active? Give more folks a chance to post....... -
ma... I hope your walking is improving every day. I'm back on my feet now but after my spinal surgery... grrrrrr... let's just say it was long and frustrating. Hang in there and keep your faith! I want to thank you again for starting this thread. You seem like a very kind, compassionate lady. I'm slowing coming to terms with these issues, and glad that there's a safe place to discuss them. Love to you...
texasrose... Reading about your daughter learning how to do the dishes made me so sad. I lost my Mom early on and I wanted to help my Dad out so badly. I wasn't very good at cooking or cleaning, so I do think you are absolutely doing the right thing by teaching your daughter now. Still it breaks my heart... it SHOULD NOT BE HAPPENING! I want reasons and answers but there are none. I hope you will be around for your daughter for many years to come!
I'm not afraid to die, but as others have said it makes me so darn sad to leave the people I love. I look at the dear, sweet man in my life who has been with me for 20 years and I see his fear. We're only in our 40's and this seems so premature. And we have so much fun together no matter what we do... I know I'll always want just one more day, just one more week...
We teach each other how to cope here. I am very grateful for all of you.
xoxo
Rose.
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Rose,
I am glad you are back on your feet again. I have to say, when I have major problems with everyday life, That's when my menality gets the worst. I am also in my 40's, and it is pre mature. My walking has improved, but get so weak and tired. Love back at you!!
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I had my case manager from bcbs send me advance directive info - what she sent was a packet prepared by the state with sample fill in tbe blank forms. Just reading through the packet is hard. I know it's something I have to do now while I "healthy" but.....
I cried a couple of times just reading through it. I can't imagine what it's going to be like when I'm actually completing it with my DH. -
ressie,
It is very hard to do the advance directive. It is important though so that your wishes are granted and so that your dh knows what you want.
Crying is part of it.
Sorry you are going through this.
Hugs to you.
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AHA! This is a good thread! Thx for guidance.
Now. Cremation or not. Is there a generational change? The early funeral followed by trip to cemetery always seemed healthy "for closure". Actual closure!
But our families are all over the country. I will be too if cremated. I was thinking to ask to be sprinkled in the Atlantic, gulf, and Pacific. That would require them to plan some trips to all the places we love. We can float in the warm gulf for hours, soon that's a very nice concept.
Hugs kathy -
bump
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My plans are for cremation after 1 day of viewing. I have arranged a rental casket. However, some people need a place to visit, so my ashes will be in the ground.
I think there is a generation change, but our parents will adjust. It is so much cheaper. Even to just open and close the grave site, vault. And, it is cheaper to rent a nice wood casket then to buy the cheapest metal one.
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I was looking at some papier mache coffins on line recently. Don't think I could go for the big wooden job - it's the thrifty Scot in me! Had this great idea that I would be transported in a VW camper and will have a Humanist celebration with some nice music and a slide show.
My friend who died a couple of years ago was training to be a vicar and in the church, they had this great slide show set up with photos of her from different stages of her life which was really lovely. Then we went to the local pub opposite the church for a wake.
There doen't seem to be much of a viewing tradition here in the UK. Don't think I've ever been to a funeral where there was a viewing. I think it's a good thing for young folk to see dead people. Death has become this shadowy thing that is either not talked about or Hollywood-ised and I think a lot of people have forgotten that it is just a part of the circle.
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Although I'm not living with Stage 4, I do work in the death-care industry; specifically for a cemetery administration office that sells cemetery property, arranges for digging, etc... So, if I may, here are my "two cents" for your consideration:
If you do have definite ideas about how/if you want a cemetery burial, and if finances allow, visit a funeral home/cemetery and pre-plan. The staff can guide you step-by-step through the process and answer all your questions. It's what they do for a living, so they will be direct in their answers and will not consider any questions morbid or inappropriate.
Ask about pre-payment options. Some cemeteries have them and you may be able to, gradually, pay for your funeral/burial - in advance - by monthly installments. Before you commit to a pre-payment plan, be sure you understand the terms and conditions. Some cemeteries charge interest on the outstanding balance and, if you pass away before paying off the plan, some cemeteries may insist on full payment before your burial can take place.Cremation is becoming more popular for several reasons. It is much less expensive than a traditional burials and people are becoming more "green". As a result, some cemeteries have cremation only graves (smaller and, therefore, less expensive than a full grave) and a few are introducing scattering gardens.
If you opt for a traditional burial (i.e., casket), make sure you understand the by-laws (regulations) of the cemetery you wish to be laid-to-rest in. Some cemeteries (at least, here in Canada) are making crypts/vaults mandatory because it lessens cemetery upkeep. It may be an extra expense that you/your family are not expecting.
Weekend (Saturday/Sunday) burials are, often, more expensive because the cemetery has to call in workers and pay them overtime.
Many people have very definite ideas about tombstones and memorialization. I've found that some families - who purchase in advance - and weren't thinking about memorialization when they purchased, are shocked and dismayed when they find out that they've bought property in an area of the cemetery that only allows flat markers when they want an upright one. So ... double-check when you begin to consider buying property.
Some cemeteries offer "one-stop shopping". You can arrange your funeral, your burial, floral tributes, and monuments/markers all at the cemetery. Other cemeteries only offer burial, so you will need to shop around for a monument/marker on your own. Before purchasing anything, make sure you understand if your chosen cemetery has monument/marker size restrictions, so that you/your family are not unpleasantly surprised if the cemetery rejects your chosen monument.
This sounds crass, but shop around, especially with privately-owned cemeteries. Each one will have price lists, regulations, and maintenance practices that will be slightly different. Prices, often, go up every year and/or without notice. Ask questions. Read their by-laws. Take notes. Ask more questions. Keep a file. -
I don't think paper mache would hold the weight of my body. I stick with renting the wood one. I might do my own picture thing though. I don't trust my family.
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I am thinking of ordering a kit and having one of my talented BIL's put it together. I just can't justify the cost they are charging at the funeral home. Although Costco has some nice ones which are reasonable.
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Selena, what experience do you have with atheist memorial services? I'm an athiest and obviously am not interested in having a religious figure speak at my memorial but I am wondering what other people do? Obviously, I wouldn't want to put that burden on my family.
Thanks!
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My dear sisters,
Your humor, pragmatism, practicality and maturity are inspiring. I have only been stage IV for a few months, only dx less than a year ago. Right now I am carrying on fairly normally, save for too many medical appts., but I know my run won't last forever. As I move through each phase of this weird journey (yes, it seems so weird!) I know that all who have experienced this will see mr through in many ways.
Caryn -
Hi there SelenaWolf
Trying to say this nice but .....Lay off the suck pills
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Hi there SelenaWolf
Trying to say this nice but .....Lay off the suck pillsSilentbell, what does this mean? I am confused. I thought Selena's post was very helpful? Maybe I don't know what suck pills are....?
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Cool breeze i do not know (because of my lack of experince) whom would speak at a non-religious funeral. I would assume that it would be someone that knows you because the person that speaks is usually a leader in the deceased's congergation. (and knows the person so they can speak about their life) Do you have a trusted co-worker or friend???
I also thought Selena's post was helpful- especially when thinking of the expense it would really suck if the family got stuck with unknown added expenses that they cant afford.
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I don't know what a suck pill is either. I thought the post was informative. Anyone?
Caryn -
i know i bumped this thread, so i wanted you to know who i am.. i am not stage iv with cancer, but am facing the same questions/preperations/ decisions you all are. i have been told just recently my ms has progressed thru to the brain stem.. not good news.. so, although (i don't think) the bc will "get" me before the ms. you never know..as many of my stage iv friends say, "we're all just one test away"
i'm asking if its okay with yuou for me to be here, if im not welcome, i'll understand.. the struglle isn't the same, cause the disease is different.. the decisions,questions are the same.. what ARE "suck" pills??? 3jaysmom
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3jaysmom,
you're totally welcome. Death isnt selective to whom it takes and by what means, but we still have to prepare for it much in the same way
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I also thought Selena's post was very appropriate and helpful.
CoolB, I am actually meeting with the funeral home this week to make sure MY final wishes are outlined, understood, and ready. I am opting out of the "traditional" funeral gathering. No friggin' speeches, no preaching, and no "she went peacefully" crap. And no gone to a better place. Those who know me, know I've fought tooth and nail, and would not believe it anyway. I told DH that a small gathering at the cemetery to place my ashes is as formal as it is going to get. A lone bagpipe will play one song. And then back to the house for drinks and eats and good music (if they want). I am just hoping the funeral home will accept the homemade "box" I've chosen. -
How can I sleep without knowing what a suck pil is and why selenawolf should lay off? Oh, wait , just concluded the last of 26 parent/ teacher conferences, so I will sleep but would like to know what that means.
Caryn -
suck pill??? I thought selena's post very helpful.
Judie -
One of the most fulfilling things I have done is to decide on my final resting place, which works for me and my family members. For a long time I was just stuck on that decision. Having recently updated my medical directives and completed the Five Wishes form as an addendum, I feel much more at peace with those issues having been addressed, too. And talking to my Dh and kids about my preferences has also helped me feel more prepared. Am I ready to check out? No way. But at least I have a plan.
And who knows what the morrow may bring? -
Sorry to hear about what you're dealing with. Of course you are welcome here - we don't have the monopoly on dying
Really useful information and not just for those in the USA - thanks.
Ann, I don't know if you have any experience of Humanist ceremonies. There is some info on celebrants here: http://humanist-society.org/celebrants/
I had a Humanist ceremony when I got married and also had a naming ceremony for one of my kids. The celebrant we chose spent a lot of time with us over a few days and we wrote the words for our vows with him. It wasn't very expensive - we just paid his travelling expenses and around £100 on top of that for his services; pretty good, given that he probably spent a good 6-8 hours with us.
I think where celebrants can be particularly good is where someone wants to talk but doesn't feel able to because they don't think they will be able to get through it without breaking down. They can talk to the celebrant and they can say the words instead. I know friends cn do this as well but sometimes I think it is such a huge responsibility and something that people worry about.
Laurie
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I know where I will be buried as I will be buried with my son. As for the funeral, I have told my children and my husband that I want people to be happy and celebrate my life and not to be all sad and morose.
3jays you are more than welcome here....this thread is not just for stage IV as we all, BC and non BC will eventually die the only difference may be the when.
I thought the post from Selenawolf was particularly pertinent and would like to thank her for taking the time to let others know of the potential pit falls and hidden costs that may be encountered if one is not super careful.
Love n hugs Chrissy
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Jaysmom, You are welcome to be here! Let's lay off the suck pill thing, it's old already.
I feel better that I have things planned out. I have also told 2 of my siblings what they are.
I didn't think of making my own box/urn. They do change the inards of the rental casket after each use.
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Thank you Selena... very helpful.
Mr. apple and I made arrangements just his last year.. and bought a shelf. I'd actually like to buy a piano shaped object to rest my ashes in.. that's probably not allowed. The shelf is actually kind of cool, accessible and sheltered... and after one day of rented viewing. (i hope to have something kind of jazzy or not so frilly.
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I deeply regret upsetting anyone. This was not my intention and I apologise for causing offense. Having worked in the death-care industry for years, I realize that I am sometimes too... blunt... where this issue is concerned and I forget that it can upset people.
I'm sorry.
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Hey Selena
Don't worry. The beginning of the topic spells it out pretty clearly I'd say! I think we can take it
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Few of us like upsetting people but you sure didn't upset me or most others. Your info was relevant and helpful, and thanks for posting it. My 12 yo foster child's grandma ( her primary parent before placement out of the home) died last year of lung cancer. She was in hospice the last few weeks and had known for over a year that it would be fatal. Still, she refused to talk about her wants and plans for her funeral/ burial with her husband other than buying the cemetery plot. They didnt even discuss things like who to notify when it was time for goodbyes or how often to let their granddaughter (my fo child) to visit in the final months.She believed and told me her husband would never restrict visits when in fact he did, even tho grandma and fo child were both desperate to see each other as much as possible and I was willing to bring her. After grandma died, her husband refused to hold a funeral or burial service even tho at least 2 of his 3 kids and other relatives wanted it, and stated they knew their mom had expected to have one. Without advance planning or having a clear discussion, it didn't occur. This was a huge loss for the family, especially my 12 yo, with no formal way to say goodbye. I got a great suggestion from a friend and, with grandpa's permission ( tho he refused to come) about 3 weeks after the death, held our own tiny graveside service. This was so meaningful for 12yo and her uncle who came and had also needed a way to say goodbye. All that said, talking with our relatives and planning ahead is so much better than ignoring reality and burying our heads in the sand.
So thanks again for the info and ideas, Selena and others! I hope to be years and years from my own end since I'm new to this party and bone only with mets. Even so, I want to take care of the end prep issues well in advance. -
Ma,
What does it mean? I truly don't know and don't understand why Selena was criticized.
Caryn -
To all,
I am sorry for my post. Selena Wolf 's post was on topic and had an abundent amount of information. I have no excuses that matter. I was out of line and I apologise
Silentbell
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Ty silent. Moving on.... Apple I'd live to see a pic of your shelf. I'm certain that a piano made of a durable substance would be "allowed". You bet Liberace or Elton would have it if desired.
Good discussion. We are Unitarian and many members ask the minister not to refer to god, which she only does in hypothetical ways anyway. I've asked her to avoid her usual "it was time for her to go, her world had gotten so small...." type of statement. I asked her to say I was.ready because I was fulfilled. That's what.I'm.doing with all this time, getting ready!
Anyway, I love this thread which is respectful to all our individual dreams and fears. -
Silentbell, thanks for the apology. That's mighty big of you.
Selenawolf, As stated before, you are welcome and it seems as most liked the detailed info. Reading what this thread is for, it is appropriate.
Exbrngrl, somebodies feelings were hurt and now things are fine.
Apple, It seems as if you can get a small plain urn and have a piano decorated around it.
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(((hugs))) to Silentbell. Is it possible that you are "afraid" to have this discussion with your wife? My DH is the "don't talk about that" kind of guy. But I have gently finally got him to agree to go to the funeral home this week and get it all outlined. I told him that once this is done, I can stop worrying and move on with living. I guess this is kind of a "lemon sour drop" for him, but I think it will give us both a little peace.
Apple, want to see a picture of the "shelf" also. Is it temporary? I am leaning to a urn nitch, will find out pricing this week. I do know that I absolutely do not want the thousands of dollars funeral thing. I would rather wipe out all our savings before then to keep my DH from doing that. -
Selena, you need not apologize. This post is for us to discuss death and dying and making plans in relation to that is something overwhelming at the best of times, so thank you for your advice. SilentBell, I understand that you may be upset and angry that your wife is ill but those of us that are stage IV and think about death often need a safe place to discuss this. I can't talk to my family as I'm 40 and they don't want to hear it. They suggest I've lost hope or given up my fight - I haven't! I just know that I have stage IV metastatic cancer and that unless I become a miracle, I won't be here for as long as we'd hoped and I'd like to talk about my fears, as well as try to plan in order to make things less horrid for my friends and family. SB, please respect those of us who need the information provided by Selena and who also need to discuss our fears, etc. about death. Unfortunately, it is reality. We DON'T WANT to die or have cancer, but that's not something we can control.
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Thanks to whoever bumped this. I was at a conference once and the workshop was called dealing with the dying process and preparations, or something like that. I thought it would be like this, instead it was a complete discussion on exactly what a caregiver should expect at each step as the person is actively dying. I did not want to listen to how my organs will shut down and what things to watch for, this is the info I was looking for!
I think this is a scary topic that no one wants to address even in the cancer industry. Maybe if it is brushed under the rug enough we won't die from our diseases???? I wish things like this would be discussed more, helps give others ideas on things to leave behind as well as burial planning.
I have not even done my advance directives yet. I'm just afraid it will jinx me. My husband passed in 1999 and it is just me and my 4 children for the most part. I am estranged from my family, they look at me as the black sheep (long story but they just don't live in a real world). Anyway, I try to bring up my burial to the kids and they hate discussing it but I was really considering cremation to make things cheaper but they did want me somewhere so they could go there for their own time. I didn't know you could just bury the ashes and put a marker on the grave. That is an awesome idea and I really am going to consider that. My oldest son said he refuses to carry me around with him all his life because he will constantly be looking over his shoulder wondering what I am thinking about what he is doing! LOL I got a kick out of that!
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LuAnn, my family doesn't want to discuss this either but I have made it clear since before I was ever sick that I must be cremated. I don't want to be buried. I mentioned it recently but, of course, was emotional at the time and crying, so it didn't help. I think I'll do a directives form. I also hope to return to the office at the beginning of May and once I have more money coming in, I will be looking into pre-planning and pre-paying in order to do what I can to save my parents the pain of dealing with this when the time comes. I like to hope I'll live for another 30 or 40 years, but we have to be realistic. I have stage IV metastatic cancer and I will be lucky to have any time I can. Unlike those who die suddenly in an accident, we have the benefit of being able to make decisions now and make a difficult time far easier for our families, or at least deal with details so that they can deal with their loss.
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I always wondered why funerals are never on Saturday or Sunday it makes it hard to go to a funeral during the week when I have to work, but it has to do with cost. Well now I know, and I wish I would've asked my sister how she would've wanted her ashes handled, but I never asked her. I might wait until I die and have them mixed and spread somewhere with her ashes. I kind of like the idea of a smaller grave for ashes. Thank you Selena for helpful common sense information.
Amy Lynn -
Jewish funerals are never on Saturday, but can be on Sunday if the person died before the begginging of the Sabbath (sunset Friday night). We don't embalm so funerals are held as soon as possible.
Caryn -
Both of my parents wanted their services on Saturday so they could have the choir (mostly made up of people who worked during the week) sing specific music they had chosen. We did have to pay extra for the cemetary workers, but it did not matter because this was what they both wanted. We had a private graveside service for them first (backwards, I know, but they were private people) and then a memorial at the church afterward, with a reception after the service. They lived in California and my Dad passed first from stage IV lung CA. He wanted to be buried. When we went to make the arrangements for him they asked my Mom what arrangements she wanted. She wanted cremation but wanted to be buried with my Dad. In California if you re-open a grave all arrangements must be made when the first person is buried. This was a blessing in disguise, as this forced my Mom to make her own arrangements right then. It was much easier when she passed 4 years later because everything was already done. She was cremated, we picked out a beautiful small box, and she was put in on top of my Dad. She thought this was funny because she got to be "on top" and in charge. It always makes me smile when I think about that. My Mom also picked out the readings and hymns for my Dad, so I used the same ones for her because I figured she liked them. The only difference was the organist and choir sang "Waltzing Matilda" for the recessional for my Dad because he was an Australian ex-pat, and we had bagpipers for my Mom because she was Scottish, born in England and raised in Canada. I also customized the flowers with eucalyptus for my Dad, and maple leaves for my Mom. My brother was diagnosed with stage IV bile duct CA two years later, passed 60 days after diagnosis, and was cremated. His service was non-denominational at the chapel at the cemetary, they had a slide-show and his surfboards and pictures of him with his family. He is in the same cemetary but is up high in a columbarium wall, in an urn. There is room there for my SIL later. She took a small amount of his ashes to Hawaii, asked some local surfers to take her out with them, and scattered the ashes out in the ocean.
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Selenawolf, Thank you for the info. It was very helpful. Dawn
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Since I retired in June I've done a lot of thinking on this topic. DH anad I did advanced directives several years ago. Watching how much $ is spent on funerals made me realize that I would rather our savings be spent in other ways. There is a company here in MD that will pick up your body, use it for medical purposes, cremate it when they are finished, and return the ashes to your family. That's my plan. I've already let my family know as I don't want anyone thinking ill of my DH when he follows through with my request. I already have the paperwork but haven't completed it yet. Whenever they get the ashes back I've asked that 1/2 be spread in our family cemetary in Kentucky and the other 1/2 in the Atlantic Ocean! There will be a memorial service at my church (and yes, I've chosen my favorite songs and scripture) but no body so no funeral home involved, so no cost other than a gift to our minister. Hopefully my family and friends will gather somewhere to party afterwards .... The tears have all been shed .... spend the money on food & drinks, not boxes and hearses!! That's just me .... always ready for a party.
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K-Lo... Thank you for bumping this! And thank you 3jays for re-bumping it!!
Ma,
This was and is such an important, liberating post... My plans were made in haste when I was terrified and thought it was curtains for me. Now that I'm doing well, my friends and family don't want to talk about these issues anymore. And even I have developed a detachment from the whole thing... sometimes it seems too surreal to contemplate. But the more I read and re-read these posts, the stronger and more comfortable I get. It gives us back some control, talking about our wishes and plans for this transition. Thank you again for starting the dialogue...
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Bon - I think Selena is Canadian - so the military piece may be different. On that note though, I just attended a funeral for a old friend who was a military spouse like myself, and veteran in her own right, a former USAF nurse, and fellow BC sister. I was surprised at the wait to be buried at Arlington National Cemetary. She passed the first week of March, but cannot be interred at Arlington until June 2nd. I doubt a wait this long is the case at all national cemetaries, but there are delays that are unlike commercial cemetaries, especially if one wants full military honors. They will not dig when the ground is frozen, WWII/Korea/Vietnam vets are aging and passing in larger numbers, and also the casualties from Iraq and Afganistan are causing a backlog. I feel badly for her family to have this long of a delay, it has to be hard on them.
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Steelrose, thank you for the compliment.
I feel strongly that getting these things done helps us feel better. I don't want what little money I have wasted. I chose one day of viewing, cremation and burial so my daughter has a place to visit. A place to visit is very important to my daughter.
As far as some of the forms, My palliative care doctor and I filled out the Pennsylvania Options for Advance Directives together. She said that is what is the legal form for Pennsylvania. It is hanging on my refrigerator. She also took a lot of notes that can be seen by anyone that can access the computer, even at a different location.
I guess what I am saying is to ask your doctor or nurse what kind of paper work they use in their area. Previously I had a typed paper that was witnessed and notarized and that was not good enough because a doctor was not involved.
I did change one thing while talking with my doctor in regards to antibiotics. She gave me the scenario of having a bladder infection and her not being allowed to give me antibiotics, yes I want that fixed.
When doing these forms, keep in mind that they only take effect if we cannot speak for our selves.
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perhaps we need to be just a little less sensitive.
I am somewhat jaded i guess. I play the organ at funerals for a living. It is unusual, sometimes very pathetic and mundane, sometimes awesome, sometimes glorious and sometimes horrificly sad. (i do not charge for military and our town comes out it full force);
just for a bit of levity i will share this very short funeral story i wrote after a particularly odd one.
A funeral in Kansas
Here in Kansas, a brother of a friend of mine, a fireman with a gambling and drinking problem, committed suicide in jail after being picked up for driving under the influence.
He lived in on the northwestern side of the metro where the houses are pink, grey and crumbled, surrounded by wild dogs, and sometimes have Chief's logos painted full size on the side of the house that has NO windows. Tattoo and dancing parlors abut homemade churches of questionable denomination and the roads have no curbs or drainage conduits.
William was a bagpiper. After the funeral, which was well attended by sturdy legged firemen whose pants were all too tight, who sported handlebar mustaches and shaved heads and probably had Harley-Davidson wannabees in their detached sheds,Twenty five firefighters gathered in the vestibule with 8 fully dressed bagpipers. A fireman said "We will sound the final alarm for our brother William" They had brought at least 8 big brass bells (the kind that used to ring in firehouses to call the firefighters and dangle above the front of the trucks). The 8 bells started clanging in the reverberating church of stucco and tile, the bagpipers started playing, and the huge old church bell started peeling. For at least 3 minutes this unbelievably loud cacophony sounded. The congregation was clusted at the back of the church by the firemen and bagpipers. After about a minute of this wonderful noise, everyone broke into the most unfettered sobbing I have ever witnessed. Not a person was spared from the sobs of utter sorrow.
When the clamor died, one of the firefighters, I guess to lighten the mood, said "Dang it - Bill owed me ten bucks". The very elderly mother of William opened her purse and gave the firefighter a ten dollar bill which he stuck in his pocket to the dismay of all the other firefighters.
Life is very short. -
Here in Canada, we do have a Department of Veterans', as well as "Last Post". If someone has served in the military and was discharged honourably, then - once the military papers are forwarded to Last Post - the agency arranges- and pays for everything concerning the funeral and burial in a veterans section of the cemetery. They will even pay for- and erect a Veteran's headstone. The only problem is... only veterans can access this service/cemetery section. If you are the wife/husband of a veteran and you did not serve in the military, then you cannot be buried with them if they chose to go this route. At least in our cemetery. Other's may have different rules...
Also, here, there are Social Services benefts that can be accessed for funeral services/burials if you qualify; the major qualification is income level. If you do qualify, then Social Services will pay for everything; funeral service, grave, burial, headstone/foot marker.
There's, also, a death benefit that comes from the government, but it's not nearly enough to even begin to cover funeral/burial costs and people are working to pass legislation to make it bigger. -
apple - wow! What a story, you are a talented writer!
selena - the Canadian government is more generous with the benefits. In the U.S. everyone who has paid into social security gets a death benefit but it is only a couple of hundred dollars. If an active duty military member dies the costs for preparation of the body and burial in a national cemetary are picked up, but if it is a veteran only the cemetary/military honors part is gratis. Use of chapel facilities on a military base are not charged. A spouse or family member can be buried in a national cemetary, in the same gravesite, even if they predecease the military member, but their information is noted on the back of the marker, and it will state "his/her spouse", or "his/her child".
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I've had some really unexpected thoughts today. First, while wondering about all the new physical symptoms I've been having lately (shortness of breath, night sweats, sleepiness, painful mets) it occurred to me that a part of me would rather just get this over with and die sooner rather than later since things will only get worse. I kind of surprised myself with this thought because my greatest wish is to be here to help my children grow up. So, I guess it's the "selfish" part of me just being honest. Then, later, my husband comes home and starts telling me about how much he hates his job (which he rarely voices to me). So, we talk about some different scenarios, but there's really nothing that can be done at this time. Then, I realize that if I were to die soon, my life insurance would allow him to leave his job and start over. It feels like a gift I can give my family. Is it bazaar to think that? Yes, I realize that my kids would rather have their mommy, but they're going to lose me anyway so why drag out the process? Especially, since the longer I live, the larger the debt I will leave them.
Please tell me I'm not the only person to have these thoughts. And, I'm not depressed, I just feel as if I'm coming to terms with the inevitable instead of living in denial.
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just wanted to thank everyone for making me welcome here.. i wanted to ask .. what are the five Questions?? i've missed t, i gues.. thought i had everything down...
no viewing for me, just a memorial service at a clubhouse my DH and i go to, like the vets club..
no expenses, either, that way.. out to the winds, for me.. or the ocean, where my dad went...
I too, have those bizarre thoughts , bc im the cost in our family.. have brought us to the brink of destruction, and it still continues.. over /above ins!!!
i have a few days of my family would be better off, and its not going to be easy the way im suppossed to go...
than, my GS meets me at the door to tell me how much he's missed me, or, my DH Mur, will sheild his eyes, when he knows I'm down, and i decide it can be better, at least for now..
so, i think we all have those days. i thnk (hope) my body will know when its time to think seriously about it...3jays
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Cynthia,
You are not the only one to have thoughts like that. My 18 year old daughter is putting her life on hold until I die. She told me yesterday that next semester she will only take 1 or 2 courses so that she can spend more time with me. If I die now, she would be full time next semester and the money would be there for her college and to pay off her car. It's hard on our familys, so why not go now? That's not being shelffish at all.
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skream i am glad to hear y'all did something so that little girl had some closure.
My dad just past last month and he was lucky enough to have been in the hospital for a few weeks so he pondered about his life and his final wishes. we stuck to them. Although at first they thought he had another six months, but it only turned into another 2 weeks.....
FOR THE SAKE OF OUR FAMILIES THIS STUFF NEEDS TO BE PLANNED WETHER WE ARE DYING TONIGHT OR DYING IN 10 YEARS. WE ALL DIE SO ITS SMART TO PLAN THIS OUT!!!!!!!
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Just came back from the pre-planning appointment. The total cost for everything is less than $2500! Well, sort of. The funeral home and the cemetery does allow a "home made" coffin which is going to save a ton of money! We went through everything including cost of certified death certificates to help DH get all the legalities taken care of. I want to use the local city cemetery, which surprisingly is only $500 for the gravesite, $100 for opening and closing of it, and $200 to place the marker. And the cost includes picking me up, and then putting me away. Awesome, lot less than I thought it was going to be.
Would highly advise doing this. It has definitely put both my mind and my DH's feelings at ease. -
To lighten the mood when talking with my sister and cousins, I threatened them with hauntings if they didn't do what I told them. The hardest thing for them is I am one of the babies of the 1st cousins, and at the same time I am planning mine so was my 15 year old 2nd Cousin who had ALS. She wrote some parting words, picked the music when she wanted it played and what she wanted to wear the Twillight Dress her grandma got for what she didn't know at the time she would wear to her Suprise Sweet 16 Twillight Party, that myself and her Aunt had been deviously planning for months. Best $1500 I ever spent, she made it to her goal her 16th and going to high school even though it was only for 2 weeks before having to leave.
Me on the other hand no funeral and no funeral home, cremation, and a big Keg party in the field that we had many adventures in as children. I plan on having a funny review commentary of our childhood with pics and music. I told them they then had to go on vacation to Hawaii and spread my ashes in the Pacific Ocean. I am still working on the details but me sister has the jest, and actually come up with one thing I didn't think of she is going to get a four foot statue of my college mascot which also happens to where I work and place it in front of my mom's grave in our yard which happens to be in front of the family cementary which is on the land we own.
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On the subject of planning ahead for our funerals, has anyone heard of Memorial Societies? There is one near me and it's only $25 to join. They contract with a local funeral home so you save a lot of money and you plan your service in advance. Here is a link to info about the Funeral Consumers Alliance and their affiliates. It sounds like a good idea to me so I'm going to check it out.
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There is a great pamphlet (FIVE WISHES) dealing with medical directives and what your wishes are with respect to end of life isues. It's very specific and just filling it out helps give some clarity. (To order you can call 1-888-594-7437). I got mine for free from a friend, but there may be a small charge. Five Wishes is a trademark of Aging with Dignity (www.agingwithdignity.org)
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thanks, Jeanne. gonna go there after here, tonight. i thought i had it all, but want to make it as clear as i can...
thank goodness, my DH Mur, was a funeral Director, for many years, so he's open (enough) to my talking about it, doesn't think its morbid, etc..
the MOST imp thing i did, was make my friends promise to not let him feel he has to do it himself.. we/ve done so many funerals, for our friends, and one of them can help him out...its TOO much, to do your families services...
originally, i wanted an Irish wake.. but too many of our friends now no longer drink, either from AA: or their health.. so, a no drinking, no sobbing party would be my best wish!!!
i loved the song "prop me up in front of the jukebox" for years, but mur asked me PLEASE not do that...we'll see.. some of my close friends have a strange idea of humor, so who knows???
the funniest thing he encountered while doing funerals, and the hardest, permit wise... a woman asked to be buried in her pink mercedes when she died.. it took awhile to get the permits, etc for the cemetary; but they got it done.. he says you can do anything (as long as you feel strong enough to pay for it)
i have a doll collection, and will be on the memorial table, along with pictures when i was well, and long haired.. no looking at how i looked "on the day" i really want ple to remember my spirit, not how i look, after all this damage.. after all, its the spirit, the personality, that akes us who we are, right??
my best friend for years, (a man) had a killer bear collection.. and they were scattered all over the room, when we had the memorial.. everyone was so busy remembering.. oh, he got this one from so and so.. for this occasion..oh, i never saw this one...etc.. it really started everyone bonding between people...
another one, a close friend, loved gardens.. so, on every table, we made an arrangment with 4 live plants with candles.. everyone had a plant to plant in rememberance of that friend.. it was really a good thing.. i plant anew plant for everyone i lose.. it gives you motivation to water, and feed, believe me!!!!
and, it saves much money in funerals arrangements!!!
just some thoughts...3jays
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If I may add my .02. Im not dying and dont hope to die till Im in my 80's like my grandparents. But I did have someone very close to me pass and I saw the mess it left behind.
My SIL had sleep apnea and mental problems she took xanax clonazepam and some other anxiety medications. One day a few days after my sons 1st birthday we recieved a call that she had passed she was 27 and had 4 daugthers, her cause of death obstructed airway due to apnea and obesity and with the influence of the meds did not react when the apnea happened. Were we expecting it hell no. The mess left behind was a headache. 8k for funeral cost 2k for headstone etc etc. Money had to be loaned and dug out of nowhere
After that I realized that I had to get my life prioritized. I got a life insurance w/ accelerated benefits to make sure my family at least financially, will be set for a few yrs. My funeral request are in writing ( viewing & cremation). My accounts have a beneficiaries. The only thing pending is the removal of parental rights from from my first daugthers estranged father so that she may be adopted by either my family or my fiancee.
Unfortunately death is something hard to talk about but it needs to be done. In my case it took someone that was like a sister to me.
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I'm not Stage IV, so please forgive me if I'm butting in here....it's just that I've had lots of experience in this area, with family members.
My mom, the sweetest person who ever walked the earth, was a BC survivor for 20 years before she passed from end-stage Parkinson's. I knew the end for her would not be easy, and started planning early.
Three years before she passed, I arranged her funeral. I went to the funeral home with my DH and my sister and BIL, armed with instructions from Mom. We spent the afternoon, picking out things that we knew Mom would love, and because she was still with us at that point (although in a nursing home) there was not the aura of grief affecting our every decision. We had a lot of opportunities to laugh.
The "Pre-Need" counselor at the funeral home was wonderful, and in no way tried to coerce us to spend any more money than we wanted to. We planned out every detail, picked out her casket, and even the clothing for her to wear. The contract I signed allowed me to pay a small amount every month, and locked in the prices. I was shocked to find that a tiny death notice in the newspaper was free, but a "tribute" (obituary, story of the person's life) could run between $500 - $1,000, especially if you use a picture. When she passed, I only needed to make one phone call to set everything in motion.
(DH and I decided that we both want to be cremated, and have already started our own planning process. WAY cheaper than traditional burial!)
I started writing her obituary that day...I asked Mom, her friends and our family what should be included. I added to it over the years.
I knew early on that her condition was not going to get better, so I got her qualified for MediCal (which is our state MedicAid program)....meaning there were no nursing home, hospital, or doctor bills for me to pay. NONE.) We put everything in my name, including her home.
I did see an attorney for this, and found that most will offer free consultations. If this is true in your area, I strongly urge you to take advantage of this.
Many of you have mentioned "Living Wills" and "Advanced Directives". What I have found is, the more detailed, the better.
For example, a patient who is near death may be uncomfortable because of fluid buildup in the lungs, bronchial tubes, and throat. The nursing home wanted to send Mom out to the hospital for "deep suctioning"...fortunately, I'd already spoken to my friend, a hospice nurse in another state, who told me that this procedure was painful, invasive, and would not change the outcome. I refused.
Then I found out that a combination of morphine and atropine made a world of difference, and allowed Mom to stop struggling with her breathing, and relax into a peaceful, easy sleep. Her last words were "the angels....." and she passed with a smile on her face.
When she did pass, and we had her service, I felt pain at her loss, but peace in my heart knowing I had followed her wishes to the letter.
Also - I have heard "DNR" mentioned many times, but this phrase has become somewhat unclear and outmoded. There is a new form, called the "Allow Natural Death" order, that is signed by the physician, which overrides any other forms of DNR (at least here in California.) Different states have different names and forms for this order, which are usually printed on neon-colored papers.
If someone is at home and begins to suffer heart failure, family members might call 911 to provide comfort measures such as pain control, even if the patient is considered to be DNR. However, there have been cases where the patient's heart did stop, and even though family members notified emergency personnel of the DNR order, all it took was one family member present to insist that they "SAVE HER!" and start CPR. With no documentation immediately present, emergency personnel must start and continue CPR and other life-saving interventions.
Two years ago, my brother's partner went to the ER with a cold, and was admitted with pneumonia. The next day he was put on a ventilator, the following day his kidneys failed and he went on dialysis, and within the week he had both MRSA and C-diff. One day when I walked into the room, his blood pressure dropped so rapidly that the nurse asked my brother if she should do CPR. His answer? "I don't know....."
Because they had never, EVER, discussed death and dying, neither one had any clue how the other wanted their end-of-life situation to be. They were just too afraid to talk about it.
I am a retired counselor, and it was VERY difficult to sit with my brother for three weeks as he had to watch his soulmate pass, enduring endless, expensive procedures. What made it even harder was not knowing what his partner would have wanted. The pressure was unbearable, and the decision to disconnect the ventilator was horrific. It was only the assurance from the physician that there was no brain activity that made it even possible.
My brother and I left the hospital that day and went directly to the funeral home where I planned the service. He kept saying "We should have talked about this....if only we had faced this....why didn't we plan for this......"
Personally, I think it is an honor and a privilege to escort someone out of this life. Leaving too soon is tragic, especially when people are young or there are young children involved, but I still think it is our basic human right to have it happen the way we desire it to be.
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hey gals, i found the funniest today...very timely as im TRYING to talk to the 3jays about whats' going onwith me.. i hope you like it next box///3jays
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hope you liked it as much as I DID!!!3jays
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LOL!!! That's great!!!
Peggy
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love it!!!
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So, I asked my DH to help me plan this stuff. He looked at me like I was insane. Then went into his normal state of denial and said you will be fine, stop talking like that. He pretty much refuses to talk about the reality of how this is going to turn out, even after I pointed out the fact that we are all going to die, just some of us happen to know its going to be sooner rather than later, he wouldn't budge.
I got basically the same reaction from my sister, except she cried. Can't talk to my sister because she crys and I end up comforting her. I think it would be to much for my dad to handle, so I'm not even going to ask him,
I'm ok doing this myself, I was just wondering how everyone else brought up the topic with family members? Maybe I'm doing it wrong.
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Stormynyte - I'm sorry you don't have anyone who will help you plan this stuff. I'm sure you're not doing it "wrong". Some family members just seem unable to even think about it. I learned this recently when my dad mentioned how my future grandkids will think I'm old. I looked at him like he was crazy and said that I won't know my grandkids. And, he argued with me. wth? He was in total denial and refused to consider any other outcome. I had no idea this was how he was dealing with this. Sigh! While I understand where this is coming from, it sure makes it difficult on us. Although, come to think it, he and my mom haven't planned for their deaths either. I know that one's 70's are still relatively "young" these days, but as you say, we all die so we should plan ahead.
I hope over time you are able to gradually pull your family out of the land of denial so they can help you. Does your husband go to your onc appointments with you? Perhaps, your onc could gently push him in the right direction. Good luck!
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Selena u'r post was so informative and right to the point--I don't think anyone was insulted for felt bad. U know what u'r talking about and an intelligent woman. So Thank u.
I missed something tho---What's a suck pill????
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Camille,
Good question that was asked by a few and never answered. I, jokingly, posted that wondering about it would keep me up all night and was mildly chided for that. Oh, well...but if anyone wants to supply a definition I'd love to hear it. This is a very good thread, by the way.
Caryn -
According to the Urban Dictionary (which I use way too often because I am so not cool), a "suck pill" is a stronger version of a "chill pill".
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Thank you, Cynthia. That's all I was asking. Finally, will get some sleep! ( not seroious, I sleep quite well).
Caryn -
I have told my DD1 what music I would like played at my funeral and also told her that I want a celebration not mourning. I have often tried to bring up the subject with my DH but I just get the comment 'you will outlive me'. I know that's what he's hoping for as quite frankly I don't know how he will cope when I'm not here as I have always been the one to literally run things. He lives in the world of denial with one foot on realities neck!
I will persevere and perhaps a bit later when things really stat going pear shaped I will finally get through to him that I will not in all likely hood outlive him.
Chrissy
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I'm glad we've taken care of this stuff.
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Storm, I did mine by myself, you can also. I actually think it would be harder to have a sister there. Then let them know you completed it. You can always make changed to it. Another way to get him going on it is to tell him you have an appointment with the funeral director and he is welcome to come. This is one of the hardest thing to do, but much appreciated when the services are needed. I also strongly recommend a living will. First ask your doctor the best way of going about it. Pennsylvania has a legal document they want used and is considered law. My palliative care doctor and I did it. and she took notes. It was nice doing it with her as she brought up things I would have never thought of. But she is the expert in this situation.
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Thanks for this much needed topic Ma. My paperwork isn't in order yet & it's a worry. I'm in the middle of selling a property & am waiting for completion.
My dear friend died within 3 days of becoming unwell in Stage VI & I think of this constantly. I see a specialist psychologist and keep my belongings to a minimum so my children won't have much to do when I die. Saying that, I enjoy every day having different activities & meeting people, I also suffer very little from pain at the moment.
Big warm hugs to all of us facing this experience.
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Jac, Glad to hear you are not suffering very much. As you can see I am a believer in doing our final paper work. I didn't want my 18 daughter to have to deal with it and all my siblikngs pulling her every different which way.
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Just finished reading this whole thread and laughed and cried.
Selena: thank you for your posts. Most informative.
3Jays: love your "living will" made me LOL!
Apple: loved your story. You're a good writer.
As for my funeral, Ido have a living trust which includes an end of life directive. I want to donate my body to science and have them cremate me and send my ashes to my husband. I haven't contacted an organization to do that yet. I don't even know how to go about it. I guess my husband will have to deal with it.
There's a book I love called "On Life After Death." by Elizabeth Kubler Ross It takes away all the fear of dying.
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loligag - while researching the local funeral home I plan to use, I saw on their price list a package for someone who plans to donate their body to science. They pickup the body then deliver it to where it needs to go. I'm not sure what happens after that, though. I need to look into it more.
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I want to recommend one of my all time favorite books "The Wheel of Life" by Elizabeth Kubler Ross. It's her autobiography and it's not at all dry like her other books.
Sending everyone Love, Light,
and [[[[[[hugs]]]]]]
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so, sat night, my jay @2 got a start out of the river of "denial" i had another choking inceident, not as bad as the last one: i passed him my DNR that i keep in my wallet.. when we got me breathing again, we had to explain it to him.. but, if the paramedics don't "tube" you, mom, you'll die.. welcome to the REAL world!!!it shook him up, to see it happen, he knew i had the dnr, but didn't think it would be so "immediate" .. well, one i won't have to worry if he "gets" it anymore..
he wanted to know HOW my DH Mur, can know everytime the risk.. he told my son. "thats' what you do, when you love someone.. you do what they've asked.. thats what our reality is, and the love we have..
it was truly a "kodak" moment.. since it was my birthday, i especially am glad i "dodged" that bullet.. id hate my birthday to be a day that eveyone reembered i also died... yuck!!!!3jays
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he insisted we take this picture afterward... it was a good night... -
Blessings2011- thanks for sharing, what your brother went through is def our worse nightmares. My dad and a DNR and i had never heard of the allow natural death. that is more to what he wanted.
3jays too funny!!!! Glad he gets it now, it was very hard for my younger sister to understand that at first with my dad. she's 23. Good pic
Glad you didnt go out on the same day you came in stormynyte- its is hard. i have tried as well and get similar reactions- i am writing down my wishes now while i am in a good way and when it gets bad i will share again.
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When we had hospice for my mom she ended up passing on her birthday - you are right, not a good thing. It also happened to be Cinco de Mayo (she always loved that everyone was partying and having margaritas on her birthday!) and I find it oddly disconcerting to reconcile my feelings of loss with everyone's revelry!
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I have just been dx with Stage 4. A bit of a shock as I am almost 43, and just had almost 3 years of NED. I know my husband, of almost 23 years, and he will be a mess. I am going to just be proactive, set up my stuff and and what I want, and don't want (A funeral) and give it to a friend who can step in and say, She's got you covered. We have 5 kids between 8-17, so he is going to have his hands full anyway. I want to give my body to science, if they will have my fat behind, so I need to get researching that. Life is so short, you just never know.
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I am in the process of signing up for hospice. My condition is not yet critical, but there are no chemos left for which I qualify. I think it will be good to know I am in kind hands and being looked after by caring
professionals as well as my family. It all just seems so surreal. Have been on this journey for over six years (as a Stage IV), I am indeed grateful for that amount of time - and most of it with a fairly good quality of life, but facing the end is just so damn scary. I'm glad all my paperwork is in place and my DH and kids know what I want. But it tears me up to see them so sad.
I interviewed a few hospice facilities some months ago (got a great list of questions from the Internet) so I know which one I will choose. It's dealing with reality that is the hard part now. -
(((((Jeanne)))))
I know this whole thing is so scary but I have been reassured by reading many posts from those who expressed a lot of fear but when the time came, were overcome by a peacefulness. I wish that for us all.
Laurie x
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Ths really helped me. I hope it helps someone. XO
Hopelessness and Death
By Pema Chodron
If we're willing to give up hope that insecurity and pain can be
exterminated, then we can have the courage to relax with the
groundlessness of our situation. This is the first step on the path.
Turning your mind toward the dharma does not bring security or confirmation. Turning your mind toward the dharma does not bring any ground to stand on. In fact, when your mind turns toward the dharma, you fearlessly acknowledge impermanence and change and begin to get the knack of hopelessness.
In Tibetan there ís an interesting word: ye tang che. The ye part means "totally, completely," and the rest of it means "exhausted." Altogether, ye tang che means totally tired out. We might say "totally fed up." It describes an experience of complete hopelessness, of completely giving up hope. This is an important point. This is the beginning of the beginning. Without giving up hope that there ís somewhere better to be, that there ís someone better to be we will never relax with where are or who we are.
We could say that the word mindfulness is pointing to being one with our experience, not dissociating, being right there when our hand touches the doorknob or the telephone rings or feelings of all kinds arise. The word mindfulness describes being right where you are. Ye tang che, however, is not so easily digested. It expresses the renunciation that ís essential for the spiritual path.
To think that we can finally get it all together is unrealistic. To seek for some lasting security is futile. To undo our very ancient and very stuck habitual patterns of mind requires that we begin to turn around some of our most basic assumptions. Believing in a solid, separate self, continuing to seek pleasure and avoid pain, thinking that someone "out there" is to blame for our pain one has to get totally fed up with these ways of thinking. One has to give up hope that this way of thinking will bring us satisfaction. Suffering begins to dissolve when we can question the belief or the hope that there ís anywhere to hide.
Hopelessness means that we no longer have the spirit for holding our trip together. We may still want to hold our trip together. We long to have some reliable, comfortable ground under our feet, but we've tried a thousand ways to hide and a thousand ways to tie up all the loose ends, and ground just keeps moving under us. Trying to get lasting security teaches us a lot, because if we never try to do it, we never notice that it can't be done. Turning our minds toward the dharma speeds up the process of discovery. At every turn we realize once again that it's completely hopeless we can't get any ground under our feet.
The difference between theism and nontheism is not whether one does or does not believe in God. It is an issue that applies to everyone, including both Buddhists and nonBuddhists. Theism is a deep-seated conviction that there ís some hand to hold: if we just do the right things, someone will appreciate us and take care of us. It means thinking there ís always going to be a babysitter available when we need one. We all are inclined to abdicate our responsibilities and delegate our authority to something outside ourselves. Nontheism is relaxing with the ambiguity and uncertainty of the present moment without reaching for anything to protect ourselves. We sometimes think that dharma is something outside of ourselves, something to believe in, something to measure up to. However, dharma isn't a belief; it isn't a dogma. It is total appreciation of impermanence and change. The teachings disintegrate when we try to grasp them. We have to experience them without hope. Many brave and compassionate people have experience them and taught them. The message is fearless; dharma was never meant to be a belief that we blindly follow. Dharma gives us nothing to hold on to at all.
Nontheism is finally realizing that there ís no baby sitter that you can count on. You just get a good one and then he or she is gone. Nontheism is realizing that it's not just babysitters that come and go. The whole of life is like that. This is the truth, and the truth is inconvenient.
For those who want something to hold on to, life is even more inconvenient. From this point of view, theism is an addiction. We're all addicted to hope, hope that the doubt and mystery will go away. This addiction has a painful effect on society: a society based on lots of people addicted to getting ground under their feet is not a very compassionate place.
The first noble truth of the Buddha is that when we feel suffering, it doesn't mean that something is wrong. What a relief. Finally somebody told the truth. Suffering is part of life, and we don't have to feel it's happening because we personally made the wrong move. In reality, however, when we feel suffering, we think that something is wrong. As long as we're addicted to hope, we feel that we can tone our experience down or liven it up or change it somehow, and we continue to suffer a lot.
The word in Tibetan for hope is rewa; the word for fear is dokpa. More commonly, the word re-dok is used, which combines the two. Hope and fear is a feeling with two sides. As long as there ís one, there ís always the other. This re-dok is the root of our pain. In the world of hope and fear, we always have to change he channel, change the temperature, change the music, because something is getting uneasy, something is getting restless, something is beginning to hurt, and we keep looking for alternatives.
In a nontheistic state of mind, abandoning hope is an affirmation, the beginning of the beginning. You could even put "Abandon hope" on your refrigerator door instead of more conventional aspirations like "Every day is every way Iím getting better and better."
Hope and fear come from feeling that we lack something; they come from a sense of poverty. We can't simply relax with ourselves. We hold on to hope, and hope robs us of the present moment. We feel that someone else knows what ís going on, but that there ís something missing in us, and therefore something is lacking in our world.
Rather than letting our negativity get the better of us, we could acknowledge that right now we feel like a piece of shit and not be squeamish about taking a good look. That ís the compassionate thing to do. That ís the brave thing to do. We could smell that piece of shit. We could feel it; what is its texture, color, and shape?
We can explore the nature of that piece of shit. We can know the nature of dislike, shame, and embarrassment and not believe there ís something wrong with that. We can drop the fundamental hope that there is a better "me" who one day will emerge. We can't just jump over ourselves as if we were not there. It's better to take a straight look at all our hopes and fears. Then some kind of confidence in our basic sanity arises.
This is where renunciation enters the picture, renunciation of the hope that we could be better. The Buddhist monastic rules that advise renouncing liquor, renouncing sex, and so on are not pointing out that those things are inherently bad or immoral, but that we use them as babysitters. We use them as a way to escape; we use them to try to get comfort and to distract ourselves. The real thing that we renounce is the tenacious hope that we could be saved from being who we are. Renunciation is teaching to inspire us to investigate what's happening every time we grab something because we can't stand to face what's coming.
Once I was sitting next to a man on an airplane who kept interrupting our conversation to take various pills. I asked him, "What is that you're taking?" He answered that they were tranquilizers. I said, "Oh, are you nervous?" and he said, "No, not now, but I think when I get home Iím going to be."
You can laugh at this story, but what happens with you when you begin to feel uneasy, unsettled, queasy: Notice the panic, notice when you instantly grab for something. That grabbing is based on hope. Not grabbing is called hopelessness.
If hope and fear are two sides on one coin, so are hopelessness and confidence. If we're willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation. This is the first step on the path. If there is no interest in stepping beyond hope and fear, then there's no meaning in taking refuge in the Buddha, the dharma, and the sangha. Taking refuge in Buddha, dharma, and sangha is about giving up hope of getting ground under our feet. We are ready to take refuge when this style of teaching, whether we feel completely up to it or not, is like hearing something hauntingly familiar, like the experience of a child meeting its mother after a long separation.
Hopelessness is the basic ground. Otherwise, we're going to make the journey with the hope of getting security. If we make the journey to get security, we're completely missing the point. We can do our meditation practice with the hope of getting security; we can study the teachings with the hope of getting security; we can follow all the guidelines and instructions with the hope of getting security; but it will only lead to disappointment and pain. We could save ourselves a lot of time by taking this message very seriously right now. Begin the journey without hope of getting ground under your feet. Begin with hopelessness.
All anxiety, all dissatisfaction, all the reasons for hoping that our experience could be different are rooted in our fear of death. Fear of death is always in the background. As the Zen master Shunryu Suzuki Roshi said, life is like getting into a boat that's just about to sail out to sea and sink. But it's very hard, no matter how much we hear about it, to believe in our own death. Many spiritual practices try to encourage us to take our own death seriously, but it's amazing how difficult it is to allow it to hit home. That one thing in life that we can really count on is incredibly remote for all of us. We don't go so far as to say, "No way, I'm not going to die," because of course we know that we are. But it definitely will be later. That's the biggest hope.
Trungpa Rinpoche once gave a public lecture titled "Death in Everyday Life." We are raised in a culture that fears death and hides it from us. Nevertheless, we experience it all the time. We experience it in the form of disappointment, in the form of things not working out. We experience it in the form of things always being n a process of change. When the day ends, when the second ends, when we breathe out, that's death in everyday life.
Death in everyday life could also be defined as experiencing all the things that we don't want. Our marriage isn't working; our job isn't coming together. Having a relationship with death in everyday life means that we begin to be able to wait, to relax with insecurity, with panic, with embarrassment, with things not working out. As the years go on, we don't call the babysitter quite so fast.
Death and hopelessness provide proper motivation, proper motivation for living an insightful, compassionate life. But most of the time, warding off death is our biggest motivation. We habitually ward off any sense of problem. We're always trying to deny that it's a natural occurrence that things change, that the sand is slipping through our fingers. Time is passing. It's as natural as the seasons changing and day turning into night. But getting old, getting sick, losing what we love, we don't see those events as natural occurrences. We want to ward off that sense of death, no matter what.
When we have reminders of death, we panic. It isn't just that we cut our finger, blood begins to flow, and we put on a Band-Aid. We add something extra, our style. Some of us just sit there stoically and bleed all over our clothes. Some of us get hysterical; we don't just get a Band-Aid, we call the ambulance and go to the hospital. Some of us put on designer Band-Aids. But whatever our style is, it's not simple. It's not bare bones.
Can't we just return to the bare bones? Can't we just come back? That's the beginning of the beginning. Bare bones, good old self. Bare bones, good old bloody finger. Come back to square one, just the minimum bare bones. Relaxing with the present moment, relaxing with hopelessness, relaxing with death, not resisting the fact that things end, that things pass, that things have no lasting substance, that everything is changing all the time, that is the basic message.
When we talk about hopelessness and death, weíre talking about facing the facts. No escapism. We may still have addictions of all kinds, but we cease to believe in them as a gateway to happiness. So many times we've indulged the short-term pleasure of addiction. We've done it so many times that know that grasping at this hope is a source of misery that makes a short-term pleasure a long-term hell.
Giving up hope is encouragement to stick with yourself, to make friends with yourself, to not run away from yourself, to return to the bare bones, no matter what ís going on. Fear of death is the background of the whole thing. It's why we feel restless, why we panic, why there ís anxiety. But if we totally experience hopelessness, giving up all hope of alternatives to the present moment, we can have a joyful relationship with our lives, an honest, direct relationship, one that no longer ignores the reality of impermanence and death.
____________________________Excerpted from When Things Fall Apart: Heartfelt Advice for Difficult Times, by Pema Chodron, Shambhala Publications, 1997, pp. 38-45.
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3jaymom, I am so glad that he now knows you final wishes and won't change them come time too. Family can do that if we are not properly prepared. Nice picture and I hope you had a lot of bonding time last night.
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Bon, that is SUCH a good way to do it.. papers and all.... thanks, not.. wonderful insight as usual... (((((jeanne))))))))))))))
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Thinking of you, Jeanne.
Lane
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Since I'm on SSDI and considered low-income, went to Legal Aid of AZ and was assigned a po-bono lawyer who drew up all my documents - will, medical and financial power of attorney, etc. all at no cost. My case is fairly easy as I only have one daughter, own my home and have no other assets. Although I'm doing well today, it sure is a comfort to know everything is legally taken care of should my health take a major dump.
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I just read nots post and I wanted to say that even though it sounds 'out there' my sister really did get to a place where she was peaceful. She'd been so worried about her husband and son but then some how relaxed and said they will be ok there is nothing more i can do. I thought this would be the worst part but she smiled as she said it like a weight had been lifted from her. It was one of the most astonishing things I've ever seen. No big drama, just peaceful acceptance. Much love xx
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what a wonderful post, cynsister.. i hope we all find that place, as we need to...
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Jeanne I am so sorry that you and your family are needing to take these final steps in your journey. I'm glad that hospice will be there to support all of you, though, and that all of your arrangements are in place. My thoughts and prayers are with you. Hugs!
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Another thought, I bought a water proof, fire proof safe to keep all the paper work in. After some of my siblings were able to handle things I scanned it and e-mailed it to them.
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Thanks for the text Gina.
Bon: I'd never thought of a 'when I die' bag. Great idea & I'm going to make one up.
After a recent long & emotional discussion with my daughter, she told me that when the onc had told her I would probably die in the next few days. This was about a year ago. My daughter went to the funeral director.
DD asked for a pink coffin and was told there were none. DD ordered a standard coffin and painted it pink so it would be ready for me when I died & if she was too upset to paint it after my death.
She also painted the standard grey metal urn for my ashes - pink too. These are being held by the funeral director until the time comes to put them to use.
I love my daughter and her view of me being a bright, colourful person (nothing to do with fluffiness or pink ribbons).
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((((Jeanne))))
Your quote says it all... "YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY OPTION YOU HAVE." I've been comforted by your posts since I joined here... I always recognize the photo of the grey poodle! I'm sorry that you're facing this, sad for your family as I know you must be loved very much. But I hope you are comforted by a wonderful hospice team when that time comes and the peacefulness of knowing that you've done everything you possibly could have done. You are certainly loved here!
Mzmerz...
I know the shock of being diagnosed in our 40's (45 for me). I always think that we're at that point in our lives when we should be really enjoying those Margarita pool parties that Special K mentioned (okay I added the pool!), not talking about death and dying... but for whatever crazy reason, this is our reality. I wish you great luck in your treatment!
I continue to read all of your posts, and I hope to reach that "peacefulness" that is discussed here.
Love to all...
Rose.
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When I was first diagnosed I was in a hurry to prepare an advance directive. It seemed important, I never thought of a when I die bag but I did get a book: Fraser, Kathleen, When I'm Gone, practical notes for those you leave behind, The Boston Mills Press, 2009.
It is rather detailed and I admit I have not filled it in, nor gathered the documents I need. As I became NED it seemed less pressing. After reading all that you have had to say I realize that that is somewhat head in th sand. -
Jac53 -
Pink was my mom's favorite color. (Like you, it had nothing to do with pink ribbons, etc.)
When we went to the funeral home, we DID find a pink casket, and ordered it immediately.
That made me almost as happy as the pretty pink dress and white sweater (typical Mom attire) I picked out for her.
Your DD sounds like a Godsend!!!
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I agree with Rose, we should be enjoying the margarita pool.
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Bon, you are fabulous - where did you get that stuff and why?
I love your idea, but why would my husband need a copy of my social security card? He has the number. Also, the same as the driver's license - it's in my wallet, why would he need a copy?
I love your idea and am going to do something like that. I'm also going to put all the passwords for my banking/paypal accounts, etc. But, I want to understand why you think each individual thing is necessary. I am terrible at understanding this sort of thing.
Also, I am an athiest and just want to be cremated cheaply and maybe have a memorial service .... somewhere? Maybe at the school where I work? How much planning do you all do regarding that? I don't have a religious pastor to guide my family, like some might. If I go to a funeral home, can they help with pre-planning without my giving them any money? It'll have to wait until my insurance is paid out so how much is a funeral home willing to do?
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Coolbreeze, the funeral home should walk you through all your questions, including the cost breakdown. They told me exactly how many certified copies of the death certificate, cost for each, and who needs them. They also told me the homemade coffin was acceptable ($29 for plans) and about $65 for materials. (cheaper than their cremation box). They also told me a homemade ash container was acceptable. No "religious" ceremony, only a private internment at the cemetery. If my DH picks up the ash box and transports it, there is no charge. They were very helpful, step by step, all outlined and signed (so no arguments from family). No money required up front. Total cost for everything including either burial plot or niche (both were the same price) was around $2400. The family (which is large, 100+, will do their own dinner at a brothers home). Simple graveside internment with a single bagpipe solo. I was pleasantly happy with the funeral homes agreement with my simplistic arrangements.
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Bump----read thread from beginning, has much info from many giving people sheila
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fyi my reiki practioner let me know about artfromashes.com, i also lost a bc sister whose husband very eloquently and lovingly wrote of her final days,hours, death and green burial. he lifted back the veil and my tears of intial sadness became ones of profound peace. she was alot like our zoh. if anyone is intersted i can censor the personal details and post.
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Just discovering that thinking about preparing for the end and actually doing it are two different things (like Doh!)
While I'm hoping its a way off, after fiddling around with a few blog posts for my kids, this morning I actually sat down and started for real. The first page was a bit of a killer - instructions for my husband about what to do and where to find stuff and what to cancel. And then a few things about my funeral and started to upload some photos of the kids and me.
Man, this is hard, but I guess I'll feel better when I've done it. Guess I better go buy some more Kleenex...
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alesta yeah it can be hrd (((hugs))) i actually hadnt wrote in my journal for either my husband or kids in MONTHS and i finally got around to it a few days ago- that was a tear jerker!
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Alesta29,
This is one of the hardest things to do, however, it does take stress off of you. I can send you a box of Kleenex. This is the best thing you can do for your family.
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My mother was a head cook at Smith College. After she was cremated,her ashes were placed in a large recipe file.
Since I love reading ,I would like my ashes placed in a large book-like receptacle.
I recently came across an article about the burial laws in Massachusetts and printed it out. It is an interesting read.
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Bon you are incredible.
I don't know if I have the mental energy to do this kind of stuff. Maybe I'm just in denial
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I am glad I was directed to this sight and found you ladies. Second round of bc and found it to be mets in bladder/ovary area w/acities in abdomen/lungs. I have been thinking about the thought of leaving this world and I am not ready! My goal was to be a centinarian, I may not get there but, i'll get a few years closer I hope. My question is this............how do we get past the fear of leaving your children? I am not finished with my job! My kids are over 18 but no grandbabies yet, How do I accept this
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Hi Lori
As to your question about leaving the kids - I wish I knew! I have a 14 year old son and 12 year old daughter who both know I can't be cured. We don't really talk about it much which I think is good. They know they can ask me anything they want to at anytime but hey, what kid wants to talk to their mum about her dying?
We all take it a day at a time. I try to encourage them to do stuff for themselves (learning to cook, ironing, handling money etc). I have a great husband and lots of close friends and family and I know that they will be well looked after and supported when I am gone.
A friend of mine died with a rare liver cancer a couple of years ago leaving 4 kids aged between 11-21. I see her youngest around sometimes and she is laughing and hanging out with friends and doing well at school. I console myself with the fact that she seems to be doing so well and hope my kids will be like that too.
I don't think I will get past the fear and mostly I make like it's not happening, otherwise I'd go mad and spend my time thinking about dying, rather than living.
Hope you're doing OK otherwise.
Hugs
Laurie x
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In regards to leaving our children is what encouraged me to get my final papers in order. It really seemed to take stress off of me when I was done with them. I am a single mom and my daughter never knew her father as he chose not to be one. She was 16 when I was first diagnosed and I didn't want her to half to make any decisions for me. She is 18 now. My sister is in charge of everything, even the house and life insurance. In January after I was admitted for cellulitis 2 of my siblings came in town. We reviewed everything and my daughter wanted to take part in it. She was very relieved that her aunt was to take care of things and not her. She is 18 now and I think that is just too young to plan my funeral, living will issues, etc.
It also took stress off me because now people know what I want and do not want. It makes it easier to live life now. My Palliative care doctor and I had a 45 minute appointment and took care of all the end of life issues. It is in the computer for any health care provider to view. I also have a pink paper hanging on the side of my fridge in case an ambulance comes for me. It has her paper number on it for anyone to call.
My ashes are going to be buried for my daughter to have a place to visit. It's much cheaper that way. I also did a rental casket for the viewing. Cheaper then buying one and the rental is wood. I picked out the cards, book and pen. I signed over an annuity to the funeral home.
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for those of us choosing cremation please check out artfromashes.com. they are near where i live and for some of my cremains my daughter wants a bead or necklace so i am always there for her. i know eventually the need will lessen over time but feel for the acute grieving phase why shouldn't i be with her everyday.
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penny i think they can make synthetic diamonds as well from our ashes- after all isnt a diamond carbon based?
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Thank you all for your thoughts. This is just a shock after thinking everything was good 5 years ago. I have been thinking a lot about what do leave people and how I want it all to go. Maybe putting it on paper and getting it all in order will help me focus on the positive. As I said, I'm not ready to go anywhere right now and I have a lot I want to do. So as I told my boyfriend, I'm gonna focus on living for now. Thank you all again and I will be back to visit. ~Lori~
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Bon,
What a loving person you are! You want your husband to find someone else and all the things you have done to prepare. It has also given me peace to be able to live life to get them done. One of the hardest things was the way family reacts when you tell them things are done.
That is a good idea about the jewelry. That would probably be good for my daughter also. She came up with the idea that everytime she sees a blue heart it will be me in spirit. I agreed. Now if I could just find a cheap blue heart necklace for my sister to give to her once I am gone.
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I was bummed when I found out I could no longer be an organ donor. For me personally, it was something I really wanted to do. So I did some research and found that I could donate my body to the University of Washington Medical School-- just a few miles from my house. I completed all of the paperwork already, so when the time comes my family will make a call and UW will pick up my body, no cost.
I told my parents they can have any kind of service that they want. I'm not religious, but my mother gets a lot of comfort from her church and I think she would like to have a service there. It's for the survivors, so I'm okay with that. My dead body or ashes won't be there, but I'm sure they'll have pictures or something.
After one year, whatever is left of my cadaver will be cremated and returned to my family. They offered that as an option and my mother wants the ashes. The other option is to have your ashes buried in a yearly ceremony at a cemetary where the other donors are also buried in a group plot. They have a service that the medical students are required to attend, non-denominational, to honor the people who donated their bodies to science.
I know this isn't something that interests everyone. But if it does sound like something you'd be interested in doing, check with your local hospital or medical schools. Even if you don't want to donate your entire body as a cadaver for med students, they sometimes have options where you can donate organs for study. Kind of weird to think that my kidney might be in a jar for years and years. . . but kind of cool, too!
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there is a lovely woman potter who makes urns and paperboard cremain containers that will degrade in the ground or 2 hours if dropped into body of water. she sells on etsy and i will post her website if anyone is interested. i live near her and plan to visit her studio and have paperboard with what i love in nature incorporated into her art. i am hoping my kids will go with me, did the funeral director bit this week. can't believe direct cremation with out anything.viewing, embalming, service obit , no casket is still 3000. learned about how much cremains weigh and all are pulverized now no distingusihing between burial and scattering. i love my box just dropping to the ocean floor as my kids wade out. will use mary oliver poem hermit crab. thank you to all that share here
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Petjunkie, I was bummed about that too. I had to go renew my licence on my birthday a few weeks ago and she asked me did I still want to be a donor..had to say no.
I was checking out the donate your body to science thing also. Mostly because the cost to use a funeral home is just to much! I can't justify spending that much on myself while I'm alive, no way I will allow it to happen when I'm dead.
I found out pretty much the same as you described at the University hospital here. Sounds like that might be the standard way it goes.
As far as what to do with the remains when they are done with them, Penny, I love your idea!
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it's unusual Santiago that someone in their first post, would link to a sales site.
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It's not unusual if that's why she signed up!
So yes, I'm reporting it.
Leah
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There's a dollar to be made in every situation I guess. I'll bet this post is made on many other websites
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I'm lost, what post was a sales call? I can't find it.
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it maybe gone already. Happy Mother's Day to all. I just want time with my son and daughter where we all stay in the moment. Asking for coupons i can redeem for wishes like they brought home from school when little. if i could find them i would start redeeming. don't like this being "needy" business, never was, never wanted to be. i guess it is still a sign of strength to admit when we need help.
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Leah, I reported it-the sales thingy. It was deleted right after you posted your note. Scumbag. Gone.
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my son and daughter and i went to the potter's studio who makes beautiful ceramic urns as well as biodegradable in earth or 2 hours in water. she is an amazing artist and person. if anyone is interested i will post her web address and she does sell on etsy. mine is blue sky for when i travel to where sky meets ocean. my daughter picked a small ceramic universe or galaxy the glaze changing color with the light. my son picked her leaf pattern with intricate design. so happy they would travel this part of my journey with me.
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It's good to see this get active again. I needed the info on Direct Cremations and now I have one bookmarked to add to my planning.
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Bon, your list is masterful. I would like to make some additions.
1, check all bank accounts for TOD --Transfer on Death, or POD Payable on Death. The beneficiary only has to present death certificate and photo i.d. ----avoids probate. You can have a second person on the account with you, but in certain states assets are frozen when the primary account holder(first named person on the account dies). May not be preferable to have a second person on your accounts --if they get sued for something your assets may be attached to suit. Better to do TOD/POD. If you become unable to do banking your Power of Attorney--POA--will allow your designated representative to follow through on everything. Plus in Florida with TOD/POD on accounts--POA can work, but then TOD/POD takes over at death. Avoids someone wiping out your bank account----Nice to have POA and TOD/POD and Will Executor the same-------If they are absolutely trustworthy. Know of several instances where Executors and POA's were dishonest.
2, record your passwords for all asset sites--banks , mutual funds, pension funds, compushare funds--- for POA and keep either in safety deposit box or REALLY safe place.
3.Make sure POA knows where safety deposit key is. Drilling box costs money---my bank charges 75$. Make sure whomever you want to have access to safety deposit box is a signatory prior to death saves time and headaches.
4. check all insurance policies, mutual funds, compushare funds for beneficiaries--don't assume it's done---do it today. We missed one---DUH----headaches for a year and a half.
5. keep titles to car, boats, motorcycles, other toys that need state licensing and tags retrievable-----you will need to transfer title and for resale.----make sure how you want to transfer title---every time you transfer title it cost money. I transferred two vehicles to myself and son-----should have just transferred to son----at government office, I had to show a copy of the original WILL even though it hadn't been probated. My photo I.D. license and Marriage license.
6. copy of Will may be good for the bag. BUT an original Will may be required for certain things. Know where it is(safety deposit box). The lawyer may or may not keep an original. I didn't know they didn't. The day after I considered shredding Dh's, I got a call from lawyer needing the original. Whew!
7. if not probating b/c everything was set up so nice-------do not take spouse off your bank account---checks may come in for years and they will still cash them. If you probate, the bank will block cashing checks to spouses name b/c they know they are dead.
8 probating ---you must set up a probate account to deposit checks payable to spouse. This account must have a tax identification number--EIN number--can be set up by bank or your lawyer. My lawyer insisted she set it up--not due to billable hours--her experience was that banks didn't do it correctly in too many cases. Who knows. I trusted her.
9. the year following the death when you first file income tax on your own. You will likely get a notice from the IRS that says ______(my case DH) hasn't filed income tax. Contact lawyer or tax preparer--------in my case, we hadn't filled probate yet and it showed only 200+$ income. Tax preparer gave guidance. Each is different.
Trying to think what else went wrong....pondering ....can't think of anything right now.
10. keep estate expenditure file with dates and time of expenditures and release of funds. Will need for next years taxes.
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That's a lot of info!
I have a fire proof/water proof safe that I bought at Wall-Mart. It can be screwed into the floor. I used to have my brother on my safety deposit box, but discovered that they will not open it once they find out of a death on either party, until everything has been settled in court.
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Ma----At the point of death of anyone that you have any point of control of a safety deposit box ----empty it---before the bank knows----if you are a signatore. Can save all kinds of headaches and legal costs. i.e getting access to insurance policies, other things--- the bank can make life troublesome---by blocking it. Also, can be a saving grace. Depends whose in charge.
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I am so thankful for this because topic because I cannot talk with anyone. My husband is in complete denial and I just lost my father in March so I can burden my mother. I'm not close with my family. My girlfriend is my only outlet. now I have this line. I have extra clothes given to charity, jewlrey passed out, list of other items and who gets what. A notebook for my husband including 401K info, other account info (we keep separate finances), who to call and what to do at my death. My neice asked me how I wanted to be remembered and I've started an essay to the family and friends. I will also prepare a slide show of pictures and music I want included for my visitation. I read this book "Dying Well" ( I HIGHLY Recommend) which said that you die the way you live. I'm a control person. Thanks again for this link where I can talk about dying.
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Karkar, glad you found this thread. Bon wrote a piece several pages ago that is incredibly valuable. I'll try to bring the link here.
http://community.breastcancer.org/forum/8/topic/770023?page=14
Duh I went from page one and Bon's post was on page 14-----one page before here.
I am not stage IV-----moments were raised as to moving to stage IV. BUT when this thread was started, it wasn't defined stage 4. I posted allot in the beginning, then why I stopped the memory isn't there. But it is a disservice to all women and men that come to BCO to assume that only stage 4's want to discuss preparation. We all need to be prepared. We know not the time or place........ Leaving affairs unprepared at 25 and healthy is as problematic as any one with stage 4 cancer. 9/11 was the biggest situation in recent history as why being financially prepared is so important. I now have reread all postings from the beginning, it even further supports being better prepared. I know none of you will disagree.
I will encourage non stage 4's to review these pages, as the benefit to all is important.
For all that have such troubles in your lives, sorry. All BCO sisters and brothers are being remembered in prayer. sheila
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texasrose - here is a link for the diamond from ashes, it is very cool but it is a little spendy. I considered this with my mom's ashes but then I worried about losing the piece of jewelry or someone stealing it - I would be so stressed that mom would be missing or someone else would have her!
http://www.lifegem.com/index.aspx?BType=GTxt&BAg=HCrem&gclid=CJy-oLD8t7ACFQUEnQodmW6f8w
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Holy screaming yellow zonkers!!!! You werent kidding about the prices. $2K+ and up.
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chickadee - that added to my anxiety about doing it - so I spend $2000 and then misplace my mom, lol! She was cremated and placed on top of my dad's casket in the same gravesite. She thought that was hysterically funny, because she finally got to be on top!
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LOL!!! I'm still intrigued with having my ashes scattered into the water pool in front of the Bellagio in Las Vegas. We were married in LV 30 years ago this August. Gamble that paid off.
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Sas- It's in my home now screwed to the floor in a fire and water proof safe. I also never intended this thread to be for just stage IV. However, considering the topic I put it in the stage IV forum.
Special-k, That's funny that your mother finally got to be on top. Thanks for the chuckle.
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LOL specialK!
Chick - fountain at a casino in Vegas - sitting here in a tiny village in middle England that sounds soooo fab and Rock n Roll! But hey you're tramping it with 2 boys right now so hoping that in going to be away in your future! -
Ma , I never thought you did. I'll refer when I can. The info here is so valuable. Thanks sas
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Well, I guess I'm going to have to go back and read the thread. My stuff is not looking to good either. I have to say, I am totally pissed. My kid's are in total denial. They are teenagers, graduation and all that. Geez I'm pissed. Sorry girls.
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FOLKS, talk about being prepared, one of our sisters Nancynow's Mom had a "Sudden Death Event" within the last 24-36 hrs. She had bystander CPR, doc on scene in front of UCLA medical Bldg, <2 min EMS response>>>defibrillated on scene>>>to hospital>> evaluated>>to OR--surgery for valve>>>ICU on respirator, already trying to talk around the tube. ---------Rare that it all happens this way. Rare , rare, rare. God bless her and her family.
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Bobkat, Sorry about the teens acting that way. It might be the way they are just dealing with it. My 18 year old goes into some of the weirdest phases. One day she thinks I will live long, the next she is asking how to put the fertilizer on the lawn since she will be the one doing it.
Sas, Thanks for the story. It's nice to hear that someone has done well for a change.
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ma111, please review what I wrote on this thread. it's important b/c this thread is one of the threads the mods have directed to as a first reading to get to other threads. So your input is important. Thanks sheila
http://community.breastcancer.org/forum/5/topic/748296?page=5#idx_128
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Sheikla,
I did not know that. Thanks for the info.
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Didnt know where to write this, didnt want to start a new topic. Just wanted to say i missed you ma111, missed you all the last couple of months. its my birthday today. 48.. and im crying.. thinking about my daughter, how on earth she's going to handle being alone. Thinking about how i really need the '20 year with mets' story to happen to me, i need to be here for her a few years longer at least. feeling very sad and sorry for myself...and there i was thinking it would be a day to celebrate another year on this earth...and i end up crying, sitting on the bed alone as she has gone to a friends house for a sleepover....life hey.......
I think this is a death and dying issue. the fear. I know i will be better tomorrow. thanks for listening
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Actually, what i need are serious ideas on how to help her set up for the future. Im encouraging her to marry early (not sure if that is sound advice!) But without me, she only has family friends to take care of her. I seem to be losing people more than gathering them close. Should i consider setting us up in a small townhouse and then expect her to continue on there alone, hopefully at least i can get her to 17 ish? or wouldnt she want to stay there after im gone? who the hell knows what to do. Im overwhelmed with the fear thoughts at the moment. Ma111, what have you done to help your daughter feel secure about the future?, if you dont mind sharing that. Does anyone have any ideas?, again, thanks for listening, n.
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(((Thats-life))) Î'm sorry you're feeling down on your birthday. It is frightening to think of the future.
How about writing a how-to book for her? Which is really an excuse to put your thoughts down on paper. That's all I can think of. Teenagers don't want to listen anyway, but maybe if they read it, and it has pictures. LOL. I think it's important they they practice doing things on their own. I have to teach my daughter how to do the laundry, how to keep her room neat, how to deal with men, how to eat healthy, etc. Friendships are very important for them at this stage so I would encourage those sleepovers!
Hope you still get a chance to celebrate your birthday.
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That's life.
Happy birthday. Hope you feel more like yourself soon.
My daughter is 12 and my son almost 15. If I get 2 more years I'll be grateful (but still pissed off...)
I have started to do some low key stuff with them like getting them to help me make the pizza dough, setting up bank accounts and talking about money, dyeing my sons hair (that was fun!) etc.
I am thinking about talking to specific friends who have offered to do stuff for the kids so for example, my daughters godmother has said she will take her to afternoon tea at the Savoy in London on her 18th birthday and another friend is going to keep an eye on my sons fashion sense!
I've also started keeping an online diary which is private and which I will let my kids have access to after I die. It's with a company called Penzu and it costs about $20 per year although there is also a free option. you can upload photos and put in links to sites. I did think about a private blog but the default setting is last posts first and I want them to read it in chronological order. They can also print it off to keep.
I suppose it's a bit like Heidi's idea but online.
Laurie x -
Good days and bad days, this is all so confusing. I now know I am not as lost as I feel. "Thats Life" and "Alesta29" my kids are just a bit older than yours but, I surely feel like I am letting them down. I have three dd's ages 24, 22, and 20, and my baby is a ds that is 18. Everyone was always shocked at how close they all are. I used to joke that I had them all that quick, so they would all go off to college just as fast. Come on God, it was just a funny. I didn't want them out of my life, and I surely don't want to be gone from theirs. I to will hope to be a long time stage iv survivor, I will do what ever it takes to get there..........as I know we all choose to.
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Do we have any place that has links to funeral/memorial programs or templates? Or obit templates? I want to write my own cuz well, my husband can barely send a text that makes sense, poor guy. i love him anyway!
I did find a nice poem I would like to use
When I'm Gone
When I'm gone to the end of my journey and I travel my last weary mile. Just forget if you can, that I ever frowned, and only remember the smile. Forget unkind words I have spoken, remember some good I have done. Forget that I ever had heartache and remember I had lots of fun. Forget that I've stumbled and blundered and sometimes fell by the way. Remember I have fought some hard battles and won, eve the close of the day. Then forget to grieve for my going, I would not have you sad for a day. But in summer just gather some flowers and remember the place where I lay, and come in the shade of evening. When the sun paints the sky in the west, stand for a few moments beside me and remember only the best.Edited cuz I am a dork and posted early.
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Awwww that's really nice.
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Nice poem - made me blub but that's OK!
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Such a lovely poem - have copied to my 'for my funeral' file :-}
Mx -
Thanks, ma111 . I have not checked in for a few days. Last days of school very busy. I moved out of our house and away from hubby. Everything somewhat okay. I am having a good time with the kid's and all but...they seem to think this is a place for all their friends to come to. I have been so busy trying to control the situation I think I'm going nuts!lol I want them all to feel comfortable and have a good time. I feel like if I don't do this now, well you know. I have to say I feel at times though I'm being taken advantage of. They ( my teenagers) don't get it. I also take care of my 2 yr old granddaughter everyday and feel a bit overwhelmed. Oh got to get off again! Kid has popped bike tire and needs me to pick him up! After he sneaked out by the way! Nice poem mizmerz!
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Bobkat:
You have a very full platter bright now. I wonder if you would have a 'family powwow' and explain to the kids what you are feeling and ask them for some suggestions as to how you ALL can help the situation, if they just might surprise you with what they come up with. It's been a LONG time now since I had teenagers in the house, but I know, if we tell others up front what we need, they are amazingly willing to help. Just a thought I can share with you to hopefully make the platter a little lighter!!!
I will keep you in my prayers!!! (Unless you tell me not to)
Vickie
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Poem brought on the tears...maybe its just because I'm not feeling well today, who knows. But its really a good poem.
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That is a really heartfelt and beautiful poem! When I read it, I thought this is how I would like to be remembered!
Thank you for the post.
Rose
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Love your poem, Mzmerz!
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I just now got a new death and dying issue. There is a post from a woman who lost her mother to BC and in this post she tells about how absolutely horrible it was, for her and her mom.
I am freaking out since reading that. I mean I know, we all know, but to actually see it there like that... I don't know how to explain it but it put me in a panic.
I'm still pretty new to all this and some stuff I read on here still hits me kind of hard, but not like this. I'm thinking I'm going to go take a nap on the train tracks before I get to that point which will hopefully be years and years from now, but I can't even think about it without getting all panicky.
Gah, I need some chocolate.
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That life, Sorry I haven't checked this thread. We do have daughters the same age and we are the same age. I don't know how it got out of my favorites. I'm not sure if what I am doing is the correct thing for my daughter. The counselor said to involve her in decision making, so I did. Easier said then done, but necessary. After I let my daughter read my will with my sister it seemed to take a load off her shoulders.
One of her greatest fears was being the one to find me dead, so it is in writing that I do not want to die at home. I am in a hospice program now and they also know this.
She said she wants to live in this house. My sister is in charge of everything which my daughter likes as it would be too stressful for her at such a young age. So, my life insurance is going to pay off the house so all she will have is taxes and utilities.
I hope you are feelikng better!
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Stormy, I still get panicky. I don't know how to get it to go away. I do feel better when some final arrangement have been done.
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thinking of you ma111..... all the time.
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stormy, I think the poster was referring to the mental issues her Mom had before she passed. That certainly doesn't happen to everybody. Please don't let it throw you into a panic. I'm going through some of the same issues with my Mom right now, but she is very elderly and more prone to dementia. The chemo treatments she got exacerbated the problem. Please, please don't think that's going to happen to you. When you're in your 80's it's something that's more likely to happen.
Peggy
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Apple, I also think of you all the time and glad to see you! I was off for a while with small bowel obstruction and pleural effusion. I have my own catheter now and can drain my effusion. Peggy, Thanks for helping Stromy.
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I used to worry a lot about my kids and what would happen to them. I actually am making a vow to teach them how to cut their own meat this summer! they are 11!! OY.
But after meeting a lot of people who lost parents when they were young, and seeing how my boys are growing I KNOW they will be okay.
Those of us with small children, they will be okay. It will suck for them, they will be okay. One of my dear friends was murdered last fall. Her son was 19. He is doing really well. The biggest issue was her estate. Those of you who are single should think about getting a trustee and setting up trusts for your children. You don't have to have big $$ to do this. If you have insurance, 401k etc...I want my $$ to go for college. If they don't go they will only get limited funds until they are 25 or 30.
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In October 2000, our son died in a plane crash (he was the pilot). My husband's sister and a friend were also killed in the accident. Our 3 granddaugters saw the accident happen. They were 15, 12 and 7 at the time. It was/has been hard for them but they are all doing well (their mom did a fantastice job of raising them). The hard times have been especially like graduations, weddings, and other important family occasions. He still lives in all our hearts and the girls focus on good memories of their dad.
Just be up front and honest with kids, they are stronger than many of us 'older' folks give them credit for.....
Vickie
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Having a really hard time at the moment. I had got my head around the liver and other mets etc but the brain mets diagnosis from a few weeks ago has really knocked me for 6 and I don't seem to be able to bounce back.
I spent yesterday tidying our bedroom - clearing things out is my default setting for dealing with stress... In the afternoon, I bought my husband some clothes despite the fact that he's more than capable of doing it himself. I bought my son stuff for going back to school in September. I'm trying to get bit of the house sorted so my husband has less to worry about. I think this may be my last summer (and what a crap one weather wise it is
Have spent today trying to write things down in my online diary and a few weeks ago I bought a voice recorder to tape stuff for when I'm not near a computer. Sometimes I don't know what to write. Do I want my kids and husband knowing how scared I am and how royally pissed off I am that I'm not ready to go. I seem to end up writing stuff about my childhood for them and things I did in my life but when I read it back, it's like it's nothing of consequence but I don't feel able to say the real stuff because it upsets me too much. I guess I'll work it out at some point.
I'm not looking for reassurance that I'll live for many years to come because I know I won't. Just needed to write this down somewhere because I can't tell anyone else how I feel and know you all get it.
Laurie
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Laurie, keep writing/recording. Whatever you capture--thoughts and feelings mundane and profound, childhood experiences and adventures--it's all "real stuff." Your children will treasure every word and love that you made the effort to show them who you are and how you got that way. It's an act of love.
I wish I could hop across the pond and visit with you.
Tina
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Laurie, I have done and felt the things you describe. Spent this weekend going through boxes of paperwork and organizing files. Don't want to leave that for the husband to do; I've always managed the financial things. Been thinking of going to the funeral home and picking out a casket. I don't want to leave it for my family--they may feel they must go with something more expensive and I don't want that.
I too struggle with what to leave behind for my children. Should I make something handmade for each of them....fill out a memory book....write letters of encouragement and advice?
My oldest daughter loves everything British--yesterday she fixed tea and scones for me. She and I were planning a trip to England next summer. I shed tears (when she couldn't see me) about all the lovely things I am going to miss doing with my children when they are adults. I have poured my life into them and now I will miss seeing the rewards of that.
I am still in the midst of treatment and hoping for more time, but feeling like I need to be realistic too. Such a confusing place to be.
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Everytime I think about videotaping or recording anything for the kids, I just break down in tears. I bought a book called, "All About Me". It is a book that has certain questions that you are supposed to fill out. It asks about your best friend in grade school, your first kiss, etc. I found it was easier to answer the questions than think of my own things to say. I also bought a book that talks about my marriage to my husband, why I picked him, etc.
I just hate this stuff. Sometimes I think it would just be easier to have died in a car crash so we wouldn't have to think about it. I don't want to leave my kids; are they even going to remember me? -
Laurie,
My heart aches for you......I know how my mom was when she had her endometrium/ovarian cancer mets. to the liver. It is not an easy thing to face. Even though we know from the day we are born we will oneday expire, some sooner than others.
If you feel you can't share your deepest feelings/fears with your husband perhaps you could see/talk to a therapist. I believe (these are just my thinkings) that perhaps when faced with the terminal aspect, we go through a "pre" grieving phase. At least let those emotions out some healthy way, be it recording/writing. Your family too is having to face this awful reality!!!!
If it is okay with you, I will pray that God will bring you peace, and will keep you comfortable in your journey!
{{{{{{{HUGS}}}}}}}
Vickie
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Alesta, keep writing and talking no matter how mundane you think it is. We all want to know that we mattered and things we did in our life mattered......to someone. Maybe we aren't famous or infamous, but here and there we had an impact. Like history, let others be the judge. You may be talking and writing for a great great grandchild who wants to know family history. How cool is that?
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Laurie,
I think that you family should know that you are pissed off that your time has come before you wanted it too. That shows love. It is easier said then done, but I have told my daughter I do not like the idea of my not getting to see her graduate from college and develop a family and stuff. It was the start of a good conversation for us.
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Laurie...just thinking about you. I can't begin to imagine how you're feeling.
You know we are all here to take the flack when you are feeling down.
How are you for relatives who will listen ?
BIG hugs.
Isabella.
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NOVENA NOTIFICATION
We will be starting a novena Tuesday Aug.14th . I have asked Frank to pick the novena. Please, keep him in your prayers daily as he is being chemo challenged at present. The herceptin has stopped working. We have many members that are having condition changes on the Catholic thread and throughout BCO right now. Please , join us on the 14th.
A Novena is prayers said daily for 9 days with stating the intention of your prayer. An intention can be for a person , group, or a thought. You don't need to be Catholic. Prayer is Prayer. If something in the prayer doesn't fit your belief system, substitute or omit that portion. We are an Ecumenical group which means inclusive of all.
Everyone on my Favorite member list gets this notification, as I have added those that have been involed in the past, UNLESS they are there for a different reason. Frankly, my memory is getting worse. So, if you have receive this and scratching your head as to why, please forgive me.
Send your intentions to me by Pm or post on Catholic thread on sunday (preferrably) or monday and I will combine them into a one list. It takes awhile to do the composite list, thats why I ask that intentions be sent on Sunday, Pax Sheila(sassy)
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Novena notification update:I unintentionally made it sound as if the novena was just for Frank. Franks change of condition triggered us to want to do a novena. The novena is for all of us on BCO and others that are added by members. The link below goes to the working copy of the combined list of intentions,If those unfamilar with a novena would like to take a look and see how it's being put together. The next paragraph is the first intention.
Dear God---May all, of many Faiths, come together in prayer and support of each other. Jesus Christ,Mother Mary , and the Holy Court of Heaven, hear our prayers for all the sisters and brothers of BCO in this there time of need. Strengthen them and their families and let them not despair. Heal them if you will, or guide them to understanding and acceptance of your plan.
community.breastcancer.org/for...
So, if you want an intention added for you , or someonelse please PM me any time now. Probably should put this link in your favorites to refer to on Aug 14th. At this point we are leaning towards ST Peregrine Patron saint of Cancer as two members are willing to take the intentions to ST Peregrines shrine near Pheonix Az.
Sorry for muddling up the first communication. It all seemed logical at the time. It was only after multiple messages received that I realized the problem Thanks for your involvement. SAS
The prayer that will be added is said once a day and the intentions are said once a day
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Just wanted to say hello and hope everyone smiled today
. It surely helps me. -
Hi Laurie,
I haven't talked to you in a while .... still working on that baby quilt for my granddaughter. Took my grandson on a two day birthday trip this past week before I had my chemo. Trying to stay busy because it keeps me from thinking about crap. I have made scrapbooks for my kids over the past 10 years or so that will bring them memories of the life my DH and I made for them. At one time I sang some of their favorite "childhood" songs on a cassette though I don't know where that is anymore. My oldest son gave me a book last year for mother's day similar to the All About Me book mentioned above. He said he hoped I didn't feel bad about the gift ... I didn't, but I haven't taken the time to write in it. I'm just sorry you're having to think of this kind of stuff ... really that any of us have to. Losing Reesie has just brought all of it too close. It can happen so fast so it is something we need to think about and prepare, especially when you have kids as young as yours. Hopefully we will have lots of time to get ourselves together and implement our plan ..... I pray for you, Laurie, that you are given the time you need. You are such a wonderful voice of reason on the BCO site and have given such good advice and support to all of us. Remember there are lots of hugs coming across the pond to you. You are loved!! -
Thanks so much Glenna. Good to hear you are having time with your wonderful GKs. Got chemo yesterday Halaven - so well see how things go. Hopefully it will keep the abdo fluid at bay - having 15l drained was no fun!
Feeling a bit more up and hopeful after a crummy couple of weeks. Have mum, dad, sister, niece and maybe brother visiting over next week or so which is lovely.
Such a shock about Reesie. She only pmmd me 3 days ago. What a fabulous, generous lady she was.
Heard from Kimber? Meant to check if she had been on recently.
Lx -
Mods, could this thread become a sticky? Lately there have been new threads started with subjects that would fit well into this thread. Does anyone else think this might be a good one to leave accessible at the top?
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Chickadee, that is a very good idea. Ma111 was brave to start this thread, i remember discussing it with her. She needed a place to discuss the hard stuff, we all do. I just saw on my fb that Ma111 passed on Saturday. She was such a wonderful, warm, straight talking, caring woman. I think it would be very fitting if this became a permanent thread. Thanks Ma111, for being there for me.
eta: 21,000+ views of this thread, it is important.
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Oh no. How very sad.
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Wonderful idea, chickadee and thats-life. Ma made such an impression on me with this thread, and it continues to be strong. I hope it continues to help and comfort others... Ma would love that, I know!
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Oh, so sad about Ma, been wondering where she is. She was so sweet, always had something nice to say. Sad stuff this week. Keep thinking about Reesie, and of course, Louise.
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Ckickadee, so agree this thread should go on . It's info is priceless for anyone. I did put a link to it in my Just Diagnosed -get Prepared thread. But it needs to be more visual then that.
I'm going to add Ma's thread to the header of my thread. Ma thread link was added in a latter post when I referenced it to another members question. I just revised the header yesterday. Another, dear member, kindly said how she had watched my writing over time. She said it had much improved. JD-GP was my first thread, sheesh was she right. This would be at good reference to Ma111. Until the mods figuired out what to do.
Threads don't terminate b/c the thread leader passes. There is a port thread I've been bumping, for may be a year or more. It is a quality piece of work that tbird57 wrote in 08. Her last post was Jan 09.
MA THANK YOU SO MUCH FOR ALL YOU DID TO CARE FOR OTHERS. WILL MISS YOU.
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I was looking for something for somelse and found Ma111
http://community.breastcancer.org/forum/5/topic/748296?page=5#idx_133
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Rather than make you try to find something, this is the post that I made on june 5th--would have made it earlier. The link is now in the header of the thread
Jun 5, 2012 04:45 PM sas-schatzi wrote:
Folks you are here seeking info. I'm posting a link to a thread that may make some "feel uncomfortable" , but it's important because(b/c). It's a discussion of "Talk of death and dying issues"
community.breastcancer.org/for...
Why is this important if you are just being diagnosed. Well none of us "know the hour , or time of our demise". Taking a look at our finances early on prevents chaos, whether or not we pass from cancer or falling down a set of steps. Plus, there are many wonderful suggestions regarding preparing things for your children--young or adult that can make you happy by knowing that you can be doing things now ie. scrapbooks, talks, videos on and on. That even if cancer wasn't in the scenario, you would want to do or may want to do for your kids. When reading as in all threads skip what you don't want to read.
It's listed under the Stage IV mets forum, but again the info is universal.
SAS -
Bon-- tears
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Does anyone have really bad days or am I just having pitty party for myself. Today was just a bad day.
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I don't have many bad days, but about two weeks ago I woke up and just started to cry. Tears all day long. I was not thinking about cancer or dying and was not depressed about anything. I felt like a complete nut. I could not even talk to people. My poor husband was really concerned because the only time I cry is when I am really, really mad. I cannot explain it, but the next day I was fine. I sure hope I don't have that kind of day much.
Maybe my dry eyes just needed washing out! -
That's sounds just like the day I am having. Hoping tomorrow is better.
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Kidsandlabs, Im sorry you are so sad. Do you have any time for yourself? Id think you would be fragile having to care for others under these circumstances.
(BTW, id love to see more of that photo in your avatar)
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folks ma111 died, but what she started here is important, very important. I wish, it wasn't labeled for stage 4, and any of you that have seen my postings have known that to be true.
I know that you are grieving her, but someone hopefully will pick up where she was leading. She had it so right. Be prepared. Lead your family to be prepared. Make special things. Do special things
Those of you that were here had a cohesiveness. Don't let that go. You love each other. Losing Ma was like losing your own mother. Grieve for awhile, but Ma started this thread to take care of people that understood the reality of their disease.
She would want you to carry on and take care of others as well as each other. I'm going to copy this and send it to as many who have posted on ma's page.
When you are ready come back. If you can't come back that is understood.
There is a thread on port placements it was written by tbird57. She hasn't been heard of in several years . I watch her site and bump it b/c every word she had to offer was valid then an now.
Your words are valid then and now and your friendships developed here around Ma are still valid, but Ma is gone. I don't think Ma would be happy with the ending of the thread. She was on a mission. Her mission was to allow people to cope with the garbage and the stupid and the inevitable.
Pass the torch!
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I can't write alot now as loosing so many women these past few months has it me hard, but i am better for having known them whether in person or virtually. I encourage all of us to check out thelivesincerelyproject.com. What Vanessa and her sisters have given each other and the rest of the world is the most amazing genuine living loving legacy I have ever encountered. Like Ma not many wll stop to hear the message but please get as many people as you can. Her's is more than a Stage four BC story but it's not the pretty pink. Yes I have pledged to live my life more sincerely and hope I can help my young adult children to as well as one of my final gifts. Healing hugs and smiles to all my brothers and sisters.
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sas-schatzi - thanks for bringing this thread back to my attention. There are so many threads going and of course we don't have time to visit all of them. I agree the information in this thread is invaluable and shouldn't be relegated to the back pages where no one ever sees it. While some may not be comfortable talking about their end of life plans, I do believe many of us think about it. I just had a scan yesterday which showed shrinkage so I'm feeling pretty good but that doesn't keep me from thinking of the reality of my disease. I have made some plans but when I try to talk to my DH about them he "half" listens. I plan to write everything out and be very explicit but must admit I haven't done that yet. There have been some great lists posted by a couple of ladies that I have made copies of and am working on getting all those items together in one folder. My DH is GREAT at work stuff but I have always handled everything on the HOMEFRONT. Any help I can give him I know he will appreciate. And if he goes before I do, I'll know what I need to do as well. No matter what our age, we should have a plan in place .... even if we're stage I. It's just the smart thing to do. Thank you, ma, for starting this thread.
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This thread has given me the impetus to talk with my DH about dying, even though I have nothing, except a diagnosis that, at times I think is a mistake, to make me think that my time is going to be up soon. We owe it to ourselves to keep this thread active, for those who come behind us, for those whose life circumstances will inevitably change.
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Ma was a very special lady. There were nights I remember going online because I couldn't sleep and Ma would be here, posting away, giving hope, encouragement, and solid practical advice to everyone... and not just Stage IV! But it was this thread that opened up a much needed discussion. I believe Ma's philosophy was to get the affairs of death in order so that we can live more freely, without worry for our loved ones. I know she did that for her daughter. Thank you, sas, for bumping this. I still like the idea of it being a permanent thread at the top of Stage IV... but that is up to the powers that be!
Remembering Ma, with love and gratitude...
Rose. -
I have to say that this thread was very helpful for me. When my Dr. told me my cancer had come back it was quite scary. When he said "stage IV, mets" I didn't know what to do, or where to go. I felt so isolated and terified at the same time. I did find some great words of advise from so many of you ladies. There will unfortunatly be more women like us. They will need words of encouragement and advise. I can only hope, they find those words from those of us who have had to walk this walk. I will surely keep reading and posting. Thank you all. ~LORI~
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BUMP
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Does anyone know if you need to include people's social security number in your will? I want to leave some things to people that don't know I'm leaving them something. I'd prefer not to ask them for the SSN.
thanks,
Kim
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My sister left some money to her nieces and nephews. Thry were not aware that she had done this. They were contacted by the company that held the policy, but they did not have their ss#'s. The recipients provided it with the paperwork when they claimed the money.
Caryn -
Our experiences are.....when our different parents died, the lawyers doing the probate stuff asked us for the names of each of the survivors and they (the lawyers) sent forms to each person to be filled out with SSNs. Even though some lived in a different country and were not named specifically in the USA will, they each received the same form. However, the amounts they each were to receive were figured from different funds that were in bank accounts in that country. Worked out well for our families. The original wills had been written using % amounts of estate to who it was to go to.
Vicks
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Vicks, Bon, and Caryn:
PHENOMENAL news for me. You've lifted a big weight off of me. Now, I can start to do proceed on my will. This is really super news!
Hugs,
Kim
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Love anyone that was involed with Ma---she was a great Lady and started a thread that is so important to all. this thread is critical to all BC folks. It should be a teaching thread to folks that don't have cancer.
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I have copied and pasted some of the great advice here and made lists for myself. It feels good to check things off that list .... Knowing I am helping my husband when he will need it most. Also think it will help me if something should happen to him. My BFF lost her husband 8 years ago to colon cancer and she couldn't believe how complicated it was to take care of all these details. He had been the bill payer, etc., as I am here and she was LOST! Much better to be prepared as much as possible!!
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I am an estate attorney in new jersey and I can tell you that so many people especially women of an earlier generation are really clueless when a spouse dies. Some have never even written a check in their lives. I am impressed with all of you who just want to make things easier for your loved ones. I just wish everyone would consider doing this.
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Yes, it's surprising in this day and age that there are still some women who leave so much financial stuff to their husbands.
I only recently started looking at this thread. I'm now more in a place mentally to make some final arrangements. Right now I'm stable, but I'm taking care of some things now and it's actually been kind of calming and comforting. DH and I bought a cemetery plot and know that we both want to be cremated with the cremains buried. My question is about the headstone. I went to a very reputable place where I live and a 30" x 18" upright stone with a 36" base would run us about $3,000. It seems kind of pricey to me. I wonder what others think. They offer a lesser grade of granite and the stone would be about $2,000, but of course they make that imported granite sound iffy. The upright is what we want.
I apologize if the subject's been brought up before on this thread. I plan to go back and read all that's been posted as I get time to do that.
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Bon,
Thank you for your notes on this. I'm a single Mom and can't believe all that needs to be done when someone dies. My family would be lost without tips & resources to find things. I have typed up letters with contacts for all ins & benefit info as well as will. I did TOD's because my son is still a minor.
I liked the thankyou notes for doctors you wish to notify and thank. Valuable info.
Thanks,
Terri
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Bonnie, sounds too good to be true! I'll be waiting to hear some other responses!!
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Bonnie,
Mutual of Omaha has similar policies available. Their return in the first two year is all premiums PLUS 10%. After 2 years, they pay out full amount of the policy.
As for "listening" to the financial guru's advice - well I did that. I was the main supporter for us. My job was secure and good. My DH is commercial construction and it had tanked in Las Vegas. The guru's were telling us that having "cancer policies", and other policies, such as Aflac, high life insurance, etc. Were basically a waste of money at my age and health ( which was EXCELLENT). I dropped the cancer policy (50,000) FOUR MONTHS before my diagnosis! Oh do I ever kick myself daily for that! I dropped Aflac, and cut my life insurance down from 100,000 to 25,000. I have been black and blue from all the kicking to myself! I thought the extra $150 a month would help us through the construction down ward spiral. UGH!
I am now maxing out on those life insurance policies with guaranteed return! Yes, high premiums, but at least I can leave a little something to my grands and my DH. -
Wow. You mean a person with stage iv cancer can still get an insurance policy? After seeing how much funeral costs are, even with a limited viewing service and cremation as well as a headstone, I'd like to get an insurance policy to cover those costs. I'd like my husband to get one as well. He has insurance with at his employment but of course when he retires in 10 years it gets dropped.
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Well, I'm cheap err frugal. Dh and I had talked about our wishes. He was creamated through a company that only does cremations. We skipped the Limos. No viewing. Catholic Mass. Lucheon(300-350$) at the local restaurant with certain amount of food ordered(Lasanga, baked ziti, vegetarian lasagna, salad, a vegetable, and garlic bread b/c of unknown number of people coming. We had to supplement with more food--Pizzas went well and they were quick. Then back to the house, but forgot to think finger foods for house. Beer flowed at both places. My dress<100. Cremains box--ironically matches the other antiques in the bedroom, but was almost 300$- total cost at this company was between 12-1300$ cREMATION, THEIR ROLE AT CHURCH, AND CREMAINS BOX. We decided on no burial at this point b/c I don't know where I will end up. Son had three very large pictures made--19x23 100$. 1. Our wedding pic. 2. A pic of us as young marrieds with our first dog. 3. Sons graduation from Law school with the three of us. Graduation May 2010,and Dh passed in August 2010. Frames given to him by a dear friend who had used them for her parents. Otherwise, cost would have been higher. Family flowers--235$ (?). Bottom line is the whole funeral was under or around 2000$ or if was plus that it wasn't much. The pics can be reused for me. The 8x10 of us being bald at the same time was on the altar.
What went wrong. Finger food for home, regisration book at the church wasn't put out by the grief coordinator until 2/3's were seated. I wasn't up to sending thank you notes. Missed getting the time it would take for the funeral Mass , so, the time to the luncheon was off by 1/2 hour. The cooked items weren't ready and there was no way to hurry them up--they had to cook. Not enough waitresses needed at least 2 more. Being the old waitress I am and a friend as well--up we got and served drinks and water. Pissed the owner off, but I said not my problem, you should have had staff available. How did it look with the widow waiting table. That was along half hour, OTHERWISE, ALL WENT WELL.
Divine Hugs----The Marker is such a personal item. My SIL and her 2 brothers and one sister payed out of pocket to have a gorgeous shiney black granite marker 3500$ --typical on one side, then on the otherside was carved the family lake with cottages in a scene that depicted sunset. Breathtaking. Would I do that-- never. But I'm really cheap err frugal. You sound like the grave marker is very important to you, follow your heart. If cost isn't an issue, purchase what makes you happy to the point of crying. Sounds odd. That is a good delineator. If you are so happy with what you have chossen that it brings tears to your eyes---go with that choice. You will never look back and say I wish I would have made a different choice. You will look back and think how joyful you are about the choice and then tears will happen again, but they are tears of a wonderful memory and a wonderful choice. L&H&P's Divine SAS/sheila/sassy
BON:) L&H&P's Namaste sheila
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Tread lightly with these guaranteed life insurance companies. There are numerous sites with complaints. If you do look into it, perhaps having a local independent insurance agent review it with you and compare it to other products.
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sas, I know one thing, you have brought tears to my eyes with your advice on the grave marker. Thank you for your insight.
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Divine((((((((((hugs))))))))))sassy
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Bon
sassy -
Hi everyone. I am relatively new to stage IV. This is a great thred. When I found out the cancer was back, talking about what could happen was very important to me. But my DH, my adult children, and friends don't want to think about that. So when I try to talk about it they block it with those comments we all get tired of....your a strong woman, your a fighter, you are going to be the exception..... it's nice to have a place to go were you can talk about death.
I have to say, I am not afraid of dying! I have a lot of faith in my God and what he will do. ( I don't want to turn this in to a religious debate or preachy post, so we will please just leave it at that) what I am truely afraid of is LEAVING! Does anybody get that? I want my family to talk to me about what they are feeling and thinking and dealing with. I need to know that when I'm gone they will be ok. That they will find a way to deal with it and get on without me.
It doesn't mean I'm giving up! It doesn't mean I think this is it. It's just something I really need to talk about. It's part of my dealing prosses. I don't want people to be uncomfortable but I need to know. We all know death is a reality. Not talking about it doesn't make it go away.
I have to add, I love you girls! I always know I can come hear and find answers or talk about what I need to. This has been the greatest support for me in these last three years.
HUGS FROM ALICE -
Alice,
Facing and acknowledging reality is NOT giving up. It took me a while to convince my DH that this is something I needed badly so that I could put it in a file, leave it be, and get on with LIVING!
He was finally able to accompany me to the funeral home. (I told him that I had made an appointment, and that HE would be responsible for carrying out my final wishes, and if he wanted ANY say in the matter, that he'd better go with me, because I was writing a check that very day to cover the expenses. That got his attention.). When that appointment was wrapping up, he wrote the check! And on the way home he looked at me and said, "thank you, your love for me is really amazing". We then went to the cemetery and I told him that I would like to be near his parents. He almost cried. There was one lot in that entire section available and it was right next to his moms. All we have left to do is the marker.
Once we finished this, it was a GREAT weight lifted. My DH has been very thankful and has even shared with some others that it has given a peace and comfort to him.
So again, facing reality is not giving up. And taking care of these issues now has released us both to enjoy the days and moments that are so special. -
Bon, Garth Brooks song has always been a tear-jerker. Thanks for posting the lyrics.
Also, thanks for posting the information on the guaranteed life insurance to consider. It's almost hard to know which one to go with, altho perhaps the cheapest. Looks like I can get $15,000 from Colonial Penn for about $80 a month or the same from AARP for $64 a month. I'm going to search the others and see which one offers the lowest premiums.
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I just checked out the Mutual of Omaha link. They offer $25,000 worth of life insurance for about $75 a month. So far that seems to be the better deal. The Triple A website doesn't seem to offer a direct quote, I think they want a rep to call you. So that makes me not interested in them. But am definitely talking with my DH about the others.
I really appreciate the topic. It's helping me feel more calm about everything. I want my husband and son to have a decent memorial service for me that helps THEM with the grieving process. I don't want them to take short cuts because they're worried about the money end. Yet even simple funeral arraingements are pricey. Like I said, I see the prices for funeral expenses and no wonder funeral directors are such big wigs. They are raking in the money.
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Okay, I just went ahead and applied for the Mutual of Omaha insurance. I'm just gonna inform DH about it later today. Hope you don't mind my saying that it gives me that much more incentinve to live another 2 years. lol. But, hey, I hope to be around a lot longer. But makes me wish I'd have gotten the insurance 2 years ago, because January will make it 2 years since my dx.
Bon, I see many extremely creative headstones, like the one you describe, in area cemeteries. They are fitting tributes to the dearly departed. My preference leans more toward a traditional marker; I like the date of birth and death rather than just the year.
I've always found cemeteries to be peaceful, beautiful places; still do. In the process of selecting a cemetery plot, we learned that our chosen cemetery is very financially sound and will be for years. Good people on the board of trustees there. The other cemetery close to us has lots of unanswered questions as to how much money they have and how it is and has been spent. We realized the grass is often not cut there, some markers are haphazard in place. It's very subtle, we never noticed it until we really started looking.
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Divine --good look at the comparisons of cemetaries. If you tkink of anything else let us know
It seems to me Selenawolf did a wonderful piece on cemetaries a while back. Great info. I'll look and try and move it forward by C&P. sassy
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i brought this forward b/c Selenawolf has direct working experience working in the industry. She made many salient points that the average person never thinks of. Apparently some took her to task for what she wrote. when it was first written. This is an excellent instruction on the cemetary industry. Learn from it. I you are unhappy with anything, just pass on by, or post as you will. But Selena was hurt by comments before. She was only trying to make the function of cemetary practice be known in it's entirey. I for one learned allot selena thanks. Divine some of your questions are likely here ---good luck.
Mar 19, 2012 09:59 AM SelenaWolf wrote:
Although I'm not living with Stage 4, I do work in the death-care industry; specifically for a cemetery administration office that sells cemetery property, arranges for digging, etc... So, if I may, here are my "two cents" for your consideration:
If you do have definite ideas about how/if you want a cemetery burial, and if finances allow, visit a funeral home/cemetery and pre-plan. The staff can guide you step-by-step through the process and answer all your questions. It's what they do for a living, so they will be direct in their answers and will not consider any questions morbid or inappropriate.
Ask about pre-payment options. Some cemeteries have them and you may be able to, gradually, pay for your funeral/burial - in advance - by monthly installments. Before you commit to a pre-payment plan, be sure you understand the terms and conditions. Some cemeteries charge interest on the outstanding balance and, if you pass away before paying off the plan, some cemeteries may insist on full payment before your burial can take place.Cremation is becoming more popular for several reasons. It is much less expensive than a traditional burials and people are becoming more "green". As a result, some cemeteries have cremation only graves (smaller and, therefore, less expensive than a full grave) and a few are introducing scattering gardens.
If you opt for a traditional burial (i.e., casket), make sure you understand the by-laws (regulations) of the cemetery you wish to be laid-to-rest in. Some cemeteries (at least, here in Canada) are making crypts/vaults mandatory because it lessens cemetery upkeep. It may be an extra expense that you/your family are not expecting.
Weekend (Saturday/Sunday) burials are, often, more expensive because the cemetery has to call in workers and pay them overtime.
Many people have very definite ideas about tombstones and memorialization. I've found that some families - who purchase in advance - and weren't thinking about memorialization when they purchased, are shocked and dismayed when they find out that they've bought property in an area of the cemetery that only allows flat markers when they want an upright one. So ... double-check when you begin to consider buying property.
Some cemeteries offer "one-stop shopping". You can arrange your funeral, your burial, floral tributes, and monuments/markers all at the cemetery. Other cemeteries only offer burial, so you will need to shop around for a monument/marker on your own. Before purchasing anything, make sure you understand if your chosen cemetery has monument/marker size restrictions, so that you/your family are not unpleasantly surprised if the cemetery rejects your chosen monument.
This sounds crass, but shop around, especially with privately-owned cemeteries. Each one will have price lists, regulations, and maintenance practices that will be slightly different. Prices, often, go up every year and/or without notice. Ask questions. Read their by-laws. Take notes. Ask more questions. Keep a file. -
I am enjoying reading through the posts. I'm only up to page 10.
I was dx stage 4 on 10/2.
I've gotten my papers in order, started cleaning out drawers and closets and plan to work on a journal for my boys 13 & 17.
I have shopped cremation prices I think I'd like to have home hospice, because we live 35 minutes from the nearest hospital. I guess I'll have to ask the boys how they would feel about my passing at home.
My husband has taken over a lot since I was first dx in 2003. He works from home and is Mr. Mom.
I plan to live - until I am not enjoying it anymore. -
OBX, I'm reading through previous posts, too, finding this so interesting, tho only up to the 4th page. Will keep reading. I am sorry to learn of your stage iv dx.
sas, gosh, thank you so much for Selena's insight on cemeteries. I didn't find it offensive in the least and would actually be interested in anything else she'd have to add on the matter. Where I live, the cemetery just takes care of burial. It cost us $350 for the plot and DH and I can both have our cremains buried there. I think I was told the cost of cremains burial at this time is $300 for each of us, which is paid at burial time. So I'm sure that goes up over the years. DH says he wants to shop around for the memorial marker, there are a couple other reputable places, so that's what we'll do. I have a very good idea what we want, so it's just a matter of pricing, really.
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Bon, I laughed at your mentioning that your husband has been told to take the right measures to keep you going until Nov '14 if necessary! Yes, I get it, and it is funny. I will have to make sure my directive gives the right directions too and let DH know. Hey, hopefully we have many many years ahead of us but none of us know. Certainly, these are not matters I would have attended to with this much attention to detail had I not been faced with stage iv.
It is also interesting that you have gotten several policies. I'm going to look into that as well. Also, the pricing for insurance must differ from state to state and according to age as I live in Ohio and am 54. Still, I'm happy with that coverage.
That's a lovely idea for you and your DH to be buried at Arizona National Cemetary, free is the best bargain, and yet it honors your service to our country and seems a fitting final resting place for both of you. And less than $2k for funeral arraingments is another bargain.
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Re: the headstone. I spoke with a saleswoman at one place about their markers and got some insight into the business. Her salespitch was that not all granite is created equally. Their place offers four grades of granite at different prices. She said that after a number of years of being out in the elements, some granite will retain water in its core and not dry out. That's why, if you go to cemeteries, you'll see some headstones still damp looking while others are dry.
She mentioned that their company double etches the engraved wording on the granite so that it will always be readable. You can also have as much stuff written on it all for one price. But once the stone is in place, it costs an additional $175 to add, for example, spouse's date of death.
She also said that they offer imported granite from China because people are looking for a cheaper alternative, but they don't guarantee the quality. She said it could have a glitch in it that would lead to a crack over the years, ect. DH would never have something made in China placed on our grave and I wouldn't want that either. It did educate me some, I had no idea I was going to encounter the different qualities and prices. Damn, tho, the price of dying is pricey.
Of all things to misplace, I cannot find the sheet she gave me with the information and prices on it, or I'd post them. I'm pretty good at keeping paperwork organized and I can't imagine that I threw the sheet away.....
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I have posted earlier but still want to put ARTFROMASHES.com and LUCIAPOTTERY.COM. just look at lucy's tabs and find her urns biodegrable and regular ceramic keepsake jars. I went with my son and daughter to her studio and selected my biodegradable as my daughter posted of fb. "mom's future home" and they each selected small keepsake jars in the glazes I knew each of them would select. The sealed box resides at the funeral home for when it is needed. Direct cremation in MA costs around 2000.
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I live in an old house with an even older side yard cemetery. (1832) I kept a bit of my mom, dad and brother's ashes. I am going to make a concrete bench, and put the ashes in the mix and put it in my little cemetery. I found the bench mold on eBay. I think I'm going to have my ashes put into the base of my favorite antique, Chinese porcelain lamp. I can sit by the sofa, with DH
It's a beautiful blue and white jar with a dragon chasing the flaming pearl of wisdom, through the clouds. His name is Fred. -
To all just checked and the last time Selenawolf posted was 0ct. 24th --yesterday. Her post that I moved forward was from earlier in this thread. As pages go on worthwhile info gets lost. Selena's post was very valuable. But at the time some people chose to give her a hard time about it. Idiots. I don't think she posted after that, I think if you have time to PM her and tell her what great info she gave she might come back. She has much to give to this thread. She was treated horribly by some. sassy
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Bonnie--cool --listening to blues----hmm. sweet. trying to hold onto the day until the light reminds me that I ought to be more responsible. Would have loved to live in New york at the height of Blues in Harlem..Also, would have love to hear W.C Handy live. Pm'ing you L&H&P's sheila
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Just a little while ago, I found out some info that I want to share with my BC sisters. In the BC SEARCH field I typed the word, cremation, and this Stage IV group was listed as addressing the topic. While i am not at Stage IV, in the spirit of sharing, please accept this info or move it elswhere. It is not my intent to start an independent thread or to intrude. Thank you so much each and everyone. LOL
An eco-freindly alternative process to cremation which produces similar cremains via less energy via a speeded up natural process in similar amount of time and $$ dollars with some surprising recycle advantages is decribed at the following link. I found it helpful to also click on the links at the end of the article as well as typing in the terminolgy for GOOGLE searches.
http://dying.about.com/od/Funeral_Memorial_Planning/a/What-Is-Alkaline-Hydrolysis.htm?nl=1http://dying.about.com/od/Funeral_Memorial_Planning/a/What-Is-Alkaline-Hydrolysis.htm?nl=1
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Bon: Autopsy??? Or ecofriendly alternative to cremation? Internet mix-up!
1-I just tried clicking on the link I provided on my recent post of a link to an eco friendly alternative to cremation but the LINK did NOT work at all. My copy/paste of the link still works on my computer to fully directly display an article on an ecofriendly alternative to cremation. SORRY for such a bungling start.
2-Scientific technical term which can be used for searching at the web site about.com or GOOGLE or other search sites = Alkaline Hydrolysis = can also be searched by typing = resomation = biocremation
A search for the following article is also productive = Comparison of Alkaline Hydrolysis versus Combustion
3-ANY alternative form to traditional burial raises sensitive questions so even though a mix-up somehow happened in my original post, the questions re autopsy which Bon provided are a fine reminder for us to try to be very circumspect when planning ahead about funeral arrangements.
4-Thank you, everyone, for your WELCOMING this information about RESOMATION, which does not NOT not NOT require an autopsy.
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As a pathologist's daughter, I can tell you, there would be no reason for an autopsy. Unless the family wanted one and agreed to pay for it. My dad always found it interesting when a family turned down an autopsy, when the doctor wanted to check something out, because they felt the loved one had been through enough. Then turned right around and had the body embalmed.
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Thank you for your kind notes, ladies. I truly appreciate that I did not offend you all horribly by addressing cemetery/burial issues in the straightforward manner that I did.
I've re-read my earlier post and the only other comment I would make is to investigate the care and maintenance provisions in the cemetery that you have selected. Here in Ontario, as a municipally-run cemetery\ies organization (i.e., "public"), we are governed by the "Cemeteries Act", which has strict provision set out for care and maintenance. For each property sold in one of our cemeteries, a percentage of the fee is re-directed to a care and maintenance trust fund: for land property, it is 40%, for columbarium property (niche), it is 15%. This money is "locked in", and the interest it generates over the years is used for the upkeep of the cemetery, including things like grass cutting, as well as repairing ground damage to lots/graves due to weather or vandalism.
In addition, a portion of the pouring/setting fee costs for foundations-, monuments- and markers is, also, re-directed to a care and maintenance fund. These monies are used to repair monuments damaged by weather, vandalism, or accidents with machinery (unfortunate, but it does happen).
So, ask how the cemetery manages the upkeep of the cemetery and what are the plans to look after the cemetery and it's monuments in future. Are monies set aside at the time of purchase for that or does the cemetery charge an annual fee to all property owners? Will the property owner/heirs have to fund any repairs to the lot/monument if it is damaged in any way?
Hope this helps. -
Wow, I have a lot of reading to do in here.
Wanted to share a good interview about touchy Hospice issues on Fresh Air:
http://www.npr.org/2012/10/09/162570013/when-prolonging-death-seems-worse-than-death
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Please, if anyone hasn't heard of the Frankenstorm that is going to hit the northeast corridor, watch your weather. This is going to be very serious. Alert any that you think may not know. If you are in a flood zone area prepare to evacuate asap. at the direction of your Emergency Management Commanders. You may want to get out of area even if you are not told to evacuate, if so do it soon. You don't want to be trapped on highways the way people were with Katrina b/c they waited too long. Storm at latest viewing is to affect as far west as Ohio, but the brunt will be more coastal and into New Jersey
If evacuating take enough canned food that doesn't need to be cooked and can be eaten from a can. Utensils and CAN OPENER. Water for at least three days. Boots , winter clothing, Underwear for 1-2 weeks and clothing for a week, blankets, important papers, important pictures. Can use laudry baskets to pack stuff into--easy to carry and stack in vehicle, easy to retrieve stuff b/c it's visible through the sides. Take toilet paper. Flashlights and batteries. Tap lights. Garbage bags, Cash and credit cards, insurance info for vehichle and house. Cell phones and chargers. Phone and address book. Notify someone you are evacuating and where you intend to go. Count the kids and animals at every stop.
There likely is allot of activity with cleaning out grocery/hardware stores already for those that are going to "ride" it out. But if you are evacuating pack what you can and get moving, the farther from the storm path the easier it will be to buy stuff.
A piece of property isn't worth your life. This storm is being compared to the Perfect Storm of 1991.
Anyone interested on thoughts re Storm for those riding it out. I've put done some suggestions in a response to granny on Bonfires. Rather than figuring out where I posted what I'm just going to keep adding to that if more thoughts come.--Sorry, used to do disaster stuff---being OCD as usual
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Bon I C&P's what you just wrote to me, to that page. Here's the link.
http://community.breastcancer.org/forum/7/topic/763848?page=120#post_3270801
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My husband's cousin is president of the cemetery association where we will be buried. He and the secretary both explained the money end of it like SelenaWolf does in the above post. There is plenty of money in their funds for perpetual care, they also do great upkeep on whats already there including things like contacting a memorial company to replace a broken vase and taking out overgrown shrubs whose roots could cause upheaval of grave markers. They adopted rules to prevent more shrubs from being planted. They've made improvements such as adding one more road, having both roads blacktopped, and adding a large porch with railing to the side of the lone building at the cemetery with some tasteful landscaping around it. It's not that large of a cemetery, but it's obvious they take great pride in keeping it nice. And keeping the budget in mind.
DH's cousin said he couldn't prove it, but there appears to be money missing at the other cemetery and he thinks someone helped themselves to it a few years back. Many people in town are oblivious to it, but in this small town, its no surprise. They sort of like to bury their head in the sand and not raise a stink about anything. (I didn't move to this place till I was an adult, so I see things from a different perspective.)
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Bon, Louie Armstrong's "What a Wonderful World" is one of my all-time favorite songs. It's just incredble. It's just not one I'd pick for my own funeral. Some songs I've selected are "Day by Day" from Godspell, "Seasons of Love" from Rent, "Love is the Answer" by England Dan and John Ford Coley and "Believe" by Brooks and Dunn.
This one, too: Crystal Blue Persuassion
"Maybe tomorrow, when He looks down,On every green field, And every town
All of His children, And every nation....there'll be peace and good....brotherhood.....
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It surprises me to learn of many of you skipping lots of what I'd consider a tradtional funeral service. I'm not judging in any way. It's just interesting to hear that many people don't want the service, or a burial, only simple basics to take care of you after you pass. Where I live, most people opt for at least one day of viewing followed the next day by a service and burial with a memorial luncheon afterwards. That's the route I'll take, more for my DH and DS's sake, so that they can be comforted by family and friends.
Looking at the general price list for one local funeral home:
direct cremation: $2225
Traditional funeral: includes afternoon and evening viewing , next-day funderal ceremony $4,550. Casket would be extra.
Cremation with afternoon and evening viewing and next-day funeral service, rental casket included $4,950
Crazy, but the cremation services are pricier than the traditional except for the casket. Can cost you lots o money to die.
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Hi ladies, I hope it is OK that I stopped by. My father died several weeks ago, which made me notice this topic. You are talking about many of the issues I am thinking about. My dad had pre-planned and pre-paid his whole funeral/burial etc. He had picked out his casket, the songs he wanted, the scriptures...every detail. That made things so much easier and gratifying for us (knowing he was getting what he wanted), that DH and I plan to sit down and do the same ourselves, as it is a tremendous gift you can give to your loved ones. Many of your tips will be useful for us. A couple helpful things I can think of from his funeral (which may have been covered, I need to go back and read): He kept all his information on file at the funeral home he had worked with. That way, when he died, we just contacted them and they had it all. My mom had a list of her desires, but gave it to my dad, who was too overcome at her death to remember that he had it....luckily I was rummaging through their papers and found it before the arrangements were finalized (although I made some early morning phone calls to change things to match her wishes). Another thing I didn't know was, if the deceased is a veteran and you would like to have military honors at the burial, you need to have a copy of his/her honorable discharge papers on hand. Luckily we did, as the funeral home needed them ASAP (like the same day as the death) for the arrangements to be made in time for the funeral.
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I've got my last days wishes listed at the hospice.
I've chosen not to go down the Liverpool Care Path.
Its meant to give relieve to all pains and signs of suffering.
Nothing to distress the family and to make the passing easy.
However all food and liquids can be with drawn, if a doctor says its in the patiants best interests.
People have been known to live for 3 or more days.
Mercy killing by the back door.
Me, I hope to be awake , not in a lot of pain, and see death face to face.
Harvey
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Selena - we love you valuable info! How lucky we are to have someone so knowledgeable.
I live along the NC coast - just a light rain today. I need to go batten down the hatches. Sure don't need my wrought iron furniture flying through a window. -
Bon night shift varies LOL. Visit Isomnia thread when your up late . I'll get the link and bring it back:)sassy
link to insomnia
http://community.breastcancer.org/forum/102/topic/767259?page=175#idx_5230
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Bon-- we got very little of the storm compared to what is coming, so worried for the NE they are going to get hammered and it will be 3 weeks of hellishness after storm and along recovery.The reason I sent the insomnia thread is it's folks that are up at night in america and sometimes the australians and aucklanders check in. I started the thread when I seriously had insomnia and no one to talk too. Now people talk through the day. Varys often. I know your pattern as you say from PM, but in a moment you just want some crazy silly talk, it's a fun place to go. Sometimes I go and wait for someone to come and just post until they realize it's active. Or just talk to my self.
L&H&P's sassy -
Selena--glad you came back, your thoughts are a true addition to this thread sassy/sheila/sas
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Divine--missed you on Pinktober----it didn't fade b/c you came, we ran out of steam.
sassy:) -
Ruthbru, you are such a classy lady, always thoughtful, sensitive and with great insight, so I welcome your comments on this thread. My condolensces on the loss of your dad.
sas, thanks for thinking of me.
Bon, I much appreciate your life insurance links, and have already applied for two of them. About your final wishes burial at Arizona Nat'l Cemetery, it sounds very honorable and right. The pricing difference from Ohio and Arizona for these services is wack. I do get pissed that the two funeral homes in our little town are so pricey. And it seems like more people are going the cremation route so they just up the price for that so they're still making a hefty profit. And the first thing they ask you is 'do you have life insurance' so they feel no guilt in taking your money.
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A few other songs for the funeral that I'm considering are "He Ain't Heavy, He's My Brother", "El Shaddai" by Amy Grant, the theme from Chariots of Fire (an instrumental) that is oh so beautiful, "Put Your Hand in the Hand" by Ocean, and "If I Could Reach Your Heart" from the Cirque de Soleil 'Ka' soundtrack. I have them on a playlist on my itunes and sort of look at it from time to time to see how appropriate/inappropriate any of them would be.
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Thank you Divine. With that endorsement
, I will also say that, for any veteran, I would strongly encourage you to add the military tribute to whatever kind of service you choose. Not only is it something you richly deserve, and it is such a beautiful and meaningful ceremony for your family, but it also reminds everyone else there, young and old, of the sacrifices made by servicemen and women, and their families, throughout the years. So not only is it a final tribute to you, it is a final lesson in patriotism from you as well. -
Oh my, Ruth, well said. My Dad had the military tribute and it was very moving.
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Just remember, you don't want the song to be popular on the radio. It would be awful for your spouse to hear it on the car radio all of the time.
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This is such a helpful thread. I'm so glad Ma started it. Thank you Bon for all the wonderful, detailed info you've added. You did a great job. I've copied your list of documents and important info and will begin putting my info together in a file.
Moderators, I think it would extremely helpful to start a Forum Topic that would contain death and dying info and include stickied sub-topics for insurance, Bon's document list, comparisons of funeral/cremation types and cost, etc. If you think "Death and Dying Issues" is a little too much of a shock for the title, you could soften it by naming it "End of Life Issues", "Life Planning", or something similar. If you would start the topic, I'm sure the rest of us could take it from there, add the sub-topics and suggest which ones should be sticky. There is so much good and helpful info in this thread...things many of us wouldn't think about running a search for. It would be such a shame if it got lost from low visibility.
Jan
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Bon - thanks for all the great info. When I was shopping cremation prices here in NC. One place was charging $1800 in administration cost. I just want them to pick me up, get the certificate signed, take and pick me up from crematorium.
$2,700. No way! Found a place who will do it all for $1595. -
I wanted to chime in on songs. I decided a long time ago that one song I would like to have played at my memorial is "Light One Candle" by Peter, Paul and Mary. Although the song is based on Jewish beliefs I feel the message is universal.
I would also like to have "Leap of Faith" played but I'm afraid it would do too much to my husband. When we first started dating he had a pretty solid brick wall around his emotions after his last divorce. One weekend I gave him a cassette with this song on it and asked him to listen to it. Then I told him I would wait for his call -- the next step would be his. It only took a day before he called me again and our relationship took a stronger turn. The song put together the words that I was struggling to tell him. -
I love Peter, Paul and Mary !!! I used one of their songs for my wedding. Chemo brain won't let me remember the name.
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When my best friend died of breast cancer her sons played the 2nd movement of the Bach concerto in D for two violins (Bach Double). I wondered at the time if it wasn't a lot to ask of them, but they volunteered that it helped them to have an active role in the Memorial Service. Only one of my sons plays violin, so if he's up to it I'd pick the slow movement from Bach's a-minor concerto.
http://www.youtube.com/watch?v=Jbys-IPUqQM Then I'd like my church choir to sing Brahm's "How Lovely is Thy Dwelling Place." 
http://www.youtube.com/watch?v=I4-_DiaF-RA (slightly different translation, but a "lovely" rendition for the Queen Mother's funeral.) I'm not religious, but I have to feel that anyone hearing these will be uplifted. -
Hurricane Sandy has made a mess of things outdoors, so I am spending my day, erasing myself from the house. Cleaning out closets, drawers, etc.
Putting all my favorite things in my grandmother's cedar chest for my boys, along with notes of what they are.
It's hard for me to throw away little bits and bobs of my past, but I know it will be even harder on my DH.
I start chemo on Wed. So I know my strength will be shot after that.
Back to purging... -
OBXK---may sound wierd, but could you make Christmas ornaments out of those bits and pieces of your life?. Different end of age spectrum, I put Ds rattles, hand toys, mobiles etc on the tree 27 years ago and they are still there. Yes I get teared up when I see them, but still love that they are there.
Bon you have been busy, was that storm surge LOL. Such good info
--went to moffitt cancer center--brain Okay. -
Divine, you mentioned that a viewing and service would be comforting for your family. I definitely want a private burial, then a memorial service at my church, and a luncheon for family and out of town guests. Most people here have a visitation the night before the service, where people come and give condolences to the family. I am considering asking my husband not to do that, mainly because of my children's ages. They are 22, 20 and 15. I think it would be hard on them to stand for a couple of hours and greet people. My husband probably wouldn't mind, but I'm thinking of my kids. I can't ask them about it because they don't want to think about that time. Maybe I will just let my husband decide about that when the time comes, but will remind him to be sensitive to what they want to do.
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hope, I completely understand. My son is almost 20 and we have a great relationship, but to discuss final funeral arrangements with him would be very difficult. DH and I were able to have a non-emotional conversation with him about cemeteries, and son raised good points: if he kept our cremains in an urn, what would HIS kids do with them when son was gone. DH and I didn't want cremains scattered, so was nice to find out burial of cremains in a local cemetery was a good option.
I certainly would not mind if DH and DS decided against a 'viewing' if they couldn't handle it. Some people in our town just have a 'memorial' at the funeral home with photos of the loved one who passed, and everyone stops to give condolensces.
So I feel like you, it may be best to let them decide at the time what is right.
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Sas - great idea!
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My husband died in December, 2005. Both of us wanted cremation for ourselves. Maybe you haven't considered this and I also know geographics can play into the $ figure.. I found that going to a crematory that was inner city was fewer $$. He did not want a viewing or memorial service and it was less than $600.00. He was awaiting a heart transplant while I was doing chemo. Time ran out for him.
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holdontohope:
My father was killed in Vietnam when I was 9 and the oldest of 6 children. Me and the next oldest child (a brother) really enjoyed the viewing. The younger kids don't really remember it. It was many years ago and the tradition in that town was to have the viewing in the house if it could accomodate it. It was held at my grandparents house. We didn't do a receiving line. I met many people who I had heard stories about and heard a bunch of new ones. Everyone brought a covered dish. Leftovers and new covered dishes were brought to the post-funeral get-together. If it got to be too much, we just walked away for awhile. And I thought that the viewing of the body in the casket really brought home that the body is just a vessel (and that he was REALLY DEAD, which is important). Altogether a positive experience for me. But some people may feel differently. I'm sure you know your family best.
Edited for spelling and content.
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OBXK----:) sassy
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33skidoo, you bring up something that I'd forgotten about. There've been times I've lost someone close and truly needed to see the deceased body as my mind didn't want to believe it was really true that they were gone.
I was almost 40 when my parents passed away within 9 months of each other, and I felt the showings and funerals for both were beautiful, taylored for their own personalities. Mom died in spring and I well remember the viewing, what clothes she wore, the lovely top spray of spring flowers, the earrings she had on. She'd asked for 7 roses to be in the casket with her, one for each of her children. My dad died in winter and he loved paisley prints, so he wore a paisley tie with his dark suit, a hat and golf club was in the casket and a beautiful top spray of all red roses. It was actually comforting.
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Thank you all for the helpful suggestions. I am trying to be as frugal as possible with this whole funeral thing, but want to be sensitive to my family and their needs. I think it would be more comfortable for my kids if they did not have to stand in a line and greet people, but could just mingle.
It is comforting to have this place to talk about these sensitive issues.
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Unfortunately, a viewing is usually an expensive option as they insist on embalming, etc. But I have been told that close family can view the body informally at the funeral home without the added expense. I would check before finalizing arrangements.
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Announcement for novena to OUR LADY of the MIRACULOUS MEDAL. Start Date: Wed NOV 14th-end date- Thurs. Nov 22nd which is Thanksgiving.
The novena is constructed already on the Catholic Archives page. As in the past all are welcome. All that were in the last novena to St perigrine will be moved forward. If you don't want to included in this novena ,please, PM me and I will remove your name.
The novena will also be added to the world wide Rosary thread.
The novena will only be on the archives thread, as it was too confusing updating both threads as people requested additions. Everyone will be notified by PM. If you know of someone that would like to be included , have them PM their intention Sheila
community.breastcancer.org/top...
Link to archives thread
Link to Our Lady of the Miraculous Medal
www.cammonline.org/index.php?/...
Hope nobody reports me for spamming, I only put this on the threads I'm active on.
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Bon glad you also liked the christmas ornament thing. It started with my DS's rattles, teething rings and mobiles, they are there 27 years later. I leave the tree up all year. TheDH and DS objected to the decorating. MY solution I designed a cover. What it looks like is a Victorian ballroom dress. Room is eclectic victorian. Dress just needs to be opened in back and rotated around--viola dressed tree. But what's lost now is many of the stories.
But when we were decorating it, my Ds said one year "Everything you put on here has a story" I said "Sweetie you finally understand".
Hold on to hope---Competitive pricing. The suburbs or more affluent neighborhoods think people will pay what they charge. Where I live the competition is fierce. $695 to $895 for three and then one out in left field at 2600.00 +. But that will change as one at $695 is putting everyone else's prices on the telly. sheila
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Bon babe this hurts to tell you , the second time I turned on the lights after Greg died, none of the lights came on. My Ds didn't get the significance. I haven't removed the Dress or rotated it since. I know those words will make you sad , I'm so sorry. For me it was as if the tree went into mourning. Likely just a fuse, but i'm not mechanical. What was sweet this year is my Ds said we would try to figure it out. He finally got it, just as a young one stated earlier. He missed the tree last year. It was there, but it was covered.The year before the tree was already uncovered when the lights went out. in 2011 I wouldn't uncover the tree.
It's a 6ft tree--the dress is austrian pull---turly ballroom style---friends suggested patent---but patents are so bloody expensive and you have to chase pretenders. I would love to share a pic , but totally ignorant about doing.
But think of all the old movies-----and this dress would be a hit---every time I look at it I smile---it's beautiful and it hides something beautiful beneath it.
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To make the storey complete as a widow---I was talking with a friend in california---he decided i wasn't right.he called police to check on me. They're at my door. I let them in----well yes, I had too much too drink. but committed no crime, except grieving. Convinced the officers to help rotate the dress. We all did. The tree lite up beautifully. I asked each officer if I could touch them. We shared a prayer. The tree was beautiful that night. I'm guessing those officers still talk of that night that we joined arms and prayed. ------They left--- and the friends card got torn up.
The next time I turned on the switch the whole tree was litghtless.---significance/happenstance/ontowardness who knows, maybe it was there time to burn out.---strange time
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New tangent.
I have nearly finished hand writing recipe books for my 2 teenagers. I love to cook and they love my food, so passing these special family recipes on to them is important to me.
I have been so focussed on the children that i have only just realised that it will be my dear husband who will be most lost. It is likely that both of our children will be leaving home just when I do. He began with a therapist yesterday. He is my new priority. My health is being well managed by a team of experts, and my kids are on their way fine. It's time for me to focus on my partner. We will enjoy what time we have together and I will do whatever I can to prepare him for beyond. This will make me happy.
Aussie Angela -
Angela, sorry for all that has happened. The cookbooks sound lovely, But will dear husband have your book? Suggest you make him a book too. He then can choose which one to use. I find it a bit difficult when I read one of my Dh's b/c it's in his handwriting.
Who handles the finances? Back some pages are directions for the survivor to complete when needed. Alist is helpful b/c thinking is clouded at that time. Namaste sheila
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Great thought. Thank you
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Bon & SasSchatzi
I was reading the thread trying to catch up and found myself lost in the "story" of the tree. Just wanted to tell you that I agree with Bon. A wonderful story of life.
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Oh - LoriKnous--'-Lost in the storey of the tree'-Dear Lori wnich part, there are so many parts--the last is to be revealved. I hope the DS does really understands the significance of the tree. I do. It's a lifetime of gathering. It's a life time of sharing. It's a lifetime of memeories.
I had a second cousin come for the holiday, he was blown away by the meomories on the tree. His mom did a whatever tree, but not anything that had sentimental stuff. He was ---------changed-----from the belief that the tree had to be something new each year------to something that had history. He was changed. It was very cool when we had the talk. Must leave him something . so he remembers this.
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I keep going up to my husband, and telling him things like - when the kids grow up, and they are talking about some slight or injustice from their childhood, hear them - apologize and don't get defensive, you are the best father I have ever met and we are doing our best. And... Don't brag about one kid's children to the other (we hated that) brag to your friends.
So.... I decided to keep a journal of my mommy wisdom to leave for him. My boys are 13/17. -
You all are TERRIFIC!
And, here's a special HOORAY for the CANADIANS who sure do have their act together re hurricane advice as well as cemtaries and many aspects of health care.
CREMATION - BTW, with regard to cremation, including expenses, I think every USA state has something comparable to the following link. I have arranged to donate my body to science via this route. As far as my ashes, I want them scattered to the wind as a sign of greater in-touchedness with everything that is.
http://www.agaillinois.org/donate.htm
AUTOPSIES - With regards to autopsies, even though I had already arranged for donating my body to science via the above, I found the section in the book, Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medicaly, Legally, and Emotionally for the End of Life, very helpful. In particular, the paragraph on page 251, which begins with the sentence:
Too often, both physicians and families assume incorrectly that, since patients have often been examined by such advanced diagnostic tools as CT scans, MRis and PET scans, nothing more of value can be learned from an autopsy.
PALLIATIVE SEDATION - If you type these words in the BC search area, you will find a dedicated thread. I did so in 2011 and found the thread helpful.
MODERATORS >>> I think the suggestion (jcb51 (10/29/2012) for the moderators to start a separate thread about funeral arrangements/alternatives/issues is probably a good idea. I am not at stage IV and while I deeply appreciate this thread and your sincere and compassionate interaction, I feel a bit intrusive making comments, here.
LOL
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Trickling, please don't feel intrusive. We are discussing matters that all will deal with at some point in their life. Many of us, no matter the stage, have experienced the loss of a close loved one and had to deal with the emotional, physical and financial outcome. I welcome anyone's thoughtful insight.
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Trickling, please this thread is the place to cover all death related material and dying. If the thread you are suggesting, were made. it actually would hurt this thread b/c then it would be incomplete. The other thread would be incomplete b/c it did have the stuff here. MA111's wisdom was in recognizing that one place kept it simpler.
We talk of one thing for a few pages then the subject changes.- idea, let me see if it will work. I was thinking of an index, It could be made now. Might help new folks wandering pages to fine things, but it's only 21 pages. might need it as time goes on.
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Bon I look at the front end and there's no way to do an index., but it could just be started and juggled around. I'm working on the Novena until next week end. But could play with it after that. The trouble unless you could see a another way only one person could do it. But there's time mull it over. sassy L&H&'s sweeties
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Hi Ladies, I havent been in here in awhile. I was in the hospital and came very close to dying. Actually for awhile I was praying to die. It really made me think more serious about the whole matter. I have been dodging the bullet for years and each time I have a set back I wonder if its my last. I'm hoping to be around for some more years but we never know. It really scared me this time. I want to make the holidays special this year somehow for my family. I'm not sure what but I want it to stand out in the minds of my kids and grandkids and hubby. Christmas is my favorite holiday. Not because of gifts...because we get time with family and we are all together at the same time. I luv the decorations, music and food. I want to spend my life making good memories. Hugs and luvs, Mazy
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TheDivineMrsM, Bon, and others.
PARTICIPATION - Thanks for taking time to compassionately clarify participation parameters.
INDEX - What a great idea! More power to anyone willing and able to create and maintain an index. However, I think it might take a lot more work than what meets the eye. It occurred to me that if it were set up so that we could check off labels or have a resource list to be sure to include a couple of specific index words in our comments, it would assist the person indexing. On the other hand, aids toward indexing would probably unintentionally take away the informality of "letting it all hang out" in the sunshine of this site.
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Trickling your probably right. It's not like the same topic is on the same page. May be an idea will pop
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((((Mazy)))) Sending love and I hope you are feeling better. Wishing you happy, joyous holidays with your family. I know your presence alone will make these holidays very special.
Rose. -
Reminder Announcement for novena to OUR LADY of the MIRACULOUS MEDAL. Start Date: Wed NOV 14th-end date- Thurs. Nov 22nd which is Thanksgiving.
The novena is constructed already on the Catholic Archives page link below. As in the past all are welcome. All that were in the last novena to St perigrine will be moved forward. If you don't want to included in this novena ,please, PM me and I will remove your name.
The novena will also be added to the world wide Rosary thread.
The novena will only be on the archives thread, as it was too confusing updating both threads as people requested additions. Everyone will be notified by PM. If you know of someone that would like to be included , have them PM their intention
New info:A specific intention has been added for those hurt by Sandy. But if you would like to name someone in particular ,please PM.
New request: If anyone lives near the shrine in Philly,Penn. and would be willing to take the list that would be a blessing. PM
community.breastcancer.org/top...
Link to archives thread
Link to Our Lady of the Miraculous Medal
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Mazy - sorry you had such a scare. I hope your holiday is all you want it to be. I look forward to hearing about it!
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http://www.thefuneralpoem.com/
I found some good poems here. -
This is the poem I want on my funeral program.
Death is Only an Horizon
O God, who holdest all souls in life;
and callest them unto thee as seemeth best:
we give them back, dear God, to thee who gavest them to us.
But as thou didst not lose them in the giving,
so we do not lose them by their return.
For not as the world giveth, givest thou,
O Lord of souls: that which thou givest thou takest away:
for life is eternal, and love is immortal,
and death is only the horizon,
and the horizon is nothing save the limit of our sight.
Rossiter W. Raymond ( 1840 - 1918 ) -
"... and the horizon is nothing save the limit of our sight..."
Beautiful poem, Ruthbru! And I love that this thread continues... Ma is smiling. -
Ruth Love the poem
Steelrose- Ma would certainly be smiling.
Bon your BAG, would also, solve many disiater problems. Grab the bag at evacuation. Wouldn't have to look for anything else.
Mazy hope all is improving---I second the thought for happy blessful holidays. Namaste sheila
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Bon what a nice thing to say, thank you. It's the antithesis of dour.(sic?)Yes we can have humor. All studies show that improves us in so many ways. Even longevity. AND we are all for longevity.Bon tell me a story about ReneePals a synopsis of what you knew of her. Paint a picture in words of what she meant to you, with the anecdotes that made you laugh. It would be such a sweet tribute to her memory.
I did have a "when I go to the hospital" bag for Greg and I. It made bugging out in the middle of the night so much easier and faster. But does bring back a bad memory, the bag wasn't prepared yet and I didn't have the POA and living will out of the lock box. Trying to get greg moving. At some point, I got a spider bite. Great, out comes the spy glass, I could see two droplets of venom. Erghhh. Slapped on some alcohol with a cosmetic sponge & wrapped with some gauze after soap and water wash.. Off we go, he gets an Er room and so do I . Couldn't believe how fast the breakdown occurred. Very ugly within a short time. But got it healed up without sx-unusual for something that caused tissue breakdown that fast. Healed it with Bag Balm. Ortho doc was amazed. Lesson turn the lights on and look at what I was reaching into. Damn little bugger. Diverging.
This has been affectively a no sleep night. Ruins the cleaning plan for tomorrow--good excuse anyway, but getting down too the wire for Thanksgiving. Ahhh another Thanksgiving. Let's enjoy it fully!L&H&P's sassy
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Hi Bonnie. Glad your are back.
Mazy - your story made my mouth hang open like a cod fish.
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For the comments on "viewings" etc, In England, it is quite normal for the deceased to remain at a funeral home for the days before the funeral and so family and friends can just visit there and sit with their loved ones for as long as they need. The staff are usually really understanding and will open up out of hours with prior warning for those who can't make it during opening hours. I'm not sure if you have this in USA? This way, there is no pressure on those who feel a viewing is not for them but who feel others expect them to attend. Everyone who attends/or does not, does so according to their own needs. Sometimes I think this takes a lot of pressure off those members of the family who simply can't face it - also for those who feel more comfortable visiting on their own or with partner etc - not everyone can face sharing their feelings in public.
Sue -
That sounds so respectful of the dead and those who grieve them, Sue. That doesn't happen here, at least in my area. You pay for those viewing times, the more you have, the more you pay. You pay more for the weekends because it's overtime for the employees.
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Bonnie,
"... Love me or hate me or just plain ignore me, we all have a place to be..." Yes we do! What a lovely post and I'm happy you're back!
xo
Rose. -
Bonnie, Thank you for writing the whole history. There are some people that get off on making other people miserable. Why? I personally think they are pathologic. What other term can adequately describe the meaness.
But your feelings about me in asking you to come back, you have mentioned them several times. I knew there was more to the story b/c your small and large thanks, told me that. So, I am glad it all came together. AND that everyone is accepting of each others thoughts. If someone isn't, just refer them to the header and quote. MA kept it simple "IF YOU CAN'T HANDLE IT GO TO A DIFFERENT POST" clear, consise, delivers the intended message.
Bonnie, you are doing a great job and have so much to offer, don't let any bugger get you down. But remember words can get us into trouble or keep us out of trouble. So when what you really want to say "is take a flying leap you twit". Use Ma's statement. LOL
If I'm not back before thurs. Everyone have a beautiful Thanksgiving. Another year of holding close to those that we care about L&H&P's Namaste sheila
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ruthrub- I transferred the prayer to the prayer archives, it will be easy to find in the future just put it in your favs, I brought the link hear, so it's easy to travel too. It's at the bottom of the page below the novena
http://community.breastcancer.org/forum/38/topic/760274?page=5#post_3303594
L&H&P's sheila
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Thank Sheila, I think it is beautiful and meaningful enough to share around (I read it at my dad's prayer service also).
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There is a book by Elizabeth Kubler Ross, one of several she wrote on the subject, "On death and dying" Which would probably be beneficial for patients and family / loved ones.
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In the mid 90s, my parents passed away within 9 months of each other. It was devastating to me, even tho I was almost 40 at the time. I remember reading a book or two by Elizabeth Kuble Ross that explained those five stages of grief. Her books were okay, but I read another book called "Life After Loss" that helped me the most. Several points it made:
Give yourself time to grieve...three years to go through much of the emotional ups and downs. Of course, you continue with your life, but you allow for the grief.
Also, everyone goes through the stages of grief their own way and in their own time.
The better relationship you have with a loved one who passes, the more effective your grieving will be. (I think that's because you don't have as many regrets).
Grief is an expression of love you have for the one who has passed. I take that to mean that you are honoring them with your grief.
Another thing I knew, without reading the book, was that my relationship with my parents would continue. Sounds odd, but it's true. Now here's the funny part: years later, I read the book "Tuesdays With Morey" and the author said basically the same thing. And I thought to myself, damn, I shoulda wrote a book about that before him and "I" could have had a best seller!
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Hello everyone, Sunday nite after the long turkey weekend. Great time, Great visits.
Kiethw EKR concepts were very significant when she first published, she definitely set the stage for all the exploration of the concepts after. Did you know that from her research on the stages of grief, she became interested in Near death experiences. When she published her first article or book on the subject it was torn apart by many. But she also set the stage for research in this area too.
Divine thanks for the thoughts. Particularly, on the length of grieving. I wondered if mine was unusual, therefore, abnormal. Glad to find out it's not. It's hard enough going through these things without thinking your abnormal along with it, if that makes sense?
There was a movie about "Tuesdays with Morey". Whomever were the leads, I know it was critically very well received, but never had a chance to see it. Reading has been difficult since the surgery year--Oh well----Will see if I can get the movie:)
Bon
, Ruth-your welcome L&H&P's to all sheila
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Bon, I think a lot people are confused about the time it takes to grieve. I remember a friend who suffered the loss of a loved one. Two weeks later, her cruel husband, tired of her sadness, said "Aren't you over that yet?" There are many people like that who just don't get it. I know when I read the book, it allowed me to feel like I didn't have to rush to the next phase of my life. That I would gradually grow into it, but that I needed a reasonable amount of time to process my loss and give myself time to heal. I was easier on myself.
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In this conversation about the grieving process i am reminded of these words from our own Zoh. I copied this from one of her posts to another member. I read it from time to time and have passed the message along a couple of times, always giving Zoh the credit. She had a way with words!!
From Zoh:
There is no way for you to escape the pain you feel now. Much as you might want it to at times, it wont kill you. You will laugh again with great joy, but no time soon. You will eat and sleep like a normal person again, but probably not now. In all of your desperate agony - know that you are safe. You HAD to be in her life at the end time. You can see that - Yes?
For now - breathe in and breathe out. Eat sometimes - shower sometimes - stay where you feel most comforted. Don't push your recovery. How we live through death and grief is a Mystery. You don't have to understand. You don't have to be good at it. You were there for her. You loved her and she knew it and that made her special and safe in a way that nothing else ever could as cancer came and she went. I hope that she was able to receive the gift of your presence, commitment and love during her illness with the same grace that you offered it. Be easy darling friend. We are holding you so close in our hearts. -
whoa Glenna, that is powerful. thanks for printing it here
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Zoh's golden thread continues to touch us.
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@ Divine and Scuttlers, I cried when I first read zoh's words and I still cry today when I read them. It is zoh's unselfishness, reaching out to someone else in pain when she was suffering so herself, that made her so special.
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Glenna--Hmm wow. Thanks for bringing it back to us, sassy
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We get the daily local newspaper, and reading the obituaries is something we've always done. Usually they give you the basics: when the person passed, who their parents were as well as spouse and children, brothers, sisters. They'll mention where the person may have worked, if they served in the Armed Forces, and then give you the funeral arrangements.
What do you think of those 'flowery' obituaries? Every once in awhile, some dearly departed soul's obit will include a long extended description of their life. For example, a recent one told of a 70 year old woman's passing, then gave great detail on how she got her college degree, began her career at such and such a place, got married to 'the love of her life'...yes, that's how it was worded...started a family, listed the organizations she and her hubby volunteered for, how they loved their social life. It discussed her love of travel and favorite places to visit, and then told about several of her hobbies.
The whole thing took up two columns in the paper. I don't care for these kinds of obits. For some reason, I find them a little weird. Maybe because most of them are sort of matter-of-fact and that's what I'm used to.
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In our newspapers the standard ones are free, the flowery ones you pay big money for. I know this because it was really important to my brother to have the whole novelette for both of my parents (he is a writer, so maybe that explains it). It meant a lot to him, and he took care of it, so I didn't say anything, but if you have flowery family members, and don't want that sort of thing, you (I) should add that wish in the instructions, "Just the facts."
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ruth, I can certainly understand your brother wanting to detail his parents' lives as he was a writer. I know some people apparently like those extended obituaries. I don't want to sound as tho I'm judging them, it's just not my preference.
I think to have just a regular obit printed in our local newspaper costs...$150!!!!!!! I keep realizing dying in big business!
There was another obituary some time back that described the woman's grade school years, how she gave her life to the Lord at a young age, went on the explain all the missionary work she did, the wonderful children she taught, ect., ect., ect.
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In my pre-planning meeting with the funeral home, part of the questionnaire was my choices for my obit. I want it simple. Name (with maiden and marriages), date of birth and where, date of death and where, and what killed me. (i.e. Died from Inflammatory Breast Cancer after a 25 year struggle.) LOL, just had to put in the 25 years here.
It is expensive to put in the long obits. I guess they would be interesting to decendents decades done the road when they are researching ancestry. What bothers me is when a "younger" person dies, a long obit is written, and it says "died of natural causes at XYZ hospital or at home". Yeah, right. Natural causes my ass.
I also do not like the little "brochures" they give out at the funeral home. What on earth are we supposed to do with them after the funeral? Keep a scrapbook? They are also very expensive.
My tombstone will have the same wording. Name (with maiden and marriages), date of birth and where, date of death and where, and what killed me. -
Some people write their own obits, others leave it up to family. I guess obits are a bit like fashion. Everyone has their own style. I also read the obits daily. A slightly weird habit that I have passed on to my younger dd. My only request has been to use a recent photo. No photos of me in my 20's!
Caryn -
Hope I am not out of place here.
I was caretaker for my father: first a year of fighting esophogeal cancer (chemo/radiation and a million doctor visits and treatments) - then his caretaker in Hospice after he had a seizure and they found a stage 4 brain tumor.
I was honored to help him say his goodbyes and I participated fulling in his last living and his leaving. My sister and I shared the responsibility of his funeral/life celebration -- and then helping my mother cope with her new widow-hood and financial changes after 61 years of marriage to the best man I had ever known.
In May I was diagnosed with my own cancer (BC - had a dbl mastectomy and immediate recon Nov 6).
I am realizing now how my experience with Dad's cancer and death was an incredible blessing -- I learned so much -- and wanted to share a couple of ideas with you wonderful women who are facing Stage 4.
It wasn't easy or convienent to be a caretaker for over a year. But it was a phenomenal opportuinty to love my father, honor my parents, experience life with an intensity that no one who hasn't lived with death can comprehend. For those of you who may fear you are over-taxing your loved ones... please know that you are also providing them with a wonderful blessing, a vital experience -- and helping them prepare for what lies ahead after you are gone.
Every single one of us will die. No one escapes it.
Hospice was a Godsend. Dad's Hospice was in Kansas City, but they are everywhere -- and for anyone who may not have reasearched yet -- Hospice is FREE and provides incredible and compassionate care in an extremely supportive (non-hospital-like) setting. Dad's was like a very comfortable upscale hotel -- we were there a month, with the best of care - morphine as needed, and a lovely room which included a sleeping couch and comfortable fold-out cot for family. Meals and a million cookies/cupcakes were available for the families 24/7, as well as grief therapists and clergy.
My Dad taught Boy Scouts for over 50 years. Every day we spent in the (very nice) garden at Hospice, sitting with nature. When it seemed Death was imminent -- one of the nurses suggested they could roll Dad's bed outside into the garden, so he could die surrounded by natural beauty. It was perfect -- for 4 days and 3 nights, Dad and I camped in the garden and never came back inside. We watched the leaves turn red and yellow. We watched the contellations pass over, and talked by the light of the moon. We shared the sun rises and sun sets. He died under the stars... and I will forever be thankful for our last shared experience -- I likened it to his base camp, supported by family and friends, while he waited to make his final ascent.
Another (potentially helpful) thing I would like to share is about the practicality of what happens after death. I see many of you are making practical preparations, so perhaps a few words from someone who did this last year would be helpful. We chose cremation, because it allowed us more time to prepare the service (we wrote the service ourselves) and a breather-space for Mom to adjust before having to see all their friends at the funeral. Cremation allowed us to wait 2 weeks to have the service. It also was incredibly cheaper - we saved thousands over a casket/etc -- and provided our own urn (I was a potter for years, and so we used my Dad's favorite cookie jar, which I had made).
We also created a 3-sided poster board in Hospice, while Dad was still with us... and covered it with photos of Dad with family and friends. It was a wonderful opportunity to reminice about good times we all shared, and marvel at how young and beautiful we all (and especially my Dad) once were... pre-cancer, pre-old-age. We then used that at the funeral service, and my mother loves looking at it still.
Lastly, I would like to share how fortunate I feel to have had deep conversations about Death and the Afterlife with my Dad during that last month. Even though we were very very close, we had never discussed those things. And I would like to reassure you that (at least for me) what I thought would be a tragic and debilitating loss -- was instead a huge opening of Spirit and Love.
I now see my father in every stunning mountain vista. I see him in every glorious sunset and sunrise. And more than that -- I feel his presence, every time I think of him -- which is often. There are no boundaries now. In my perception of the afterlife -- he can be anywhere at anytime. He is here. He is everywhere. I feel him here as I write this now... and it feels good.
Helping Dad through his cancer and death changed me forever and continues to bring me gratitude and a much-deeper appreciation for this beautiful life here on earth. Helping him prepared me for my own BC experience -- because from the first diagnosis, I KNEW that just as there was beauty and epiphany in my sharing of Dad's death -- my own cancer experience will also bring me unknown blessings. Already it has caused me to let down my vain facade, and exposed me as fully human - both frail and strong -- to my lover. It has allowed him to show me the incredible kind of man he is -- and I know we are experiencing a MUCH deeper connection because of the cancer now in our life.
Lastly -- I would like to tell you about a conversation Dad and I had about a week before he died.
I was (at the time) 56 years old. My entire life I have had a pretty miserable track record with men.
I jokingly told Dad that once he was in heaven -- if he found himself with some spare time... I would be very receptive to his 'meddling' -- Could he help send me a great man?
He chuckled and told me he would.
I was corresponding with several men through E-Harmony at the time -- via my laptop every night as I lay in Dad's room at Hospice. I often couldn't sleep, because Dad would awake with a start - disoriented, attempting to leap out of bed to "go clean the garage" -- but he was too weak to stand -- so it was important that I be ready to reassure him and keep him in bed. Anyway, after that conversation with Dad -- one wonderful man on E-Harmony began to quickly emerge as the total 'keeper'. He was a wildlife biologist, who lives on an incredibly beautiful ranch in the mountains. My father (the old Boy Scout) would have loved this place. He would have loved the conversations about elk, deer, land management. He would have loved this kind, gentle angel of a man with whom I now live -- and it comforts me to see Dad's hand in sending him to me. No one could have done a better job, and no one but Dad could have known how perfectly we would connect.
I urge you to consider having these sorts of conversations with your own loved ones. Whether you can follow through from the other side or not -- it will bring your families MUCH joy to see your "meddling' in their happiness, even after you are gone. And who knows -- maybe you can actually pull some strings.
We are all made of energy. The first law of thermodynamics is that energy can't be created or destroyed -- it can only change form and move from place to place.
So it must be with life energy, too. Somehow -- our energy goes on. We simply change form, and move to another place.
Love and Light to you all -- You may not know it -- but you are a gift -- and you are unknowingly bestowing blessings to all around you.
Linda
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I like the detailed obituaries. And it serves as a piece of recorded history for future genealogy buffs.
I always imagine, they are also the people who send out Christmas letters -
Linda,
Thankyou for telling us of your experience with your father with hospice. It seems he had the best of care. I've read a lot of books letting us know that living on earth is only a temporary existence. I wish everyone would have the same experience when it came their time to go.
Terri
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Yes, Linda, I appreciated your taking the time to post of your Dad's passing, the experience you had.
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Thank you Linda. You've made it a little easier to accept, what my family might have to deal with.
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Bedside care for the dying
The following are more loving care suggestions (continued from May's newsletter):
·Use nice smelling creams, oils and lotions for generous foot/leg and hand/arm massages.
As a person nears imminent death, many people decide not to change positions so frequently. But there is another reason (besides skin protection) to change positions regularly—to help with the noisy congestion that can accumulate in the back of the throat. Changing positions will help with drainage.
Have a cool mist humidifier to increase the humidity in the room. It will help with the dryness of their skin, mouth, eyes, and nose.
Don’t ask questions of the dying. Tell stories. Encourage the family to tell them how their day was, memories, etc.(They can’t respond and can get agitated trying to answer questions)
Check their skin. Make sure that their skin is not irritated by oxygen tubing: check nose, cheeks, ears and jaw line. You can pad the tubing to prevent skin irritation. Also make sure ears are laying flat against their head on the side where the head is laying against the pillow. Make sure their skin is not bunched up or being stretched on the side they are laying on along the rest of their body.
Have soft lighting in the room with the person. Use candles or if you are in the hospital or somewhere where candles aren’t allowed or wanted, get the artificial ones.
What are their favorite sounds? Music? Have their familiar sounds present. Harp music has been shown to be therapeutic with the dying. See if there is an organization in your city that will come play music.
Put some of their favorite things in eye view of where they can see it if they should open their eyes (pictures, memorabilia).
Most people’s feet are cold, have warm socks on their feet. Have their favorite blanket on them.
Get a book of visualizations and/or meditations and read to them. Or create them yourself personal to the dying person. Consider having some beautiful music playing in the background while you do.
Sit at the bedside with the dying, hold their hand if it’s soothing for them, with intention of a peaceful passing, prayers for their soul and reassurance. Explain to the family about this. Encourage them to do it.
Take dirty briefs/pads to the outside trash immediately. Launder dirty sheets immediately to not have smells trapped in the room/house.
What are their favorite smells? Have a pot pourri burner or essential oil burner in the room to maintain beautiful aromas.
“Carve your name on hearts, not tombstones. A legacy is etched into the minds of others and the stories they share about you.”
~ Shannon L. Alder
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I like these suggestions. I think I'll print them out for my family. K -
Printing these. May add a few of my own, to make it more specific. Thanks.
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My mom was a great, great reader. When she was dying (and seemingly unconsious), I grabbed the book she had been reading from her house, brought it to the hospital and read all day and all night without stopping until we got to the last page. I knew she would not want to go with an unfinished plot still dangling! I don't know if she was at all aware, but it made me feel better anyway.
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Ruth,
How wonderful! You made me smile. And I do believe she heard your voice...
Love to you,
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Divine, in Re: to the long obits. I think in some way it's away for a loved one to say good bye. Also, the feeling that they want the person's life remembered as being consequential. We all have done something in our life that we were quite proud of, yet, few remember. The obit is away to put it all together in one last hurrah. Then there is the situation where a local paper has an assigned reporter to "pick" someone that has a "history of note" and do the reporting and the family or loved one is only involved as a source of info. :)sheila/sassy
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this is a website in which you can write your own, which I did...
http://www.obitnow.com/index.html
Sandy
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Ruth
, we all as readers so understand what you did, sure your Mom was appreciative OBNX So So practical, yet not known. Thanks!
Linda-R--beautifully written. The Humanity of encouraging you to take Dad to the garden. There is a thread that needs your words right now. Any objection if I cut and paste? I'll send you a Pm with the this request.
Bon
HugsL&H&P's to all, Namaste. May all of many beliefs, find solace this season. sheila /sassy
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Obits used to be free here. When people started to whine because they were limited on what they could print..the newspaper started charging like for anything else. We see alot of those "flowery" obits usually for the wealthy. I know this sounds bad but I have known several of these people and its like they want one last chance to brag about themselves. I think its fine to list organizations u belong to etc but the life story is too much. Hugs, Mazy
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Hello all, just a pop-in to announce a new thread---"INDIVIDUAL TO DO & REMEMBER LIST/CALLENDAR"have been trying to figuire out how to do this for months. Duh , then it was so easy. MODS MAY CHANGE FORUM, BUT SHOULD BE ABLE TO ACCESS IF IT'S IN YOUR FAVORITES.
Link to NEW THREAD :
http://community.breastcancer.org/forum/26/topic/797809?page=1#idx_3
Seasons Greetings to All, have a blessful and blissful New Year. Sheila/sassy
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Bonnie lol...We have had a time when someone was not listed but we had it reprinted correctly the next day. Hugs
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Bon thanks for trying the new thread. You worked it exactly right. i put it on my regular posting threads. Have to be careful of someone reporting spamming. Stupid question--how do you make those dots or are they asterisks and I can't see the points?
sassy -
I don't understand how this will work, sassy. When we click on the thread will only our list be shown or does everyone's list appear? Do we just use "reply" to set it up?
Thanks,
Jan
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Jcb51--when you click on the thread it will show the page where you posted. I will always be on page one, as will BON. If it catches on as a use area, the poster will be taken to the page their post is on. Yes, you will be able to see others posts. Thats why in the last direction I put " no rules etc---If someone sees something in anothers post(storage post) that they disagree with it's none of their business". I intend to post reminders re:novenas on the Catholic thread b/c they are time sensitive when I notify people. Once in the past someone reported me for putting a post on a thread I had posted in the past , but wasn't currently active. They were new and didn't know me. Eh, so, goes life. I was just inviting them to pray. LoL I'm horrible.
Yes, you could hit reply to take you to the message box, or scroll down. Either way. Then follow directions in header. Let me know if changes in the header would make it easier Thanks sheila
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I hate to admit this, but since my latest diagnosis, I have paid more attention to the obituaries than ever. I compare people's ages to my own (47). It has also made me think more about how it will be written. When I was first diagnosed, I went right to an attorney and to the funeral home. The funeral director is a life long friend. I don't know whether that made it harder or not. I was able to get alot done, but I broke down when it came to picking out the casket, so that has been left undone.
And is it wrong to be vain? I am guessing when the time comes I am not going to look so great. I was opting for a closed casket with a nice photo displayed. They convinced me the viewing is for them, not for my benefit. So I decided on a short, private viewing for my immediate family followed by regular calling hours with the casked closed. I hope this may be helpful to some.
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JT - I can only imagine how difficult it was to make your arrangements. I don't think there can be a wrong way of doing things, or that it's vain to want to be remembered, looking healthy.
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Being vain is a GOOD thing!!!!!
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I'm stuck on a creamation, no viewing, and then a Mass. Worked well for DH. We had pics around, all from better days. Creamation is cheep ,no viewing , cheap. It follows through my life of frugalness(cheap lol). My wedding dress was 12.99, hat 2.99--even in 1972 that was frugal(cheap). I objected as a young one re:all the money that was spent on weddings. Haven't changed my mind at this end. At least I'm consistent LOL. But must get to work on a box. B/c it was short notice, DH's box was 200+ $. Searching I could have found cheap(frugal).
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Sas, if you know a woodworker, you can have your box made. There are Internet diagrams and plans, takes 1 sheet of plywood. My BIL is going to make mine for me.
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Thanks Scuttlers
sassy -
I don't want to be embalmed and I don't want a funeral -- partly because I consider it a wasted expense, but mostly because it's not "nature-friendly". DH wants to be cremated and for a while I thought I did, too. Now I'm thinking about a green burial instead. Some cemeteries don't require a vault. We live at the bottom of a hill. At the top of the hill there is a little church with a cemetery. Every time I drive by it, it looks so peaceful. It's on one of the highest points in our county overlooking hills on two sides. If they don't require a vault, I think that's where I want to be buried. I made some calls and got the name of the person in charge. I will call and see what their rules are.
If you run a search on green funeral or green burial, you'll find info on it. I've noticed from obits in our local paper and other papers that I read that more and more people are going with green burials. Some of our local funeral homes even offer a green burial package.
Jan
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I found the initial steps of discussing 'final arrangements' with my husband to make me feel a bit jittery. However, as we continued to discuss the matter more openly over the course of several weeks/months, I began to feel a sense of calm. DH and I learned we felt the same about many things, such as being cremated, having cremains buried rather than scattered, which cemetery we chose to be at and even the plot itself. We still want to get a headstone, but the holiday activity kept us busy and it wasn't necessary to cram that particular detail in at this time. I've a pretty good idea what I want, it's just deciding what kind of price I want to pay. My husband said he felt calmer getting these things in place, too. I would never want to leave all of these decisions to my DH and DS while they are grieving, and I wouldn't want them to make decisions out of guilt or anything; i.e., oh, we must get the biggest, best headstone to show our love, ect.
I do think a viewing is for the living, and I want to make the process easy on my loved ones, so it's their choice. While the obits have always been something I read, I pay more attention to them as well...the age of death, the cemetery they'll be buried at, whether it discusses what they died of. Personally, I want a photo of me printed as well. In our area, I worked a number of jobs in the public, and I think people will remember my face, if not necessarily my name.
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We went with cremation for Dad for several reasons -- but although the cost was MUCH cheaper -- the other major consideration was we could delay the funeral a little, get our feet under us -- allow Mom to adjust a little. And we planned the funeral at the local church (where Dad taught Boy Scouts) -- it was FREE (as compared to quite expensive at the funeral home). We planned the whole thing as a celebration of Dad's life and accomplishments -- his love of life -- his service to the community.
Mom was at first hesitant about cremation (no one previously in her family had been) -- but she loved the idea of not using (yet) the family plot (3-hour-drive from where she now lives) -- so she could keep Dad close (in the urn) and 'visit' him anytime she wanted -- right in her own home. What really tipped it for her was that we suggested that when she dies, we could intermingle their ashes -- and use just ONE of their pre-paid plots -- and get a shared head-stone. The romance of being that close -- "intermingled" forever -- was what truly swayed Mom to this option.
And -- practically speaking -- I SO agree with both Sas's ideas about people wasting too much money on rituals -- and jbc's ideas about the 'green-ness' of cremation.
Plus -- for me -- the romance of spreading some of my father's ashes (as he and I used to joke) at a certain special "fairy-pond" we discovered on our trip to Alaska -- totally sealed the deal.
Dad is now everywhere -- wherever he wants to be. His spirit is completely free. Cremation allowed us still here to visualize him as 'with us' -- allowed us the time to not rush into a funeral service we weren't quite yet prepared for -- gave us time to say all our good-byes at our own pace-- and allowed the romance for Mom of an eventually-shared grave and joint stone -- and still allows for the spreading of ashes to commerate the places he loved with a bit of his spirit.
People never really look much like themselves in the casket. The light that makes us 'us' has left. The light shines on -- but is no longer contained by the lifeless body.
We used the service (and the obit) to honor Dad's lusterous light. The photo board was wonderful -- him at all ages -- and we created a DVD of photos that Dad took (lots of outdoor scenes) interspersed with photos of Dad doing the things he loved, with the people he loved. The DVD ran continuously through the ceremony... so much more "him" than his face in a casket would have been.
My best to you all.
Linda
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As I have said cremation and my kids want a celebration of life that is fine cause I will be dead, lol.....I don't want to be buried I told them I want to be in their houses where I can torture them even dead, lol....they don't have to go visit me I will be right there......I have my parents cremated remains in my dining room....so.....
Sandy
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Six years ago DH and I got all the legal paperwork done and bought our plot, liner and grave opening and kept talking about making funeral arrangements. Had been talking about it for years. The death of my brother at 59, I'm four years younger, was the catalyst. Had to make pre-arrangements for my mom and we talked about it again. Well, this year my bc diagnosis and surgery pushed me to make a push to make arrangements. We have made pre-paid funeral arrangements. All is well now. Our three children have been informed of where to find all the paperwork in case DH and I croak at the same time. Sorry, I can become very irreverent when it comes to making these plans for myself. I am serious when it comes to doing them for someone else.
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Happy New Year Dear Friends, Health , Wealth, Contentment,and Happiness to be with you all your days. ((((((((HUGS)))))))) sheila
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And to you SAS.
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Donated my body to medical university. Plan to have celebration of life while I am still alive.
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me too Science Care is taking care of of my donation and will cremate me and send my remains back to the family, at no cost cause I am donating my body!!
Sandy
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Diana - I want to have a celebration of life, while I'm living too. Just haven't figured out where.
Wishing everyone a Happy New Year! -
Want a celebration of life also but want to be able to participate in it and have a good time...just like Stephanie did on the B & B...lol
Sandy
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http://www.nextgenmemorials.com/ideas.html
I found a lot of great ideas, on this site. I especially liked the idea of giving everyone a card, to write their favorite memory on. -
I noticed a few entries from folks who had special needs kids that they were worried about. I have a 19 year old MR, autistic, deaf daughter with end stage cirrhosis. We adopted this terrific kid (REALLY!) in Vietnam back in 1994. We didn't know she was deaf or the extent of her problems, she was just a baby. She is high functioning , can read and write (3rd grade level) and take care of her personal needs. The end stage liver cirrhosis blew us away (diagnosied at 17) and she has been worked up for an eventual liver transplant. I know that she will also need full time custodial care now and after the tansplant. She isn't sick enough to get listed yet; we jocky around on a ton of meds and walk that line.
Since I used to be a nurse and quit after my stage lllA diagnosis back in 2007, I feel good about taking care of her. I fret and worry endlessly about placing her in a foster home or group setting, since there aren't always super bright folks running these places or enough supervision (my opinion). Yet I know with my wide spread bone mets that the average life expectancy is 1-3 years. I am responding wonderfully to faslodex and zometa - dropping markers and clear pet scan - Thankfully! But I just used up one year almost. I have a great husband and we can live on his income. We have 2 other kids 17 and 11. My husband can not work his job with my disabled child home, no day care and he travels some. So we have agreed to look into placing her.
The guilt I have just knows no end. I am not dead yet, feel pretty good right now and she has a serious illness. It would be better to place her and have her comfortable and settled before I die. If we do it now we can be picky about where we place her, instead of the next available spot. Some of the homes out there are scary and few have signing staff - a real requirement for us. I would love to spend more time with my other 2 kids, since they always get what is left over. We can't travel easily since this DD child determines what we do and how long we spend etc. With my life expectancy limited I vascilate back and forth between wanting to do more while I feel good and can, and being a Mom, care giver to this disabled child that I love and want the best for. Have any of you had challenges with your special needs kids and cancer diagnosis? How did you handle it?
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I have taught special education for 38 years. My advice (even if you were not ill) would be to get her settled into a good living situation now. As you note, if you do it now, you have time to do the research and make sure it will be a good and happy setting for her. As special needs children enter adulthood, this is a situation all parents face, and it is really dreadful for the kids (and also their siblings who then have to assume responsibility) when something happens to their parents (as eventually it will to all) if living arrangements haven't been taken care of ahead of time. You have no reason to feel guilty, you are looking out for her best interests.
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Rosevalley, just wondering what 'signing staff' is.
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Rosevalley - my parents are deceased, and I am the trustee for my 36 year old autistic brother. He lives in a group home two hours away. I feel so guilty, that I have to put him near the bottom of my list, because I have two boys at home.
I hope you can find a way to give everyone a little of what they need, without forgetting yourself. -
Mrs M- rosevalley is refering to few have staff that have the ability to sign. She mentioned her daughter being deaf. Both my parents are deaf and even top notch care facilities lack those that speak ASL. When my dad went into hospice they said they had nurses that signed, (it was mostly for my mom as my dad was unresponisve by that point) but their ablities were very poor. Lots of finger spelling (instead of using a word sign they would spell it out- imagine how long a conversation would take if i had to spell out all the words to you)
Rosevalley- I think your idea is wonderful- Work now at getting her placed so you have all your ducks in a row. Last minute would be a nightmare. No one dreams of placing a loved on in a home, but the reality is sometimes due to things out of our own control (cancer being one of them) we are between a rock and a hard place. Your younger children would love that extra time you have with them as well...
My aunt kept her husband with her at home while he had alzhimers, but she had to work. She refused to place him in a home, he nearly burned down the house, he had wandered away numerous times, all because she still had to work and there was no one to care for him. He died last year, thankfully without any further incidents beyond what i mentioned. But i always worried because out of her stuborness she couldnt see that his and her saftey was in danger.
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Oh, oh, thanks for the explanation. For some reason my brain didn't connect that together. Gosh, I can really see how that is a need for some, and sorry to learn that it isn't easy to come by.
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Hi Texasrose and everyone else. It is nice to hear that others don't think it's beastly placing her. I love this kid to death, but she is lots of work. Mostly it's the cirrhosis that worries me. She has been worked up for an eventual liver transplant and they think she will do really well, once she gets it. But this continual dance of chasing ascites and diuretics and replacing vitK (clotting) etc... this has been going on since 2011. She gets too tired to do much, so we all feel like we are under house arrest. My middle daughter in particular resents babysitting continually - even if she is paid. I have been taking my youngest to basketball practice M-Th.
My DD daughter signs only to communicate and our whole family signs. Teaxasrose is so correct when she said that many facilities say they have staff who sign - but it's so limited as to be useless. My daughter signs really well, fast and will even bounce back and forth between ASL (American Sign Language) and ASL signs in English word order - which we use around the house and when speaking. It breaks my heart to think of her being placed in a home where no one signs. It would be like a hearing person going to China with no hope of ever being able to speak to anyone. Thankfully Anna can write pretty well, at a third grade level.
Plus we have toured homes and some are so dingy and lifeless, it's sad. I want to find someplace warm and full of other deaf DD folks like my daughter. She deserves a community of peers and normal conversations. It keeps their minds sharp and emotionally it's more healthy. There are 2 wonderful deaf only group homes here and they are always full. We toured the home and I was just charmed at how the residents wanted to show us their rooms, share about their activities. It was clear they were proud and happy to be living in that group home. Pray we find something like that with staff who can follow her diet and keep the medications straight.
You are right about needing to give quality time with my other 2 kids and husband. For the last 19 years this child called the shots, we did what she could tolerate, left when she acted up, didn't go if she refused. We spent an hour trying to get her out of our van during a trip to San Diego. We couldn't leave her in the van - too hot and so we all sat in the parking lot until she decided she would get out. It gets old and wears you out. She can be a real sweet heart too. Many times she's a hoot and funny.
My cousin is a nurse and will be my daughters guardian when my husband and I pass. Everyone in our family loves her and will look out for her. I am lucky for that. So the search continues. The state and county just did their assessment, now we wait. Wish us luck. I wish us all luck.
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Rosevalley- I hope/pray this transition will go as well as it possibly can. Which area do you live in? I can ask my mom, whom has a vast network of deaf friends all over the US, to see if anyone knows of a good facilty with sign. (As you know if there is someone who can sign within 40 miles a deaf person WILL find them!) Growing up we knew which businesses had employees that could sign etc...
Also there are big hearted people out there that take in children like your daughter. I knew of someone that took in only Down's Syndrome children/young adults. I honestly don't think a larger home would best fit your daughter, sounds like she needs a lot of one on one, maybe a small group home, or even a private one... Let me know and I will get my CODA feelers out there! Feel free to PM if need be.
Also one last resource- there is a deaf adoption group through yahoo groups, its ran by someone named Gail- these people are really in the know! In my other life (pre bc) i had dreamt of adopting a deaf child. My dad was born into the foster care system, and wasn't adopted til he was 12 b/c of the deafness. Then his adopted mother refused to learn sign. This was in the 60s and sadly not much has changed in the world today.
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Rosevalley, I hope everything works out and you find the perfect place. It will put you so much at peace to have all that taken care of. My biggest prayer is that my youngest adult son who is 30 get his life together before I go! We all have our struggles other than BC. I wish you well!! Hugs!
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Get her on the waiting lists of both the places you like right now; just in case there is an opening (you can always withdraw her name if you find someplace you like better).
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Absolutely get your DD on the waiting list -- even if you think there is little hope... because The Universe has a way of helping us when we need it most... at just the right time.
My best friend was care-taker for 10 years for her (alzheimer's) mother -- until her mother's death -- and then almost immediately was awarded custody of her 60-yr-old-Down's-Syndrome cousin, when her aunt died, soon after.
Another 10 years of care-taking and now Georgie has alzheimers, too. Both of these responsibilities were about people she loved very much, but anyone who has done care-taking knows how all-consuming, occasionally-exhausting, and life-altering it is day-in-day-out to be fully responsible for another person.
When Shery began having her own heart-problems, she began trying to find a group home for Georgie... (with many of the same complaints about care/cleanliness/cheeriness as you, RoseValley). But she found one home that seemed perfect -- and put Georgie's name on the list, despite the guesstimate of a 5-year wait.
It took nearly 4 years -- but just as Shery was at the end of her rope re her own health... she got the call that Georgie could move into the group-home of her dreams. He is quite happy there, but his own health is deteriorating quickly, and thank God (!) that the home took him when they did, because Shery is in her late 60's and simply no longer has the physical strength to care for Georgie the way he now needs.
Best of luck,
Linda
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Linda, thank you for posting your experience with your daddy at the end of his life.
My precious Momma passed away on 12/31/06 from a 9 year battle with lung cancer.
My brother, sister, daddy and myself were her caregivers. Mostly Daddy and my brother, then my sister moved back home and I came home (I live 3 hours away) a lot.
Hospice came to our home the last 3 weeks and they are all angels sent from heaven. They were there anytime we or Momma needed anything. Sometimes we didn't know we needed it but they were there to offer it. Momma's death was very peaceful and that's the way she wanted it.
She wanted a viewing then a funeral service at the funeral home followed by a short graveside service. My sons, nephew and life long family friends were pallbearers. Momma wanted a viewing and again, she always knew what she wanted and got it too. She knew that we would see old family friends, high school classmates, people we grew up with, family that we'd not seen in years, etc. And they all came to say goodbye to Momma. Because of her we have all connected with friends and family that we've not been close to in years and years.
That last day, I was leaving to come home to get clothes, sons, hubby and going back. I had been there for about a week and Momma kept telling me I needed to go back to get things in order with hubby, etc. Before I left, I sat for a long time just talking about the holidays, things we used to do and how much they meant to me. When I got ready to leave, I bent over and whispered in her ear that she had done a great job with us and that we knew she was tired and we would be fine. We knew her wishes and we knew that she loved us and that she would be waiting for us in heaven. I told her that she would be together with her Momma, Daddy, Sister and Brother and what a reunion that would be. Then I kissed her and told her I would be back the next day and I would make sure her wishes were followed to a T.
I got about 20 minutes down the road and my brother called and told me that she had passed away with a smile on her face and it was so peaceful. The visitiation and funeral were beautiful. My sons were so upset and my youngest (he was 27) said he could not leave her at the gravesite. I told him that his Mammy was not in the casket....she is always in his heart. His brain knew what I said was right but his heart didn't want to let go of her.
I think she was hanging on because she was worried about her kids....when she died I was 50, my sister was 49 and my brother was 44! I still miss her as much today as I did then and cannot bring myself to celebrate on New Years Eve....yet. We plan on having a celebration of her life next New Years and I know that's what she would have wanted.
My DH and I have made our wills and our advanced directive and will plan on planning our funerals, etc this year. We've made it a priority since I believe that by planning things now, will help our family that will be left behind.
Thank you again for posting your experiences, Linda.
God bless y'all,
LaDonna
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Bump. Bon's fantastic to do list is on page 18 if anyone is looking for it. I guess the mods never noticed that we hoped this thread could become a sticky. Wonder if they would consider the to do list as worthy of a sticky.
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wowee wow wow. You guys have a great pool of info here. I will be printing the list today.
Do you know generally who to call about donating body to science? My friend from New Orleans says they will not return her mothers ashes, so I need to check in my state.
WOW
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I would think university medical schools would be the first place to check. I imagine there would be a contract spelling out the disposition of cremains. Good question.
This thread is Ma111's legacy and gift to us. -
Bon check uniformlaws.org/Act.aspx?title=Anatomical%20Gift%20Act%20(2006)
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sorry i cant post a link but it can be cut and pasted in your browser!
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thanks! google chrome wont let me access my clipboard on this site, no copying, cutting or pasting- drives me crazy!
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I was thinking of donating my body to science, but the requirements were not worth it. You have to be within a certain BMI and other stuff. It just seemed like too much work for a dying person.
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Both my parents donated their bodies to science, university medical schools to be specific. They did it through their local funeral home. A mortician had to be involved and designated as the receiver of the body after death, so that they they wouldn't do incorrect embalming. They have to do something different in order to preserve the body. Free cremation was a part of the benefit of donation. Return of the cremains to the family took a year for my dad and 4 months for my mom.
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I found instructions on the medical center website, as you all suggsted. I think it will bother my DH if I go this route. It would be unsettling for me if his body went that way.
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that is who I have donated my body to...I don't have life insurance and don't want my kids to pay for anything.
Sandy
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I have donated my body to science as well and have explained to my family that this is my desire. They will come and pick me up, no mortician involved, and will return my cremains when they are finished. It will cost my family nothing so I've instructed my DH to have a great party after the memorial service with the money saved. I didn't have to meet any stringent requirements but did have to fill out an application and wait for approval. It's the Anatomical gifts registry in Hanover, md and they have a website that answers all questions.
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hey Blondie that is different... cremains in 3-4 weeks. I was imagining lying in a cold vat of formaldehyde for 2 years.
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I have read a few of the pages from the beginning and a few of the pages here at the end (stumbled upon this post yesterday)...and today i was thinking, in the shower, what a unique situation i am in (I'll speak for myself)...I get to have a chance to tell the people i love the most all the things i want them to know. I get to have input as to what I want my service to be like. I get to leave my family with some financial security (thank God for Dave Ramsey and buying a big life insurance policy)! I still could die from a car accident, but I just thought in the shower, what a strange blessing? That's not really the word, but it is. I've always wanted to donate my body and be cremated. I'm just finishing up chemo in the next two weeks. I have a 22 month old and an 8 year old...so I have just begun my fight because i have goals to see them grow up. I appreciate this thread though because no one in my family wants to be practical.
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well glad you did...for me I have no life insurance and don't want my kids to be burdened with any expenses....I have no assets, I rent my home and actually someone is paying my rent for me....my car is 2007 and is not inspected....I only have the contents and my jewelry and personal items.....donating my body to science is the way to go for me....I am adopted and my biologicial mother died of a recurrence of BC after 15 years and died within 3 months.....me 14 years and I am still here 3 years later....if it will help anybody it is worth it for me. Also I am single my kids (5) and grandchildren (7) are all I have so I get to make the decisions like I wrote my own obit (my kids don't know anything about me before them) and the celebration of life I get to decide if it is before or after I am gone (there are people (sil)) that I don't want there...and although I am not a control freak (but is sounds like it) it is the last thing I can control....soooo, will, lol
K-lo, well that is refreshing isn't it.....they pay for everthing, cremate you and send you back, free of charge, works for me!! I sent all te information a couple of years ago, do not seem to be qualifications that I am missing...and cancer doesn't boot you out of the program...works for me....
Sandy
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Kjones, I know what you speak of.....I believe I read something similar somewhere that described the situation we are in as a 'privlege'. It almost sounds odd, because we think of a privlege as something without a certain kind of heartache attached to it. One definition of privlege from dictionary.com: a right, immunity, or benefit enjoyed only by a person beyond the advantages of most. Perhaps "enjoyed" is not the correct way to describe this, but in some ways, the description fits.
blondie, I know just what you mean about wanting/excercising a certain kind of control over the situation. I am like that too, and make no apologies for it.
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http://getyourshittogether.org/checklist/#.URe4QqN5mSN
Found the above website by accident (or providence). -
Scuttlers......LOL. That is so, so......I don't know what to call it but it sure gets our attention for something we all must do. Lucky find, thanks for sharing. Double post caused by humor.
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Scuttlers......LOL. That is so, so......I don't know what to call it but it sure gets our attention for something we all must do. Lucky find, thanks for sharing.
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Scut that does kick my butt into gear. No one else gets it..... nor do I feel like bumming them out with it, so thanks for being here.
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thanks so much for the information, i truly appreciate it.
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Bon, sweetie what a work, congratulations from the rest of us!. Everything in such a short space, bless you
L&H&P's sheila -
Thanks Bon!
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BUMP
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good idea, told my daughter that no clinical trials for me and something else, wth was it, lol
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Good Morning-friends, have been working on an issue with a member. Wanted to share with you all the note below b/c of it's importance. Hope you find it useful Sassy
(members name deleted) Glad the link helped. If you get the AARP magazine this months issue (probably dated may 2013) , there is a story about the safest hospitals and what safety procedures that are in place that cause them to be safe. The article cites that 180,000 people die a year due to medical/surgical errors AND 400,000 drug errors are made a year. The articles states that these numbers are likely higher b/c these are the ones that are reported. I agree. I know you've seen where I've said on the threads "Sorry etc for too much info, just want too make you(BCO memebers) safer". Guess I should stop apologizing for writing stuff in this regard. These numbers are higher then the last set of numbers that I had known. The problem is either getting worse OR there is better reporting. I'll go with better reporting.
It cited that one of the safety items was having an ICU Intensivist. It cited that only 35% of hospitals had Intensivist. I was dismayed at this percentage since residencies for Critical Care Medicine have been available since the 1980's. Truly thought by now that the "industry" would have been driven by demand for better care that this statistic would be 70 to 80%. ICU medicine is absolutely in need of a specially trained doc. Just as in all subspecialties of the American Medical Association(AMA), the knowledge and skills of this subspecialty are critical to survival when a patient is at this level of need.
I'm going to post this on the threads, I'll take off identifiers. My hope is those seeing this will locate a copy of the AARP article. Read it throroughly. Then question there local hospitals on each item. Based on what they elicit re:safety of each facility, they can choose the safest hospital near them for care. It can mean the difference between life and death, and or avoidable complications. Spreading the word to others regarding this may save lives.
Your description of where your friends daughter is now is typical. So, the care may have been fine or she recovered in spite of them. I'll go with the care b/c of your description of how she appears now. What was truly lacking here was the communication in lay terms to the family of was what was going on with the patient. All the lay person then can do observing is assume, as in this patients case, there appeared to be fractured care delivery and choas. What can the untrained person concluded observing this. As in all care, communication is the center of it all. Very often even the care givers question what the recovery will be. AND then the patient pulls through. Continuing with evaluating the records will lend a lot to the understanding of this event.
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Jeez, went to local funeral home yesterday. Cremation alone is $950, but,you have to buy Cremation package: $4000. That's the whole package. No funeral, no viewing, just "professional services."
So $3000 for transporting body to crematorium, pouring ashes into vessel, (not included) and returning that to family.
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K-Lo: That's right on target. My brother died suddenly last year and just for the cremation it was $3540.
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K-lo for my DH in 2010 that was about the price--creamation was about $950, urn about $350(colonial box), included transporting to church for Mass, flower transport, death certificate copies, obit placement (I think), a little urn about 70$ that was buried at his parents grave site up north, transport from home to crematorium. If I can remember where the papers are I'd get exact numbers. They had a little ark type carry thing for the urn that two people carried up and then back down the isle @ church, rememberance cards & book. I did not have a viewing , strictly the Mass. and luncheon at a local restaurant after. The luncheon worked out great b/c twice as many people came as expected. It was an Italian /Greek restaurant. We ordered for more than expected, but then were able to order pizza to fill the void. Had order 3-4X's as much salad. We ended up with leftovers so it was all okay on everything.
I did think that I would look for myself for an urn off the internet, but haven't followed through. I'll give a look and see
sassy -
Well apparently buying urns has become a HUGE market. Even Walmart's into it. Price range just on the google adds and first web address I hit, ranged from 12.99 to several thousand.
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Yes, dying is BIG business. Bon said the law states you can get any funeral home's price list for services and products. So I got one from town. I've posted this before, but will copy it here again:
direct cremation: $2225
Traditional funeral: includes afternoon and evening viewing , next-day funderal ceremony $4,550. Casket would be extra.
Cremation with afternoon and evening viewing and next-day funeral service, rental casket included $4,950
Crazy, but the cremation services are pricier than the traditional except for the casket.
Oh, and to have an obituary printed in our local newspaper: $150.
I priced headstones, and the one I liked was about $3,000. Didn't make the commitment, will look around. I know cheaper stones can be had; the salespitch for this one was that foreign granite can have flaws, retain water over the years, crack, ect. I want an upright about 30" x 36" and a footer.
DH and I purchased a cemetary plot: $350. We plan to be cremated and have the cremains buried in one plot. Cost for burial: $300 each.
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Wondering what you do if you don't have a burial plot anywhere. DH and I have moved so often, no real roots or "home base" to really have even thought of a cemetary location. We both plan to both plan to be cremated, so I wonder what we should do with the ashes. Probably going to be HIS problem, not mine, LOL! So there wouldn't need to be any headstone, etc., so no burial record, etc??? I know a woman who keeps her DH's ashes in a "Seol bowl" (the covered bowl came from a trip they made together) on a shelf, don't know what she plans to do with them!
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Hey Linda and Divine , DH is in the bedroom, DS will get both the remains, I'd like to end up together, but he will probably have kids and want to do the same. Considering how often we have moved and DS too, this could get to be a lengthy process. A little here, a little there LOL sassy
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So theres no reason one cannot choose any "urn" they want, right?
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I think somewhere earlier on this thread what is known as direct cremation is typically less than $1000. Often aroun $7 or 800. Definitely something to shop if a funeral home says they want over $2000.
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Well here in Ottawa, Ontario, Canada my girlfriend had her hubby's ashes put in an antique porcelain oriental vase, (around 21") with a lid that the funeral home sealed. She keeps him in the rec room of her home. I know every Province has different rules.
I told Jim I wanted to be in a steel lined box with a pic of me and my granddaughter pasted on front and planted right on the mantel with googly eyes that follow you....katie was with us and I lightened the conversation up as she doesn't know that I have IV. It has to be steel lined i said...what if you drop me,....vacuum hmmm, katie laughed (she's 10)...jeez, prior to this conversation he was going to throw me in the lake!
I've never been ok to talk about death. Im getting on board now tho...At one point in the past Jim was going to make our pine boxes and store them in the basement...I ne'er killed him! He gets sooooo upset at funeral costs lol. Before my BC he was determined that he would transport me DEAD in the van from the hospital to the funeral home.....crap....he was serious....he and his father drove his mother's ashes 100 miles to her familie's town...ok, that's fine...but he was serious about dragging my dead body in the back of the van to save money! I made my daughter executor of my will so if he loses his mind at least I'll be cremated before being dragged around! I will get my stuff together but I'm still in shock. -
I am not stage iv but my husband was cremated, I dealt directly with the crematory and it was just under $400.00. Remains were in a small box, I didn't want to keep them so an urn wasn't necessary. Not all funeral homes have crematories, check with one that does, also many times inner city has lower cost.
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Well - I started "getting my affairs in order" yesterday. I planned to get the final arrangements made, but I was pretty depressed from just shopping around, so I guess getting some prices was a first step. I'll do more another day very soon, but needed to digest this information and talk to my husband about it (he's a master procrastinator - especially about this). A cremation plot is $250. A local funeral home charges $3270 and that is only to arrange/transport for the cremation, and provide a graveside service, an urn, and complete the burial paperwork.It would be much more if I want a service at the funeral home. A mortuary 50 miles away will provide the same job for $1300. What a markup! I'd like to keep my business with a local funeral home, but I think my kids can use the extra $2000 more than the rich funeral home director can. I know they would be shipping me out for cremation - probably to the guys 50 miles away - so what am I paying them for? I guess I'm the tight one, but we spend so much of our salaries on medical bills - there's not much left over. I doubt that he would want to haul me in the back of the van though - reminds me of the movie Little Miss Sunshine. Very funny movie if you haven't seen it.
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For the record - I've always said that after I died, I didn't care if they toss me in a garbage bag and throw me in a ditch, as I won't be here. The only person that I can get to talk seriously about this that expressed an opinion was my daughter. I was fine with having my ashes scattered, but she said she would prefer that I be in a cemetary, so I 'm making these arrangements on her behalf. I want to do whatever brings my loved ones a measure of comfort.
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Joanne, you made me laugh! And a $12.99 Walmart urn? They wouldn't dare! Still, these costs are shocking. I want my ashes scattered over the water in CA... can't imagine what that involves!
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I'm going to rent that movie surfdreams! I'm laughing cause after I finished writing about Jim he asked if there was anything happy on this site...well I said...I just wrote that you were going to transport my dead body to save money...he looked at me...I wanted to smack him lol, he said yes, I'm going to rent a U-haul, I told you that...well...I said "you can't do that cause Cindy (our DD) is the executor"! We were having a hard time earlier tonite up at our fav restaurant...I'm trying to "enjoy the moment" but reality sucks. Have to joke to stay sane.
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Actually my avatar/pic was taken there a few weeks ago when I bought my wig...tonite I went nakid...
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I'll bet you were still a cutie patootie!
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Several months ago, DH and I brought up the delicate subject of final wishes/final resting place with our college aged son. He doesn't want to sort of inherit our cremains in an urn. We don't care to have our ashes scattered. So we chose the cemetery just outside our town where a number of DH's family are buried and bought the plot. It's actually calming to have at least that much decided.
I can't say if DH and DS will want a viewing or service. It's really up to them, whatever they would be comfortable with, and what would give them the most comfort. Me, I'd go with whatever saves money. But if spending a bit of money is going to help them the most in their grief, that's what they should do.
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Divine, so right, whatever helps them , we won't know.
I've been putting off the urn search. But based on what I saw yesterday. I need to get working. There was one web site that had teaching stuff I should have copied the link here. There's actual recommended size for perdeath body weight. Small , medium, large. DUH who new. I'll try and find the link.
I was ornery about wedding costs in 1972, I was in 5 weddings before mine, my wedding dress was 12.99. That was CHEAP even then. Unbleached muslin and cotton lace in a pre 1900 style. I was 21. I was into antiquing/junqueing even then, so, the pre 1900 look with a wide brimmed hat with a green ribbon was right in character. It's on a mannequin in my victorian living room. It's lovely. Entirely agree that funeral costs are way out of line. It'd be a hoot if I could do the same with a funeral.
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Did anyone see the story from Texas awhile back. A man was transporting his fathers ashes in a fishing tackle box back to their hometown, stopped for gas(something?). Someone stole the tackle box. He was on TV asking for the return of the box.
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sas, I also was thrifty about my wedding. DH and I took a trip to Williamsburg, VA (about 8 hours away) for five days and got married while there. I purchased short white dress off the rack, he bought a suit. All told, with the cost of the trip included, we spent less than $500. This was back in the late 80s.
I can picture your 70s wedding, I know just what you mean about the muslin and lace dresses with picture hat. What a wonderful idea to have it on display in you home.
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Thanks Divine, I still love it, and I can sweetly preach about costs. Poor DS, but he's now quite thrifty, so, some has worn off on him LOL. I wish I could post the window setting, It's a bow window with the mannequin and a little circular marble top table with a vase of red flowers with flowers all around. AND other old things. Hung our wedding picture on fishing wire from the bow windows ceiling. So, it's floating so to speak.
Have always wanted to go to Williamsburg, read much about it, Lovely
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Hi, all. I have been reading for a while here, and don't think I posted a ways back about the idea of donating your body to science. I was the director of the non-transplant anatomical bank for a while for the university I worked for, and one of my best friends was the director of the one across town, so we worked together a lot. And another of my best friends taught anatomy at a medical school. The gift of your body is one of the greatest gifts you can give if it is something that appeals to you. Each of us made sure students were oriented to their "teachers", that they understood the great gift they had been given, that they treated each with great respect, and there was a memorial service at the end of the semester for all students and faculty to attend if they wanted. I don't think relatives were invited because of confidentiality issues - students did not know the person personally as that would have been too difficult. In any case, sometimes the "teacher" works for an entire year as students progress through studying the body, returning to the lab daily or weekly throughout the year. So there is definitely a delay in getting cremains returned to families, but it is not becuase anyone delays on purpose, but rather because their loved one is teaching these young health care professions students. I remember my own experience with learning and the profound appreciation I had for the gift someone had made. Sorry about being so wordy, but I am very grateful for anyone who feels moved to donate their body to science, and want to assure you that the gift is respected and appreciated.
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Linda, wow. Your post is fascinating. Thanks for the insight. What a job, so interesting.
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Hi Linda, as Divine said enlightening. For the aspects that I can add, at the local med school, they invited family members to a once a year ceremony for those that were retired from the service that they offered. The instituition took it quite seriously. They wanted to impress upon all their students the significance of what these people did. A memorial service. AND there was a social gathering after that allowed families to talk. When this was described to me I rhought it so respectful and kind.
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I am, www.sciencecare.com signed up for it and they are taking care of everything.....
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I saw a bio urn - it's like a compost pot you stick your ashes in, some potting soil and a tree seed. It was $150 - lol
But, I kind of liked the idea. I could nourish a tree. Then I think - my tree will die and it will be like replacing a goldfish for the kids
I'm also thinking of having some ashes put into a concrete bench. (along with the bag i have of mom, dad and brother) Which I will have placed in the cemetery that is in my sideyard (ca1830's). I bought
the bench mold online.
As for cremation prices, my parents wanted the chic-chic funeral home about $4000 just cremation. When my brother died I was paying. I went two blocks over and paid $1700. I have found the same price difference here in my
town.
Off to take my Xeloda... -
The posting about renting a van and transporting the body to save money is a hoot! I have a Buddhist friend who wanted to leave his body out for the vultures to consume... can't do that here, maybe Tibet. Cremation in Oregon seems to be running 600-1000, no urn just a box.
I have a question for Linda n3- if you have had double mastectomy do they still take the body to medical school? Sometimes they like all the body parts there for study. I was curious.
Nice to read that others value simple weddings and simple inexpensive dresses. Back in 1989 we spent 375 on our entire wedding. Dress 100 (not a wedding dress/ plain tea length white) church office wedding, cake/ lunch for immediate family, money to minister (Unitarian's pretty reasonable). Big weddings are so stressful that they aren't fun... simple is better.
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Rosevalley, I don't see why they WOULDN'T take a body with BMX. (Warning: if you don't want to read any details, stop reading NOW - I am about to write a couple of things about what happens in the lab).
Each human body is unique, the muscles and blood vessels and nerves and organs don't always look like they do in the textbooks, and are often located in different places than you would expect. Some people have had heart attacks, emphysema, and even undiagnosed cancers and unrecognized birth defects! Many don't have an appendix, ovaries, uterus. But overall, students learn from these bodies and from each other. Labs usually have several bodies, so students have an opportunity to actually compare the uniqueness of each human being. The human body is an amazing and wonderful creation, and the students learn to recognize this, as well as the individual variations that occur, whether by nature or by surgery. I hope this helps. -
I read about body donation in AARP - the section where people write in. What a relief it was to make the decision to donate my body to science! The paperwork was simple - one page - signed by two wittnesses and not even notarized. I do not want my family to have the financial burden of my death and I do not want them to spend the small amounts of money I will be leaving them through life insurance. I am donating my body to Albany Medical Center. They will even transport my body 3 hours to Albany for no charge. The only stipulation they have is that my body be in tact - not mutilated in an accident. So, if I can manage to die from cancer and not a car accident - I will be all set. (My ashes will be returned to my family in one year). My family is fine with the plan as we are not a ceremonial, funeral-type family. We are very private concerning family matters and would all rather just pass away and have our ashes buried in the beautiful mountains we live in. (Wow, I am very thankful for this thread. I write on many other threads and find everyone supportive in their own way. I find, however, that I have to be careful about what I write on what thread. Some threads accept my realistic views and some do not as many of the people posting on the thread are not Stage IV - Thank goodness they are not - I hope they never are for their sake....)
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It's interesting to me to hear other perspectives on the 'final wishes'. Where I live, there's often a viewing followed by a next day service. The casket is delivered to the local cemetery and a luncheon is held after the service. If it's a veteran's funeral, there's the folding of the American flag and a 21 gun salute. Very much pomp and circumstance. I don't have any problem with it. I also don't have any problem with someone donating their remains to science, or going to direct cremation, whatever. It's all so personal. It's just interesting to learn there are different wishes for everyone.
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I hope it is still OK if I offer an occasional comment? You can do both donation and pomp if you wish. A friend of mine's mother wanted her body to be donated to science. They were still able to do all the traditional things, which was the wish of both the mother and the family. There was a big church Memorial Service with all the trimmings after her death (but no body, of course). When her cremated remains were returned about a year later, there was a private burial service for the family followed by a catered dinner for all the relatives.
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If you do want a more traditional funeral, it is expensive, but a good funeral home will work with you to save money and still get the type of service you want.
It was important to my mom to have a wake for my brother at a funeral home after he was cremated. Then his remains would be privately buried out of state. I was looking at the display of (expensive) urns we might purchase to display his remains at the wake. But the funeral director suggested that, since his remains were going to be buried afterward, we did not really need to purchase an urn. if we preferred, they had a lovely walnut "casket" designed to hold the simple cardboard box of remains, and we were free to borrow it for use during the service at no charge.
Also, my brother was not religious, so we didn't have a church funeral. But I felt that some a formal service of some sort would help my young son emotionally. So at my request, at the end of the evening the funeral director got up and spoke for about 15 minutes. She wrote a brief eulogy and read some stock funeral readings. Again, no extra charge for the little ceremony.
When my husband and I have lost parents, the family preference has always been a traditional wake with embalming and a viewing. On both sides, the family cemetery is out of state. When my father-in-law died, we spent a small fortune transporting his body out of state. There were two funeral homes involved, airfare, you can only imagine. It cost several hundred dollars each way just to transport his body by hearse to and from the airports.
After that, we learned our lesson. It remains the prefernce of our parents to have a traditional wake here, with embalming and a viewing. But now, we follow that with cremation. Both times, we have rented a casket to be used during the wake at about two-thirds less than the purchase price. Following the wake, cremation itself takes place in a simple container. Then we carry the remains out of state ourselves for the burial. The burial costs are much lower too, because they don't require a concrete vault or as much labor to open the grave.
When my mother-in-law died, the funeral first funeral home we visited told us they were forbidden by state law from renting us a casket. We knew this was untrue, because we had recently done so for my dad. So we went up the street to another funeral home, and they were happy to show us a nice selection of lovely caskets available for rental. No one would ever guess they were rented. (The liner is new but the outer shell is reused.) -
I have very dear friends who long ago made the decision to donate their bodies to science. Their children and grandchildren respect and admire their decision. The husband died rather suddenly in March and last Saturday the family had a large, well-planned and very well-attended memorial service in their Lutheran church. There was lots of music, funny and heartfelt reminiscences and a nice reception afterwards. No one missed the presence of a casket or urn, or the drive to the cemetery.
This and the recent discussion here have me thinking seriously of doing the same. What a gift to be able to help advance medical knowledge after I'm technically no longer "in the house"!
Tina
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thanks for the info Linda....how r u?
me either reality, have no life insurance so my kids won't have to pay anything unless they decide to have something somewhere.
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I was dumfounded yesterday by a conversation DH and I had. I was feeling pretty down, am now dealing with LE, which I think may be the straw that broke the camel's back as far as my decision to continue treatment. I think I got it by gardening, one of the few remaining pleasures in my life. Really sucky week. So I mentioned that I was talking with some friends about funerals, joked that I really thought a big funeral pyre in the back yard would be just right for me (not sure the fire marshal would approve such a bonfire), and reiterated my desire for no viewing, just cremation and that prices seemed to have big range. He said he knew the local crematory charged about $1200 if you used a cardboard box, more for wood, and he didn't see any reason to use wood. We joked about urns. I told him I wanted him to keep my ashes so they could be scattered with his when the time came, but he said he had planned to spread them out in all the different places that we have traveled to and loved. I was deeply touched, but totally surprised.
I have been keeping a little list of music, have not had that conversation yet, but will do so in the near future. I think I want a simple church service because the church I attend has been the source of most of my enjoyment of life as I participate in choir there. -
I've mentioned before on this tired that I'm donating my body to medical science. Have given cards with my donation # to my family members and wrote letters to each of my kids that this is what I want. I don't want them thinking my DH is being cheap! There will be a memorial service at my church (mainly for my adult kids) and a good friend has offered her home for a gathering afterwards. She only asks my DH to pay for cleaning before and after and to pay the caterer. All in all, it will cost way less than a traditional burial and my friends and family will have time to celebrate my life. Btw, I'm preparing a video slide show because I am the picture taker and no one else would know where to find the pictures. Also, I can make sure all the pictures of me are flattering! LOL! Have also chosen a few songs and a couple of my favorite bible verses to read. My preacher of 17 years, recently retired, has agreed to sing a beautiful solo that we both love, "Lord, I have come to the lakeshore." I have also suggested to DH that he have visiting hours in our home for a week or so rather than a huge gathering at a funeral home. That is just so much more personal to me. Now, whether it goes off as I planned is not my problem .... But I have let my wishes be known!!
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HAPPY MOTHERS DAY AND HAPPY MEMORIES OF OUR MOMS. l&h&p'S SASSY
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Good idea Schatzi! Here's to all the moms who have come before us. I think of my mom whom I loved so much, who also died of breast cancer.
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This is a godsend. I'm a newbie to this site. I'm supposed to be keeled over and croaked out in less than two years, per my oncologist. Like many of you, I cannot seem to bring myself to getting the dying person's paperwork taken care of except for the living will stuff. Everyone in the family is already fighting over my things and nagging me about this paperwork, so I am loathe to touch it. My coworkers who know keep giving me these sad smiles. My life feels a little surreal at this point, but other than the occasional blip on the health screen (two hospitalizations for pleurodesis, pleurex and for blood clot in the jugular vein), I feel great! I'm now on Xeloda and I exercise as hard as I can plus I'm back up to full time work hours. How soon before I feel like I'm actually not doing so well? How does that usually start? I really need to know because a lot of other things in my life are changing. Please advise/share, if you can...Plus does it actually help to post my multiple Dxs?
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Snylander,
I believe at stage IV, most of us are given around a 2 year time frame, but many have outlived this quite well for 5, 10, 15, 20 years. No one knows but God when your time will come. I was told many times to get my affairs in order while I feel well. This is good advice because when you are not functioning well, it could be very difficult to make these kinds of decisions.
Some feel good just taking care of their wishes and getting the will or trust done so they can relax and not worry about it.
It's good to prepare and get everyone on the same page so there is no question of what you would want to have done if you should get very sick.
Terri
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Snylander, no need to post dx., but I find that sometimes people with a similar dx., treatment, status, etc. identify with me and post on thread or p.m. me. I have made some nice connections that way.
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This thread has allowed me to get back to living! Once I completed all the arrangements for what happens when I die; I was able to leave it all in the file in the cabinet and forget about it! Before it would creep in at odd moments and ruin my day. Now when it creeps in, I remember that it done and not to be worried about. Sending a HUGE thanks to MA in heaven for giving us this blessing.
Those who are not comfortable discussing this with their loved ones, I would say DO IT, FINISH IT, and it will give you a pathway to get back to LIVING!
LOVE YOU ALL! -
Thanks for the input, will add my Hx to my signature. It's been a long road! the big change coming is a possible job change. Not a bad change per se, but I do not have a choice about it. It means moving, changing life insurance and health plans and doctors, so I figured I should hold off on the pre paid funeral plans until I figure out where I'll likely end up - hoping to find one that will move around with me. The will is a joke because I realized I don't really own anything of value on my own. But the life insurance was a major thing because I am the sole support of my family, and it is connected to my job. I can appreciate doing this while I feel good. When I had trouble breathing (due to malignant exudates in lungs and heart plus lung mets) I realized I did not have the energy to make decisions. And that was scary.
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I wanted to make sure you all know how grateful I am to see responses. I have not found anyone here (in town) to relate to face-to-face. Someone in my BrCA support group burst out in tears when I revealed my last dx, so I dropped out. She freaked out a smidge because she was sure this would happen to her as well. I wasn't being dramatic, just objective per my training. What the hey - it wasn't like I was terribly thrilled with the news either. I realized I didn't fit in.
Will try to be concise in future posts. Bless you all for being here!
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Snylander - welcome! This is a great virtual support group, and I hope you feel the same way.
I also have been having trouble dealing with my will and other paperwork, but I know it will be a huge relief when I finally get it done. -
Hey there Latte, thanks for the welcome! I'm planning to listen to the wiser members on board. Promise I'll say when I actually finished up my will. For my birthday, the hubs gave me a will kit, by the way. And I hate it. But I know the other members are right. Real freedom will come from dealing with this responsibility.
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My husband and I have an appointment with an attorney this afternoon to finalize the drafts of our estate planning documents. We are doing revocable trusts with pourover wills, powers of attorney for healthcare and property and a living will for me.
We are also making sure my mother's estate planning docs are in order. She has dementia and I am her only child, so it is my responsibility to handle her financial affairs and all the decisions regarding her care.Despite the dementia, she is healthy as a horse and likely to outlive me. My husband will take over when I am gone. So we are taking steps to get the paperwork is in order, so when the time comes there will be a smooth transition to my husband as successor trustee.
We should have done these things years ago, but it took my diagnosis to get the ball rolling. Whatever happens in the future, it will be a relief to have this done.
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MartyMart, can you tell me a little about the estate planning? My dh and I have had a will and power of attorney stuff filled out since our son was little, and we have discussed funeral arrangements and such in the past year. But I'm wondering what kinds of issues the estate planning deals with, and if we should see a lawyer who deals with that kind of stuff.
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I also second the others when they say taking care of these things allows you to get on with life, knowing your loved ones won't have to deal with so much and make decisions in the middle of their grief. It was actually calming to my husband to know how I felt about some things and what my final wishes would be.
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The Divine Mrs. M - I was fortunate that my mother set the stage about 15 years ago by carefully planning her own estate. I learned about this stuff by administering her affairs, and am sort of following her lead in my own estate planning.
My mother has all her assets, such as her IRAs and bank accounts, in a revokable trust that names me and herself as co-trustees. This means her assets are owned by the trust, not directly by her. She also has given me power of attorney for property, so I can make decisions without her input. When she dies, the trust will pass to me as co-trustee, without having to go through probate. She named my husband as successor trustee, so he can take over if I am unable to.
We have also decided to go with revocable trusts instead of wills. All of our assets (house, bank accounts etc.) will be retitled so that they belong to the trusts rather than us directly.
So one reason we are choosing a trust is to avoid probate.
Another reason is to make it easier on our son, who is twenty, should my husband and I both die within the next few years. At this stage in his life, he would not be mature enough to deal with the responsibilties of inheriting our estate. So we have named a successor trustee to manage the estate until our son is ready (we are naming a trust company recommended by our financial advisor.) We have set it up so he will receive money for education and basic living expenses until age 30, when he would receive half of the assets. Then he would get the rest at age 35.
One downside of trusts vs. wills is that they are more expensive to set up. For us, $4,000 for the trust package, vs $450 for straight wills.
A good estate attorney should be able to explain all of this, and will let you know ahead of time how much it will cost. We chose an attorney who specializes in geriatric law. Because her clients are older, she has a lot of experience with estate matters, and I had already consulted her a number of time regarding my mother's issues.
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I'm not sure what probate is.
Also, you mention the downside of trusts is the expense to set it up. Other than making sure your son inherits what you wish him to, over time, is there another upside to the trust? Do you save on taxes? My son is at an age where he would be responsible for whatever monies he'd get through inheriting, so I can't say if it'd be worth it to have a trust. Hope you don't mind my asking. I realize you're not a lawyer, but that's why I ask just for some basic information. I don't know any lawyer and have a hard time trusting they just don't want my money!
(disclaimer: plz, if any lawyers are reading this, don't be offended, it's just my own personal hang-up).
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welcome sny!!
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I'm not a lawyer either, so keep that in mind.
I was lucky to already have an attorney I feel comfortable with. She has helped several times me over the years with issues relating to my mon's dementia. Her practice specialty is geriatric law, so she has a lot of experience with estate planning. She has always been very fair and up front about fees. I originally found her through word of mouth, and I think that is the best way to find a good attorney.
Probate is the legal process of administering your will. In most cases, you have to go through the courts to do this. That happened when my brother died, and there were a lot of legal fees and court costs involved. There were a lot of hassles, and took a year to wrap everything up.
However, probate may not be an issue if you are leaving everything to your spouse. Again, I'm not a lawyer, so I would recommend checking.
Our main reason for choosing a trust is to make things run smoother in the event something would happen to both of us and our son would inherit. With a trust, not only would he avoid probate, but also he would have a trustee in place to handle decision-making. (In our case, a trust company affiliated with our financial advisor.)
Our son is not quite mature enough yet to handle the decisions involved in inheriting IRAs, insurance money, a house etc. Even if he was very mature for his age, we would probably consider this option. Our attorney told us she has seldom seen it go well when a young guy inherits a big chunk of money with no strings attached.
Under our trust, until age 30 he would get all the income from our assets, plus enough to extra to cover reasonable living expenses and his education. Then at age 30 he would get half of the assets, and at age 35 he would get the rest.
In think there may be tax advantages to a trust if your estate is really large (sadly, not an issue for us.) -
Thanks for the explanation, Marty. I will have to give the matter some consideration.
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Martymari, Your info is great on so many levels. I will add that a Will is an important as an addition to the Trust instruments. The reason is: the trust plans for the items in the trust, it doesn't always plan for the unforseen things not defined. In that case then items not covered would be cast into the "intestate"(died with no Will) category which would be very expensive b/c not only would the unforseen have to be probated, but the court would have to declare who would be the executor . If someone challenged the executor appointment, it can get messy. A Will that covers the unforseen covers it all. Some examples of unforseen, for example,1. You die in an automobile accident and your spouse sues for wrongful death, a judgement is rendered in your Estates favor, but the judgement is not part of the Trust; 2. You die, and a winning lotto ticket is found that you've signed. Either case is messy without a Will. The unforseen covers many other things. Obviously, I'm not a lawyer, but your lawyers will get it, and either recommend a Will or tell you why I wrong. sheila aka sassy
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I'm not to offend anyone here, but I can't seem to find anyone I can talk to about this. My mom died at age 45 after a 7 year battle of mast. bc. and large doses of chemo, rads, hormone drugs etc.~ I never really knew her because she was always drugged. I now have have Stage 2A breast cancer. I am 45. I always thought I would die early, but thought it would be a car crash or something quick. I don't want to take drugs that will mess with my psychy. I don't want to loose time with my 3 growing kids. I've been in 2 major surgeries and have one more to go in the fall. Nobody can guarentee me life after poisoning me so why should I bother. If I'm going to get it again, then I will...if I'm not, I won't...if I take the meds there is no guarentee, but I will loose time with my kids at a time when my daughter (age 14...weird but that's the age I was when my mom died) really needs me to be her rock, not her patient. My husband has trouble cooking meals and thinks it's such a chore. He yells at the kids because I think he's going crazy and can't handle thinking I might die.
Everyone says 'you're so strong you'll get through this'. I'm not strong! I'm just doing what I have to ... inside is very sad and is desparately missing my mom. She fought and fought and fought...she lost all those years fighting and really...due to the drugs...she died years before she hit the ground.
There I said it. I know it's awful. But I don't want to reinact her life. She was an amazing woman. Very kind and gentle and very strong...but that doesn't help stop mast from coming...
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Babs, a few things come to mind. If I understand what your wrote, it sounds like its been quite a few years since your mom passed away. If so, treatment improved since years ago. I had chemo, radiation, a lumpectomy and now take antihormone meds, and it hasn't changed my personality. I'm not all drugged up. Since the diagnosis almost 2 1/2 years ago, I've done so much living and plan to do a lot more.
I don't think you should compare your experience to your mom's. Each woman's 'journey' is different. Please take it one day at a time. A wonderful saying I love is "You don't have to be strong, you just have to show up." Just stay in the present moment. You have much to live for. Be easy with yourself, kind and loving to yourself. You can still have many many many wonderful moments, days, times in your life.
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Thank you TheDivineMrsM, that was very great to hear coming from someone who has bone mets. From what you wrote it's incredibly different. She had it in the mid 70's and finished up in the early 80's. I heard meds have come a long way, but from what you described...well WOW!
I will take your words to heart and you will be my new reality of it. Thanks...I really needed to hear it.
Between you and a therapist I seen today...I'm actually in a much better space then I've been in for awhile. Thank you again...and life goes on...
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Yep. It is a stage iv dx. I take a mild anti anxiety medicine and I am moving forward with my life. Yes, you will have rough times. You can get through them and move on. You don't have to be strong, but it may happen that after you go through something like this, it ends up making you stronger in some ways.
One important thing you have is this forum which can offer worlds of support that your mom probably never knew. One of my doctors told me not to surf the internet because I would scare myself. So I don't research bc. I get great information here, it's my main source of help and support.
God bless you on your journey. Hang in there.
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Sas-schatzi - you're right. We have wills in addition to trusts and have named a trusted relative as executor. The attorney called them "pour over" wills. Anything not already in the trust is supposed to automatically pour over into it.
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Marty, When I saw your post with the mention of a"pourover Will" I figuired that is what it was, but didn't want to assume. What's need here is a solid definition for a POUR OVER WILL. Since you have one, I elect you to describe LOL.
I have a Will, everything else is by tod/pod and deed I have to review --Duh meant to do that. I've talked Trusts since the 80's while in my 40's. Trust are the top protection of assests, absolutely.
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Sas-schatzi- basically, the will leaves all personal property that is not in the trust to the trustee of the revokable trust. The purpose of the will is to get anything that might have been missed into the trust.
It's in the trust itself where we spell how our estate should be distributed. If one spouse dies,the other, as co-trustee, gets it all. If both spouses die, it all goes to a successor trust for our son. If our son were also to die, we have named some relatives to be next in line. -
Marty, we are saying the same thing, If you have a Trust have a Will too.
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My partner and I have had both Wills and Trusts for several years. It was a bit of a pain to organize and arrange the Trusts, but now that it's done, we're happy we took the time and spent the legal fees. I've since found it's a pretty simple matter to make ammendments to both if necessary.
Tina
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Babs15,
I agree with The Divine Mrs. M! Cancer treatments have changed dramatically since your mom took them. I had cancer the first time in 1987 and the treatments were terrible. I was sick. Stayed in bed a lot. All the while trying to raise 5, 6, and 11 year old children. Thankfully, the treatments worked and I am still here, though after a 20 year cancer hiatus, now in my 5th year of dealing with stage IV. I find my SE's very manageable and live a full life. I did go on disability 2 years ago because chemo was causing me to miss too much work and I just felt better being able to rest when I was tired. I travel as much as I can in between treatments, mostly visiting family and friends. You have much living to do and with all the pre-treatments given before chemo I don't think you will find the treatment as debilitating as it was to your mother. They also try to start with AI's which is basically taking pills. SE's vary from patient to patient but I found them tolerable other than neuropathy. Anyway, my advice is to give it a try. If you find it to be too much, you can always change your mind! Best wishes and hugs to you! -
Glenna E thank you for sharing. I'm tired. I'm tired of the whole thing... Think it 'really' matters if I come back to thinking about it in the fall?
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babs,
Maybe give yourself a couple of weeks to try to get your head straight. My onc has given me a couple of chemo breaks and it makes me crazy nervous. I don't know if I could wait til fall ( but that is me). I do feel you will find the SE's nothing as bad as those in the past! -
when mine wants to give me breaks I say no, I decide when the breaks are...
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Good for you Blondiex46, I just do what my mo says, maybe I need to be a little more proactive and involved in my treatments.
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I have a friend that doesn't know anything, and doesn't want to know....that drives me crazy, lol.....I finally got her to find out whether it was stage 4 cause there are alot grants she can get and you can apply for SSD and it is automatic...I run my treatment, not really controlling but am where this was concerned!!
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SSD is not automatic. It's expedited, but there is no guarantee she will get it.
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Macyhen, there are many patients who just do what the doctors suggest. There is absolutely nothing wrong with that. It can relieve your anxiety. We had a young man in our office with terminal liver cancer who couldn't tell me the name of the chemotherapy drug he was taking (which I've now decided was Xeloda).
My boss (a doctor) told me that actually most patients are like him. However, you won't find very many of that phenotype on this board. Women to gravitate here are the type of people who want to know more and want to understand/be in control/make decisions.
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I was told it was automatic sorry
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pajim, I agree with your post. This site has helped me become a better advocate for myself when it comes to health care, and to be more assertive (polite but firm) when it comes to dealing with medical personnel. It's also helped me speak up for others. When my DH took a trip to the ER for possible pneumonia earlier this year, I stayed on top of what was going on by asking lots of the right questions to the different employees who took care of him. If it were just him, he kind of just lays back and accepts what they tell him and doesn't like to make waves. Ask him what kind of antibiotic the doctor gave him and he won't know! (---!)
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I am a good mix in between from knowing everything to knowing next to nothing.
I know all my medicines, why i take them and what are the possible SEs (nothing possible about it LOL seems i am getting all of them with this chemo this time!)
But after my last recurrance i dont care to know anything that pops up on the scan unless it is effecting my physically.
Mrs M- Yes! this is an awesome place to learn how to become a better advocate for ourselves! Lots of GREAT info here!
Blondie- SSD is "automatic" if you're stage 4 in the sense that you are automatically concidered "disabled"- now getting benefits is an other story! SSD- need the right amout of work credits. SSDI- Need to be low income. This is a basic analysis- just meant to simplify
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Besides having work credits SSD can also be drawn on spouses work record if spouse is deceased and one is the age of at least 50.
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Once again, you are not automatically considered disabled just because you are Stage IV. There are a number of people who have been denied disability even though they had all the proper credits. The panel decided that they were capable of work in spite of their diagnosis.
Seems cruel, but there it is. :-(
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Not posted here before :
We have wills, power of attorney but I don't think we have enough to ever think of a trust so that has never come up in discussions.
Here we have two different approaches to funerals evolving. One is that there is a private ceremony, say in the morning, and then later in the day there is a memorial service with receiving & reception afterwards.
Second approach is one others have mentioned. Receiving is at the church and then the service is held with burial afterwards.
I like the first approach of a private family and close friends burial with the service later, and after the service the receiving and reception. It really comes down to what is most comfortable for my family. My mom and brother have both gone to the funeral home and picked out their casket, paying for the burial cost. I haven't done that yet and not sure if I will. We do have burial plots. I have thought about my service - hymns, choir specials (I belonged to the choir and it is common to have the choir do some of their songs that have touched the person) and scripture that is special to me.
So guess, I haven't really done very much planning. I do need to decide who gets what pieces of jewelry that have any value. Just so easy to put it all off when you are in treatment, feel bad and then on the good days you don't even want to think about Christmas.
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Taken from the SSA's website
WHAT DOES “DISABLED” MEAN FOR AN ADULT?
If you are age 18 or older we may consider you “disabled” if you have a medically determinable physical or mental impairment (including an emotional or learning problem) which:
results in the inability to do any substantial gainful activity; andcan be expected to result in death; orhas lasted or can be expected to last for a continuous period of not less than 12 months.SSA has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards. The Compassionate Allowances (CAL) initiative allows Social Security to target the most obviously disabled individuals for claims approval based on objective medical information that we can obtain quickly. Fifty medical conditions were initially selected for this initiative. Since that time we have added 150 additional conditions bringing the total number of conditions to 200. The list may expand over time. A complete list of CAL conditions may be viewed online at: http://www.socialsecurity.gov/compassionateallowances/conditions.htm.
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Oh yes forrestdweller- As i am only 30 i tend to forget about spouse death as one of the qualifiers, although a spouse's death can give you benefits before you are disabled.
Susan- Since the SSA states on their website "can be expected to result in their death" stage4 sadly will result in a majority of our deaths. I dont know the circumstances surrounding their denials but I do know sometimes doctors can word their paperwork they are required to fill out in a way that seems that we're just dealing with the equivalent of a hang nail. My oncologist is the one that suggested I apply, it hadnt crossed my mind before that.
I had a friend with MS that was denied SSD because she had "good days" among her many bad days. Sadly most jobs wont let you take off work because you cant even get out of bed. But the SSA seems to think so!
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It is the first blue bullet that has been an issue for some women, as I understand it from talking with these folks. I have no skin in this game at this point. Just reporting what is happening out in the field, so to speak. *susan*
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I get SSDI but not SSI wonder if I should apply for that one.....I didn't qualify for it before cause twins got it but they aged out and do not qualify for it anymore....have to check....
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susan- BTW everytime i type or read your name i think of the mosters vs alien cartoon where it goes "Suuuuuesan" (think of boo like a ghost would say)
Okay anyhow, yes thats what i mean by what the drs write in their reports. they could be minimizing the patients symptoms. i know with the amount of time i am down because of tx any job would fire me in a heartbeat. i normally nap during the day so i have energy to be with my kids after school and night time...
i dont personally qualify for it due to income (but it cancels itself out as my medication costs more than my husband makes a month but they dont give a crap about that) i should appeal but dont have the engery to deal with them.
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Texas, I don't know that reference. Will have to ask my kid! *susan*
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I've been reading this thread little by little and wanted to share. Last year, my 48-year-old brother died suddenly of a heart attack. He was a single man. I decided to buy a cemetery plot in our town and had a slanted, two-stone marker placed. One side is for my husband and I which we had engraved with our names. On the other side, we had my brother's name and date of birth and death. It took a load off my mind to know my children and husband will not have to deal with any of that. Yesterday, my husband and I went to the cemetery to place flowers. I looked at him and said "did you ever think we'd be putting flowers on our own graves together?" How many people get to do that? It was kind of funny......in a weird way! Jean
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thanks bon
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wow, it sure is very expensive to die in the US. Lucky I am I don't pay anything, but the grave I choose, everything else handled by the municipality..yay??
Ebru
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Blondie-hello, there have been many very useful posts in between yours and mine. SSD is all over the map. It all depends , but shouldn't depend , on the reviewer. I know they have guidelines, but ........when two people apply and one is approved and one isn't, and the cases are identical, nothing different(redundant),with two different case reviewers, one approved--one not. The system is screwed up. The worst case scenarios , do most uniformly get taken care of. It's trouble when less than worst cases are at the reviewers descretion. Know anyone in that position, advise them to get a good ssdi lawyer sassy
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Stagefree, the municpality pays b/c of?
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I do get SSDI but not SSI got denied but the twins were getting SSI at the time, they don't now, and my only income is the SSDI...thought maybe I should apply again...
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A small correction. SSDI is Social Security Disability Income - the one most of us get. SSI is Supplemental Security Income which is only available for low income and is in addition to SSDI.
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I was reading about SSI and found that if you have any assets like stock accts or savings, even 401K's, you disqualify no matter what your income is. I would have liked to get this because in a couple of years my son will not qualify for SSDI due to age and no more child support. It still looks like I won't qualify. I may qualify for reduced rent but many places here only give out a few appts at greatly reduced income levels.
If you have qualified for accelerated death benefits, know this is not taxable. I believe other assests or income passed on is taxable and worth looking into a trust for that reason as well as not getting tied up in probate.
Terri
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(Miss you Ma, and so many others of our IV ladies. My emotions are matching the "blah" weather out side my windows this Memorial weekend.
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Jean, sorry to hear about your brother- the putting flowers on your own grave- I love it! We absolutly have to have a sense of humor!
Bon- thanks for the info
Stagefree- yeah here in the US they try to make a profit on everything!
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Yep I know and I am low income, only get SSDI
finished my application, we will see if I qualify if I do then ok if not then ok....I have nothing and don't own anything but my car...
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I have already done most of the suggestions in this article, but your online world needs a plan too.
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Susan, I've been on this thread since the beginning, You've brought here something NOT previously discussed, Virtual property, this is one of those Duh moments. Yes we or some may need it. It would be nice if BON could add it into her list on pg 25(26).
BON yoo-hoo what do you think?
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I put in for my SSD in October online and I was immediately approved. Got Back Pay and everything. I guess it's easy for some and harder for others. I believe that if I would have applied in Cali. I would still be fighting to get my benefits.I was denied SSI./p>
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I was very nervous about opening this post as it makes everything so real. I believe in heaven and that it is a wonderful place but cannot adjust to the fact that metastatic disease will take me away from those I love on this earth (my son, my husband, my parents). My therapist is getting me to open up about dying so I don't stuff all my emotions down. I am a very rational, logical person and not very open with my emotions. We started with discussing if I had things in place like a living will. Being logical you think I should but it just makes things seem all to real. I guess I just want to make it easy on myself and let everyone take care of the difficult stuff when I go. I feel that if i take care of it now I will keel over the next day. I am a very superstitious person. For many it brings peace of mind and I know that is how I should look at it. It is helpful to get my thoughts down but very difficult thinking of my son without a mother and having my parents lose a child. The one comforting thought is that someday we will all be in heaven and this will just be a spec in our forever life. This board is a great place to get feelings out in the open. I appreciate that as well as seeing how open everyone else can be. The strength of others amazes me.
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This thread has opened my eyes to things that I should be taking care of while I am still feeling well. I have printed out all Bon's suggestions as well as the recent post by susan_02143 about cyber accounts. I even had the courage to discuss with my DH over dinner this evening that we should look into buying burial plots, so that whichever one of us goes first (probably me, but who knows) it will be one less burden placed on the other.
I actually think that planning makes it easier to face the inevitable, whenever that may be, and I thank ma111, who is smiling at us from above for having the courage to start this discussion. God bless ma111.
Diane
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Hi folks dropping in with some links that you might find useful. Store away to pass around:) sassy
Someone mentioned CancerandCareers on the financial forum. GREAT web site for all things employment Thanks. I added it to my thread for newbies Just diagnosed -get prepared. Also, found another web site today, that I have included the link for, it is evrything you would like to know about saving money on drugs. The question and answer below the links are in regard on how to make the system work for you re: meds received in a cancer center.
Edit:6/6/13 Found two new web sites that are a must to review. One is on saving money on drugs. Start with 'home" page , then the really helpful page is the "About Us" Pg. Link is to home pge.
This next link is dedicated to most of the need to know info regarding work and cancer. BCO has much information on the main borad, but this link is much more expansive
HAVE A CALL OUT TO MY RESOURCE PERSON:If you bring in the coupon taken from the web site to the cancer center, will/can it be utilized to help pay copay ANSWER to question NO.
Per my resource: This is how to make the website work or other resources work for you while receiving cancer meds in a cancer center, SPEAK UP and let them know you need financial help, best to do when you have initial contact with CC. What they then do, if they are connected like mine, they go through their resources the same we would, but would be contacting as a a provider. Grant money or assistance can be available under all kinds of circumstances. Do not assume you make too much money or b/c you have insurance, money is not available. If say you get turned down initially, recheckin should circumstances change.
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Bon - sounds like a hoot. I'll have to check it out.
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Hm...Bon, sounds interesting.
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Professional mourners have been around for a long time. On a recent visit to Rome I noticed that many sarcophagi of the wealthy and influential were decorated with bas reliefs of elaborate funeral processions. Here's a description of practices from SPQR Online:
"Funerals were generally organized by professional undertakers who provided mourning women, musicians, and sometimes dancers and mimes. For the poor, funerals were usually simple, but for the wealthy and especially the illustrious, the funeral was fantastic. Marked a procession through the streets of Rome, mourners paused in front of the forum for a ceremony of laudatio, where the deceased was displayed, normally upright, and a eulogy was read (the laudatio funebris). During the republic and earlier empire part of the procession was made up of the deceased's family, all wearing masks of his ancestors. Those wearing masks rode in chariots as a prominent part of the procession. This right, however, was restricted to those families who had held curule magistracies. The procession continued outside the city to the site of the burial or cremation."
(I confess that I do like the idea of a parade!)
Tina
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The latest issue of TIME magazine (June 24 issue), has a very interesting and informative article about cremation.
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It's definitely good to talk about these things now while you're healthy, rather than to wait until it's possibly too late. In my mom's case, she NEVER wanted to discuss her death or dying under any circumstances except for one very short conversation where she said, "I want to be cremated, not buried... you guys can spread my ashes at the botanical gardens and keep a little for yourselves... don't want a funeral or anything sad... have a party or a cookout or something."
Thank God she told me that because when she died a couple months later, we were at least somewhat prepared with what we needed to do. Unfortunately, nothing else was planned. There was no life insurance, no funeral homes pre-planned, no organized family contact list, nothing. Luckily we managed to pull through but now that the dust has settled a couple months later, we're still trying to figure out where mom left off with bills, credit cards, investments, etc. What a mess.
Anyway, that said, I know mom did it this way because it was all she was emotionally capable of doing. She was unable to emotionally bring up death or dying, or talk about final arrangements, what to do with her finances, etc. PLEASE, don't do this to your families... they will have enough to deal with emotionally when you are gone--adding to the stress by not planning anything will just make it harder on them. If you are unable to talk about it, say that to your family and perhaps write down your wishes and put them somewhere where your family will know to look for them.
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Hi All,
In the June issue of the AARP bulletin, there were a couple of articles which may be of interest to some of you. The first is titled "Guarding the Fate of Your Digital Assets".
"What happens, after you die, to the information you have stored online? If it is on YouTube or in accounts such as GMail or Picasa, you can use Google's Inactive Account Manager to be sure it all goes where you want it to go.
The new feature allows you to give your consent to transfer data -- such as stored emails and family photos-- to your executor or other designee. For your loved ones to retrieve your data from Facebook, Yahoo and other online services, you should authorize your executor to work with those services to transfer your stored information.
Other services such as Legacy Locker and Planned Departure will encrypt and hold your various account passwords. But you'll still need an authorized executor to ensure your assets go to the right place." -by Christina Ianzito
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