Getting organized before we die

ranD · April 2009

Saint,

thanks for the kind words....this is my definite day of crying and feeling sorry for myself. If I could get the lung issue resolved so I could breathe and not have to go in and get drained every week, I woul dbe better. BUT, the bright side is that once they drain, I do have 3 days of great normal me followed by 3-4 of progressively worse. I have my 17 yo graduating in May and I plan on seeing the 6 yo old graduate!

SOme days that seems as reality, other days it makes me sad. So, I will rely on God...I found a passage in psalms that says be strong and courageous....our bywords for our new normal!

randie

saint · April 2009

Hugs randie---we GET IT! Hope it helps to know that!

Be well & stay strong

ranD · April 2009

It helps...just wish so many of us weren't on the boat together. At least there's company.....randie

NYCarol · April 2009

Randie, have the docs considered putting in a more permanent drain? Or possibly using the powder to help stick your lung to the pleura so it is less likely to fill up with fluid? A painful procedure, BUT it can really work well for some of us.

Enjoy that graduation next month!

Carol

dreamwriter · April 2009

Randie - the draining procedure is called a thoradesis. Which translates into draining the thoracic area. The next step is a pleuradesis - purposefully irritating the two membranes so that they stick together like two pieces of saran wrap. This can be done with talc and with a chemo drug called bleomycin (the chemo that Jack Nichols was on in The Bucket List). Once this happens, your breathing should be immediately better and stay that way. The pleuradesis has to be done by an oncologist or thoracic surgeon because they are handling chemo drugs. I have had both done and found the talc to be my best fit. The fact that after draining, you have some relief shows that this is the problem and should be treated as above. Now in the states, I believe the delay is proving that this procedure is necessary and therefore covered by insurance plans. Perhaps you can speak to your oncologist regarding this process.'

If there is anything I can do, anything I can say, to help you along this journey, please please let me know.

Fllorik · April 2009

so I went to the funeral home and cemetary to start planning. Boy, was that hard! First I was shocked at the cost of everything and then all the decisions that have to be made!

Has anyone "shopped" around when looking at funeral homes?

Analemma · April 2009

Lori, have you read the transcript from Living beyond Breast Cancer, on end of life decisions? It has a bit about shopping around for services.

I have filled out my body donation forms with Cleveland Clinic, and they will transport my body, use it for teaching or research, and return ashes, for free. I'm so thrifty that I can't stand the thought of wasting a body.

http://www.lbbc.org/data/transcript-file/LBBCendoflifeconcerns08.pdf

dreamwriter · April 2009

Fllorik, I went to the funeral home and got an eyeful. Then I went on line and found several inexpensive options.

1) You can donate your body - but check if you are over 180 lbs they may not take you.

2) You can provide your own earn, something ceramic.... about $200 vs $800-1000 for Funeral Home one.

3) You can go directly from hospital to crematorium (no viewing) or rent a casket so that viewing can take place. The funeral home will not offer this information but they do do that. They are counting on your grief to further the expensive notes.

Plan each step carefully and your could reduce the cost from arount $1000 to $600 without appearing cheap.

NYCarol · April 2009

I decided to be cremated so I did some research. I want to be cremated in a cardboard box because whatever you are cremated in mixes with your ashes...the cardboard box will add very little weight, whereas a pine box adds quite a bit. I would like a Memorial service ...short and sweet...no viewing....just a few words by family and friends. I would like some pictures to be displayed on a screen...moving. showing me with family and friends. I hope to get this prepared ahead of time on a CD.....They often do this at weddings. I have already talked to the gentleman at the crematorium and he gave me the advice about the cardboard box. My only question now is should I get cremated before or after the service? I've never been to a cremation.

Oh, and I want Elvis and John Lennon songs

ranD · April 2009

Ok, scheuled for plueradesis on Tuesday. A little apprehensive, especially since this week's newest symptom is a panic attack in the middle of the night. I wake up and my whole body is shaking, it starts with my legs and then works up to my arms. he first time this happened was about 10 days ago when my lungs filled up and I had trouble breahing. We ended up calling 911 and they rushed me to the hospital and tried to get me to calm down with morphione...lol...that just made it even harder to breathe, and then someone gave me some ativan and within 10 minutes I was stable.

last nights attack happened in the middle of a dream,lol, I was tellling off some lady who was yelling and ignoring her kid and explaining how much I would give to be able to be with my kids again, when I woke up shakiing. i am starting to think that somehow my body is producing too much adrenaline if I stress even the smallest amount. Anyway, stuckthe ativan under my tongue and 10 minutes later alll better,

Now I am starting to feel like some psycho who has ensane panic attacks for no reason, I have never been this way before, I am usually pretty even keel, but lately i think its starting to get to me. The thought of 10 days in the hospital and 10 nights without some family member there is pretty scary...any thoughts?

It probably doesnt help that I have to get the advance directive and my will updatde tomorrow as well as thinking about what to write to my 6 year old. He's the last in the letter series, but when my 22 year old and his wife heard what i was doing they wanted one too....so now i have to find the time and I just am not in the "mood" and that makes me feel like a crappy mom . I start thinking the last time for me to do this and the last tiem for that.

i know the surgery has a higher success rate in the 70s, hell that is better then chemo, but then I start worrying about the pain, the doc just kind of said there are meds for it...great, but what can I expect, he just siad everyone is different..errrrrrrrr...

I This is sucha total whine letter please forgive me...but it just keeps coming out onto the keyboard..lol..

Sorry I stuck this post here, it really belongs in the other one...oops...

end of rant, randie

ranD · April 2009

moved it to where it belonged sorry!!!

dreamwriter · April 2009

If you are cremated before the service, your urn will be displayed... which seems to help mourners to connect, and say their last words to you. After that you can have a simple ceremony with photos and stories. If you wish your loved ones can have a buffet set up and people can mingle and eat and talk about you....hopefully all the nice things you have done.

flash · April 2009

Another option for some is to do the "Neptune Society." It was originally developed in Florida but they will do other areas. My MIL had everything set up with them and all that had to be done at the hospital was call the number on her card. The Neptune Society took care of everything the way it was set up and it made it much easier for us as survivors. We had the party she requested knowing her ashes were being spread on the ocean exactly where she requested while we watched a dvd she set up of her joys of life.

saint · April 2009

I may have already posted this--but when dh & I checked out the cemetery we chose a companion niche in a wall (for ashes.) The guy there was really neat & gave us an idea. Since we can have our ashes in ANYTHING inside that niche, we are having urns made from our headboard (the only bed we have shared for over 30 years) kinda neat symmetry there! We even learned that we can have ONE urn made & our ashes will co-mingle thru eternity! LOL

Brenda---your "thrifty" comment made me wet the bed!!!!!

HUGS all-be well & stay strong

EWB · April 2009

Hugs and kisses Saint!

EGAL · April 2009

No one knows (as I call it) our "expiration date" so when I was dx'd as Stage 4, I convinced hubby to get our wills updated. We did that, I put my car in his name, created my living will, we added our adult daughter to the safe deposit box and I have typed a letter to my family and friends to be read at my "memorial service". I don't want a wake or a funeral. Hubby (devout Catholic) is dead set against that but it is my choice. I want to have my body donated to science so maybe it can help find a cure. I haven't planned for that yet as I don't know where to start. If anything is left (sorry, that sounds morbid) I just want to be cremated. Also, I have been reading obits in the newspaper and know what I DON'T want said so I am writing that also. It is liberating to know that I had a say in what will happen, even if it doesn't happen in the near future. I am praying for that!!!!

dreamwriter · April 2009

Saint that sounds so appropriate since you used the expression "screaming the paint off the ceiling". How amazingly vivid that is. I am far more sedate.... i would whisper the flame from a candle. So having you and hubby mixed together in your headboard is absolutely the right way to go. I wish I was as creative. Im still thinking a ceramic angel. But too lazy to actively find one.... teehee.

I started today in a four year study for bone density. I had the usual bone density test done. Then one that was only for ankles and wrist. I showed up at one hospital for the bloodwork and the urine test. And as I sit there I say... well I will see you tomorrow for a blood pull, so the nurse goes and checks and says, We can do it now. And then left it in for tomorrows bone meds.... so now I get to sleep in and get there for noon...... Sooooo helpful. The bone scans were in another hospital across the street - sharing resources.

Got to go it is $.50 Baskin & Robbins day..... first ice cream of the season

saint · April 2009

HEY! I forgot today is B&R's special!!!!!!! :>{

I expect you to be here to finish that study & BEYOND!!!!! HUGS

Be well & stay strong

dreamwriter · April 2009

I enjoyed the black cherry cone - slurp.

MJLToday · May 2009

Regarding safety deposit box.

Be sure that someone else's name (other than you & your partner's) is on the safety box's signature card. The box is often "sealed" on a person's death, so your heirs can't open it until the will is probated

dreamwriter · May 2009

That is good to know. Thank you MJLToday.

pookie61 · May 2009

Has anyone discussed their medical power of attorney with their oncologist? In a transcript I read from a living beyond breast cancer session on end of life issues, a nurse advised that you discuss medical interventions that you might not want to have at the end. Tomorrow I am planning on bringing this up with my doctor.

If anyone did this, how did it go? Don't want to offend anyone, but I am looking for a sort of laundry list off possible interventions that could take into account liver or lung failure, etc. I don't know if this is possible, or if I should be discussing this with a palliative care team.

I think getting this document done might bring me some peace.

Take care.

dreamwriter · May 2009

If you pre-plan where you wish to go when you are in final stages then they may already be advised of your wishes before you come through the doors. This being set up in advance takes all the pain of family having to decide what your wishes are. For instance, hospital palliative care - you are consided DNR (do not resusitate) and NHM (no heroic measures). However other details must be your decision - such as IV - is it for medication only (no hydration). If you dont stipulate it, then they will hydrate you.... delaying the inevitable. This can be set out in the living will and you simply give them a copy. I choose two places (are allowed 3) so if my first choice is not available, I may go to the second choice until a bed opens up. Or that hospital may keep me in emergency until my bed opens up. The hospital, since it is set up, offers respite care where I can go there to have my pain medication stablized or changed or simply to give my family a rest from caring for me (a couple of weeks). The one that really stood out - my cat can visit and if ok with roomies can stay for the duration. They have the visiting dogs (they will give me warning to shut the door if cat is there).

pookie61 · May 2009

Dream,

Thanks so much for your post. I did speak with my onc yesterday, and she gave me a list of procedures to put in my medical power of attorney. She also said it might be a good idea to start talking to loved ones about my preferences, and that this should be done at least several times. She also reassured me that she would initiate conversations with both my family and myself if needed, and told me about a palliative care area in my treatment center that would help when the time came.

We had a great talk and it was not as hard as I imagined. I feel good about opening the door.

Take care.

dreamwriter · May 2009

Pookie = Way to GO!!!!

It is never any harder to open that door. It gets easier each time. And you feel better each time.

sparkie · May 2009

Thanks all of you for this wonderful thread. DD is now on hospice, but is totally unwilling to talk about end-of-life issues. The only prep she's made is to complete an advanced directive (after completing and tearing up several). Any ideas on how to initiate dialogue? She's a single mom, and will leave two of her three minor children without a parent. She has said she wants us to raise them, but she hasn't made any preparations for them. I think the uncertainty is adding to their anxiety.

dreamwriter · May 2009

Sparkie.... I would think that she should put in legal terms her wishes that the children should be going with you. Even if you are their only kin, it should be documented. It doesnt have to be a full Will, but a letter signed by two witnesses to her signature would probably do. Just to keep social services away from the door.

Fitztwins · May 2009

I plan on having a little conversation with my doctor. He told my nurse he didn't know 'when' he wanted to order my next scan. It will be six months in 3 weeks.

For me it is all about the planning.

sparkie · May 2009

Dreamwriter,

We have had a paper signed and notarized giving us permission to make medical and legal decisions for the children now. The document includes a statement that she wishes for the children to remain with us should she die. It's just a document I pulled off the web in lieu of something more permanent. Not sure it would hold up in court.

saint · May 2009

sparkie--for the good of the kids you may need to push her to make it all legal. Try not to feel that that is disrespectful of her wishes. Right now she isn't thinking straight & you may just have to bite the bullet & make it happen. In the end it's the kids you need to think of & if it doesn't happen there are too many legal horrors possible that shouldn't happen to any of you------them loosing their mom & you, your dd will be bad enough on all of you--tell her you all need the peace of mind & security making it legal will bring (she will feel better after it's done too)

I can tell you that it took me years to agree to make a will. In hindsight I think it was: Making it legal makes it real! Sorta like forcing your mortality down your throat. Nothing worse than actually saying "If I'm not here this is who will raise my kids" No one should have to do it! Unfortunately, waiting could be an enormous mistake......sorry! HUGS

Be well & stay strong

Getting organized before we die

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