Joining the ranks of Hospice

LinTol

I always wondered how I would know when it was time.  Time that I was done with chemo, radiation, surgery, etc.  Well, my body told me it was time.  There is also nothing else that could help me.  Also found out that I have a lesion in the brain.  Oh well

 Mr Liver is my issue.  I battled against him for 5.5 years.  So many different treatments.  I must say I am surprised I made it this long.  Back then, I wondered if I would be able to take my kids to kindergarten.  Not only did I do that, but they are in 2nd and 4th grade now!  Amazing. 

 I am not even sure what to say right now, except that I should be sleeping.  If anyone has anything to share about hospice, including how long yoiu have been with them, I would love the company.

 Thanks!

jeanne46

I'm not with hospice yet, but have already interviewed two organizations and plan to talk with a third one. I want to know which organization to choose when the time comes. Am not ready for hospice this minute, but that could change very quickly. In California, you must have a letter from your doc stating that you "qualify" for hospice. Having just gone through this for two days with my mom, I saw first hand what they do, Generally you have a team comprising of an RN and an LVN, who take turns coming to visit you and assess your condition (usually once a week for each for 30-60 minutes. Then there's the social worker who also comes out once a week or so to talk with you about how you are feeling. There are also helpers that can come once or twice a week to help with showers, if you need that, and who can also change beds and do some light housekeeping. I imagine the longer you are under hospice care the better you come to know and and trust your team. Chaplains are also available to you.

They also handle all your meds - and are available 24/7 for urgent matters.



There are some excellent questions to ask - which I got on the Internet (questions to ask hospice representatives) and further, my preference would be to sign up for a non-profit hospice org rather than one which operates for-profit. Depending on your needs right now, you also might consider finding a good pain management doc. So much depends what's available in your area and what your insurance covers,



Best of luck finding the right options for your situation. I also discovered that, if at any time you want to change hospice facilities, you can do it with no obligation to the former hospice.



Hope this has been a little helpful. Jeanne

chrissyb

I'm not with hospice, nor am I where you are. I just wanted to send you the gentlest of (((((((hugs))))))) and hope for you that your time with them is calm, caring and pain free.

Love n hugs.  Chrissy

Moderators

LinTol, you're sure to hear from others who can give their personal experiences, and of course support as you make this transition to hospice.

There is an article on the main Breastcancer.org site about deciding to stop treatment, which may have some useful information for you:  http://www.breastcancer.org/symptoms/types/recur_metast/stop_treat.jsp

Judith and the Mods

thatsvanity

Hi Linda,

I love Murrieta valley hospice who helped my sister and me. My sister had palliative care and oncology treatments at the same time. Palliative care was provided through hospice, but it was only about 4 days of complete hospice without any resolve to try more treatments. My sister, Kara, was too sick to go to the doctor. She tried her best and she is the bravest sweetest person I know. I was amazed that all medications were delivered to our front door free of any charge. Also the doctor with hospice was the most special, kind wonderful man my sister and I had ever met we both loved him very much. I don't think hospice means the end but a change and comfort to everyone in the family. I felt like hospice is a journey that is a blessing for everyone involved. They make life seem natural in the midst of a very emotional experience for everyone. I think you are brave and smart. I pray for the best for you and your precious family.

Amy Lynn

Leah_S

Linda, I know this was a difficult decision for you.

Everything I've heard about hospice is good. It takes a special person to want to do this kind of work, and there are a lot of special people who do. I wish you good luck in finding the hospice group that is a good "fit".

I wish you peace.

Leah

angelsister

Hi leah, i hope you get the hospice service set up really soon and that they take really good care of you. I don't think it'll be many weeks until we start hospice services for my sister. Much love and peace to you and yours x

Suze35

Linda,

My thoughts are with you as you take this next, brave, step in your journey.  The men and women of hospice are such angels, and can offer so much comfort and caring.  I will say that the loved ones I have known who have used hospice found they were happier, more comfortable, and more at peace with their lives than they had anticipated.

I am not at the same stage of my treatment, but it will likely be within the next year given my disease.  I hope when I do reach this point, I can do so with the grace you display.

Hugs, and please keep us updated.

Susan

penny4cats

Thank you for your post which reflects such diginity and grace. i was able to attend a bcrecovery.org metastatic breast only retreat this past September. We are all following in each other's footsteps. Some of us are a little ahead but we all get there eventually. There is a womens magazine published about wisconsin women i think the title is brava. the ocotber issued featured a women who has decided to end treatment and live out her remaining time naturally. I have been in pain and palliative since my stage 3 dx and continue on since mets and stage 4 now. I have also found Marissa Weiss book living well beyond breast cancer does address end of life issues including a brief discussion about if an individual chooses to end life earlier. I wish and your family the peace, love, and healing. I know Reiki practioners as well as massage therapists are willing to be with us as we tranisition from this place to the next. All those who do this type of care feel it is a tremendous priviledge to be with us and our families. I only wish this had been available when i lost my mother but feel her final gift was my being with her and seeing that death is not to be feared. I can only hope to be so courageous when it is my time to leave my son and daughter. thank you for your post.

LinTol

Thank you so much for all of your comments!!  Hospice did start right away, and they were able to get me what was needed.  They brought a hospital bed, which we put in the dining room- great for naps and resting during the day.  I try to only go up and down the stairs once a day.  The only thing missing on the main floor is a shower.  My master bedroom is also a perfect set up.  I really don't mind people coming up here, especially since I am more comfy laying in bed.  And we borrowed a smalll refrigerator for cold drinks. 

The nurse comes about 3 times per week, there is another woman who comes for showers (Idon't need yet, light house keeping, etc.)  I really was not crazy about her, but the nurse told me there are 2 others that do the same thing.  and one of the most important things for me is that there is a Bereavement counselor.  My husband and I spoke to our girls first, 7 and 9, and then they met the counselor very casually, and then again a little more formally, but all 4 of us were involved.  This is the stinkiest part, but we will find a way to get thru, somehow.....

 Jeanne- great idea to look into hospice companies ahead of time.  I have a friend who used to be a hospice nurse, and recently helped take care of a friend.  She was very happy with the place we are using, so we went with it.I still need to look up the list of questions, I am sure it will only make me feel better.

 Chrissy- thank you for the hugs!

 AmyLynn- thank you for sharing your experience! 

Leah-  I agree, it does take a special kind of person to do this type of work, which makes me appreciate them even more!

cynsister- I will be praying that your sister is doing better.  any chance for more treatment? or does she feel done?

susan- I hope you are a long way from hospice.  Just keep on fighting and doing whatever you have to do!!! Good luck!

penny4cats- thank you for the compliments and your beautiful post.

I will try to keep up-dating.  Thanks again for all of the support!!!!

Linda

chrissyb

Linda, I am so glad that you have gotten everything set up so it's easier for you to manage and it happened in a very short space of time.  Thank you for your update it is really appreciated by those who sit with you.

Love n hugs.  Chrissy

jeanne46

So good to hear from you and to know that your hospice organization is working out well. I wish you many many sunny bright days and special family moments. Keep posting when you feel up to it.



Gentle hugs.

penny4cats

Dear Linda, Thank you for your post. Were you ever a braveheart sister? It would have been fun to zipline thru the trees with you. I will be thinking of you and sending healing hugs. Thank you for being the kind of sister who is able to share her journey with us.I can feel your grace and dignity.sincerely penny

reesie

Linda,



It's so wonderful of you to share this part of your journey with us. I hope I can show the same grace and dignity when it's my turn to make these dexisions.



I hope you are able to spend some quaiity ppain free time with your family.

LinTol

Thank you for such positive messages.  i am really not in much pain.  I have had a lot of fluid in my stomach (think 9 months pregnant) but I had it drained last week and with the help of water pills, my stomach is still down.  this is a big relief.  My biggest problem is that when I do anything, after 10 minutes or so, I start to feel so fatigued that I feel I may pass out if I don't lay down pronto.  I also feel nausious and very uncomfortable.  It stinks because my blood counts have finally come up to normal!! and I sometimes feel I have more energy, as long as I don't really do anything. 

Penny- I have never been a braveheart sister, but have wanted to zipline for a long time!!

ma111

Linda,

It's nice you posted this, I am not far off from needing hospice. I do have a pallative care doctor that makes me feel better and I am on my last chemo. My counts were too low to recieve my third one. I have a ranch, so I won't need a bed and stuff, but will need help with every day things soon. I currently am having problems making it through a grocery store. My legs just give out. I'm not complaining as I feel I am lucky to have made it as far as I have because of the way I presented and stuff. I've heard a lot of good things about hospice and I really like having a pallative care doctor. She cares if I am comfortable and that is the forcus of every visit. She also understands I want to function as long as possible and so there is the fine line of not too many medications and being able to get out of bed.

november

Hi Linda

May God help you through your journey; may he grant you peace; may he guide you and your family. Hugs to you and the girls

BTW I also have 2 girls 17 and 19

penny4cats

DearLinda, I think  you are a braveheart sister and just didn't know it. If I am able to make another zipline you will be  there with me. I do not know my Pa geography if you live in the scranton, wilkes area or that general vicinity and would like me to pass on contact info I believe some of my "sisters" would gladly visit and make you laugh or lend a shoulder. I f you get so bored and need something to goggle google bravehearts or facebook the october video of laura s. and her band doing robert palmer is great. the retired gym teacher"male" who agreed to dress in drag is the nicest guy. his wife retired hospice nurse told the story of buying his dress on clearance at target. My healing thoughts to you and your family. ps i taught my 19 daughter knives don't go in plugged in toasters. i am glad i was able to pass that on.  How old are your daughters? hugs penny

2timer

So sorry Linda.  I wish there was something I could do or say to stop this thing from happening.  It just seems so unfair.  I will keep you in my prayers.  Your bravery in the face of unknown is amazing.  God bless you.

goldie123

 dear linda, i'm glad that you have met your team from hospice and like them.  my mother has been on hospice the last month and she has the kindest people working with her and they bend over backwords getting her whatever she needs to feel more comfortable.. she does feel much better though very weak and they manage all the medicine ordering so that also takes a load off me too

reesie

Linda I'm just checking in on you. Hope today is better than yesterday and tomorrow is better than today. I pray that you are pain free and are able to spend some peaceful time with your family.

apple

warmest wishes to you Linda... and nice to 'meet' you

WaveWhisperer

Linda, something drew me to this thread today. I just wanted to give you a hug and thank you for sharing your story with us. 

Hospice workers are the true angels on earth. We had at-home hospice care for my mom, and then she moved into a hospice facility. The kindnesses, the comfort, the care were all just amazing. About the same time, I retired from my job. When they asked me what I wanted as a retirement gift, I told them I just wanted a contribution to the hospice facility.

God bless... 

chrissyb

Just checking in to see how you are doing.  I hope that you are comfortable and pain free.

Love n hugs.  Chrissy

Heidihill

Linda, I hope you are managing this stage as well as one can hope and that your family is doing ok too. Sending peaceful thoughts.

LivingIt

Linda, Hi! I am new to hospice and a liver girl too! I just realized today that the fluid on my right leg wont let me lift in a "marching" kind of step either sitting or standing. This is a drag cause I have problems now getting in/out of bed (LOVE the bed/nap/sleep) and depending on the car - some problems there. Im very glad you posted about the water pills working. I will try them today. My team, who I met yesterday, seems good. A CNA came out today to help me get some lotion on my feet so that the skin doesn't (hopefully) split or weep from the swelling. My nausea has been controlled so far by zofran. My balance stinks as Im walking around on water balloons. Do you have jaundice? I do. Im so excited to meet someone with so much in common. My kids are 4 and 10. We havent sat down as a family yet with the councellor, but I will meet with him next week sometime. I chose the chaplain cause he has a lot of experience with kids. The fact that he has piercing blue eyes and a nice brown pony tail have NOTHING to do with it. he he he. 

Great to meet you here in Hospice land.

Zoh 

cmhartley

Linda, I just wanted to let you know that I will be thinking of you and praying that you find comfort and peace in the new stage of your journey.  It sounds like you found a good hospice team and I'm glad as I think it is so important.  I hope that the bereavement counselor can really help you, your husband and your girls in dealing with all of this.

Please keep us posted.

Cat 

reesie

Linda, just thought I'd check in and see how you're doung today. I hope you've been able to spend some good quality pain free time with your family.

dmacw

Linda checking in on you.  Hope your spending good times with family.

Donna

susan_02143

Linda,

How was your day? I feel bad that I forget to look in this forum for you.... chemo brain or something!

*susan* 

penny4cats

Linda, Thinking about you and your family. Hope your day was full of smiles, hugs and laughter. Penny