Question about hospice

[hope]

Hi everyone,

I'm doing slighly better with the in home oxygen and now I am on a one week break from Xeloda. Still getting weekly Herceptin. Next cycle I will take 1,500mg a day (up from 1000mg/day). My onc and I are trying to find a tolerable dose strong enough to work on lung mets. No real major side effects yet I just hope that it is working on my progressing lung mets.

I met with the onc. last week and suggested that I look into hospice. I had always believed that hospice ment a place to go when your about to die and both me and my onc. have an understanding that I'm going to fight to the end. I was skeptical at first but then told my onc that I would agree to have a nurse visit just for information. I learned a lot from this visit and basically they would be sending a nurse once or twice a week to check on me. They also do a lot of more things too like order perscriptions and can get integrative medicine specialist like for aromatherapy, accupuncture, and massage to come to my house. When I do go out for medical appointments or for anything I am still wheelchair bound from severe fatigue and shortness of breath but that is relived with oxygen but I do try to walk a little around the house each day.

I was just wondering what your opinions are on hospice and has anyone had experience with this? Thanks, Hope

[StephN]

Dear Hope -
Thanks for your update and news.
As you found out, Hospice is more than just end of life care. This service can take a great deal of burdon off your family and do a lot to make you feel better as well.
If the doc says you are stage IV cancer this is probably enough to qualify - though you do not have to be dying, just incapacitated to where they can help you bathe, do laundry, help in the kitchen, take you outside if the weather permits.
For my mother-in-law we had Hospice coming when her heart got bad and she fell and broke her arm and had to move in with us. They even had a chaplain come and the lady was wonderful for her.

Hospice is much more than round-the-clock nurses administering morphine.
When you are better they will cut back or stop coming and a hospital social worker will take over to keep track of how you are doing.

Hang in there and let them help you out.

[Cathya]

Hope;

I am not familiar with hospice but did have nurses coming to the house while on chemo. There were many services available at that time but I was still so shocked by the whole thing that I never considered using them. I think when you are in such a weakened state, any help that takes care of chores and allows you to focus on getting better and your treatment options would be a good thing. I have been wondering how you were doing. Is there anything we could do to help you research? Are you content with your treatments?

Cathy

[Sandy H]

My first year of diagnose 03/01 I had a hospice volunteer to help me. She would drive me to appointments, take me out to eat as my husband was still working and I was too weak to do much. She was a wonderful source of support. She would come once a week but would call me every couple of days to check in. After two years she retired and I was offered to have a different one but at that time I was doing well and so didn't feel I needed one. She still keeps in touch with me. I asked about being terminal in order to have hospice and she said that is usually the case but it does not mean you can't and won't get better or you will die soon. I was and still am stage 111b and its been 5 years. Only God knows when you will die and no one else. I would recommend to use them, it will make your life much easier and don't worry too far down the road. Relax and enjoy each day. Take one day at a time. God Bless, Sandy

[janet/FL]

I am happy to know that hospice is changing. In 1998 Hospice made us feel guilty even for having my father on supplemental oxygen while in their care. They wanted nothing given to him while enorolled with them other than pain meds. They would tolerate no treatments for the underlying problem. I am still quite angry with the way we were treated.
Thank heavens they seem to have changed. I know of no one that has had the bad experience we did. Most swear by them. How helpful they are. Talk with them inadvace about your concerns. I really do believe that they are more open to long term care than they were.
Wishing you the best
Janet

[Sheila]

We went through the same thing with my mother in law in 2001...they refused treatments, meds, blood etc. Needless to say, they only lasted a day, my husband and I took care of her until she died here in our home...and gave her anything she needed. I hope it has changed since then!

[DeborahNC]

I have served as a volunteer and volunteer chaplain with several hospice organizations. Not all are created equal or receive funding in like.

My experience is mainly with small, rural county affiliated organizations whose funding was minimal. Services were restricted to patients whose physician stated their life expectancy to be less than six months. The compassion and care was outstanding even though resources were stretched terribly thin.