Hospice House

Does anyone have any experience with Hospice houses?  My mother has had home hospice, as well as 24 hour care for almost three months.  When I arrived today from work, she told me that she was thinking of going into a hospice house, and had spoken to the hospice nurse about it today.  I know that one of the people who is taking care of her (a friend of mine) told her last night that we need to hire more people because it was becoming too difficult for my brothers and me to continue as we are.  Now I'm troubled that my mother's decision is based on her worrys about being a burden.  I never wanted her to feel that way.  Would she be more comfortable in a hospice house?  In some ways it would be easier for me, in other ways more difficult.  I just don't want that to be a factor and I've worked very hard to try to keep her from worrying about me.  I can't undo what has been done so I think it's going to happen.

Hopsice homes can be wonderful!\

My personal experiece was great. I did check out several before making a choice. There can be huge differences.

The we chose was very beautiful and the nurses extremely sweet. They also had areas for visiting family members and children as well as a fully stocked kitchen!

Some are more "hospital like" while others are like a beautiful hotel.

The quality of care can be so much better for the person.

They are experts on  quality of care at the end of life. And the good news is if your mother decides she can go back home!

You do not necessarily have to stay with your current provider (even if they tell you that you do) if you find another that is more to your liking. Just ask to speak to their person in charge. They will handle everything. Most insurance pays 100% of "In Hospice " care.

I understand your concern.  We are doing home hospice with my mom.  I have to say that we all thought it would be a lot quicker than it has.  She was diagnosed in Sept.  I moved in with her in Dec to take care of her and she got into the bed for good in Jan.  She now needs 24 hour care and we are in end stage.

The reason I moved in is because mom did not want to die in a "facility".  She has been a nurse for 30+ years and she just wants to die at home.  This is a commitment that I made to her...to be there for her like she was there for me for all those years.  There have been times when I have come close to "running out of gas".  Here where I live, Hospice has respite care for home caregivers.  Basically, hospice will admit the patient to a facility for a short-term stay in order to give the caregiver a respite or break.  This may be an option in your area too and could likely give you another option that you may not have considered.

John 

 

On 4/17/2008 JohnM4549 wrote:

I understand your concern.  We are doing home hospice with my mom.  I have to say that we all thought it would be a lot quicker than it has.  She was diagnosed in Sept.  I moved in with her in Dec to take care of her and she got into the bed for good in Jan.  She now needs 24 hour care and we are in end stage.

The reason I moved in is because mom did not want to die in a "facility".  She has been a nurse for 30+ years and she just wants to die at home.  This is a commitment that I made to her...to be there for her like she was there for me for all those years.  There have been times when I have come close to "running out of gas".  Here where I live, Hospice has respite care for home caregivers.  Basically, hospice will admit the patient to a facility for a short-term stay in order to give the caregiver a respite or break.  This may be an option in your area too and could likely give you another option that you may not have considered.

John 

Hi John,

Thank you so much for responding.

My mother died ten days after I wrote this message, and she did end up dying at home.  Home is what she really wanted, so I feel really good about that now.  I did, at the time, promise my mother that I would visit one of the hospice houses near her home, which I did.  I found it to be very nice, and not at all like a hospital or nursing home.  I expect it may have been easier to detach from life there, and the 24 hour nursing care would have been comforting to us both.  But it wasn't home, and most people do want to be home if it is possible.

When my mother first came home from the hospital the last day of Nov., the doctors thought she only had a few weeks left.  It was a long three months, but I will always be grateful for it.  I was lucky to have a lot of help, and I really hope you do as well.  My mother's last week we needed to have two on all the time and I was able to find people who could do an eight hour night shift while my brother, friend and I each did a turn with that person.  The nights were always the hardest; my mother had a terrible time sleeping.  Her last clear words were, "I have to get up."

As hard as it is for you, I feel certain you will always be glad you were able to do this for your mother.  I wish there was some way I could help you through this, but all I can think of is to tell you that there can be peace on the other side.           Roz

Roz,

I am sorry for your loss.  As I went back and looked after posting, I realized that it had been a while since your post.

Thank you for the words of encouragement.  We are doing the best we can and my support group is phenomenal!  The hardest part is the slips.  As stated in another message, we (even Mom) all thought this would be a very quick (as is common with Pancreatic) process.  Her diagnosis came in september of '07.  We immediately went on a couple of trips while she was feeling healthy.  Then came my brothers wedding in Nov, made it through that, then Christmas; made it through that, then New Years.  She kept saying "why am I still here?" 

With Mom, the slips are small and then she plateau's for a long while and then slips again followed by another long plateau.  All of her Doctors and Nurses are amazed at her ability to continue.

You are correct, that I will always feel honored that I could grant my mother such a simple request...to be there for her.  It is my honor and privilege after all that she has done for me.

John

Hi John,

Are you able to keep your mother comfortable?  I had an acupuncturist come to the house twice a week, and it really seemed to help with some of my mother's symptoms.  That, and reiki really helped to relax her.  Another question--  Did your mother try Tarceva?  It works for some people who have pancreatic cancer.  Roz

Roz,

Actually, she is surprisingly comfortable.  She has a Morphine pump and liquid Ativan right now and things are very restful.  Would you believe that she is still eating!  As I said before, we are in end stage now, but even though she sleeps 20 out of 24 hours, the 4 that she is awake, she wants cake, cookies and chocolate.  Never has she even had even a slightly upset tummy from it either.

She is a small woman 4'9", and down to about 40 pounds now, but she is a giant to me!

 

John

John

 

How lovely to read!

I have only recently joined this forum, as I am having a bit of a scare myself, but have found it such a help to be able to "talk" about my parents battles with cancer and ultimate deaths.

My Mum passed away 4 years ago, and during her final six weeks of life, she could not eat or drink. It was awful absolutely awful. trying to get her to eat the tiniest bit of food, but this would make her sick, holding cups to her mouth for her to sip a drop of water.  I can only describe the feelings I felt as desparately sad and helpless.  I would bake cakes to take into the hospice to try and tempt her - to no avail.  And even when she could manage a mouthful, this would be followed by retching and bawking, which was so distressing to watch and so upsetting and distressing for her.

I am so glad to hear that your Mum is able to eat and drink in her wakeful moments, and is still enjoying doing so.! My thoughts were always, if you still want to eat, things are never that bad!!!

May she continue like this up to her last moments, and may this give you strength and peace of mind.

God bless. My thoughts and prayers are with you all.