Everyone from the Hopsice agency is shocked that my DH has been on Hospice since May 16 2011...They had met with the entire family saying he would only last a few weeks...he has bounced back a couple of times. ...i have heard now we are costing them money since he is still around. i do feel the care is not the same as it was in the beginning.....they call out more...don't respond to my calls...aide will only stay a short while eventhough Medicare is paying for 1 1/2 to 2 hours per day. Now I am told he is actively dying....can they be sure..what does this really mean? and how do they determine this?
angelb though some here said it wasn't possible my husband was on hospice for almost four years. Every time he was scheduled for discharge he had another event and was reinstated.
My wife is 65 and in good health other than AD. She is having TIA's and I am told that most likely a stroke will end things. I hate to see her wasting away before me and knowing this could go on for a long time. She has lost 25lbs in 5 months of hospice care and is not eating well and has difficulty swallowing. I do think this is her last year.
DH is in a nursing home. He's been on Hospice since April 2011. He's still getting good care. They are all amazed that he's still here. His normal weight was 153. He's down to 104 but is not bedridden. Like moorsb's wife, he's in good health except for Ad. It's to the point that they mix his food in a cup with milk, etc and have him drink it.
My husband was on Hospice for over 2 years. He kept declining, and there was never a question of taking him off of Hospice. His treatment increased every few months, to include daily bathing, changing bedding, nurse coming by weekly, doctor coming by monthly, etc. If the treatment is becoming inferior, is there another Hospice agency in your town that you could use? They shouldn't care how long they are on Hospice because they still would have the same duties whether he was on it one week or several years!
My DH was on hospice for one year before he was discharged because he was not declining enough. It's been another year and he's still stabe and not eligibl for hospice.
In November of 2010 Hospice called me to ask if they could call once in a while to check and see if there was anything Kathryn or I needed. They also ask if they could meet with us. I told them I would be happy to meet with them but that Kathryn would not be there. I did meet with them and they explained to me that they did other things beside end of life and would like to assist us in any way they could. I showed them her problems and gave them permission to talk to her doctor if they wanted to.
I asked them why they wanted to check on with me form time to time and they very nicely explained they like to keep track anyone that would be needing them in the near future and help in any way they could. When I asked them what they were thinking in regards to Kathryn's condition they were very up front about it and said they said considering how she was doing at that time they believed we would be able to use their services in between one to five months.
I asked them what that meant in the long run and they said they believed she had somewhere between five months and a year left. But made sure I understood that was their best guess and not to take it literally because it is only a time frame they go by to be better prepared to assist us when the time does come rather it is tomorrow or a year down the road.
It has been a year and three months and I still am taking care of Kathryn with out their assistance. They do call every month to see if we need anything and remind me to make sure I am taking care of myself. So far I have not needed their help.
I don't see Kathryn being gone any time soon. I don't see a real physical decline at all. May I don't want to see it but I don't. She lost all ability to do everything but feed herself with a fork and walk. She does have trouble walking from time to time but I bring in a physical therapist to help her regain as much as she can and so far that has kept her walking even if it is very slow shuffle.
Anyway, my point is that just because Hospice is on board doesn't mean anything is set in stone. Just stay as positive as you can and prayer that what ever happens is in your loved ones best interest. I prayer every day that Kathryn never has any of the physical parts of Alzheimer's. It would scare her terribly and she doesn't do well with pain.
As much as I want to keep her I would rather loss her tonight in her sleep than have her go into Stage seven.
I was told this morning that my wife is now unable to swallow the liquid medications that they have put her on. I feel terrible that there is nothing I can do and she is just slowly shuting down. I am hoping that she will stay in the hospital at the hospice unit and not come home to die. I do not want to be the caregiver any longer. I do not want the guilt of knowing she died when I was the primary caregiver.
My SIL has been on hospice in a NH for three years, all in the very end stage. Only thing she can do is eat small amount of soft food and sleep. Everything else is gone. All patients are different. Breaks my heart to see her but it is God's will. She will be 89, has had ALZ for at least 10 yrs.
Lloyd fell on a Wednesday. I called Hospice on Thursday. They came and started the meds (morphine and ativan) on Friday and he died the following Monday. Four days was it.
We started Hospice 6 weeks ago and the changes are so dramatic. No two days are alike now. Good days and bad days. Strange day, too. I am just praying for the strength to make it through this. Very glad to have the nurse here each week, telling me she sees the changes to. Thought sometimes it was just me seeing his steep decline. Yesterday, DH talked to the tv for three hours and when I went to bed he said something more akin to gibberish and put his headphones on. They were not hooked up to anything.........
blue I can just hardly believe how fast this is happening!! Oh I wish I could help you, I feel so for you. I am praying for strength for you too, now and I will try to remember every time I pray.
blue...so sorry that things are picking up so fast. You are a very strong person and you will have the strength that you need. Glad you have the nurse. They can see things that we don't maybe see too. At least he is not in pain. Take care of yourself and know that you have us here to support you and understand.
My husband never made it to Hospiace. He was approved on Thursday and died on Saturday before Hospoce ever got started. There are times I still can't believe he is gone and it has been 7 months this month.