Hospice is coming to our home on Monday to interview us and assess my DH's needs. What can I expect ? Any advice is greatly appreciated.Have not told our children, they seem to feel that I should be able to handle everything by myself.
I've posted this before, ..but my advice is to remember the Hospice worker is not a guest in your home., they are checking everything. When the first one came, I had my husband prepped, dressed, told him all about what was about to happen and I did most of the talking.. (nothing unusual there!) Foster came across as an able minded man, because I put words in his mouth. I was devastated when they turned us down right then and there. I called the chaplain for that Hospice Group that I knew... and he suggested I call another one right then. I called and they said they'd be out on Monday. This time, my husband was clean, but not prepped., and in walked the nurse. He mumbled, stumbled and couldn't answer her questions. Then he said he wanted to get up and go to the bathroom. I got his walker and said, "Let me help you". NO WAY, he wanted to go by himself. He did, and I watched him go into the bathroom and close the door. Okeedokey. I went back to the Hospice worker and in a minute or two, he walked back in, totally unaware that he had wet himself all the way down the front of his pants. I excused us, went to the bedroom and we changed his clothes and socks. Back in the room a ittle later, she said, He could use a great deal of assistance and I will be setting it up.. and the wheels were set in motion. He died six weeks later. I called Hospice #1 when he died, and kindly gave them an update and the director was very upset that we had been turned down. (The worker kept telling me her sad story about losing her husband and their home and how she wished she had a house like mine, and it was just a very odd interview!) I have an idea she was let go. The Director indicated she had heard similar comments from other families.
Just keep the moment as normal as possible and don't over-prepare your DH for the visit. ..and NONE of our children believe it's as bad as it really is. It was so disappointing, broke my heart, and frankly I'm still not over it., ... We do what we have to do.
From advice I'd read here on AS, I knew when Hospice came for the assessment they neededto see hyow it really was , so other than telling DH someone was coming to see about maybe we could have some help, and that they'd want to talk to both of us, Idid no prep. At least knowing someone was coming, he put on his sweatpants. Wehad their help the first time for 6 months, and when he was admitted to the NH, they came back until the end in July--another 4-6 months. Even now, they check in with me to see how things are going, since he passed.
My husband had hospice care for four years-every time they thought they could discharge him something else came up. Most funding comes from MC and criteria for dementia patients is easing up a bit. Don't forget-to exist hospice needs patients and they want to keep the ones they have. I now work with hospice and love the one in my town. Usually when a patient plateaus hospice will discharge. With dementia it is now accepted as a terminal disease and rarely discharge the patient.
I loved the gals and guys from Hospice I had. I also had a major disagreement with the head nurse. She didn't see my husband as needing hospice at all. The VA had suggested he be evaluated. I couldn't convince her at all that he was much worse then she could see. His vitals were always good and he was such a sweet person and would smile so nice, etc. The first time she came she said they would sign him up but probably wouild only be able to come for 3 months depending on his decline. This was sometime in the spring. I don't remember the month. I told her she was so wrong..that I thought he would not make it to the first of the year (2013). Well, he died Aug. 28, 2012. When he took his major decline it was like a rapid slide now a hill.
The people from hospice just left. Said it's too early to sign on DH.Of course they would come when he was having a real good day. They should have come last week when he was totally confused ,didn't know anyone not even his beloved dog. I had not told him they were coming, he was very courteous and understood every thing they said, he can't seem to even hear me. The nurse said he is pulling my leg,is not as bad as I think.Also he has not lost weight,something medicare looks for .
Don't feel badly. You can always call them again or contact another Hospice. That is kind of like the problem I had with them. But, the VA sent them after he had been for an exam and he couldn't remember his name, the day, month or where he lived. My dh had not lost weight either and he looked good when they first signed on. Until the day he died the head nurse never thought he was "that" bad. I kept telling her she was wrong...with respect, of course. She didn't know what he was like before he got as bad as he was when they first came. Within two weeks he started losing weight and that allowed them to stay for another three months...
At least the Hospice I had were use to seeing cancer people and they would be in pain and look terrible. You can't judge how bad an AD person is by the way they look...and I would also keep telling her that. Even the helpers VA sent didn't think he was as bad as I thought he was...unfortunately, I was right.