We finally got my 90year old mom on hospice. Her "diagnosis" is mental decline and not eating. She knows everyone, and where she is, what year it is, etc., can roll to use bed pan, follow instructions, etc. But she is so dehydrated that we can't even sit her up. So I just raise her bed up to feed her. She was eating a little bit a few times a day.
Yesterday, I went in with breakfast, and she just outright refused..well, took one bite and spit it out. I got so angry! How can she just refuse to try to get better? How can anyone WANT to have their child have to wipe their butt and hand feed them and put diaper on?? I just don't understand! I could see if she was totally out of it, but she talks and understands questions and comments...I have tried everything to entice her to eat, drink, etc. To no avail. I guess that is why hospice was called. This person is NOT my mother!
We haven't used any of the meds from her "comfort" package (morphine and anti anxiety meds) , but I am thinking she is tense, as when I go in her room, she is holding her neck and rocking back and forth. When I ask her if she is in pain, she says no. But starting these meds might be the beginning of the final slide. Part of me dreads that, and part of me feels like this is no way for anyone to live, either for her or me.
Mom's diagnosis is mental decline. Were you able to speak to the medical person who gave that diagnosis, and what the implications are? I'm going to wager that what is means is, that while mom still has her wits about her and knows everyone (a blessing) she can no longer reason, can no longer see that her actions have consequences. Sort of the way a two year old doesn't "get" that if she touches that hot stove, she's going to get burned.
A two year old learns that; an elder with failing cognitive (thinking and learning) abilities doesn't. No matter how many times we explain to them that they will die if they don't eat and drink, that mechanism in their brain is broken. So, she doesn't WANT this; she can't help it.
I think I'd contact the folks who did the diagnosing and talk to them about what is going on. I'd talk to the Hospice nurse about the rocking and what that might mean; it certainly sounds like it could be anxiety, but it could also be pain, although mom can't express that. My mother, with vascular dementia, gets agitated when she's in pain, but can't say that she is, or tell you where it hurts.
Lastly, I want you to think about how to take care of you. whether it's some respite, so that you can go to the library, the movies or take a walk; whether it's a visit to YOUR doctor to talk about the stress that you're under, you need to find some relief so that you don't break. Talk to the Hospice folks about how to accomplish this, too.
Thank God I work, so I can get away! My elderly father is in very good health, although he and my mother pretty much hate each other! He will take care of her but he, too, is frustrated, and I think, scared. And my siblings, who are all out of town, are super supportive. Thank God for that!