I'm getting close to deciding John has to go into a nursing home, whether he agrees or not. He would say can't he stay home with more help, but that doesn't seem realistic to me.
A couple of weeks ago he suddenly got much worse, unable to transfer at all (we basically had to lift him between chair or toilet and wheelchair). We thought that might be a urinary tract infection and with antibiotics he got somewhat better. But he didn't get back to where he was; he can occasionally use the walker but mostly he is in a wheelchair. He has a lot of tremor in his hands; food ends up on the floor when he eats. He spends many hours a day on the toilet: trying to urinate, dealing with constipation or diarrhea (trying to avoid bowel incontinence), cleaning himself. Occasionally he has to cath himself.
Unless it is a particularly good day, he can no longer heat up his own leftovers (or frozen prepared food) or make his own smoothie. He is falling perhaps on average once a day, and fairly often it takes our son and I together to get him up.
If it was likely he only had a few months to live I would keep him home. But it isn't clear what symptom he will die of. The most likely one would be swallowing problems leading to pneumonia, but his swallowing isn't noticeably getting worse.
He desperately wants to be home. We had a conversation with the hospice nurse, who felt he wasn't safe at home because of falls. He proposed more help in the evening and also agreed to a monitoring camera so I can check on him. He said "anything is better than what Pam is thinking." But what I am thinking is that I can no longer give him the care he needs. He is not getting all the help he needs to sleep comfortably because I need to go to bed. There aren't always going to be 2 of us here to pick him up. He isn't taking his medicine much of the time unless I put it out for him.
Yesterday I had a bad sore throat and wanted to rest and stay away from him. When he woke up I did push him into the bathroom and change his briefs and pants for him and get him icewater. I think he was in the bathroom all afternoon. When I went downstairs to tell him I would bring him down his dinner he said he would fix himself something else to avoid my germs. But then he sent Paul up for the stew I had made; he realized he couldn't manage getting himself something and he needed food. He told me he did want me to get him ready for bed, but then he changed his mind when I said it needed to be at 8 pm because I needed to go to bed early. I was woken twice, though I didn't have to get up. Once was by a phone call that John didn't get to, probably because he was in the bathroom again. And once was by him calling for Paul, I'm guessing to help him get his pillows so he doesn't fall sideways over the arm of his recliner.