I have been looking after my husbsnd since 2019 with PSP although the symptoms were apparent much earlier.
I've seen a dramatic deterioration over the last year or so and he is currently in hospital with aspiration pneumonia and is recovering.
it's been a tough few years,I still work full time and have carers come in 3 times a day but they are literally there 10 minutes if that. My husbands consultant said backnin February that he needs 24hour care and 24hour supervision which I can't provide with working. His pneumonia has occurred because his swallowing is getting worse and he needs to be prompted to swallow. The hospital wanted to put a peg feeder in his stomach but he doesn't want it and neither do I so we have declined as eating is one of the few things left that he can enjoy.
I have a best intention meeting with the hospital tomorrow as they want to discuss his potential discharge and the best place for him to go. He seems to have deteriorated more mentally since the pneumonia and still has some episodes of delirium which they have said may be permanent.
I personally feel now at this stage of his illness that he would be better looked after in a nursing home as I don't think I will be able to cope if he comes home and I can't give him the 24hr care he needs.Plus he needs two carers to lift etc but when there not there it's just me and I really struggle on my own.
I just wondered if others have been in this position and what you did.
I'm worried the hospital will try and send him back home but I really don't think I can cope anymore.