I am new here, although my partner was diagnosed with PSP about 15 months ago. I think he has had it for 3 or 4 years in truth, like many he was initially diagnosed with Parkinsons and later amended to PSP as more people got involved.
He is currently at the stage where his speech has gone, he whispers and I have to put my ear next to his mouth and still very often do not catch what he is saying. If he stands up he falls immediately, and I have had many a sleepless night down in A&E whilst he waits for stitches etc, as he has tried to move from his chair to the commode in between the daytime carer visits and my getting home from work. He drools a lot, and has recently not been able to finish meals, even when I am feeding him, which I have been doing on and off for the last 5 or 6 months.
We have been very lucky with Social Services, as they have installed a through floor lift in the living room/box bedroom for him to get up and down stairs, and we are looking at possibly converting the second bedroom to a larger bathroom as the system won't let the carers take him into the main bathroom as it is down a very narrow alleyway, so he is currently having stripwashes in his chair downstairs.
They are also in the process of organising one of those concrete ramps from the front door to the gate, so I can get him out in his wheelchair more easily. Fortunately I bought a Meriva last time I changed car, so I can get the wheelchair and him into the car without too many problems.
I have a full time job, working about 42 hours a week, so during the day we have 3 carer visits to get him up, washed ad downstairs and then a couple of welfare visits, then when I get home from work, I have to do the evening meal, and look after him all evening and night in bed.
I try my best, but I hate myself as a carer, as I am someone who lets their frustrations get the better of them, and I end up shouting and getting stroppy when we can't get a point across, or when he needs to go to the bathroom for the umpteenth time that day. I hate myself for doing it, but I just can't stop myself, I think its the way my full time job, and full time caring, and the tiredness etc comes out.
Its been one heck of a learning curve, and I don't think I'll ever bottom this horrible disease,we have no idea how long he might have, but I love him with everything I have, and will do anything I can to make life easier for him. I just wish I could stop myself form getting to wound up!
Sorry for the offloading, I'm sure this kind of post is a regular occurrance on here...