We read and are told that PSP patients have a life expectancy of 6-7 years on average. But we all also know that invariably the diagnosos takes a long long time. I believe my husband's PSP began in 2005 following an accident so who knows how long he has left.
He has deteriorated a lot recently. He can no longer stand or walk, seems to hurt when moved and has had a catheter fitted. We are up to 2 carers 4 times a day and the house looks like an orthopaedic shop. Despite all this he is in good spirits, still has a good appetite and a sense of humour. I really think he still has the capacity for a reasonable quality of life, albeit with a progressive condition. But he won't get it being shunted from bed to commode to shower to settee. I don't want him to fester in front of the TV. I want him to be in a stimulating environment with people around and things going on.
After a lot of soul searching, heartache and more tears than I thought I had I have applied for a long term place at a home dedicated to the care of ex-servicemen and women. I visited last week and found the most marvellous, warm, caring community. He will get the best care and being in a wheelchair will bar him from nothing. They have outings, activities, entertainment, physio etc etc. Although PSP has affected him cognitively as well as physically I know he'll settle (as he does in respite) and be happy with all the attention and stimulation he'll get.
I have the full support of his family, my family and our friends who have been saddened to see the decline of such a strong, capable man.. They know I'm not giving up on him, I'm trying to make the rest of his life better.
I never thought I'd have to make such a hard decision. And I'm dreading the day for me, but looking forward to it for my lovely man.