Long time reader and only occasional poster, but I just wanted to post that my partner David finally lost his fight against PSP a couple of Saturday's ago.
He died in his sleep at a respite care home whilst I was having a holiday in America, I got the phone call in the middle of the night over there. Obviously I have had to come back and sort everything out, but as far as I know he went peacefully, which is about the best way you can go with this condition.
I didn't know he was getting this close to the end, otherwise I would never have gone away, but over the last few weeks, what breathy noises he could make had become more hissy, ie a Yes had sounded like a very breathy snake.
He was still eating lots of chocolate mousse puddings and occasionally a full meal with some solids, although with the next position, he was not able to get more than a couple of mouthfulls of liquid out of a cup or mug. Fortunately we didn't have to go down the PEG route, as he was dead set against it. He still managed to get a big bowl of crumble and custard down though, which always impressed me!
In the past month, we had had hoists fitted in the living room and over his bed, but I know that he hated being hoisted more than anything that I've ever seen him hate, so I do wonder if inside he made his own decision....
He fought for so long and so well, I have finally managed to see him today in the hospital as there has been no one able to sign his death certificate, so he has to have a post mortem, which is happenning tomorrow. He looked more gaunt than even I realised now that the body has relaxed, but he looked pretty peaceful. I didn't handle it very well though.
Rest easy my David, you don't need to fight any more now.
I've attached a picture of him when the PSP wasn't so well developed.
Keep fighting everyone, and for you carers out there, just keep being there for your loved ones, they do appreciate it even when they are having bad days.