I don't have any more questions for this forum. It has been so supportive over the last few years. My husband is, I hope, entering the last phase of this appalling illness having been diagnosed in May 2021. I suspect he has had it for some years prior to this, but we shall never know.
He has been in an excellent nursing home since April following a final fall which broke his hip. This accident seemed to send his PSP into a downward spiral. He is bed bound and only able to sit in a wheelchair for a very short period with the help of carers. He is so frail now after a rapid weight loss in the last few months (72 kg to 51 kg in 3 months). He manages to eat a little with help, and drinks even less, because he chokes constantly and it frightens him. It frightens all of us when he has choking episodes. He has supplements and special drinks to help boost him, but his weight continues to drop. We discussed a PEG feed a few weeks ago, but it was decided it was too late for him to benefit and the trauma of putting him through the procedure was just too much to bear. We cannot really communicate anymore. I hear the odd word but most of it is done through hand squeezing.
He is in constant pain even with the strong pain patches he now has to rely on. I know there is other medication that he will be able to have but we are not quite there yet.
I knew this illness was going to be awful, but I was not prepared for just how awful it would be. I feel I am unable to do anything other than perhaps be a comfort. Because he has no facial expression anymore, it is difficult to know how he feels about anything. I miss his smile.
I hope for his sake, and I must admit, mine too, that this final stage does not last for too long. I want peace for him.