My husband seems to have a strange progression of symptoms. He cannot swallow at all since he had elective surgery for hip replacement a year and a half ago. He is on a feeding pump for all of his nutrition consequently, since his initial major complications following surgery, he has maintained his weight at just under 200 lbs. He is completely incontinent for the last month. He is slow to respond to questions from me - but always follows the logic of the question. He watches TV, especially sports (Stanley Cup currently) but he has stopped reading completely, He can, however slowly and erratically, use his walker to get to the bathroom or to the car. And he perks up for visitors - especially healthcare workers and his minister. He cannot dress himself anymore - even to pull his diaper/brief up. I have tried to find a list of criteria that might make him eligible for hospice care (in the U.S.) but so far I have only found "predictors" like decreased ability to be mobile, decreased ability to swallow, decreased communication, co-morbidities. The only thing he doesn't have is the last. He has not had any bouts of pneumonia or UTIs. We think his disease process started perhaps five years ago but he was only diagnoses in February of this year.
Does the onset of certain symptoms always vary so much from PSP patient to PSP patient? Am I still looking at long term (years) caregiving? Or is there anyway to know?