Hi all. Glad to have come across this forum. My dad has unfortunately been misdiagnosed- he was diagnosed with Parkisons about 4 years ago, but after a neurological scan recently and drugs not working, the diagnosis came to PSP. Found out two weeks ago so we as a family are shocked and upset.
My dad is 79, and has deteriorated very quickly in a short space of time. He is at a nursing home at the moment, in a winter bed. He needs to move soon though, and we are looking into the best home for him to be. We looked into Sue Ryder, but the room was very small and quite far for my mum to travel and visit everyday. I did have high hopes for Sue Ryder as the nurses there seem specialist skilled in nursing people with PSP, as opposed to say a normal nursing home.
I have arranged to visit a nursing home with mum, and want to meet a senior nurse to ask questions on how they will look after Dad. He needs palliative care. As you guys are aware, PSP is quite rare and I am not sure how well equipped nurses are to deal with PSP patients.
My dad currently has to do number 2 on a pad on the bed, which causes huge discomfort for him- he wants to go to the toilet and do it in comfort and dignity, but the nurses say its a three person job- due to his balance being bad. What solution is there to this?
many thanks, and I look forward to hearing from you guys.