My step-dad was diagnosed with PSP 1 year ago. Before that time, there were various diagnoses including PD. After doing a lot of research on my own, I think now that he actually developed the disease about 7 years ago. I decided a few moments ago to do a new Web search and found a conversation from your community that touched my heart. I can't seem to find it again, or I would have posted there. Septembe4 2012, Dad had a particularly nasty fall and brain bleed after which he spent 10 days in the hospital and was released to a rehab center for about 3 weeks. Subsequently he was released home under hospice care last October. He's obviously getting so very much weaker. My husband has been living with my folks for the last 10 weeks because Mom isn't able to manage Dad on her own. She is suffering from extreme caregiver fatigue so that I'm concerned about her ability to recover her own health once Dad is gone. They have, fortunately, already made all end-of-life decisions; there will be no nursing home, hospital, or feeding tubes.
It has been about 3 months since he's been able to lift his arms to feed himself. He chokes a lot after eating. He still is continent, although it takes my husband and Mom to lift him from the chair to the wheelchair to the commode or toilet and then reverse the process. His eating habits are totally bizarre -- changes in lifelong tastes. Sometimes he eats next to nothing, then will eat an entire sandwich and package of french fries. He has visibly weakened over the last three weeks. The last week he has been on a popsicle run -- yesterday I think he had 10. I think his body is hydrating itself in this manner.
He sleeps a lot. Sometimes 20 hours a day or more. Quite often his mouth drops open as if his muscles can't hold his jaw closed. It's freaky how often his eyes stay open but he appears to be asleep. We use eye drops to help keep his eyes lubricated. Since I'm not there but once a week, usually, I'm finding it extremely difficult to understand when he tries to talk. Usually it's only a few words, and more guttural sounds than anything. Week before last he was put on 2L O2 because his circulation is declining and his fingers and toes were turning dark, even then I thought his breathing was very labored and expect it to need to be increased soon.
During his last fall a year ago, he lost about 20 years of short-term memory that has never been recovered, but otherwise seems to be cognitively aware. He has developed increasing wilder mood swings. He has a sense of humor for the first time in the 40 years I've known him, but his anger and frustration is becoming greater and more volatile.
I feel like we are in the final stages, but I confess it often comes over me that I wish it would be over. I know that he is going to die, but I'm afraid that if my Mom declines too much further that I may lose her, too. Then I feel so guilty for feeling that way. It's been hard having my husband gone for the last 10 weeks as well, although God bless him for his willingness and ability to do so. I see them all on weekends. I know that God knows best and that it's better we can't see into the future, but it's hard.