It has been a while since I updated. I always read the posts and the wisdom here has guided both me and my husband's caregivers. We are 3 years since diagnosis and maybe symptoms for 4 years before that, maybe longer.
Jeff can no longer walk and transfers are more difficult. He is incontinent and his speech is now grunts and garbles. He has been on puree for years, and it seems to still be working, although he has to be fed. He survived his first case of aspiration pneumonia without complications. The doctor said he will be able to fight that off for a while, as he is so young and otherwise healthy.
He seems a little calmer. Its been over a year since there were hallucinations or we had to sedate him. The bouts of aggression and violence are few and he just can't yell or be mean anymore. He still doesn't understand that he is sick. He thinks I have put him in a home to punish him in some way. Its heartbreaking when he asks to go to work or drive.
Thank God, right before covid we were able to move him to the VA home we had been waiting for. That also meant it raised his care to skilled nursing, which he was definitely in need of. It has been so hard to not be able to see him and check on him regularly. I was able to get in to see him a few times before the holidays. The home has since been locked back down and I can't visit again. I am hoping the vaccines make a difference soon so that the kids can visit him.
The kids are okay. 2 are in college now at A&M and one in high school. Mostly they pretend and don't tell people about it. It's just too hard.
My next task is to make his final arrangements. I am gathering the strength. I need to have all of that ready so I can be strong for the kids.
Thank you all again for the stories and advice. You provide guidance on an otherwise dark path.
PSP
This is a final update of my Mother in-law has PSP
Psp
PSP 
PSP and \"freezing\"? PSP in Africa
