There's a reason they put "Progressive" in PSP. At last update, Sandy had a high fever and confusion on Thanksgiving Day. The Hospice nurse said this could be the beginning of the end or he could snap out of it. He did snap out of it later that day, after sleeping several extra hours. He's declined quite a lot in the last week. He's in bed 21 - 24 hours/day now. He likes to get up and sit in his wheelchair at the computer, usually every day, but gets so tired and uncomfortable that he's back in bed after 2-3 hours. Plus the severe leaning makes it impossible to stay in the chair. The leaning comes and goes although most days are "leaning" days now.
The Hospice social worker came today and we are signed up for a five day respite in mid-December. Right between two family parties at our house. They had one opening and it turned out that it worked right into our schedule. Thank you Lord for looking out for us! I'm not exactly sure what I'm going to do with this amazing gift. I want to spend it wisely. Would like to stay home and catch up on things although don't want to spend it all working, cleaning, doing paperwork, etc.
The Hospice folks today said they think he has months or less. A month ago, I would have guessed maybe two years, that changed to a year about two weeks ago. Now, I think a year is pushing it unless he has a long plateau. We've definitely turned a corner where I need to increase caregiver hours. I've been fairly conservative with funds, not knowing if this might go on for years but I don't think it will. I do not want to spend our time together strictly as nurse and patient. This is not how I want to remember this. I want to be his wife again.
Some days he looks so weak, and others he perks right up. The Hospice people say this is how it goes.
Thanks for listening and caring. And any input, as always, is welcome. Joy