The Worst of FXTAS

Today was just awful - and the day is not over. Today was one of those days when Vince's FXTAS shows all of its ugly dimensions.

The past couple of years have been relatively stable, with 10 hours of home health aides a day and Vince having a steady daily routine of a morning shower, coming downstairs to the family room for the day, and back up to bed at night - walking a little bit with help. It's dull, but he's perfectly content and I have time to get out every day and do non-caregiving things, so it works as well as anything can.

Once in a while, Vince has a day when he just doesn't function - he just seems to want to sleep all day. Today was one of those days. I knew it as soon as I woke up this morning and he was sleeping, but looked more knocked out than usual. He felt a little warm - our bedroom is the warmest room in the house, even with air conditioning on to the point that the downstairs is cold (time to buy an attic fan I think); I got him to drink water and washed him around and he cooled down. He didn't have a fever or any other noticeable problems.

Today my regular aide (both my aides are males, therefore, strong enough to handle Vince) needed the day off, so the agency sent a female aide. She was very nice and I'm sure very competent for a person of usual needs, but she and I could not get Vince out of bed. So he had to stay in bed all day. His incontinence was worse too - changing Depends every 1 or 2 hours. We had to keep pulling him up in the bed because every time you change him (which involves rolling him from side to side), his body moves down the bed till his feet are almost at the end of the bed.
Then we got him to a sort of upright position - using a big wedge pillow behind him - so we could feed him simple foods like oat bran and mac and cheese. (time to buy the adjustable bed that raises the upper body!).

I couldn't get any of Vince's medications into him today - he can do without them for one day. So he just slept and sweated all day. At 6:30 p.m. my evening aide (male) came, and we were able to get Vince downstairs, into his recliner, and having a regular dinner. I made hamburgers which is one of his favorites, and he seemed to eat fine. Except after dinner, I had to fish chewed meat out of his mouth - he does this sometimes, but of course had to do it today because the FXTAS had to do all its nasty tricks today. Then the aide gave Vince a vitamin, which he wouldn't swallow and I had to coax that out of his mouth.

All of these things happen sometimes, but today we got the whole range! Vince couldn't walk either - we pushed him across the room in his walker/seat - he took a few steps, but didn't make it all the way. Now after dinner he's sound asleep again in his recliner. Later we will probably have an ordeal getting him up to bed - but maybe not. Sometimes after a day like this, he gets his "feet" back at night and does much better. I really hope so. And do I ever hope tomorrow goes back to our normal routine - as difficult as it is, days like today make "normal" days seem great.

AND I didn't get my workout in today, so I am not happy. I did go out to lunch with a friend, but I get really anxious when Vince has days like this, because he doesn't talk and I don't know what's wrong with him, other than just FXTAS at its nastiest.

But what's really scary, is that today was not the nastiest - this will only get worse. That's why I have to believe that God is in control and I have to believe that whatever happens is God's will. I beg God to guide my days, step by step, especially days like today when I just get clueless about what I should do.

Vince has his twice-yearly appt. with his neurologist tomorrow - if we can get him there. But that won't help any. Doctors tell me I'm already doing all I can for Vince and never have any better suggestions (other than the dreaded nursing home, which I will refuse to do as long as keeping him at home is in any way possible).

This isn't my best writing either, but my mind turns to mush on days like this - I just wanted to get it written down. Here's hoping for a better tomorrow.