Day 191

Day 191
Tuesday December 3, 2013
Physical:
Tuesday was a very odd day.  It started out more or less "normal" (for here).  I don't know how long he would have slept, but the CNA got here a little earlier than usual. She went on and got him up, and he seemed to be awake .. though he went back to sleep in his chair even before she left.  He spent a lot of the afternoon dozing in his chair, which is about "normal".  In the evening he ate fairly well, and even managed to not sill much.  I did, however, notice that he was all slumped over to the right.  He's been leaning to the right for a long time; but more and more the last few days I've noticed a more pronounced whole body"curling" to the right.  It was tricky to get a tray (improvised) on his lap, but I finally managed..  After (and while) eating, he watched his favorite show.  When it was over, I asked if he was ready to go to bed.  He said he was, but he was very mumbly, like he was already half asleep.  When I got him into the wheelchair, he kept fretting about not being able to find the book he was reading.  I made the mistake of trying to tell him there was no book, and he got angry.  Anyway, finally got him to bed .. after a short commode break .. got dialysis all hooked up, got the extra blanket he wanted.  He was acting "off", so I asked what was wrong . and he said he hadn't been ready to go to bed!  Geez, talk about a mind reverting to a 2 year old!!  
He did go right on to sleep.  But he woke up around 3:30.  When I had to go check on him, he said he was struggling because the shower curtain was too tight.  Then he said he was too hot, so I took the extra blanket off; then he started tossing off the rest of the covers.  He was absolutely determined he was in a shower.  He pulled all his clothes off (pajamas and pull-us).  I finally got him to settle down ... and in less time than it took me to get to the other side of the house, he was thrashing again.  When I went back, he had the covers off again, insisting he had to get out of the tub.  I sure was wishing some of the people who say I should just "play along" and "humor" him were here at 4 AM dealing with this!!!! I did finally persuade him to settle down, and within minutes he was back to sleep.  I, of course, was not.
This morning he's alternating between sleeping and asking where are his clothes.
People:
The CNA came early, as I said.  In the afternoon TGF stopped by to bring me the MO to pay the rent (which she helped fill out and took to mail).
Emotions:
I'm trying really hard to NOT give in to depression, but it's a super struggle.  It's been pointed out to me that it might not be a good idea to persue any information about blind services right now .. because social services might decide I'm not able to continue to be caretaker, and forcefully take DH ... somewhere.  And where would that be?  And would he be allowed any dignity?  And choices about anything?  Would the fact that I have a health-care PoA matter?  I don't know, but not willing to take that chance.  But I'm equally frustrated at being told I will NOT be getting the "help" we were initially told we were entitled to have.  Is it because (in theory) I have sons who are supposed to be pitching in(when told about the volunteers, we weren't asked if there was family to help me).  
I probably shouldn't try to write on mornings when I haven't had enough sleep.  It's much harder to just "suck it up" and do what I need to do. 
Oh yeah, DSS called this morning.  My poor car needs around $500 work .. fuel pump, alternator (why?? has had one within the last 3 years), something about temperature. So much for savings.  I MUST have that car in good condition.  Merry Christmas to me.