Day 206

Day 206
Tuesday December 17, 2013
Physical:
It is weird - and sometimes disconcerting - how DH can *seem* to be alert and lucid; and then he will say something so very odd that one has to do a double-take, and have no clue how to respond!  Even the hospice people are more aware than ever.  It's really terrifying that his mental condition is deteriorating so much faster than the physical.
Monday night we had a very near calamity, because he can't accept that his legs won't support him.  He can't sit upp without support either .. and it's strange that at the same time he has a lot of strength in his hands.  When I had to try to get him from wheelchair to commode, we nearly missed, because he *thought* he was moving - but wasn't.He came very near to going on the floor; and it was a major struggle for me to keep him from falling.  I told him I will NOT do that any more - at night, when he's so tired, he will have to settle for wheelchair to bed only.
For the last few days he's thought he was at the aquarium, with a few times in the car.  
His appetite, at least, is OK as long as he gets something he really likes or wants.  With my difficulty cooking, that's getting complicated.
People:
The CNA comes daily (but not today).  Since the clinic appointment was changed to today, the nurse came yesterday.  I told her about the weekend, especially the one really bad night.  She is getting me something to help!!  She was trying to tell me about something in the "care kit", but I keep telling her I cannnot read the labels.  So she ordered a gel I can use when I need to calm him down.  
Nothing more was said about respite care of course; supposedly the social worker is following up on that.  But, again, it's been over 3 weeks and no word from her.  Plus, I got a call Monday afternoon that they had found me a volunteer.  She was supposed to call either that night or yesterday.  Naturally that didn't happen (though to be fair, a lot of times the phone line here just doesn't work - people frequently say they called and either got no answer or a busy signal, when no one here was using the phone).  
My sister came by, but a planned activity got aborted due to a combination of miscommunication and illness.  Hopefully another chance will work out.  DSS came by later in the evening (to get yet more $$ for car repairs - I am literally sick to my stomach at how much it has cost over the last few weeks to get the car running - but I have to have it.  I hope there's not another time, because the well has run dry!)
Emotions:
Lately I've not been sleeping well because I'm so afraid of DH waking up and another struggle to get him to calm down and go to sleep; and then I have a hard time getting back to sleep.  So, I stay tired and anxious.  I desperately hope the gel (that should come today) will help!  I never got all my decorating done (going by past year standards), but it will have to do.  I can't see much of it anyway; and most of the people who come say it looks fine.  I'm bitterly disappointed about not having anything in the yard (and it still annoys me for peopple to say "it doesn't matter" because it DOES matter to me!).  It seems we're having more visitors over the holiday season, which DH and I both enjoy.  I'm afraid January is going to be a major let down, but I have to get through the holidays before I worry about that.
I hope DH has a different doctor at clinic today.  Most likely he will, because it's a whole bunch of them that rotate.  The last one hinted at adding a daytime dialysis exchange.  I know I come across sounding hateful and selfish; but that's just not going to happen.  I really don't think I can handle adding something else; and that might completely cancel any faint hope of respite care.  So if they still hint that the dialysis is no longer as effective as they want (and odd how they are refusing to see the "whole picture"), perhaps we can add an exchange and make the dwell times longer for the overnight program.  The only time that would be a problem (assuming the gel works for keeping him calmed down on the days he demands to get up early) are the days that they want him into clinic too early.  If necessary, that one day I can cut off the cycler early if I need to.

Once again, I got distracted before I could finish a thought.  Now the day must begin.