Saturday, February 1, 2014

Day 253

Day 253
Friday, January 31 2014
Physical:
Most of the day was fairly “quiet” for DH.  He did insist on getting up by mid morning; but since I knew the CAN would be late, I thought that was a reasonable time.  He was up until mid afternoon, and then wanted to nap after his bath.  All of that was expected.  But then an hour or so later he demanded to get up again.  That wasn’t so bad, that meant he would (maybe) not sleep all evening. 
He ate a sandwich for lunch, and one (fairly big) piece of chicken for supper.  He didn’t want anything else, not even cookies or candy.
But he started watching something on TV .. and wanted to stay up until 10:00.  By a little after 9:00 he was too tired .. and that was a big mistake.  And yet, I can’t really “force” him to go to bed if he doesn’t want to.  So when I went to get him into the wheelchair, he and I were both too tired and it was a near disaster.  Fortunately, this time at least, I managed to keep him in his chair, barely.  It took a long time and a lot of struggle, but I managed to get him back into the chair far enough to start over.  The second time I was better prepared, but it was still close.  His brain insists on telling him that he can get up and walk around any time he wants .. even when I’m trying to hold him up.  He  honestly doesn’t realize that not only is he not moving (as in literally not moving his feet or his torso), but he’s not even holding his own weight on his feet.  And I cannot convince him to stop reaching behind him for the wheelchair …. Which twists him in the wrong direction and I have to push his whole weight  back around to where he needs to be to sit in the wheelchair.  Physically, he’s really not that far from being bed-bound.  The problem is that he doesn’t know it. There are times when getting him up is the only way to get him out of whatever fantasy he’s in (and even then it doesn’t always work).
Once he got settled in bed, he slept fairly well.
People:
What an odd day this turned out to be!  The nurse came today, right at noon.  I actually do enjoy visiting with her.   I did like the substitute nurse that came a few times .. she was more “motherly”; this nurse tends to be more professional (not a bad thing), not as open.  I believe, though, from something she said, that she makes an effort to not get too emotionally involved with her patients.  Later, around mid afternoon, the social worker called and then came over.  Just after she got here, the CAN got here.  When I can talk to the S/W one on one .. not with DH in the room, and not in tandem with the chaplain, it seems to be a much nicer visit.  She encourages me to say what I feel; and she tells me it’s OK.  And it’s easier to believe from someone who has “seen it all”.  Not only in the work she does, but she’s had experience with dementia in her family.  For a brief time both ladies and I chatted, and that was just fun.
Throughout the day the phone rang often, which is unusual.  It was all sorts of “junk” calls – even a wrong number.  Late in the evening I talked with TGF about weekend scheduling.
Emotions:

Because I had a chance to “let off steam” to a degree, it was an easier day.  Physically, though, it was a really hard day.  I got the rest of the Christmas stuff upstairs.  I’m sure I will find bits and pieces I overlooked; but 99.9% of it is neatly packed away.  That, in itself, was tiring (3 trees went up, as well as multiple boxes and other stuff).  I didn’t get to take a nap, though I did have a brief spell between visits to sit back with my feet up.    By the time DH was ready to go to bed, I was already nearly stumbling over my own feet tired, and the episode with the chair was just icing on the cake! It also meant I woke up around 3:00 .. seems it’s when I’m over tired that I have that issue.  I guess I sleep “too hard” or something.  It took awhile to get back to sleep,; and by 6:00 I was up.  If I’ve slept reasonably well, I’m OK with getting up so early.  I’ve discovered that’s a good time to get things done, when I have more energy.  I’d love for there to be a morning when I didn’t have stuff to get up and get done; but I suspect I’d be wide awake anyway.  I think it will be years – if ever – before I can stay up late and sleep late in the morning.   But as hard as things are now – physically and emotionally – I try hard not to think about a time when I don’t have anything to do.  I think my life will become pretty much pointless then.  I am not looking forward to becoming old, blind, worn out, and useless.

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