Day 290

Day 290

Frisday, March 7, 2014

Physical:

This was not one of our better days.  DH has some days that he goes right on back to sleep after his bath; but others, not so much.  He did go to sleep, but not “restful”.  He was awake by  a bit before noon and determined to get up.  I know the day may come when I have to just simply refuse to get him up; but I can’t do that as long as he’s strong enough to try to force his way out of the bed.    And, as I have discovered (to my chagrin), he’s quite capable of pulling the sort of tricks a stubborn 2 year old could do.

So anyway I got him up, and took him his drink and pills.  And, as I expected, he promptly went back to sleep.  Later in the afternoon he was fidgeting with the chair again (fortunately, he does keep forgetting it has a remote, so he doesn’t too often try to tip himself out any more)  He said he was going to get up to go to the bathroom.   I told him I could get him as far as the bed if he wanted, but he’d then have to stay there.  So he informed me he’d “changed his mind”.  And he went back to sleep.

I tried to get him to eat .. he wouldn’t even eat Cheetoes.  So, I fixed an early supper.  But  he didn’t eat much.  After eating only a little bit, he insisted I take the tray away “for now”.  He said his butt hurt so much he couldn’t eat.  (note: as far as I can tell, when he says that he means the rash or whatever it is on his butt.  But, the lift chair has a bit of a tilt outward, so he may very well just be uncomfortable from the position he is in).    He was quite willing to get in bed at that point.  After he lay there awhile until he said he “felt better”,  he still refused to finish his supper; but he was willing to eat a pot pie.  Evidently he didn’t care for his original supper and didn’t want to say so.  (the cat loved it).

A peculiarity I have noticed:  despite the major changes in his personality as the dementia takes over, one thing hasn’t changed.  He has an aversion to saying “yes” or “no” when asked a question.  At best, he will say “OK” but not “yes” when asked if he wants something!

Once I got him cleaned up and settled (an almost nightly occurrence, as well as almost every morning – really odd considering how little he eats these days), he went on to sleep.  He seemed to sleep fairly well all night, though he did wake up around 6:00.  At that time he thought it was “time to go”.   He went on back to sleep, though he has been coughin a lot.  The last few days it seems he’s gotten worse about “holding his breath”.  It’s a peculiar breathing pattern, and he doesn’t know why he does it.  It’s unnerving to say the least; but mostly, it makes me constantly alert to see if he’s attempting to do something he shouldn’t be doing.

People:

The CAN came early as is now usual.  A lady called to get the bi-weekly supply for for the dialysis.  Talking to her, I discovered that the truck driver from Monday never reported the items that he told me were damaged and  he did not deliver.

Emotions:

This was a hard day, but a lot of it really was the weather.  It was not only cloudy all day, it rained a good part of it.  And the wind shrieked and howled all day.  And it was bitterly cold .. On a windy day, a lot of the heat gets sucked right out of the house.

I made an effort to find something creative to do,  so at least I made a start.  My friend (that I’ve known for 50 years) did not email at all, and I am reasonably sure her power is out .. so I was concerned about her all day as well.  TGF was supposed to do something for me, and as near as I can tell she still hasn’t.  It was something fairly simple and not terribly time consuming, so it’s depressing to have to depend on her for things when she clearly can’t be bothered.  It’s clear to me that I can not do anything on Sundays any more, because if I disrupt the Sunday shopping, I end up on the short end of getting anything done.  I did talk, briefly, to DH’s sister yesterday.  She’s been very sick, but is better.  She said she could come visit on Sunday, but I had to tell her no.  She might come today instead.   I guess I still need to work on my attitude.  A lot.  But I just bitterly resent the fact that anything we need is considered of secondary importance.  She talks a lot about “family” .. but it’s only on her terms.  I wish I had someone else to turn to, because she clearly has way too much to do, and she clearly has no concept of how difficult it is to be stranded here with little contact with anyone and no way to go get things (meds, groceries, whatever).   I don’t think I should be forced to move from the house that I love and CAN AFFORD just because it’s too much trouble for our adult kids to help us out now. 

I don’t even know what’s going on with DSS.  It seems like he just doesn’t want to be bothered coming over here at all if he can help it.  He came on Saturday (when I had expected him one evening earlier), and has not been by or even called since then.  He’s not shown a bit of interest in how his dad is doing, how he adjusted to the changes, or anything.

DH’s younger sister is in the hospital, and on a respirator.  I don’t have any more information about her, but that she’s not in very good shape.  She hasn’t been for a long time; and she only weights something like 72 pounds.  I won’t even mention anything about it to DH, no point in possibly upsetting him.

DH is not sleeping as soundly this morning as usual, mostly due to coughing.  I told him yesterday he needs a bed in day … but of course he won’t remember that.  I’ve been loosely aiming for every other day, for 2 reasons.  One, of course, it’s just physically easier on me (and on him) to limit the getting him up and down.  Even though I’ve eliminated the wheelchair (which was getting dangerous), it hasn’t made him any “lighter” to lift!   Regardless of how close I can get the bed and chair, there are still a couple of steps that sometimes he isn’t capable of doing.

The other reason is that in bed there is less pressure on the rash on his butt.  He’s on an alternating pressure pad, plus his weight is distributed over more of his body instead on concentrated on  his seat as when he’s in the chair.  The nurse said she’d order a stronger medicine to treat the rash (for want of a better word) but since she got interrupted, I don’t know if she did or not.  I’ll just have to wait until Monday and check with the CAN to follow up.  (yes, I can call the hospice number, but I don’t feel this is enough of an emergency to merit calling anyone over the weekend). 

I skipped the early pill this morning (will fit it in later in the day).  It didn’t occur to me to take it in when he woke around 6:00.  At that time I hoped to get another hour of sleep (didn’t happen), and I don’t want to wake him again until I have to for 9:00 pills.  I hope after the 9:00 ones he goes back to sleep at least long enough for me to shower, and do some cleaning (in case my sister-in-law does come today).