Day 221

Day 221

tUESday December 31, 2013

Physical:

The last 2 days have been relatively “quiet”, with the biggest issue being sleep patterns.  DH used to always be a sleep-in-the-morning person.  Lately – the last few weeks I guess – he’s started occasionally waking up early and wanting to get up.  This is not every day,  but maybe every 2^nd or 3^rd day.  Naturally, he seems to sleep in on the days when it’s quiet; and demand to get up on the days I’m trying to get something done in the morning!  (I know he doesn’t know the difference, but that doesn’t make it any less frustrating!!).

But, on the days he gets up so early, he falls asleep in his chair; and after a very few hours he wants to go back to bed.  Tuesday he was up and down several times .. “napping” was less than 2 hours (which meant I didn’t get to sneak in a nap either).

On Tuesday he was ready to get up by 8:30 .. meaning throwing back his covers and trying to slide off the end of the bed.  My choices were get him up, or let him stay like that (in which case he would have continued trying, and probably either hurt himself, or break the bed; at least I did have the dialysis tubing disconnected so there was no danger of damaging that again!).

I’m not really sure about his appetite.  I think it’s less that he’s not hungry, and more that he just doesn’t want to bother to eat unless it’s exactly what he wants.  He certainly has no problem snacking on candy all day!  Tuesday night I fixed pork chops, usually one of his favorites.  While it is very hard to do something like that when you can’t set the oven temp, they were not either over or under done.  But he didn’t even eat a whole one, and didn’t recognize them as chops.   But later he was given a serving of some kind of chicken with potatoes, and he ate every bite and went on about how good it was!  It tends to make me not want to bother cooking at all. L

I think his mind is still wandering all over the place; but yet he has “learned” that I might argue with him, so he just doesn’t say where he is.  Odd how he can pick up on that, but is not able to “learn” that his legs won’t support him.  Anyway, he has not been as argumentative recently, even though he is convinced he’s in various (odd) places.  This morning (Wednesday) he said he was laying on a desk.  Instead of trying to convince him he was in his bed, I just pointed out that his “desk” had a mattress and blankets, so he might as well stay where he was.

I’m not really sure how well he slept.  At one point, around 2:00 AM, he was breathing so hard I had to get up and check.  He told me he’d had to “fix” the air hose.  I have no idea what he thought he was doing; but he did have the oxygen on, and I even checked to make sure everything was connected.  At random times he just starts getting very short of breath and sounds like he’s struggling to breath. I wish I could hire someone who would come in for a couple of hours while he is up (or better yet, on a clinic day) and give his room a really good cleaning.  I don’t know if that would make any difference; but it couldn’t hurt!

People:

On Monday the only person we saw was the CAN.  Now that the holidays are over, that’s pretty much how it will be I guess.  On Tuesday the nurse came.  I figured she’d be early – one reason it was so frustrating that he chose then to want to get up early.  I did manage to get a shower first; but was just getting my first cup of coffee when she got here, around 9:00.  That was (finally) a productive meeting.  After weeks of trying, she got to talk to the Duke doctor (and I did as well, since requests have to come from me) … she authorized a recert for the hospice (his initial 6 months ends on January 5^th), and also gave permission to change his care over to a hospice doctor.  So, no more of this extremely aggravating nonsense of not being able to contact his doctor!  She did all the usual checking his vital stats, and we talked a bit (how is his appetite, sleeping, confusion, etc.)

During the afternoon the little girls next door brought over 2 cups of a hot drink .. not sure what it was, something fruity – and quite yummy!  Later (after dark) the boy brought over the plate of chicken that DH liked (there are still 2 more ieces, so I guess that’s supper!).

DSS called, but it was after 9:00 and DH had gone to bed.

Emotions:

I think I am more tired than anything.  When all is said and done .. whether or not we have any company or “help” or whatever … it’s still only me, pretty much, 24/7.  I’m the one dealing with whatever is going on in his head.  I’m the one setting up and breaking down dialysis.  I’m the one struggling to sort and deliver pills correctly (which is extremely hard now).  I’m the one who has to get him in and out of bed, the wheelchair, on and off the commode .. multiple times a day.  I’m the one not getting a good night’s sleep for hearing him cough or wheeze or puff and pant during the night (or try to get out of bed at times).  Day in and day out, it’s only me .. and that’s in addition to what little I get done around the house any more.  It’s not nearly as clean as I want it to be or it should be.  I’m the one trying to cook meals that he won’t eat, washing the dishes, doing laundry (and his clothes need to be washed pretty much every day now – he occasionally goes through 2 “outfits” in a day). I like that I can now “read” a book by listening to it .. but it’s hard to find a time to do that without falling asleep.  I’m just plain exhausted, and no end in sight.

There was a bit of talk, some hints, of a respite care with hospice, some facility that could handle the PD.  But the S/W, who is supposedly looking into that, has never said a word about it.  But someone else – I think it was the CAN – said something about the facilities having a waiting list.  So if there is anything, apparently it’s somewhere off in the future.  Kind of odd for hospice I think!  So any possible “break” is something for in a future I can’t see or count on.  So, it goes on.