Day 134

Saturday October 5, 2013
Physical:
After the previous night's episode of feeling unable to breathe, DH seems OK now.  He still occasionally does without the oxygen, but not long any more.  He sounds OK daytime, but his breathing sounds very rough at night (and how much of that is due to his apnea?  he refuses to use the BIPAP any more).
He stayed in bed later in the morning, closer to what used to be "normal".  But he still wanted up and down several times, which is getting to be really exhausting.  Part of the problem seems to be that the new chair isn't as good as I'd hoped.  The seat seems to have a little bit of a forward tilt.  So some days he can sit there comfortably for hours - other days, not even 2 hours.  I tried putting a pillow in the seat, but that didn't help.  Then I put 2 pillows - that actually helped, except that the top one wantsts to slide forward.  If the doubled pillows seem to work, I'll have to invent some sort of cover to contain them both - maybe even a way to tie them so they won't slide forward.  I thought about velcro, but it wouldn't be strong enough.
He's eatting better - but since that seems to be and off and on thing, hard to tell if it's because his appetite is better or because I'm better at guessing what he will eat.  And in the background, I can't help but wonder how many of his previous symptoms were simply things being suppressed by the Paxil!\Saturday was also a more emotional day.  He has moments of clarity when he's completely aware that his mind is no longer functioning correctly - and it upsets him greatly.  For someone always used to being "in charge", losing control is depressing and scary.
Apparently his mind's ability to comprehend his physical limitations is completely gone.  There is rarely a time of transfer (bed to chair, etc) that he doesn't start out thinking he can do it without help.  I wonder if it will come to having to come up with some sort of restraints?   I don't know how that would work either (he could, for example, tip the wheelchair over). The nurses believe he will get to the point of being totally bed-bound.  I think they thought he was closer than he is (again, the Paxil?).  But he does gradually get weaker.  Meantime, he's struggling to have control - and the only thing he can do is insist on up and down.
People:
We saw or heard from no one  It's extremely odd to have gone 2 days without hearing from DSS.
Emotions:
Since Friday night was so short, Saturday was a hard day.  I got nearly nothing done, couldn't stay awake by afternoon.  And doing evening stuff was very hardd, I ached all over.  Saturday night was much better.  Even though I still woke too early (it's now early Sunday morning), I did get more sleep.  There was one middle of the night incident, but he only wanted dry pull-ups on.  We both went right back to sleep; so I think I got close to 6 hours.  He is still sleeping (I think).  Saturday he was willing to snooze in bed until 10:00.  I'm not happy with myself that there's so much I want to get done and seem unable.  Part of it's because of being too tired.  Partly discouraged .  And a large part is that I can't see anything clearly any more, so it's hard to tell what does or doesn't need to be done. I try to keep up with computer stuff; but my hands ache, and I can't type well any more.  And I have to lean very close and use a magnifying glass to read very large print.
It's very frustrating, and there really aren't any answers.
Note: I guess I spoke too soon.  And while this morning is technically Sunday, if I wait until tomorrow morning I'll likely forget.  
DH started rattling the rails.  It was just after 6:00, and I went to see what he was up to.  He had managed to slide himself toward the foot of the bed, and had his feet hanging out of the gap between the rail and the footboard.  He said he was going to the bathroom.  And I thought by getting up so freaking early I was going to have time to myself??? Not. :(  So I got him up and onto the commode (and throughout, he's saying he can do it himself - even when I'm holding him up and his legs aren't supporting him!).  So, commode time.  Wait.  Get him up.  Clean him up. Get dry pull-ups on him.  Go get the early pill and some water.  The whole process took close to 45 minutes.  I still have to go back and clean the commode.  Also, every time he uses it any more, he misses and pees on the floor.  The floor is covered with little blue pads.  I guess I have to find some sort of large something to put on the floor under the commode.  Something wash-and-reuseable.  Now I'm tired, I've lost a chunk of "my" time, and it isn't even daylight yet.