Day 132

(Wednesday and) Thursday October 3, 2013
Physical:
I am seeing some changes, but I suspect some of them I can attribute to stopping the Paxil.  I don't really know if it's good or bad.  The nurse not only didn't indicate a "leveling" of his condition, but increased the amount of assistance (for his benefit or mine???). 
Thursday was a very odd day, and I just don't know what to make of it.  For one thing, he was awake early (I think before 7:00 at least).  I got him up about 9:30.  Then he wanted to lay down around 1:00.  And then he said he couldn't sleep, so got back up around 3:00.  And then about 5:30 said he couldn't stand just sitting there any more and *had* to lay down.  And then got him back up around 7:30 .. which totally messed up the evening routine (dinner, dialysis set up).  I got him back to bed around 9:00 to 9:30.  Somewhere in all those up and down sessions was a potty session (more to clean up).
During the morning, we were sitting watching TV (note: since he doesn't seem to care, I quit trying to find something for him; there aren't that many choices, and I couldn't afford to keep all those movie channels no one was watching  So I turn on Rachel Ray and sit in there with him instead of us being in separate rooms watching different programs).  Anyway, out of the blue, he just started crying.  Now, this is WAY out of character for him.  Is it connected to his mental status?  Or to a period of more clarity and realizing the condition he's in?  And even if it's that - was I wrong to take him off the Paxil?  I think I will need to call the nurse today (Friday) with questions.  It's good that he's more alert.  I think.  But not if it means he's depressed.
People: 
My girlfriend came by - first time in  over 2 weeks.  She waited until she had a major "boo boo" for me to feel sorry for.  Guess I disappointed her.  I'm not going to stick my face 4 or 5 inches away from hers just to see her busted lip; and no one seems to "get it" that I can't see face details at all.  I know people by their size, shape, voice.  (if someone walks up to the door, I have no clue who it is until they come in and speak, or I open it and am close enough to determine who it is).  
DSS came as he always does on Thursday, though it was very late.  He did the heparin injections, and sat and talked to DH awhile.  For some reason, DH was fretting about his knives.  He was convinced one of the kids had stolen his pocket knife.  DSS had to go get the box of knives out of the closet and show him they were all there.  Then DH insisted he leave the one pocket knife out.  DSS put it on the dresser - pointed out to DH that he didn't have any pockets.  I'm very uncomfortable with this whole situation.  I'm afraid he'll try to get that dratted knife.  He's always had a knife in his pocket; but with his mind the way it is, it scaares me.  I'm afraid for him to get hold of it; and I'm also afraid he'll hurt himself in his determination to reach it by himself.  And I have recently begun to see a disturbing trend towards mutiny if he doesn't get his way.
Emotions:
All over the place.  This morning I'm weepy, and not sure why.  I got to sleep "later" (5:00).  He slept through the night, just one incident of the alarm; and we both got back to sleep after that.  I don't know how to handle the changes I see.  They're not so much physical.  And there have not been so many incidents of total confusion or disorientation (and not sure how much of that is because we don't ask; and how much of the constant reenforcing "you are home" is getting through).  But he seems to be getting worse about not realizing he can't stand on his own.  It's very odd how much strength he has in his hands and arms; and yet try to stand him up and he crumbles.  And yet - he's totally convinced he can just get up and walk where he wants to go.  He gets annoyed - sometimes actually angry - at the railing being on the bed.  He occasionally gets resentful of the pull-ups (and, like a toddler, is quick to point out when they're dry!).
The nurse has indicated to me (and her opinion seems to be backed up by the CNA) that she believes he will become bed-bound, sooner rather than later.  And yet I'm seeing him wanting to be up more.  Then he gets bored just sitting (and who can blame him for that!) - but I don't know what to do.  And the up and down so many times a day is very quicly going to be more than I can handle.
I think it's probably not helping that it's just the two of us here all the time.  I'm pretty much completely trapped here - only "allowed" out for a grocery/med refill  run on Sunday afternoon; and to ride along (that starts this month) with a once a month trip to the dialysis clinic.  People do occasionally come to visit.  It's nice that so many hospice people come; but they are all over stretched as is, and can't just sit and visit.  He enjoys it whenever someone comes and spends time with him (I can understand that - I would too; at least I would if it was someone who actually cared how I was doing and not just to show off her latest misadventure).  I almost wonder if he really would be better off in a facility where he would have more contact with other people; but I very seriously doubt he would be happy that way, even with other people around.  He really misses his days as a volunteer at the aquarium and Pea Island.  It's too bad we now live so far from the outer banks that none of them can visit him.