Day 133

Friday October 4, 2013
Physical:
I'm still not seeing much day to day difference.  But there were several occasionns  in the past weeks, and a more "severe" one last night, where he felt like he wasn't getting enough air.  He woke me up at 2:30ish, asking me to turn the machine up (don't know if I did or not; I know I'm not supposed to mess with it without a doctor's order, but at that time I didn't care.  I just can't read the dial to know what to do).  He asked if "this is what it feels like to die".    I added the humidifier bottle to the concentrator; I also brought him some water, and changed his pull-ups.  He finally got a bit more comfortable and went to sleep.  (I did not).  He did not really know where he was, but wasn't upset about it.  Later, 5:30 or so, he woke up and wanted to "get out of here".  I tried to talk to him a few minutes, but he was totally off somewhere I couldn't reach.  He did go on back to sleep.  I still did not.
I'm starting to notice subtle personality changes.   (I'm sure the nurse would say this, too, is related to the kidney disease.  I would have thought it was the dementia.  I wonder if the toxins that build up, instead of causing an infection as I've always assumed they would, are leaching into other parts of his body?  That's a pretty scary thought, especially since there's not really any way to know, and not really anything to do about it.
Anyway, he's having more spells of being snarky or bossy (for want of a better word).   He's always been a bit of a chauvinist - he was raised that way.  But this is different.  It's like some of his personality traits are becoming exagerated.  And the things with that dratted pocket knife - he's getting more protective (obsessive) about *his* stuff, in particular the guns and knives.  I'm getting more and more uncomfortable with it.  I really want DSS to take that stuff to his house - only, it would be less safe there.  
His sleep/wake cycle 0 except last night - has seemed to be getting better.  Unfortunately for me, that means he's wanting to be up and down about 5 times a day; and I don't know how long I'll be able to keep that up.
People:
The CNA came, but had to kind of rush off when she was done as they added more patients to her schedule.  DSS didn't call (unusual).  
Emotions:
I don't know.  I'm tired, so not a good time to try to sort how I'm feeling.  I'm depressed at the lack of communication from the kids.  I'm scared I'm not gong to be able to keep handling everything. I'm frustrated that all of what time I do have is constantly interrupted and I can't accomplish things I need/want to get done.  Mostly, I'm just tired.