Day 112

(Wednesday, Thursday and)Friday Septembeer 13, 2013I'm not keeping up with this very regularly.  I'm just too tired; and it keeps getting harder to type when I can't see what I'm writing very well.
I am also not going to keep adding the vital signs.  I don't do them every day .. some days it just doesn't work out. I still keep a spreadsheet, though that's more habit than anything else.
Physical:
There was no particular change until Friday evening.  He said it had been an especially hard day, as he felt like he couldn't breathe well.  That's the first time in over 12 years he's said that. He wasn't wheezing, and didn't sound "out of breath" .. but seemed to feel he wasn't getting enough oxygen.  If he has another day like that I'll have the nurse check him again.  I hope it's not time to up his O2 liter flow.
He's also almost never "here" any more.  Nothing DSS or I say registers. Conversation (technically at 5:00 AM Saturday morning):
Me: what are you doing?
Him: trying to get up to go pay my bill.
Me: you're at home, there is no bill, it's 5 in the morning.
Him: OK.
Him: (a minute later) is the car outside?
Me: the car is parked where it always is, here at home.
Him: OK.
Him: (maybe 2 or 3 minutes later) This is no way to run a restaurant.
Me: no restaurant, you're at home.
Him: well is there any other staff here?
Me: just take a nap while you wait for them. 
Thursday night when I said "see you in the morning", he said "maybe".  I asked what he meant by that, and he said hi might drop dead in the night.  Friday night he told me he didn't think he'd be around in another year.  And more and more of his "mind trips" are with relatives of his that are dead.  
Does all this mean anything?  I have no idea., other than it shows clear mental changes.  His "theme" of wanting to go home gets stronger ... all I can imagine is that he's unhappy with the way things are, and some how thinks that going "home" will make everything all right again.
He still has very little appetite; and his body functions are slowing down way too much too.
People:
The aide came Wednesday to bathe him.  This was not the regular lady, but a nice sub.  On Thursday the nurse came.  A very odd thing happened:  the neighbor came over with her 2 y/o.  I couldn't understand her, but with the nurse's help, we figured she wanted to take the baby to use the bathroom.  Apparently something was wrong with hers.  That was the only time I've seen her in over a week.  
On Friday the aide came very early, just after 9:00.  I had slept late (due to another 3 AM wake up and couldn't get back to sleep for hours), and really had to scramble Just as she was finishing up, the dialysis nurse came to draw blood for labs.  The good thing is that they can do that, and one more week of not having to struggle to take him to clinic.  Of course, that also meant I can't get out to get groceries or pick up medicines.
Emotions:
Anything I say is suspect since I'm severely sleep-deprived.  Two nights in a row, going on 3 or 4 hours (and the 4 hours was 2 at a time with a 3 plus hour interval).  I'm depressed and sad, and very weepy. 
When the nurse visits and we sit and talk, I tell her how he's been doing.  She writes down everything, all the little incidents I describe, etc.  But then she says something along the lines of "he's going to continue to get worse.  have you given any thought as to what you're going to do?".. What I'm gong to do?  About what???  I don't see anything here changing.  No one is going to do any more about helping me out, other than DSS will try his best to at least get him to clinic.  DSS's girlfriend made sure I was aware that "they work" and can't be coming out here ... so clearly not only does she have no intention of doing anything to help me, she's doing her best to limit DSS's time here too.  And my son and DIL, now that school has started, have no more time for us at all .. no emails, no calls, nothing. My one girlfriend, who claims to "understand" my position (she was caretaker to her mother; but dementia was not an issue) seldom has time for me unless it's something *she* needs.
I want my house to look nice, and I'm discouraged that I'm not getting done the things I want to because I'm so tired that I seem to spend the afternoon in a fog, and have no energy
I wish there was something that could help DH sleep at night (he even stayed mostly awake Friday for an unusually long time, over 7 hours between his chair and his bed).  I think there's something in the "care kit" I have - but I can't read the labels and certainly can't fill a syringe.  I've told the nurse that, but she doesn't seem to remember.  At one time she had said that when the time came that it looked like I might need anything from the kit, she'd prefill syringes for me; but that hasn't happened.  I guess it's not tme.  I wonder how much sleep he needs - so that I can get some - before it matters?
I've heard nothing else still about the lift (and forgot to ask the nurse).  Maybe they've decided it's not needed until he's more completely bed-bound (since it won't help me get him from wheelchair to recliner and back).  I know it takes a lot of space, maybe that's an issue.  Whatever.  I'll just keep taking Aleve and muddle through the best I can.
I'm really going to have to do a better job of keeping this up daily.  Even if it seems there's nothing in particular to write about, it's too hard to remember when I let it go several days.