Day 124

Wednesday September 25, 2013
\Physical:
Although DH again was wanting to get up "early" (9:00 this time), within a short time he was ready to lay back down.  He did have a morning of unusual clarity - when asked, he knew exactlywhere he was and that is it "home".  Of course, he then proceeded to tell about some place we went yesterday (which, of course, only happened in his head).  His B/P and sats were actually very good.
The dialysis from the night before messed up, but I didn't realize it until after he was up.  I didn't figure out what the problem was until time to try to set things up.  The machine had changed a setting - it's an area I never touch, so no way it was done "accidently".  I had to have help getting it back to the proper setting; but whenever turning the machine on, instead of going straight to the start up screen, it's going to the USB screen and I have to check the settings.  I will HAVE to have the machine replaced.
Trying to get dialysis gong was a complete nightmare.  The first time it kept trying to drain for a long time; I finally decided that the screwed up exchange from last night had not left a "dwell" so there was nothing to drain.  I bypassed, but as soon as the fill started he was saying he was in pain, to stop it.  I bypassed and went to dwell, then skipped that back to drain again.  It drained this time; but when it went to "fill", the machine absolutely refused to work.  I checked all the lines, the clamps, everything there is to check.  But the machine simply wasn't pumping (could tell because the fluid is warmed, and the tubing was still cold).  By then it was nearly midnight, and I'd still not had any sleep.  So I turned it off; and started over again this morning (Thursday).  Don't know yet if it's going to work; but at least he's sleeping soundly. 
People: 
When it rains it pours!  The nurse came, fairly early - so glad I had gotten an early start!  The social worker also came.  Turns out it was time for his re-evaluation.  It's sort of ironic that of all days, everything was "good".  But they didn't even hint that he could be removed from hospice - which would of course be a complete disaster!  Not long after they left the aide got here.  While she was here I tried to just sit and rest some - having had NO sleep the night before.  He laid down during the afternoon but didn't really nap much.  I dozed off and on; but every time I would nod off, the phone would ring.  Even the doorbell once - little girl from next door wanted to know if I had an old lunchbox she could have.  But the only one I had was just plain blue, and she wanted something "girly".  I pointed out to her that I had all boys - I never get much that's "girly"!  DSS also came later.  I had told him it was OK to park a car in our yard.  It's one he's trying to sell and he's afraid if he leaves it in town it will get damaged over the weekend (Mule Days). He was able to help me with getting the machine settings back where they belong.  He also wrote down the phone # so I can call them, which I will do today.
Emotions:
As always, I'm so tired that everything is becming overwhelming.  The nurse and social worker were asking if I had any "help".  No, I don't.  But really, if we can just get the dialysis back right (first problems we've had in a very long time; and it probably is time for a new machine anyway). and get DH to sleep through the night, I'd be able to manage.  It's very frustrating to not be able to see what I'm doing, and not be able to go anywhere.  I don't like having to depend on DSS's girlfriend - even though I'm sort of paying them (helping with storage), she's still not overly concerned with what I need.  She did stop by the grocery store yesterday (oh yeah, forgot that, one more person stopping by).  She only got a few basics - about $15 worth, and I gave her $20.  Pretty good "tip" I'd say!  I really need to get the new reading glasses - I don't even know how much good they will do, but it can't be worse.    But since the only time the girlfriend can manage to spare me aany time is on Sunday (yesterday she was here less than 15 minutes - only came by because she had to pick up the boys at the school only 3 miles away anyway)  No eyeglass places are open on Sunday (and the only place remotely near that is affordable (no insurance) is Wal-Mart.
As tired as I was, by the time I gave up on the dialysis last night I was beyond sleep; so I mopped the kitchen floor.  He woke up around 4:30, wanated to get up to pee. But he did go on back to sleep after that.  I got the kitchen put back together, dried and folded a load of laundry; then got about another hour of sleep.   
I'm still tired today, but not quite as bad as yesterday.  I'm still struggling with overwhelming sadness .. not even sure if it's because of exhaustion, depression, or what.  Maybe today will be better.