Day 69

Tuesday, July 30, 2013
Physical:
DH had a clinic appointment, so today was a bit rough.  He had to get up, get dressed, get in the car and out again at the clinic.  It took around an hour and a half (because they, like everyone else, assume we have absolutely nothing to do and can't be bothered with letting us know what they scheduled, such as giving him an iron transfusion) before we could leave.  During that time I had a brief (meaningless in my opinion) meeting with the nephrologist.  He's nice enough and all, I just didn't see the point.  I had long talks with the AD, a very nice girl (who had the good taste to be wearing the same colors I was and cute shoes too).  It's very odd, all things considered, but his labs are actually excellent.  His body in general is failing; but the dialysis is doing a better job than his real kidneys did.  And even though he barely eats any more, his values are all in the good-to-acceptable range.  And yet, when we were finally ready to leave, he didn't even know where we were. So again, the struggle to get him in the car.  He waited while I ran in the pharmacy and grocery store.  Then another struggle to get him out of the car.  He's just not able to stand, even with help.  His knees buckle, and he tries to sit down - even when there's nothing behind him to sit on.  And his hands grab hold of the car and refuse to let go (so that I can get him turned around so that the wheelchair is behind him).  It is exhausting and frustrating.  Once I got him in the house, he was "not there".  He wouldn't put the oxygen canula on, and couldn't say anything that made sense.  Then he told me to go away, he was going to get on the bed.  I did finally get him on the bed; and later (a few minutes) I went back and just put the canula on him; he promptly went to sleep!  Later in the evening he was a little disoriented, but not so confused.  (Confused is not really a good word, but I don't have one that is.  He knows what he's saying, it just doesn't make sense to me.)  I got him up later to eat supper while I got his bed made (had to strip off damp sheets in the morning, hadn't had time to make it then plus it needed to dry a bit.  Sprayed the mattress pad with Lysol before we left) and get dialysis set up.  I had multiple phone calls during that time, but got done.  He chose to go on to bed around 8:30.  I'm pretty sure he slept most of the night.
People:
Besides all the various people at the clinic, he actually didn't see anyone else except (briefly) my girlfriend.  She was working in the yard when we got home, but since I took him straight back to his room, he didn't see her again.  She is a huge help to me - because it doesn't bother her at all when I get stressed out and scream at her!!  She just said sit down and eat cake!!
In the evening I had a long phone conversation with brother and sister-in-law in TX.  That was so nice.  Then DH's *other* son called, but the cordless phone died before they could say much more than hello.  He will call back another night.  (I since found out that he only called because #1 son called their mothr and told her of DH's condition and that *other* son needed to call his father!).  
Also, the clinic nurse, whom I didn't get to see today, called.  She's trying to work out a way to have to bring DH into the clinic fewer times.  Even if everything is worked out, he'll most likely still have to go in twice a month - once for labs (blood drawn) and once to see the doctor (per Medicare requirements).  She's trying to work out at least for the hospice nurse to give the EPO shots he gets every week.
The little girls came over, and I told them it was a bad day so to not come over to play.  They came back later with cards they made for us!  Sweet girls, and nice that they "get it" when I say to go away!
Emotions:
Because it was a rough day physically, it made for a very rough day emotionally.  I cried a lot - from exhaustion, frustration, sadness - you name it.
Talking to family was great; and my sister-in-law understood a great deal of what I'm going through, as her mother lived with them and was on hospice in the end.  She even understood the end-of-the-day craving for chocolate!!
The day ended fairly calmly, with DH getting to bed a bit early and no new drama.