Day 236

Day 236

(Tuesday and) Wednesdayday January 15 2014

Physical:

The last 2 days have been mostly “stable”.  I always say I see no change; but I wonder if people who aren’t around DH regularly do see any?  For me, the days don’t seem to change.  If anything, he’s been fractionally less disoriented.  Or maybe he’s only a bit less insistent about what his mind tells him is real.  One day he can be convinced to stay in bed longer (because when he gets up early he actually seems to sleep more); the next day he’s determined to get out of the bed.  He still mostly has no idea where he is, and wants to go home.  He says it less; sadly, I expect that’s only because he is able to realize he’s going to be told he is home, and since he doesn’t belive it he quit “trying”.  Or something.  Actually, I have no idea.  Once in a rare while there’s a glimpse of his “real” person .. and those times he seems a bit sad to recognize his loss of control.  But that doesn’t last either.

His appetite has been on the low side these few days, although he did fairly well last night.  Except, of course, he took *maybe* 2 bites of lettuce – but ate 3 chicken wings.  Hmm .. not so much after all.

People:

The “regular” CAN is back (after 2 days last week off sick).  She was here early Tuesday, and around the regular (noonish) time Wednesday.  The nurse actually came very early Wednesday – but I was in the shower and didn’t hear her knock or call.  I can’t get it across to people that before 9:00 is just too early here.  Anyway, she came back a bit after 1:00.  DH was up (he’s usually in bed when she comes early); but snoring even as we sat there talking. 

Emotions:

To start with – nothing to do with DH – I’m feeling extraordinarily cheated this morning.  It’s snowing .. north and west of me.  And the weather lady has repeated multiple times that it will stop by the time the front moves east across “95”.  I’m not to get to even see any at all?  It’s disappointing. 

I asked the nurse for information about hiring someone (a nurse or CAN?( fir a weekend.  She only said the social worker would have to answer that and she would ask her to call me.  Well, I remember what happened last time the S/W was supposed to get information to me.  Nothing.  So we’ll see.  The nurse did say she thought it would be hard to find anyone willing to deal with the dialysis.  It’s looking like the fact that he’s on dialysis means I’m never ever ever to be allowed a “break” … unless I force him to change to hemo.  I will not do that .. when he was able to express his feelings, he was adamant that he did not want to go back to that, and I will NOT be the cause of forcing him there.  Besides, along with other issues, it would put him on severe food and drink restrictions.  It’s already hard to get him to eat – taking away everything he likes makes sense?  I think not.  I do have an idea about that; but I’m not jinxing myself by saying anyting until I can do some “research”.

Meantime .. I’m still tired.  I don’t know why I keep expecting to sleep all night (or mostly), I’m suddenly going to wake up full of energy and ready to go.  It never happens.  There are so many things to remember (pills, eye drops, dialysis, who’s coming when, etc).  My days have gotten – this week at least – into a bit of a routine: up around 5:00, around 4 hours of productivity, and crash. I keep hoping I’ll have an afternoon where I get some things accomplished.  Instead, I nap.  I must be getting old. (