Day 201

Day 201
(Wednesday and) Thursday December 12, 2013
Physical:
DH seems to be going through an odd sleep/wake cycle these last few days.  On Wednesday he was content to stay in bed, through the nurse visit, and until the CNA got here.  He then slept  about half of the afternoon.  On Thursday he woke me up at 3:00 AM (thought he was going to take a shower), at 3:30 AM (wanted to get out of the tub to go to bed), 5:00 AM (thought it was time to go home), at 6:30 AM (don't remember why; I was already awake anyway).  At 9:30 AM I gave up and got him up.  And of course that was a day the CNA came early; and after bath he elected to stay in bed.  He wanted up again around 3:00.  By 8:30 when I took him back to go to bed, he could hardly hold his head up; but he still fretted a bit and took awhile to get to sleep.
Although he coughed a lot, he did sleep all night.  
He has no particular appetite, but will eat if it's something he especially likes.  I'm still cautious about what he eats late at night.  On Thursday I made him a turkey sandwich, but he fell asleep and forgot it!  I heated it back up later, and he ate it.  But then he ate 2 bowls (shallow bowl) full of chicken & pastry.  That did not seem to bother his sleep at least.
People:
The nurse came on Wednesday as usual.  She noticed how "off the wall" he was talking of course.  He was not agitated or anything, but totally in his own little world.    She told me that the social worker is looking into a possible hospice respite facility that can handle the PD.  I refuse to get my hopes u, as I've been disappointed too many times.  And even if it would happen to work out, I wouldn't want to go anywhere before January at this point.  Well, unless just a small chance to see lights!  She also wants me to try to contact his doctor, who has been totally unresponsive.  I need to get her permission to switch his care to the hospice doctor.
The CNA came both days; Thursday she was unusually early (ironic since that's the day he got up so early).
Wednesday afternoon TGF came over for awhile.  She brought Subway sandwiches (yum!), and helped me with several things (mail, timers, pills).
On Thursday evening DH's sister and brother-in-law came over.  They didn't stay very long; but they brought food.  She had made the chicken & astry (it is SO good!), also brought otatoes, green beans, and some cake.  They brought the "toy" ppoodle .. and Maggie did not get upset.  Hmmm .. maybe I can get a tiny dog!  She picked out a stack of books to take (yay, another shelf cleared off).  She also said she'd come by one day next week.  I hope she does .. I'd really like to do some baking.
Emotions:
Much as I love my house, winter is a bummer.  The only heat in the back end of the house is one gas wall heater .. and it gives me a headache.  Between that and my eyes, I feel tired and headachy nearly all the time.  It makes me more short tempered with DH than I should be.  I KNOW what's going on is not his fault; but when I'm so cranky, I'm just not as patient as I need to be.  I hate to admit to what a terrible person I am, but that's how it is. :(
Sometimes when the nurse comes, I wonder if he'll even make it to next week (she's always telling me  to expect him to continue to "slow down", that this or that is a normal sign of his body shutting down.  But then she leaves, and he starts this wanting to get up and down so much .. and I visualize years and years stretching out of day after lonely day just like most are.  This time of year it's actually a little better .. because people seem to visit more around holidays.  I sure dread winter coming u!
**
I got interrupted when the dialysis nurse got here and lost my train of thought.  He told me he had to change the next clinic appointment, which didn't surprise me.  Now I have to figure out which date to go ... I'm thinking it will be better to go on next week and not worry about it over the holidays.  That might change a lot of things.