Day 103

Wednesday, September 4, 2013
V/S: B/P 170/89; HR 75
Physical: 
This was another stay-in-bed-dall-day kind of day.  The aide came around 11:30ish.  He told her he felt extra sleepy.  Of course, he also told her he couldn't leave because the car wouldn't start.  His mind has been "stuck" at the bank for awhile now. Anyway, she got him bathed and dressed and up, and I got him into his chair.  He likes the lift chair a lot, and likes it with the hoot rest up (which he didn't especially like to do on the previous recliner; but I think maybe it was because it was too hard to get up and down).  By only 2 hours up he was saying he wanted to lay back down, but he did wait until it had been 3 hours (and I rushed to get in the room and do some dusting and change the sheets).  
Later in the afternoon/early evening he said he was ready to get up but wanted to sit on the commode first.  After sitting for awhile, he called me.  He said he thought he was ready to get up but then felt "woozy" and wanted to lay back down instead.  He said for the rest of the evening he "felt bad", but couldn't put a name to anything in particular.  He didn't want to get undressed (highly unusual), and refused to eat anything (even when I offered a pork chop!).  I did turn the TV on for awhile, for his favorite show, but he mostly slept through it.
Since he got his weekly epogen shot at home, I now wonder if that makes him feel bad.  Always before he's been at the clinic; and by the time he'd had to get back in the car, ride a bit while I ran errands, then get out of the car at home, he always wanted to lay down the rest of the day.    I never connected feeling bad with the shot because he was so exhausted; but this time he wasn't, and yet, by evening was feeling bad.
(Note: this morning when I took the "early" pill he said he felt OK, which seems to me to confirm my suspicion that the shot makes him feel bad).
People:
The aide came and got him bathed.  In the late afternoon the supply delivery came (I was kind of surprised it was the "regular" guy since it was on a holiday schedule.  He always askes how DH is doing; and he knows the cats by name and speaks to them if I don't have them shut up in another room).  After the supplies, a nurse from the clinic came out to give DH his epogen shot (as mentioned above).  They're working on getting it so he doesn't have to go into the clinic so often.  The regular nurse will eventually be giving him the shots, but she's sick right now.  Since they had already changed his instructions to "out patient", and had already had the suppies sent here, someone from the clinic had to come out.  It wasn't the regular clinic nurse (I get the feeling she doesn't like having to come out here.  She's nice, but I do miss the nurse he used to have.  She was friendlier, and didn't mind coming out here sometimes).  Later in the evening our grandson called so he could talk to grandpa.  I heard DH tell DGS he was waiting in the bank parking lot (he had told the aide earlier he couldn't leave because the car wouldn't start).  I found out later from DSS that DH told DGS that I had taken the hospital bed to work with me that morning.  When I questioned DH about that later, he said he'd been in the bed of course. 
I talked with DSS - he calls almost every day.
Emotions:
I've mentioned feeling lonely.  I miss family when they aren't here, but I know perfectly well they can't be but just so much.  The thing no one really grasps yet is that most of the time DH has already "left" me.  He's off in his own little world, and often seems either puzzled or frustrated that I'm not sharing that world (and more and more often thinks I'm his mother anyway).  He's not in pain, and doesn't too often say he feels bad.  I know when he struggles to breathe he's uncomfortable; but we've not yet had to turn up the oxygen level.  When the nurses come his sats are usually in the 90s still (with the oxygen).  I wonder if they drop at night since he so often sounds like he's struglling more, but no way to check that.
Anyway, I've started having trouble sleeping.  Not because he wakes me up; but I don't sleep very soundly to start with.  So mice in the kitchen wake me up.  Or DH breathing particularly hard, or wheezing, or coughing, wakes me up.  And sometimes I don't even know what.  But I almost always have a very hard time getting back to sleep.  Last night I was awake for hours ... I checked email, watched news on TV, pinned the hem in a tablecloth, ate a bowl of cereal.  Nothing helped, it was well after 5 AM before I got back to sleep; so of course I'm tired, groggy, headachy.  So I'm not sure what emotions are valid and what are just from sleepy.  I feel sad and lonely a lot, but I think that's just something I have to go through on this journey with DH.  As I've told the different hospice people, there's no instruction manual for dementia.  And unless someone else were physically living here (been there, done that, don't especially want to do it again!!), there's no way for anyone else to really comprehend what it's like.
I think the only way to not feel sad, or any of the other emotions I'm going through, would be to have no feelings at all.  If that were the case, I'd put DH in a facility and never look back.  That's Not gonna happen.