Day 209

Day 209
Friday December 20, 2013
Physical:
DH ended up staying in bed more than half the day.  He got mad at me in the morning and refused to get up; then just decided to stay where he was.  His bath was much later in the afternoon than usual; but he wasn't offered an option of getting up then.  
As usual, he slept off and on in his chair, and was ready for bed by 8:00.  But then .. again .. he woke up only a few hours later.  He did settle and go back to sleep (without any gel); but he didn't sleep well.  He kept waking up restless, but then would go right back to sleep.
By 7:00 this morning (Saturday) he wasnted to get up (but a potty break first). His mind just keeps getting worse.  He totally cannot realize/accept that this is home and he lives here.  He also continues to believe he's been out walking around, coming and going .. so it's a constant effort to be vigilant and make sure he doesn't try to get up by himself.
His appetite is still not good; but he will usually eat if I give him something - especially if it's something he really likes.  But I have also seen him fall asleep holding a sandwich and forget to eat it.  I bravely tried a rice dish again, and of course he managed to get  sticky rice all over himself - even with a towel draped around his neck.
People:
The supply delivery came in the early afternoon; and the CNA got here about mid afternoon.  DSS called in the evening, but only talked briefly - said he was losing signal & would call back, but he never did.
Emotions:
It's probably a bad idea to be writing this morning.  I'm so stressed and frustrated.  DH demanding to get up so early after a not so good night makes me exhausted and very grumpy.  It feels like what tiny sliver of time I get for myself is being taken away.  It feels like I'm not even a normal human being with any feelings or rights.  I'm just a slave 24 hours a day.    I desperately need for his sons to step u and do a lot more to help out - and that just isn't going to happen. 
I know it's not reasonable or practical to want someone else here all day or every day.  I would not even like that .. but what I would like is occasionally someone to take over being responsible for him for a day or even a few hours.  On Sunday afternoons DSS is here; but the most he ever does is take his dad back to lay down, or maybe get him up.  He helps me get him to clinic, but he's not here to help get him up and dressed.  Every time I ask him to get here early; but he always shows up just when it's time to leave.  Not a single one of them has ever made any effort to learn anything about his medications, his dialysis, or anything.  And they (at least some of them) are aware how bad my vision is getting and how hard all of that is getting.  They simply don't see taking care of parents as their responsibility.
Earlier in the week I had a chance to ride with my sister to see Lights.  That would have been maybe an hour.  But at the last minute TGF was sick.  She called and said DSS would come over, because they were *trying* to let me go have some fun.  Well, there was a major communication problem.  He was at his shop waiting to meet with a contractor when DSis got here .. so I didn't get to go.  It was not that big a deal; and I might get another chance.  But it's just another example of how anything here takes a "back seat" to anything else.  TGF can never take me anywhere on Saturday, because she has too many things more important (like last Saturday - the church took her shopping for Christmas presents for her boys; then she had to take one to basketball and one to football; then she had to go to a party with her best friend.  Well, obviously, all of that was urgently important.  It's not that I expect her to drop everything - or anything - for me.  But seriously, it's a major hardship that I can't even ever go anywhere on a week day.  Oh yeah, she had said she didn't work Wednesdays in December so she could take me shopping.  Yeah, right.  That didn't happen .. she planned many things for all of those days.  She did manage a few hours one afternoon, but not to go anywhere.
Even with my decorations up, I just don't feel like I have any Christmas spirit this year.Even while I know it's better for DH to not have too much company, I feel alone.  His sister has frequently said she would come by .. and then never shown up.  She even said she'd come spend an afternoon here with me baking.  But that never happened.  I used to bake a lot at Christmas; but it's just more trouble than it's worth when I can't see well enough to even set the oven right. I finally came up with some no-bake recipes, but I can't even do those until after I get to the grocery store - which of course will not happen until Sunday afternoon.  I can't recall a time when we've had company during the holiday.  DS has out of state comppany - and he doesn't have heat, a kitchen, and only one bathroom.  So there must be something drastically wrong with us, no one ever wants to visit more than just an afternoon.   I'm envious of families who get together for long weekends, holidays, whatever ... I envisage them having good food, drinnks, laughing a lot, enjoying each others company.  And I stay here alone with someone who can't even carry on a conversation (he just told me a few minutes ago he had to be heading home soon).  There's no Christmas music or TV specials .. partly because he has the TV turned loud enough for the neighbors to hear.  My head is just thumping.  
I guess I need to go on and get a shower and get yet another long boring day started.