Day 207

Day 207
Wednesday December 18, 2013
PPhysical:

This day is a little harder to define, as it was not our "normal" day.  DH had his monthly clinic, and that's always stressful.  Getting him up and dressed was not too difficult, though he was a little fretful about where was this or that.  DSS and I seem to have a good grasp of how to get DH in and out of the car (though we both acknowledge some days are easier than others).  
We did not have to wait too long to get taken back to the "exam room"; but once there, we were there close to 2 hours.  Because it's only once a month, everyone has to come in and out.  The social worker insists on "chatting" with us, and asking hard-to-answer questions.  She wants to discuss things I would rather not talk about in front of DH .. I see absolutely no advantage in getting him upset!  She did, however, finally get a glimpse of how his mind is these days, when he told her we had been at the aquarium before coming to clinic.  The nutritionist had to come in, but I think she has finally figured out that trying to pressure us about his appetite is a waste of time.  The doctor wasn't in there more than 5 minutes at the most (and I'm pretty sure it was more like 3 minutes).  He was told (and I don't believe he was aware) that DH is on hospice, mainly for his lung rejection; but that also his dementia is getting much worse.  The doctor said the dialysis is working and did not change anything.  The nurse talked with me about how things are going, took care of a few issues, gave DH an iron infusion and his epogen shot (a double shot so none will be needed in the holiday week).  
By the time we left, DH was miserable and so tired he could barely hold his head up.  When we got home he went straight to bed, and slept until after 7:00!  At one point he did rouse enough for me to get him to take his ppills.  Later I persuaded him to eat a sandwich; and he also ate a bowl of sherbert.  At 7:30 he wanted to get up!  I was not sure that was a good idea, but got him up with no trouble.  He wanted to just stay in the wheelchair; and was only up an hour and ready to go back.
The gel came yesterday, but I didn't need to use it last night.  He woke up around  4:00 AM wanting to call the police because the trailer smelled funny.  But I got him to go back to sleep easily, and he did not get all agitated.
This morning he still thinks he's at the aquarium, and I did have to tell him several times to go back to sleep.  But he's being agreeable
People:
Because of clinic, there were all the people listed above, plus DH.  I still have not heard from DH's sister (I wish she'd at least call - he wants and needs a haircut!)
Emotions:
Last night I got a crying spell, but I'm pretty sure it was mostly from being tired.  Well, and a little discouraged.  It's only a week to Christmas.  I can't shop on line because I can't see well enough.  I can't go shopping because I have to have both a driver and a "sitter".  I only get that for a few hours on Sunday afternoons (and even that often gets shortened because TGF has something else she has to do).  Now I'm down to only one Sunday afternoon, and having to juggle what I can do.  I'm "settling" for gift cards .. I think that's a bit of a cop-out (even though I love to get them! LOL).  But there's really not much else I can do ... so now have to figure out how to juggle things so that I can get the rest of the cards I need as well as get groceries.  The bank only allows me to access a certain amount of my funds (and the gift cards can only be purchased using a debit card.
Anyway, stressing about that, worrying about  getting rid of the enormous pile of cardboard on the porch, just general stressing over all the things I can't do for myself and no one is around to help with .. at times, especially when I'm tired, it's just all overwhelming.  
I used to be a "Christmas person".  Not so much anymore.  We'll be pretty much alone on Christmas.  I know it's probably better that way .. I'm not even sure how much of it being Christmas season is even registering with DH.  But "crowds" seem to bother him (he gets more withdrawn and quiet).  He seems to enjoy when we have visitors a few at a time, particularly family.
But since I had so little help with decorating this year (and isn't it odd how the more help I've needed the less I've gotten from the people who professed to "understand" and care so much!),  can't really see what I do have very well, and can't do the shopping or baking or sewing I've done in the past ..just seems like a lot of the joy has been sucked out of me this year.