Day 152

Day 152
Wednesday October 24, 2013
lLPhysical:
This was a very odd up and down day.  First thing in the morning, DH seemed fairly "normal" (or at least what passes for normal now).  But at some point, with no apparent triggers, he reverted to jibberish and inability to control movement.  He said he wanted me to get him up on the commode; but he was completely unable to do anything on his part.  In the end it didn't matter, and I got him mostly dressed by the time DSS got here.  It was still a struggle for the 2 of us to get him ready and into the car.
By the time we got to the clinic, DH seemed to sort of come out of it - and could talk - but he sounded slurrish.  The staff at the clinic certainly noticed the changes.
The doctor insisted on putting him on an apetite stimulant.  (this had been discussed before and rejected.  the hospice nurse agrees with me that it's counterlporductive).  He also changed both of his B/P meds (which is good in that I don't have to cut that stupid tiny pill any more).  I've been fretting about his wonky B/P for months, but it's the first time anyone else seemed concerned.  Of course, I can't make the changes until I get someone to help me read the labels on the bottles.
We were at the clinic a fairly long time.  The doctor went over his meds (and it seems very odd to me that after going there more than 2 1/2 years, that doctor didn't even know he'd had a lung transplant!) and make changes.  The nurse gave him a flu shot, also the weekly EPO shot (because he's back on that, but it will be done at home).  We also had to have discussions with the nutritionist (who keeps harping on the protein and appetite but tries to insist I give him "fresh fruit and veg" ... I can't even get him to eat things he does like.  So they think an appetite stimulant is the answer.  I'm very much afraid that will only make him crave junk.  I'm not starting it until I can discuss it with the hospice nurse.
Also the social worker insisted on a conversation about "what are you going to do".  Why does everyone keep ressureing me like this?  Don't they understand that right now one day at a time is all I can manage?  And no one has ever openly discussed the dementia in front of DH before (although he has been told his diagnosis).  He didn't really participate in the discussion, which is pretty much how he's always been. I have no idea how much of it he understood; and I found it a bit annoying that she chose to initiate the discussion without first talking to me about his understanding.
Once we finally left the clinic, we went by Wal-Mart and I picked u my new glasses.  They are a huge disappointment - not noticeably any better than what I already had.  So I guess I'm just doomed to live in a dark and shadowy world where I can't do many of the things I've enjoyed - but of course I'm still expected to do everything for DH whether I can see well or not.
We went by and picked up med refills and the new ones.  Then we went back to the other town, I had to see the bank manager.  Apparently I misread a bank statement, so had an overdraft.  He helped me correct it; also I got the PoA out of the S/D box so he can scan it into the system.  Once that's done, if anyone else calls from the bank I can talk to them.  
It's very terrifying that it's getting so hard to read the bank info.  
After the bank, we made a quick stop at the grocery store, then home.
Getting DH back out of the car was a major ordeal.  Even with the 2 of us, he very nearly ended up on the ground.  He just isn't able to push with his feet or do anything to help.  The only thing he seems able to do is grab hold of something with his hands.  Unfortunately, he aparently feels insecure so grabs what he can - which is often counterproductive (i.e. last night trying to take his shirt off, he kept grabbing the inside of the sleeve and wouldn't let go).  
When we finally got him inside, it was straight to his bed.  I hate the thought of him being restricted to bed (especially so soon after buying the lift chair).  But if I am not strong enough to safely move him, that's what it will be.
He didn't sleep but laid there quietly all afternoon.  In the evening he did eat one piece of chicken..  
He seemed to sleep fairly soundly all night.  When I checked on him early in the morning, he had not moved from his original position (which is unusual); but at least he's not trying to get off the bed.
People:
There were many people today because of going to clinic, and DSS with us all day helping.  
Emotions:
I'm experiencing a lot of confusion.  It almost feels like the kidney center and the hospice people are completely at odds with each other.  The kidney center says he's in great shape (even though the dementia is obvious).  They say the dialysis is going well, according to his labs (and if effects of kidney disease are affecting his dementia or even other organs, how would they know?)  They push to get him to eat more (better).  And yet ... he's completely immobile; his only strength seems to be in his hands.  He is partly incontinent, and fast becoming completely so.  He wasn't even using oxygen (because he wouldn't leave the cannula on), so they don't even see that he's on 3 liters at home.
Other than the cough, and the gradually lowering sats, there's no real indication that his lungs are failing.  And I admit - I'm totally terrified the hospice pleople will decide he no longer qualifies, and leave me totally stranded.   I've mentioned this to the CNA, and she reassured me; but I'm not getting any reassurance from the nurse.  I was told a long time ago that dementia was an acceptable diagnosis .. but there's no way they can say the dementia is "terminal within 6 months".  It progresses much slower than that.  
Oh gosh, this sounds just terrible, like I just want him to die.  NO NO NO NO NO>
I'm just so afraid of him declining slowely, over years, with no help at all, all the expenses, and my failing vision.

I'm only getting myself upset, so time to stop for today.  Maybe today will be a better day.  I know from what the nurse "F" told me, and from what I've seen, that the mental deterioration will come and go.  So all I can do is hope for a good day.