Day 203

Day 203
Saturday December 14, 2013
Technically, it's Sunday morning.  We're having a bad morning.  A really BAD morning.  I wonder if he's gone completely "around the bend".  Up to now I've been able to either talk him out of whatever fantasy he's in, or calm him down enough to get back to sleep.  Not today.  He's convinced he's in a car (and has been since long before daylight 0 meaning, once again, not nearly enough sleep).  He dumped the water out of his cup and "threw it in the backseat".   He just told me he thinks his "stuff" (gun cabinets, bookshelf, etc) is out on the street, that I put it out there for trash pickup "just for spite".    So now I've turned into the bad guy .. because I won't get him his clothes (in the washer!!) and help him get into the driver's seat.  Absollutely nothing will convince him otherwise, and he refuses to even try to go back to sleep.  
It's times like this I feel so very deserted.  Not by family and friends.  But the * professionals* who are supposedly taking care of him .. bottom line, they think he should be in a facility.  But no facility will continue his dialysis; or at the very least - so far as I know yet - they'd insist on putting him back on hemo, blatently against his wishes.  They always tell me "call if you need anything".  But they don't actually mean it.  While they maintain that he absolutely does belong in hospice, and since his lung issue is non-treatable and will continue to get worse, he is in no danger of becoming qnqualified for hospice; but they aren't "treating" him for dementia.  And that's what is the absolutely worst. Technically there is something in the "care kit" they provide.  But I've told them and TOLD them that I can neither read the labels nor draw anything into a syringe ... so the kit is useless as far as I'm concerned.  And in any case, I seriously doubt he'd let me give him anything right now (they say there's something in the kit to "calm" a person if needed).  The CNAs drift in and out, are very nice and do their job well.  The nurse comes once a week, checks his vital signs, gives him an epogen shot, then chats with me.  Whatever I tell her, she says "it's to be expected" and asks what I'm going to do.  What??  I have a choice???  I don't think so. :(  She asks if I've talked to "the family" (meaning the boys and their wives) .. well, no, because it's not a discussion they are interested in having with me.  The social worker and the chaplain said they'd be coming by "every 2 to 3 weeks".  Well, that's not happening either.  It's not that they really *do* anything; but if nothing else, it's someone to have a conversation with.   But with the social worker, it seems like it's more once a month.  The chaplain said he'd be back (last week now) after his aborted visit, but that didn't happen.I know they've got lots of other patients, and probably most of them way sicker than DH is.  They've often said about having just lost a patient.  That's the business they're in - they always loose their patients eventually.  I don't know if they have any others who are as completely alone with caretaking as I am; but I do know many of them have multiple family members either living in the home or rotating responsibilities.
That doesn't apply here.  There isn't anyone else to do anything.  The one family comes as often as they can; but DH tends to just sit and stare at the TV, and doesn't join in any ocnversation.  The ones that live close enough to come more often only do so when I make it worth their while; and for the most part, that's only one afternoon a week.  And even then I often have to settle for whatever bit of time they can spare because there are other plans for Sunday afternoon. It's quite frustrating trying to remember all the things I need help with and then trying to hustle them together to deal with in a tiny sliver of tme.
And "friends"?  Forget it.  The one friend I*thought* I could count on most, has completely deserted me.  It seems like the more helpless I feel - between caring for and dealing with DH and my failing vision - the less help I get.

It is now nearly 8:00 AM.  After close to 2 hours of struggle, he finally got tired enough to lay down and pull the covers back over him.  He still believes he's in a car though.  But he's quieting down (I think), and if he can just lay quietly a few minutes he'll probably go back to sleep for a few hours.
One bright sot for me is DS and family.  They came yesterday (note: it's a 2 hour drive for them!) to bring fruit bought from the school band fundraiser.  I do that most years, but give away most of the fruit - way too much for DH and I to eat before it spoils.  Anyway, DS took me to the grocery store (in pouring rain!)  to get part of my list so that I won't have as much to get today when TGF takes me - since she has something else to do that cuts my time short.  Also, my DIL got 4 audible books (brand new releases by some of my favorite authors, plus a classic old one) loaded onto my Kindle, so I once again can have "reading" (listening) time.Even better, I recently had a "trial" of Audible, and got credits .. so my books were all free!  That's a blessing, considering the car is about to wipe me out. :(

I wonder if having company into the evening over stimulates DH?  He was actually so tired he was ready to go to bed by 7:30; but by 11:00 he was awake.  I did manage to get him settled back down fairly quickly then .. but it was a short night.  Now he's soundly asleep - and I'm wide awake and headachy again.