Day 117

(Tuesday and)Wednesday September 18, 2013
I am not using my "regular" format, just need to write about Wednesday.  
The day started out reasonably well (considering a lack of enough sleep again).  Although he kept trying to go do things that he can't do, I managed to get him up, dressed, and into the car with minimum trouble.  We got to his clinic appointment on time.  
This month's doctor is the nice one.  Also, I like the male nurse better than the regular PD nurse (she was on vacation).   He's kinder; and also voluntarily helpful.  The social worker and the dietician also came into the room.  The SW was mostly just saying Hi and not to worry about the bill (supposed to be a waiver, but that takes a long time).  The dietician went over his labs - everything is actually very good.  That's kind of sad.  They're keeping him in great shape so he can die more slowly.  OK, that's not really a fair statement; and I know they're doing their jobs.  It just feels so much like they and the other doctors (who have turned his care over to hospice) are at cross purposes.  The one says do everything we can to make him comfortable; the other keeps wanting to change meds, give him shots, stress about what he eats.  He has very little appetite, and I fix him - as best I can - what ever he will eat.  He likes Hamburger Helper, so I occasionally fix that.  She keeps harping on how UN nutritional that is.  And they keep trying to push on him the protein stuff - shakes, bars, ice cream.  He doesn't like any of that stuff; I'm lucky I've hit on a "recipe" for his morning drink that he'll accept.
With help from the male nurse, I got him back into the car.  I stopped for med refills (3 for him, 3 eye drops for me) - and to my everlasting frustration, I completely forgot the new Rx the nephro gave him for a different sleep aid.  
After that I went by DSS's shop.  I have 2 cell phones - both paid for this month - and neither work.  I have to get that straightened out!  So I let DSS know we were going to stop by the grocery store and then go home, and he was to meet us at home.
I got groceries, got home, unloaded the car, got food put away.  I was about to go on and try to get DH out of the car myself (he'd already been trying to get out by himself, even though his wheelchair wasn't even there for him).  Then DSS got there.    After getting DH into the hosue - again, no trouble and no falls - DSS finished mowing the grass.
Just after gtting DH settled down for a nap, the nurse called.  Not the regular one, the first one who subbed for her.  She said she didn't know why, just that she had been given his name for her visits today.  She got here in the late afternoon, checked him out, talked to me a bit.  I didn't ask what his vitals were; apparently she was satisfied with them.  She did see, however, that his confusion is more or less a permanent condition any more (he told her he wanted to go "downstairs"!).
Our talk was brief; and since she doesn't come every week, she couldn't really address any issues I had.  She did make a note to order the only medicine he takes that they cover (Dulcolax).  It's begun to seem like ones that come make notes about things - and then nothing happens.  I know they have other patients that are more critical than DH is right now.  But I don't think that means he deserves less attention.  It is starting to feel like thenurses (and aides) are so rushed, and have such a huge territory to cover daily, that they rush in and out and don't have time for us.  It's frustrating to me to have no one to really talk to about him.  
He neveer got back out of bed except to use the commode (around 7:30ish; and again around midnight).  I brought him some supper and he ate while I was setting up the dialysis.  Once I got him connected and he had finished eating, I left him watching TV .. and he went to sleep.  He woke a bit when I turned the TV and lights off
Later he woke up again, and I could not get him to go back to sleep.  He was convinced he was in a school this time.  And at one point - while sitting on the commode - he told me call the police, call his mama, call anybody to come get him out of here.  The night went downhill from there.  Every time I left the room he started rattling the bed rails until I came back (and was doing that on purpose).  I gave up and sat in the cahir for over an hour.  He would almost get to sleep - then pop his head up to see if I was still there.    It was close to 2:00 before I finally left and got to my own "bed" to sleep.
I got about 2 hours of sleep before the phone rang.  DSS called - some (insert as many dirty words as you can think of) jerk had set fire to the boat.  Again.  He tried it once before, burned up the tarp.  This time he succeeded, and burned the shop.  DSS is caught between furious and distraught.  I'm totally amazed that I'm the one (after his GF of course) that he called!  
The boat was DH's.  He bought it for way too much $$ when he got a retirement settlement.  He was SO proud of that boat - even though he never set foot on it.  For several years he paid for it to be stored; we finally persuaded him to go on and pay someone to haul it up here, and it was stored (slowly be refinished) in the parking lot to DSS's shop.  
The GF called about an hour later.  They were finally able to get inside (oh, forgot, police wouldn't let DSS in the shop; but he did walk around to the back and find that the dog was safe)..  It seemed - as best they could tell by flashlight - that there isn't too much damage inside, so a huge relief (even though it will take DSS a very long time to get over his fury).
By then I gave up completely any chance of getting more sleep.  I turned on the TV, started a load of laundry, got some coffee.
DH is still not sleeping.  In a very ironic twist of fate, when I went in around 6:00 to find out what he was up to this time - he said he was in the bottom of a boat, out to sea, waiting to go fishing.
I do not know how we will go on.  Putting him in a facility is not an option.  If he's confused now, what would happen if he were forced into completely unfamiliar surroundings with no one familiar around him at all?
There are people who, for whatever reason (jealousy?), just hate that we live in this big house.  We don't own it.  It has a lot of problems, and we try not to call on the landlord for anything more than absolutely necessary (rent is relatively cheap for the size of the house and yard).  And yet there are people telling me that we pay way too much.  I supposed it's possible we could rent a trailer or cracker box apartment for less.  But why would we want to?  Why is it so wrong to have enough room?  And are we not to be allowed to ever have family visit again just to satisfy busy-bodies who think we should live somewhere else?  Yes, the electricity is "iffy"; the plumbing is lousy; and technology is practically non exhistant.  But why do other people object to us having *things* and the space to have them? Have we not earned the right to have anything?
OK, I'm getting off subject and into a bit of a rant.  I'm just so totally exhausted and stressed; My head aches and my eyes burn because I can't stop crying.    And the only person with the remotest chance of giving me a break now has huge worries of his own to deal with (and without his dad every knowing about the shop, and especially that the boat is completely gone).




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