Day 97

hursday August 282013
Most of this day was OK. I didn't get DH up until about noon (he'd have laid in bed all day if I let him).  I thought the nurse would come but had no idea when.
Early afternoon, the nurse who came Monday called.  The regular nurse was sick and she would come instead, later in the afternoon.
That was OK, it just meant DH was more tired when she got there. He'd been saying he was going to go lay down on the couch, and I'd had to get a bit more firm with him in telling him he could Not do that.  I think he was annoyed with me.
As soon as the nurse was done (and his vitals were all pretty good), he said he was going back to the bedroom.  That meant she (and DSS, who was here by then, although he sort of has seen this) saw how he is about thinking he can do things on his own that he really can't do.  I told her, I'm so terrified he's going to get hurt, because he keeps insisting on trying to do the things his mind tells him he can do.
She was actually pretty comforting.  She pointed out to me that often people who have relatives in facilities get upset when those people have falls ... and that even professionals can't always prevent it.  She couldn't have known (but may have guessed) that I frequently wonder if I'm wrong to insist on keeping him at home.  I feel better about the decision after what she said.  But her point was that there's only the one of me here with him.  The kids may try to help to a degree; and *think* they actually are.  But in the end, they go home.  They're not the ones trying to talk to someone at 4:00 in the morning who isn't making any sense (and I'm the one losing sleep), or cleaning up after him, or any of the day to day stuff.
I left the house for about 20 minutes to take trash to the dump while DSS was here.  In that short time, DH said he needed to use the commode.  DSS, not knowing any better, left the room when DH told him he could manage on his own.  And - DH fell.  I didn't see it, so didn't call it in.  DSS got him up and sitting on the bed, with the intention of getting me to go help since he really didn't know what was the "correct" procedure.  When I went back to the bedroom, DH had gotten himself from the bed to the commode (doing the same thing that he had fallen trying to do moments earlier).    He seemed to think that we were just being stupid, because he was obviously capable of doing what he wanted to do.
Once he was done - which included a nonsense conversation about whether or not he would put underwear back on - I got him on the bed.  He didn't get up again, but did watch TV until 11:00.
But, he liked the makeshift supper I fixed him, so ate pretty good.
I hope I'm not "inviting trouble", but I need a place to say what's on my mind.  And no one reads this anyway.  Everytime a nurse comes and checks him out, and says he's doing well ... that his lungs sound OK ... I'm terrified they'll say he no longer qualifies for hospice because he's not "declining".  (I've been told that even reaching a plateau where they're stable can cause a patient to be disqualified.  Medicare really doesn't want to pay for anything more than they can help).  And if that were to happen ... I'd be really alone.  No more nurses or aides; clinic every week as well as regular doctor visits; payments on the bed and the oxygen and the wheelchair, plus doctor visits including trips to Durke.  But the alone part - with his increasing dementia - is what scares me the most.  The only actual physical help is when the aide comes and gives him a bath.  I could do that; and I do 99% of all the lifting and such now. 
But the concept of having no "back up", no one I could call on if neeeded, would be very depressing as well as scary.