Day 18

I’ve not heard anything more from the Paliative Care lady.  Which, to me, IS an answer.  I believe that if she’d found any loophole through which Jimmy would be admitted to hospice, I’d have heard by now.  OK, granted she’s only had 2 days; then again, it wouldn’t take 2 days.  Doreen thought that there was aa chance they’d find *something* since it was a different company.  But, the same Medicare guidelines would apply; and Medicare quite clearly has decreed that only people on their deathbed are eligible for hospice care.  And since we have the nerve to keep Jimmy alive by dialysis – even though in all of his doctor’s opinions the kidneys and lungs are 2 completely separate medical issues – he’ll never qualify.  Personally, I don’t think they (hospice) are really tying all his conditions together.  I think that most likely Medicare has said that if a person is on dialysis, no matter what their medical conditions are, they are not eligible.   If you keep a person alive by “artificial” means, they can’t be admitted.  It’s just that simple.  I’ve said it many times lately, and I still believe: the government wants all of us “older people” to just die off and quit wasting resources.  Jimmy is no longer able to be a “productive” member of society, therefore he’s useless.  I guess that sort of explains the number of very old people in nursing homes.  There’s nothing “wrong” with them other than age.  But they’re relegated to inferior care, and limited options, because they’re old. 

I will probably not fall completely into that category – but only because I have insurance.  As soon as I became eligible for Medicare, I got a very good insurance policy.  It’s too expensive; and when the time comes that I have only my Social Security, I will be one of those old people choosing between paying for heat or buying groceries.  Or maybe neither, as the rent would take the bulk of my income.  Then again, once my vision goes, I suspect the kids will try to force me into one of those nasty crumby tiny government apartments.

OK, this is about Jimmy, not me.  There’s really no need to write caily.  Things just don’t change that much.  I’m totally discouraged at the amount of time he insists on spending in bed with the BIPAP; but there’s really nothing I can do.  It sounds wrong, but I’m really looking forward to when his lung function decreases enough to qualify him for oxygen!  Because, I believe that once he has oxygen available 24/7, he’ll actually be more likely to be *up* more. 

Last night after only being up about 2 hours from his afternoon nap, he was wanting to go back again.  He says he “needs to suck on some air”.  Nothing anyone says can convince him that he is NOT getting oxygen through the BIPAP.  He refuses to believe it is just room air (which it is – under pressure, but still only room air).  If he had gone back when he wanted to, it would have made the whole evening inconvenient to put it mildly (I was in the middle of fixing supper).  But … Carl came by.  He had promised to inject the heparin into the solution bags (which I had ready for him).  He stayed about an hour, and amazingly, Jimmy wasn’t too “short winded” to sit and talk to him.  And, he ate his dinner while he sat and visited with Carl.  So, my thinking is that he’s just bored; and not interested in any of the things we’ve all tried very hard to get him to do.  If there’s nothing on TV to catch his interest, he just wants to sleep.    He enjoys visiting with Carl.  Actually, he pretty much enjoys visiting with anyone but me … he too used to me (and I’ve become just the caretaker).  He is looking forward to Michael being here; but Michael isn’t going to just sit and talk to him.  He’ll try his best to get grandpa up and doing something.  (One plan already in my mind, is that on appointment days, Michael can push grandpa in a wheelchair in Wal-Mart so we can get things done.  That means an extra getting him in and out of the car; but Michael will help with that too).

Jimmy used to be interested is so many things.  Everyone has tried to get him to do some of them, but he just refuses.  I suspect that may have to do with the dementia, although we didn’t know it.  He frequently says about something (i.e. remembering how to use the TV remote) that he “just can’t wrap his mind around it”.  I think maybe he knows that he no longer really nows how to do those things (carving, painting, building models); but can’t quite grasp why he doesn’t know.  That’s got to be frustrating and depressing for him.  So I think the key to keeping him “active” (alert; sitting up) is people around him.  And I just don’t know how we’re going to manage that … people have other things to do than just come sit and visit with him.

This is going to take more thinking about, and discussing with the family!

Note: I've seen that I have 2 "followers".  Amazing!  I don't recognize the screen names, don't know if they are anyone I know or not.  I'm not sure if I read the information correctly, but it looks like this blog gets lots of "views".  Even more amazing! But, a reminder, comments are welcome.  If anyone has more than a quick comment to say, please use  olgramy@inbox.com  ... an email account I've set up just for use in connection with this blog.  I'd really be glad for any input, whether it's criticism or advice or just support.