Day 16

I just have a few generalized thoughts stemming from my frustration with “the system”.  Medicare’s general guideline is that you get sick, you get worse, you die.  For example, it’s relatively easy to progress from a walker to a wheelchair.  But, it’s a lot harder to go from a wheelchair to a walker, because Medicare in general doesn’t believe people get better.

So, Jimmy is thwarting the system. He got sick.  He got worse.  But he went on dialysis, which is keeping him alive.  And because of that, he doesn’t qualify for any sort of assistance programs.  It’s like the thinking is that if you don’t follow the program obediently, then we turn our backs on you and wait.   Even his doctors (all but the nephrologists of course) are restricted by Medicare guidelines so can do nothing more.

I’ve repeated it often, but still annoys me: in the hospital, one doctor blatantly said “all we’re doing is keeping him alive”.  The implication (not only by that phrase, but by the rest of her comments) was that we are wasting resources by keeping him alive, and they should be taking care of patients worth saving.

I’m willing to admit, at least some of my frustration comes from exhaustion.  From early morning to late at night, I’m “on duty”.  Well, technically all night too.  I don’t sleep soundly because there’s still a part of my brain listening for the alarm to go off or for him to call me for some reason in the middle of the night.  And I wake up way too early.  Yes, there are “breaks” in between.  But it’s hard to do a lot of things … frustrating always having to stop.  Plus, since he’s nearly always either in bed (maybe sleeping, maybe not) or watching TV, it’s really hard to get the “main” (public) rooms cleaned!    Anyway, my point is, I do it all.  My house probably isn’t as clean as it should be (dust is probably several inches thick – I’m allergic, plus can’t see it anyway).; but at least it’s not disgusting.  And I do keep it mostly decluttered and “decorated”.  I don’t vacuum or sweep the kitchen as often as I should, but it does get done.

I keep dishes done – even put away, not just in the drainer; I occasionally make the bed (hard to do with him IN it!), and change the sheets weekly.  I keep up with laundry, and do the best I can to keep trash under control (even though that frequently means “storing” it in the car … PPPPP UUUUU – until I can get to the dump).

I try to do all that stuff as best I can during my “breaks”, especially afternoon when he usually naps.  I also have to count out his pills weekly (including one pill that has to be cut in half, which is extremely hard for me; but it’s just always too inconvenient for anyone else to do it), and then sort them daily.  I have to try to make sure he gets the right pills at the right times (again, very hard to do, because he tends to drop them!).  There’s one pill he gets “early” (at least an hour before the others), which I take to him any time before 9:00.  Wen I take the rest of the morning pills, around 10:00, I take his B/P, disconnect the dialysis, and change the dressing on his catheter site.  Often I have to empty the commode chair and/or the urinal.  Eventually, when he gets up, I have to wrap up the dialysis trash, empty the unused solution.  During the day I try to get him lunch and dinner … occasionally problematic because he may or may not eat (for that matter, he may or may not be out of bed).  Any time he’s up (in the living room in his chair), if he decides he Must go back and lay down (usually meaning he thinks he’s short-winded and wants to get back on the BIPAP), he needs help getting up from the chair.  So far he’s not needed help getting up from anywhere else, although I suspect that time isn’t far off).  In the evening, practically as soon as dinner is done, I start setting up the night’s dialysis.  With no problems, and if I remember to shut the door early enough to keep the cats out, it usually only takes about half an hour.  Once that’s done, he’s ready to go back to his room anywhere between 8:00 and 10:00.  He resists a “schedule”, so it’s whenever he decides he feels like it.  Once he gets back there, and gets settled, and undressed, I give him a cup with some cleaning solution to soak the end of his catheter prior to connecting to the dialysis tubing.  After several minutes, then I get him connected.  On average, that ends up being around 9:30.  At 10:00 I take him the last of the day’s pills.

When I started writing, I didn't know where this was going.  But, this is how most days go.  I do see changes, gradually.  He gets weaker (takes longer and longer to take clothes off or on); he gets more confused more often.  He's had memory trouble for yers, but it's much worse - now he "loses" entire days.

It's not going to get better.  He's not going to get better. And yet ... as long as we're keeping him on dialysis ... we're "just keeping him alive".  

The "system" stinks. :(