Day 234

Day 234

Monday January 13 2014

Physical:

As I thought would happen, DH mostly slept all day.  He tires too much when he gets up too early; but once the thought gets in his head that he must get up, nothing will dissuade him.  And I’m truly afraid he’ll hurt himself (or break the bed) in his effort.  He will either slide down to where his feet go through the gap between rail and footboard, and keep trying to slide out there (in addition to the danger of falling if he were to actually get his feet to the floor, it puts the dialysis tubing in serious jeopardy); or he will throw his legs over the rail (and you can’t imagine how silly that ooks; I’m less afraid of him being successful at that attempt than I am of him breaking the rail, and ending up falling off). 

Once up, he went to sleep.  I knew he was up too early (for him), and just let him sleep.  In the end, he refused to eat anything until supper time; but he did manage to eat 2 pork sandwiches. He slept all afternoon; and even after eating, when he usually has a bit of alertness to watch TV, he fell asleep again.  I was worried it would mean a bad night .. but he didn’t stir until around 5:00 AM, and then was quickly settled.

He may slee a lot today; or he may be wakeful; I can’t even guess any more.

People:

The CaA came around noonish.  He woke up for her to take him back to get bathed, but then said he wanted to stay there and nap.  My bad, I should have told her just get him up anyway.  Not 10 minutes after she left he called me to get him up!

His sister came .. got here a little after the CAN.  He said (when he got up after the bath) that he felt it was rudeof him to sleep instead of visiting.  So he promptly went to sleep in his chair for the rest of the afternoon. 

She stayed about 3 hours, and we had a nice visit; plus she helped me out with several things.  We made a (very small) dent in the upstairs, and she said she’ll come back next week and we’ll work on it more.

Emotions:

I did get a bit more sleep the last 2 nights .. didn’t wake until close to 5:00 AM (which also means DH slept better, because even if I don’t actually get up, I hear him and it wakes me up if he stirs or coughs a lot).  I get up and tend to think I’m rested and can handle anything.  Well, that falls apart pretty quickly.  The truth is, I’m deep down in my bones tired and depressed, and there’s no rest in sight.  A couple of times I’ve had the possibility of hospice respite care dangled in front of me like a carrot on a stick .. but then it just vanishes like smoke, and is never mentioned as if it never happened to start with.

The funny thing is, people have asked me what I think will happen to DH if I wear myself out, or if something happens to me.  Do they seriously think I do all this for fun????  It’s not like I have any choice.  And it’s not like they’re offering to help either!  That’s the part I don’t get.  Why are people harassing me about wearing myself out if they have no intention of being there for me?

And then they tell me what a “good” person I am.  I’m not.  I’m a horrible person.  I’m selfish and grumpy and no one wants to be around me.  I don’t blame them, I don’t either. 

I don’t really see any end in sight.  That sounds horrible, but I can’t find the right words to express what I mean.  I kind of feel like we’re cheating hospice (even though the nurse tells me about every other visit that his condition is not improving and never will, and that alone will make him always be in hosice regardless of how long).   I know that “technically” the dialysis is the only thing keeping him alive.  But even with the dialysis, his body is gradually filling with toxins – it’s simply not possible for dialysis to do 100% of what normal kidneys do, and especially in someone who has so many other issues.  I don’t honestly know what is the condition of his lungs.  Without going to the doctor and getting function tests and such, we can only go on how they sound.  He is always wheezing and breathing hard, even on 3 ltrs of O2.  (and he is not always on the O2, because sometimes for completely unknown reasons he takes it off.  I have occasionally gone to check on him in the morning and found the tubing looped around his neck – like a necklace – rather than in place.  He has no idea at all when he did that, much less why).  The nurse always says his lungs sound clear.  That doesn’t indicate how well they work.   She says the wheezing is not from the lungs (not sure how that works!); but the coughing is.  We’ve been told for years that the cough was “chronic” and related to the lungs.  The worsening coughing was one of the first indicators that the lungs were going into chronic rejection, for which there is no treatment.  For now, as long as he’s non active (obviously!) and on 3 ltrs of O2, his sats stay around 97%.  Oh, and last week his B/P had gone unusually high.  That concerns me .. yet the nurse didn’t seem to be overly concerned.  Since I can no longer take B/P daily (had to give that up as I can’t read the dail any more), I don’t know if it’s a trend or just the one day for some reason.

OK, bottom line .. he’s not getting physically worse at the rate the Duke doctors implied he would (but that was based on how he was in the hospital plus the one doctor wanting to get him into the hospice program).  His mind is going at an alarming rate; and every now and then there’s a significant “jump” in his mental condition, that seems to indicate possibly another “TIA”.  He’s much too weak to stand or walk – is that from his continually weakening condition, or simply from lack of use?  His is weak for sure .. not really able to even roll over in bed.

He is wakeful now, but not at the point of demanding to get up.  I touched the dialysis screen (to make it light – will go back off in a few minues) to check that it’s done so I can roll up the tubing in the hall (it drains into the bathtub, I can’t gt a shower until it’s done.  Technically I suppose I could … but I don’t want to!!).  He said he had a screen like that at home.

I’m just depressed.  My “real” husband is long gone.  I just have this strange disabled body to take care of.  Most of the time he seems to know who I am; occasionally he thinks I’m his mother. And more and more, he seems to just think I’m someone who “works here”.