Friday, January 10, 2014

Day 230

Day 230
Thursday January 9 2014 
Physical:
This seems like it was a sort of odd day. DH did stay in bed late .. I think he would have been willing to get up; but he didn’t make an issue of it either. I told him he needed to wait for the nurse to come (true).  He then stayed in bed (slept off and on) until the CAN to get him bathed.  We got him up then; he did tell the CAN his stomach hurt.
He promptly went to sleep in his chair .. even without the foot rest up.  Promptly at 5:00, he asked me to “walk him to the bathroom”.  His mind is apparently unable to process the fact that his legs just won’t “work”.  And he still (and probably always will) rejects the notion that he can’t use the regular facilities.
OK, I’ve tried to avoid more than a peripheral mention of his personal habits.  If this bothers anyone reading,  then stop reading.  This is a significant part of what goes on around here.
A bedside commode was ordered when he left the hospital last March (2013).  He balked at first, but accepted the reasoning (the way our house is configured, there is no way to put a safety rail around the toilet; and it’s simply impossible to assit him up and down). The weaker he gets, the more difficult it is to get him on and off the commode.  He is partially incontinent (sometimes he is aware when he needs to “go”; but other times he is unaware).  He’s been told it’s “OK” to just “let go” when he needs to, but if he’s aware, he just won’t do that.  I can’t say that I blame him; it’s one shred of dignity he’s trying to hold on to.  He has no idea at all how difficult he makes everything.  Also, he will try to “hold it” at times.  Like if he wakes up at 3:00 in the morning and calls me saying he needs to use the pot .. I tell him to just relax, let go, I’ll come back soon to check on him (change his clothes if needed).  The vast majority of the time he only has gas (and there have been a lot of times he *thought* he had done something, and he hadn’t).
Anyway, the point of all that is that he insisted on using the commode (after my refusal to “walk” him to the bathroom!).  Because, due to weakness, he tends to sit doubled over and lists to one side, he can’t be left alone.  He fallen twice already in the past.  So I have to just sit in the room with him, close enough to guard against toppling forward.  (even with me right there he continues to try to get up by himself).  Thursday night .. we sat there for TWO HOURS. L  Then I had to rush to get dialysis set up, get him some supper, and in general get the evening done.  But I’m pretty sure he no longer had any “stomach” pain!
While I would not advocate a repeat performance of a very frustrating and exhausting evening, I will say it had it’s up side.  We both slept all night!!
People:
The substitute CAN came a bit after noon.  Just after she left the volunteer lady came.  She stayed a couple of hours, and I just simply enjoyed her visit.  We discussed a lot of the things I’d like to get done, and came up with a sort of “game plan”. 
DH’s sister called, let me know that she was temporarily without transportation and will come back when she can.
Emotions:
One decent night’s sleep helps a lot .. several would be better but I won’t get my hopes up that will happen.
I’m still over stressed about things that need to get done.  The people who live closest that I need to depend on are too busy to be bothered any more than they can help (unless there’s something in it for them).  The people who most seem to care and are willing to help are the one who live farthest away.  I think the volunteer lady will turn out to be a blessing, both for being a friend and for being here to help with some difficult tasks – without expecting to be paid one way or another!
I know there’s someone (probably more than one) out there who doesn’t fit into this “generalization”.  Please don’t bother to get offended or defensive.  I know perfectly well there are family and friends who do not live close by, and have busy lives – very valid reasons for not having time to come out here much.  I do not expect anyone to just drop everything and come out here to entertain me.  What I do expect is DH’s immediate family (in particular his sons) to get their collective heads out of the sand. They need to accept and try to understand what’s going on, and make more of an effort to help out (and that does NOT include criticizing how I handle things that they are not bothering to handle!).

I could just sit here and work myself into a snit; but since I feel a bit more rested than usual, and have actually had time to eat breakfast; and since DH went back to sleep after stirring a bit .. I believe I’ll go take a shower and find something constructive to do before my energy level fades!

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