Day 254

Day 254

Saturday February 1 2014

Physical:

This day was much the same as the last few have been.  By mid morning DH was awake and insisting on getting up.  It’s very hard to balance what his body can do with what his mind thinks he can do. I really do think he will never be “bed-bound” as his nurse thinks, because his mind will not go there.  I suppose he will eventually be too weak to fight me (as in trying to get out by himself); but I don’t know how I’ll deal with his mind not being able to accept that.  It’s not a matter of “denial” in his case, it’s just the dementia has stolen most of reality away from him.

He ate a sandwich for lunch, though I did have to convince him of that.  He *thought* he was going to just get up and go take a nap; but I did convince him (though he was very nearly pouting!!) to just lay back in the chair. 

I fixed him a frozen entrée pack of pork chops for supper, which he really enjoyed  But even that he couldn’t finish (and the servings really aren’t that big).

He did not sleep well, and is still not sleeping well this morning.  The coughing is a bit worse than it has been recently.  It woke him up off and on (and me of course though I didn’t have to get up).  The coughing makes the hernia hurt (which we’ve been told nothing can or will be done about)= - he would not be able to survive surgery), so he tends to try to avoid coughing.  That comes out as a peculiar whiny growl.  It’s very disconcerting. 

He’s had a “dry cough” for years.  It was noted during broncostoies, but only as a “side note”.  At his last visit to Duke, he was told that the cough was related to the chronic rejection, and it’s progression was one of the “markers” that told them it was getting worse.  And yet .. the hospice nurse has never seemed to show any particular concern.  She always says “his lungs are clear”.  On the other hand, he no longer gets any function testing .. his lungs could be “clear” but he still clearly has much less function (his sats are fairly consistently in the 96 – 98% range, but that’s with NO exertion and on 3 ltrs of O2).  I also realize there’s apparently nothing that can be done .. though I still wonder just a bit if there isn’t something that could ease it some.  In the past we got to where we would always keep hard candies around .. I think I will try that.  Well, in the day time .. not such a good idea when he’s sleeping! LOL!

It’s now 12 days until my “break”.  I’m looking forward to that; but I’m also getting a little nervous.  I’m starting to be plagued with the “what ifs”.  Even reminding myself that I had a lot less “warning” about what could happen, or training for everything I do .. I still faintly feel like I’m th throwing the kids to the wolves.  I’ve not heard from my SIL in 2 weeks now, so don’t know if she was serious about doing the dialysis training .. or if she’ll do that in the next 2 weeks.  I’d feel better if the kids had some back up.  I’ve written out instructions as completely as I can, and have taken a lot of pictures  to insert; but I have to have someone go over it with me to make sure the pictures are in the right places.  And I’ll only be a phone call away if necessary.  With the dialysis, there’s a number on the machine that can be called for help; for anything else, hospice can be called (a nurse will call back to help them with questions they might have).  I wish there was a way to go over things one on one before that weekend, but I don’t see that happening.  There’s only one more weekend, and it’s DGS12’s birthday.  Ahhhh … DS will then have 2 teens!  I know I need to just let go and trust everything will be OK.  Af  But I’ve been having to do everything 24/7 for almost a year .. my “time off” (other than getting groceries on Sundays) can be counted on one hand.  And I’ve been doing the dialysis for over 2 years.  I pretty much had to learn all of it by doing it.

I know, I worry too much.  Well, I’ve always said people should do what they’re good at.  I’m good at worrying.