Day 260

Day 260

Friday February 7 2014

Physical:

This was not at all a good day.  Well, the beginning and end of it were awful.  In th morning, just minutes after I’d checked and DH was sleeping peacefully, I heard him “rattling” around.  When I went back, he had thrown off the covers.  When asked why, he announced he was getting up.  I think this might be the one thing that is becoming worse and the most difficult for me to deal with:  his complete inability to realize that he can’t just get up and do what he thinks he can. 

I went on and got him up, and within minutes he was asleep in his chair.  I tried to wake him up to eat lunch – grilled cheese sandwiches, something he usually asks for more of.  He could barely stay awake to eat what I gave him.

It was very late afternoon – close to 4:00 – before the CAN got here.  She did a “quickie” wash up, and she brought supplies.  It was a small struggle even for the 2 of us to get him to bed and back up again.  And he went right back to sleep.  I woke him up part way through the news, so hopefully it wouldn’t keep him from sleeping at night.  I made another salad for supper, as we’d both enjoyed that.  He ate it .. mostly … but it took him over 2 hours.

At 8:00, when I usually get him to bed, what he thought was a new program came on that he wanted to watch.  It turned out it was a movie and didn’t end until 10:00.  But by 9:00 he was ready to give up.  But, when I tried to get him out of his chair, I couldn’t do it.  He was completely limp – was barely even holding on with his arms around  my neck.  I don’t know if he was just too tired or what.  But try as I might, I couldn’t get him up and into the wheelchair.  At one point it was a close call, and I barely got him back to the chair.  He cannot stop putting his left arm back and grabbing the arm of the wheelchair.  I cannot convince him that (1) it’s making his torso turn in the opposite direction from what I need and (2)  he’s actually pushing the wheelchair away.  It nearly folded up this time; and he kept sagging like he was going to sit whether there was something under him or not.  He was so far down on the lift chair that it nearly tipped forward; so I had to pull him from behind to get a little higher up in the chair.  That wasn’t very successful, but got him far enough for the chair to stop tipping over.  In the end .. at 9:30 at night .. I had to give up and call DSS.  I hated to do that, but by then there just wasn’t any choice (well, except call EMT).  Even with his help, it was a struggle.  This totally scares me – it seems to be happening more frequently, and I can’t handle it.  I can’t keep having to call DSS, especially so late at night.

After all of that, he did go on to sleep; and slept through the night.  He didn’t even cough a lot .. but he didn’t sleep well.  This morning his breathing is harsher off and on.

He woke early and I went on and took him his early pill this morning (Saturday).  He told me he’d been to the aquarium store last night. Usually when he thinks he’s been somewhere he’s “tired” enough to sleeplate.  He’s still restless; but getting up early is not an option, since the dialysis got started so late.  I’m hoping he will go on back to sleep soon.  I don’t know if I’ll be able to get him up today or not.

People:

The CAN came late in the day (she’d had extra patients given to her).  TGF came later to pick up something she’d left here, and get a grocery list.  She will do my shopping for me today; and she will pick u med refills and DSS will bring them tomorrow.  I don’t get to leave the house at all this week … but she seems to think that since I get a weekend off it’s fine to not get out this week.  Whatever. 

Then of course, had to call DSS.  He and TGF came by, but only long enough to help get DH into the wheelchair, and then into bed.

Emotions:

I was extremely upset last night of course.  It was borderline panic when I could not get DH up … he just couldn’t do what he needed to do.  I didn’t want to have to call anyone that late.  And of course, when DSS got here, he was able to lift DH and get him into the wheelchair with relatively little trouble.  Which makes me look highly incompetent.  And yet, he doesn’t try to come up with any solution to this problem.  I know he is adamantly – even more so than me – against putting DH in a facility.  So he needs to figure a way for them to help me out a lot more than they are.  I know DS (to some degree – he’s been working 10 hour days) and DIL would willingly help more if they lived closer.  Moving closer to them is not an option – we couldn’t afford anything there.  And moving closer to DSS is not an option either; not only could we not afford it,  I’d have a very hard time dealing with the town politics.  (and minding your own business isn’t an option, because everyone else tries to mind it for you).  I know there are people who try to help out.  But no one really grasps what it’s like 24/7.  Just like last night .. here alone late in the evening and unable to get him to bed.   Or trying to convince him he’s in a bed and not in a car and it’s OK to go to sleep – long before daylight.

It’s 6 more days until I get a break.  I am SO looking forward to that.  I know I’ll worry about how well DIL and DS and the kids will cope with DH.  The lifting part at least, shouldn’t be an issue … DS won’t have any trouble.  He moves things like refrigerators just to show off.  Plus DGS will be able to help to a point.  I do worry how they’ll cope with things like getting him dressed (and changing diapers); and finding the right balance between going along with his fantasy and telling him what’s going on in “real time”.  I’m concerned about the dialysis but there just isn’t a chance to go over it.  I have written out instructions the best I can.  I hope DH’s sister will take instructions this week; but I’m afraid she’ll be too sick to do it, so DIL really has no “back up” at all, other than calling me or calling the 800 number for the cycler company.

DH also has a habit that can be very disconcerting.  He seems to know he does it, but not why … he tends to hold his breath.  It makes it sound like he’s struggling to do something (like get out of bed).  So I have to keep checking. 

This morning (Saturday) is gray and chilly (though not freezing).  DH is very restless and can’t seem to get back to sleep.   My knees and thumbs are hurting.  I will definitely have to find something to do to keep busy!