Day 213

Day 213

(Monday and) Tuesday December 24, 2013

Physical:

There are good days and bad days, but from a mental standpoint, there are a lot more bad days.  Hints and guesses are all I get from the “medical people”; but from what I can figure out from what they say, he’s having a bit of a downhill swing, and sort of fighting it.  Like he knows he’s getting worse, and trying not bo do so.  Or more like, he knows he’s gradually losing control so he’s struggling as much as he can to maintain control where he can.  And that is primarily just when he’s home with me.  Even though wanting to “go home” is a constant refrain, he does realiz that I am constant and everyone else will go away.  Therefore, when it’s only me, he will use every means he can to force me to go along with what he wants.  That is mainly the getting in and out of bed, especially at inappropriate times.  Unless she just doesn’t ask he will tell the CAN he doesn’t want to get up after his bath, but once she’s gone he’ll insist I get him up.

I was asked why he can’t walk any more.  The best answer I can give is a combination of just not doing it for so long (because of balance issues plus right-side weakness) plus a general continuing weakness.  I also wonder, though, how much the dementia ha to do with it.  His mind persists in thinking he can get up and walk any time he wants to (and it constantly surprises and puzzles him to find out he can’t)  As nearly as I understand, dementia is basically a condition caused by loss of blood flow (for whatever reasons, blood vessels “close up” and cease to function;  in his case, presumably due to anti-rejection drugs and strokes).  It’s most noticeable in his thinking ability because there are so many more blood vessels in the brain.  But it actually does affect all areas of the body .. so * can only guess that it’s contributing to a weakness in his legs and knees.  There have been times, especially when he’s very tired, that he can’t manage to use his arms to hold on to me; yet his hands are still very strong.

He continues to have coughing spells; but I am still believing that sitting upright, or sleeping with his head a bit elevated, helps to relieve some of it.  He has progressively gotten to where he coughs up more phlegm, more often; but the nurse doesn’t seem to see that as a problem (she’s said several times that though his lungs are failing, the bulk of his ever present congestion is more sinus).

People:

On Monday the CAN came as usual.  In the afternoon TGF came by.  She helped me with a computer issue; but due to rain (and other issues as well I think), there was no trip (play on words! LOL) to see the lights.  Just as well, since she was (as usual) over booked and had things to go do.Just as well, as it turned out to not be a great evening here.

On Tuesday the nurse and CAN both came at the same time.  The nurse said it was time for his re-evaluation (6 months on hospice); but when she left she said we’d do it next week (the 6 months isn’t actually up until January 9^th). Unfortunately, the timing was “off”.  They got here only minutes before my family got here.  After getting him washed up, he said he didn’t feel good and wanted to just stay in bed.  So he really missed most of the visiting.  My brother, and sister-in-law, sister, and nice and her son came.  Even while feeling faintly guilty that he missed the visit, I totally enjoyed it!  I love my family dearly, and wish it was possible to see them more often.  Everyone works or lives too far away.

Emotions:

Today is Christmas Day.  I am feelings a bit forlorn, because (as in many other years), the boys all prefer Christmas at home with their family.  We celebrate on other days, according to what’s convenient for them. Since DH does get tired so easily; and since too much going on tends to get him more confused I’ve tried to set things up so that we only have “big gatherings” every other day.  So, as it falls, today is a by ourselves day.  But even though somewhat planned this way .. it’s still Christmas Day, and we will most likely not see any one at all.

I would like to try (again) to make clear my thoughts on visitors.  When family, or *close* friends come by, they are welcome no matter what.  Right this minute, for example, I’d be a bit embarrassed because I don’t consider my house to be as clean as it should .. but I wouldn’t turn anyone away.  I’m not one who only welcomes visitors when I’ve issued a specific invitation.  I do, however understand that people who live “far away” (meaning any one who lives far enough away to be annoyed if they “dropped by” and I already had other company or happened (rre) to not be home).  If someone asks if they can come on a specific date, unless I already know there’s a doctor’s appointment, I will say yes!  I will not tell anyone, ever, to not come because someone else *might* come here.

I used to have a friend who would just drop in at random times with no warning.  If I was busy she’d either help me or she’d go do something else until I got to a stopping point.  But she doesn’t come visit any more.

I do have a problem with the neighbor who had started just coming over .. with several kids including a 2 year old … and expecting me to just stop everything and sit.  While she conversed with her children in Spanish .. every once in a while a child would say “mama wants to know” something or other.  Then they’d go back to Spanish.  It’s a very awkward feeling to be expected to sit and politely listen to someone who leaves me out of the conversation .. and in my own home!  Anyway, I guess they finally figured out I wasn’t very happy with them just coming over (especially the little girls .. cute and all, but it really got on my nerves that they started just walking in without knocking, always wanting to borrow stuff). 

Family, on the other hand, is always welcome no matter what.  I will even be nice to DH’s “other son” (though I will have to grit my teeth to do so), who can’t be bothered to call his dad or even check on him more than 2 or 3 times a year. 

Today my Christmas gift was the luxury of “sleeping in”!!!  I got up at 8:00 to take DH a pill, then crawled back under my quilt for nearly another hour.  I took him more pills, and thought about my quilt again!  Instead I got coffee and came to the computer.  I’ve gotten dressed and fed the kittens.

I won’t wake up DH (I’m very grateful for the days he sleeps late!).  So I think I’ll go back to my chair and quilt and find something Christmas on TV.  Later today I know I’ll have to put things back in order for tomorrow.  Whenever DH does wake up, I’ll get him dressed and up and then we’ll open gifts.  I will try to find ways to make this day pass without getting weepy!!