Day 297
Friday, March 14, 2014
Physical
I am beginning to suspect there’s a bit of a pattern to DH’s “schedule”;
but it’s hard to recognize or pinpoint because it’s so irregular. But apparently he sleeps very soundly for a
time, then gradually eases out of that phase to one where he’s a lot more
wakeful for a time. I have no way of
knowing how long any of these phases are going to last, so I can’t predict
them. But at least I am beginning to
recognize them.
Yesterday (Friday) he was awake most of the afternoon. He didn’t demand to get up, though I got the
vague feeling he was annoyed with me for not getting him up. He at least gave the impression of accepting
the reasons … to heal up the rash, as
well as the fact that he’s just too heavy for me to be able to move him
much. I don’t think the “he’s too heavy”
reasoning is going to hold out long, but until the rash is better he will
accept things as they are. Maybe.
He woke up around 11:30ish.
He took his pills (took a bit longer, but he didn’t seem to have any
trouble). He finished his drink but
refused anything else He stayed awake
the rest of the afternoon, but he didn’t want to “sit up” (raise the head of
the bed). In fact, he laid on his side
which is probably the best way to help reduce the pressure on the rash. He didn’t want to look at his magazine. The TV was on, but I’m pretty sure he wasn’t
really paying much attention. At one
time he did tell me he didn’t really feel very well; but he couldn’t name
anything specificly wrong.
I fixed supper early.
But, I fixed hamburger helper, which he normally likes. It wasn’t very good because it was nearly
burnt. I can’t see well enough to adjust
the flame low enough to simmer.
He seemed a bit fretful for me to change the TV channel, but
he can never remember what channel or what time his favorite show comes
on. When it did, he fell asleep before
the end of the 2nd episode. I
did have to wake him up a bit to get him cleaned up and ready for bed, and also
get a pad tucked under him so I could push his feet up off the footboard. Once I got him settled, he went right on back
to sleep, and did not wake up. He
coughted off and on and seemed to get a little restless but either stayed
asleep or went right back to sleep.
Since no CAN this morning I didn’t wake him early, and he’s still
sleeping soundly.
I did accidently discover a new “trick”. I’ve been trying to get him to drink 2
glasses of his protein drink. But I
bring him the last one with a evening pill, on the principal that it will help
him sleep to not have an empty stomach.
Often, though, he’s too sleepy by then to manage sitting up and drinking
it. Last night I put the drink in one of
the sippy cups, and it worked great. He
had no problem with that and drank most of it.
I will make next week’s batch even “thinner” (more milk) to make sure it
flows well, but that makes it easier to get the extra protein into him.
People:
The CAN was on vacation, so no one here early. The dialysis nurse came about 10:00, with a “trainee”
nurse with him. As usual, I did not see
or talk to anyone else the rest of the day.
Emotions:
I have been asked in the past (not in the past year though)
why I complain about not hearing from people if I don’t call them. So OK, here’s my reasoning: I’m the one sitting around with nothing to do
a lot of the time. Not *all* the time,
obviously. But as much as I have to do
things for DH, there are still enormous chunks of time where I do nothing more
than keep quiet and listen to make sure he doesn’t need anything. On the other hand, nearly everyone I know is
busy busy, busy. Most of them have jobs
in addition to families and home to take care of. My reasoning is that it’s easier for them to
find a time that they can chat than it is for me to try to figure out when I
wouldn’t be interrupting anything.
Another thing is that I send out a weekly “newsletter”. I used to send it daily, but since I can no
longer see well enough to dig out the tidbits (daily celebrations, famous
birthdays, etc) I used to include, I can’t really make it very interesting
daily. But weekly I can sum up what’s
been going on, and keep people (especially family and close friends) up to date
on how DH is doing. I still try to stick
to “good news”, so if I have “bad” news
I try to sugar coat it or find some humor.
Anyway, the poin is, everyone hears from me at least once a week. But I do not hear from anyone regularly at
all. I understand people are too busy to
pick up the phone (and I also understand that our phone is highly unreliable,
but if one knows that one keeps trying).
It doesn’t take that long to send an email once in awhile. And I also understand that no one wants to
call and listen to me whine and complain.
And until one has been in my shoes, no one can really understand the
total frustration and loneliness in my life right now. It’s a bit unnerving how often I find myself
walking around the house talking to myself.
I talk to DH, but he doesn’t understand about 90% of what I’m saying,
and for the most part he’s really not capable of carrying on a “normal” conversation. I talk to the cats, but they ignore me. I even talk to the TV. O
I’ve written out some of my frustration, in particular with
DSS and TGF, here .. but there’s really no point in saying the same thing over
and over. I’ve stated how I feel, but
they don’t care and no one else can do anything about it, so no point.
It’s time to get the day started whether I want to or not!
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