I started this blog to record Jimmy’s progress (or lack
thereof); and a place for my feelings (though I need to be careful not to just
come here to whine and complain). In
order to not be just a gripe session, I’ve backed off writing much. But, it’s dawned on me … what difference does
it make? I’m not asking for or looking
for followers or readers. And, while it
says I have 2 followers (don’t know who they are), when I check Google stats –
it also says there have been NO views.
So if no one is even looking, I can say anything I want.
The weekend was pretty good.
We had Father’s Day on Saturday (the idea being that the boys would
rather be home with their own kids than with their dad on the actual day). DS and family got here early afternoon and
spent the day. DSS and crew came in the
evening (an hour late, as usual). So
there were 12 for dinner, but I had enough.
And we all played a card game – 9 of us, ranging from 10 to 66! I think Jimmy really enjoyed the day. Of course, on Sunday he tried to sleep all
day. And on Monday. L
Sunday night, getting him up from his chair in the living room
to head for the bedroom, we had a mishap.
He’s not able to remember instructions on how to do things safely; and
in his mind, he’s perfectly able to just get up and walk where he wants. So, after getting him standing, instead of
standing still for a few moments to get his balance, he starts whipping the
walker around. He goes too far around
too fast, always. This time he didn’t
have his balance – and he cannot grasp the idea of leaning forward, holding the
walker, to get his balance. Instead when
he feels wobbly, he just lets go.
Usually it means he falls (hard) back onto the chair or bed. Only this time he had already started turning
… so he missed the chair, landed on the arm of the chair – and just flipped
right over it onto the floor. I had to
call DSS to come help me get him up again.
On Monday the nurse came to do a round of antibiotic. She called at 11:00, and wanted to come right
then! I told her he wasn’t even up
yet. That seemed to bother her – well,
too bad. We’re old, we do NOT have to
get up early just because she does.
(well, he doesn’t anyway). She
ended up coming a little after noon. I
didn’t see much of her (she came to the front door; and left by it too, without
saying anything to me). She did tell me
that the tests were showing he has NO infection. She said they’ll check with the doctor (he
has to go in tomorrow) if they’re going to give him the last 2 doses or
not. I wonder what’s going on … how can
there be a “false alarm” about something like this? How can I trust them??? I’m extra glad now that I made him an
additional appointment for the 26th (since I have to go for my
appointment, and couldn’t find anyone to stay with him) It does make me feel less …. Not sure of the
word I want. Ineffectual? I had not seen any of the “usual” signs .. no
confusion, no additional lethargy, he hadn’t even said he “felt bad”.
I’m just so exhausted.
He does what he wants, when he wants.
I am “on call” 24/7. The kids all
think they’re “helping” by coming to visit.
Well, it helps in that Jimmy likes having company and is more animated,
more interested in what’s going on around him.
But it does nothing to help me (in truth, it makes more work, what with
cooking and dishes). They have
absolutely no concept of what it’s like to have to do absolutely
everything. At times I have to help him
undress even. I can’t leave him alone,
and basically none of them really have time to do anything. Carl has come a couple of times so I could go
to the grocery store (but unless I’m desperate, I hate to ask, because TGF is
always complaining about the time he spends away from his shop, which means he
isn’t making any money.
Last night the alarm went off around midnight. He had somehow gotten his catheter tubing
wrapped around the elastic belt he wears (to keep the tubing from just dangling
when he’s not on the machine). So, got
that straightened out. But then I couldn’t
get back to sleep. It was well after 4
AM before I finally got back to sleep. I
woke up around 8:00 (and I could swear I heard my GF call me, that’s what woke
me up!). So of course, there’s dishes
and pills to take care of. And the alarm
has gone off 3 or 4 times this morning – something is wrong with the last
drain, it’s taken well over 2 hours so far (normally under half an hour). I told him he HAS to sit up and take his
morning pills (he doesn’t seem to want to wake up this morning either – but he
gets the “option” of staying in bed. I
don’t). I’m hoping the change of
position will help the drain go on and finish (I just can’t get him to change
position in the bed).
So, it’s much later in the evening now. I just walked away for the day. He was a bit late, but did finally get
up. During the afternoon he asked me to
bring in the BIPAP; but at least he went several hours without it first. (later I walked by and saw him completely
dozing!).
It’s at the edge of dark.
I have to go put food away and get dishes into the sink. Dialysis set up is done. He’s probably going to be ready to head for
bed in half an hour or so (but seems like it takes 30 to 45 minutes most nights
to get him settled and hooked up). But
it’s time for me to walk away from the computer for the day anyway.
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