Day 36

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 26^th (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.