Monday, July 28, 2014

What do you do when your rock starts to roll...

Luther is my rock.  I've written this before but he is a cool cat.  Not much gets under his skin.  He lets me do all the running in circles and once I've tired myself out, he's there, waiting to hang out with me while I catch my breath.

When he woke up, he was sad.  He was in pain.  He doesn't like the home health care worker.  She's our third one in as many months.

He called her "uncouth" which I thought was an odd word but he said she grilled him about how much he was making on social security, retirement, etc.  It made him feel unsettled. I hadn't thought about this before, but as he becomes more vulnerable, feeling safe with a stranger is imperative.  Something to keep my eye on for sure.

I text Luther throughout the day - sometimes I can't because I'm too busy at work.  Today was just a few "hi, how are you?" texts.  When I called him to tell him I'm on the way home, it shook me up a little.  To date, I haven't heard him be sad.  Tonight, his voice was sad.

Isn't it crazy?  Since he hasn't been sad, I haven't expected this.  Which is pretty short-sighted on my part. We talk about him becoming paralyzed, about death which gives me this blanket, maybe this illusion, that things are relatively ok in his head.  But it isn't ok.  How can it be ok??  Because he hasn't experienced being completely helpless, it's been one of those far off in the future things.

Far off future is now.  It's here.  If you've read these posts, you know he's been able to fling his arms in order to do stuff.  He can't fling anymore.  Which means he can't bring his arms up to his face.  Not to smoke.  Not to itch.  Not to eat or drink.  Now, he leans down in to his hands, puts whatever it is he is doing in to his mouth and then leans all the way back.  It's super awkward and more than half the time he misses.

The fact his arms aren't working anymore is hitting him.  So it hits me.

Next week, I'm going to start working 4 days a week instead of 5.  I wonder if it's time to go even less??

I imagine having a stranger brush my teeth.  Bathe me.  Feed me.  It feels wrong.  Like we're (I'm??) not ready for that step.  I want to do that for him.  That's my time with him, not some uncouth home health care worker's.

We spent tonight watching a stupid movie.  Mindless but funny.  We talked a little.  We hugged and kissed and pretended everything was ok for a moment, and it was.

I love Luther so much, I can't imagine my world without him.  So I won't.  Not right now.  I have to work tomorrow.

I want to call in sick.  Heartsick maybe!  I'd like nothing more than to take Luther down to one of the lakes, wheel around, hang out in the sunshine and have another moment where time stands still.


Nice day today.  Sunny.  We got up, washed his face, slapped on some deoderant.  That's a start. Some days, he doesn't want to do that stuff.  I'm starting to force him - not wanting to wash your face in order to just sit in the chair all day isn't good.

His first home health care worker, who got a different job, likes Luther a lot and still comes over to visit.  Today's her day to come - she comes every Tuesday.  Isn't that great?  I appreciate her time so much.  He looks forward to her visits.  So today is a new day.  More positive vibes.  Off to work.

1 comment:

  1. Ups and downs, some days are better than others. It just seems I'm having a few more bad days lately. It seems like I'm dealing with a new limitation every few days. It's harder to eat, I can't pull up my pants, it's hard to get out of my chair but I'm still kicking.