Random Stuff

1.  Eulogy for Luther's hands

At 2:55 today, January 17, 2016, Luther let me know his hands and arms were completely dead.  It happened slowly, over time,  First his shoulders, his right arm, then left arm.  The last couple months, he's been able to use his fingers to hold the remote to his chair and to the tv.  And to smoke.

The remote stuff stopped about 3 weeks ago.  He still holds the remotes, like some sad life preserver. It makes him feel better, so I pretend I'm adjusting them just right and he thinks he has some control.

Imagine that.  No control over anything. Haha!  And having to depend on me to change your channel, wherein I make a comment about every show we click through.  Reminder to self:  Just quietly change the damn channel.

We were at a gas station in Newnan, GA when he told me his hands were dead.  I actually cried - it was the way he said it.  Where we were.  How hard the last couple days have been on him.  I looked at him, so small in his wheelchair, in the parking lot at this gas station.  This man I love so much.  I want to give him back his hands.

2.  Breathing/Coughing

At the last clinic, in November, Luther's breathing capacity remained at 60%.  When he was first diagnosed with ALS and they did a bunch of baseline tests, his breathing was at 87%.   I guess it's called FVC - Forced Vital Capacity - how much air your lungs hold.  60% isn't great but it's held steady at 60% for the last 6 months.

I'm curious to know what it is now.

With ALS, you lose the capacity to swallow. Right now, Luther eats what he wants.  The time it takes him to eat is much longer than even a few months ago.

He's very careful to chew slowly.  He's careful to eat things that aren't too thick (ie, an awesome piece of french bread or a thick bagel). The speech therapist showed him how to lower his chin to his neck when he swallows so he won't choke.  I'm careful to cut his food in to really small bites.

Chewing makes him tired.  At times, he breathes heavy, like he's run really fast, just because he's chewed too much.

He coughs a lot.  It's a gross, "wet" cough, full of gunky phlegm.  About six months ago, he could cough up that junk.  Now, he has this soft, really weak cough and at times, I want to pound him on the back to get that stuff out.

With ALS, it's possible your speech goes because you lose control of the muscles in your tongue. Lately, I've had to ask Luther what he's said over and over.  I can't hear him.  I don't know if his voice is quieter -- it's almost like he's losing the strength in his diaphragm.  Especially when he's tired.

Sometimes I just think it's me, looking for the next thing to happen.

3.  Rollin'  rollin'  rollin'

Luther's wheels have been outfitted with this crazy headset.  Since he's lost use of his hands, he can't use a joystick to propel his chair anymore. He tried using his feet but that just didn't work at all.

He doesn't want me pushing him around!  So the awesome OT crew at the VA rigged his chair up with the headset you see in this picture.

It's a monumental pain in the butt - or maybe his head!? - he has to focus so hard just to turn a corner.  He pushes his head back to go forward and then left to go left, etc. Think about it, though.  We don't really talk when he "drives" -- it takes too much concentration. He's worried he'll run in to a door, over someone's toes, in to the table when we go out to eat.  It's tiring to watch, but he's a champ.

4.  I love Luther

This is such a weird place to be.  Right now, I'm sitting in a motel 8, it's 2 a.m.  Luther was asleep but his electric blanket got too hot and he freaked out.  He thought he was trapped.

Ok wait.  I didn't mean it was weird to be in a motel 8 with Luther.

It's weird to think - after being single forever - I'm finally crazy in love with this gentle, patient, awesome guy.  Who's dying.  Who's deteriorated right before my eyes.  That's the weird place.

In sickness and in health.

Every day I think I cannot do this.  I can't live up to this.  I'm not a caregiver by nature.

I know people have worse things.  I know everyone has a burden to bear.  I don't corner the market on sadness or frustration.

But geeze Louise, this is the hardest thing I've ever done.  I love Luther so much and sometimes I don't know how to make him feel better.  I can't take away his pain or frustration.  Sometimes I just sit, feeling idle and helpless.  I'm his full-time caregiver and often time, I suck at it.  I hide away from him -- he naps a lot and I kind of hide away, letting him.  I'm not sure what to do.

Other times, I make this full-out effort to be Mary Poppins, Florence Nightengale and a sexy Stepford Wife all rolled in to one.  It doesn't really last long because generally I don't get out of my pj's until 3 and I'm lucky to brush my hair.

I suppose there's a middle ground in there somewhere.

All I know is that I look at Luther and I think I can't love him any more than I do.  My heart feels like it will burst.

But every day, I fall in love with him more.  Even when he pisses me off, which happens more and more lately.

This crazy sense of control he wants to hang on to.  I want to take his pain and frustration away and he wants to hang on to it, like some medal won for going the distance.  I get it.  I do.  Which is why I love him more.

How can I not live up to this awful disease?  How can I not be Luther's hero?  He is certainly mine.  I thought we'd be partners in crime as we grew old together. Now I just hope we get through the day.  And when we do, it's awesome.