Monday, February 22, 2016

Learning to swim

I don't know where to start
I wrote that 2 days ago - when Luther was throwing up at 3 a.m.  Well, I wrote it when he was done throwing up.

It's such a sense of helplessness.

Our nights are tough.  Day is great. Nights, not so much.

We've discussed this at length as to why. Why the anxiety, the discomfort, the agitation?

Meds have worn off, it's the end of the day and all the sitting is finally felt on his bony butt.

It's anxiety over having to get in to bed because it feels like a coffin.

If I back up a little here, at around 9:00 we wheel in to the bedroom and wind the day down. He's in his wheelchair, I'm usually on the bed.  His wheelchair is constantly moving.  Up, down, back, legs up, legs down.  He's always wearing an electric blanket - which has to be strategically tucked in so it doesn't make him feel like he's choking. If he moves his chair back then forward, the blanket falls off his upper half.  I get up and must tuck that thing in a zillion times.

Sometimes he leans forward, way forward so his head is almost touching his knees.  He says he's just stretching out his back; 9 times out of 10, he refuses a back rub.  He'll often fall asleep in this position and I have a moral wrestling match wondering if I should wake him up.  I always do - it looks like he's going to rocket out of his chair.

The noises of the chair bug me.  Not because of the noise but because I know it's a sign he's uncomfortable and there isn't much I can do for him.  We go through this awful debate virtually every night:  what will make you feel better?  We try a million things.  Some work.  Some don't.  Some make him throw up.

Last night was the first night he slept in bed with me in about 2 weeks.  Getting him in bed is pretty interesting.  It's a delicate dance of making sure his long, skinny legs don't get tangled up as I lift them up on to the bed.  Making sure his head hits the pillow just right.  Adjusting his arms exactly right.  Pulling down his shirt so it's not all bunched up around him.

He sleeps flat on his back.  He can no longer move around. He used to be able to fling himself back and forth, using his legs as momentum.  He can't do that anymore.

Part of his anxiety comes from this place.  Imagine it. Lying flat, unable to move. The covers over you.  Your hands folded at your waist.  Close your eyes, listen to yourself breath.  Listen to the ceiling fan.  Try to turn off your brain.  Think of anything but the fact this is what it must be like to lie in a coffin.

My husband has such a strong brain.  He amazes me.  He never ever complains.  Ever.  He is rarely sad.  He's lost some of his cool cat enthusiasm for life.  In the past, if I asked him how he was, he'd say "FANTASTIC!"  Now, I never get fantastic.  He gets a pass on that one.  He'll say he's just fine.

Luther was diagnosed in November of 2013.  We think he had symptoms at least a year prior to that. The average life expectancy from diagnoses is 2 - 5 years.  We're at year 2 1/2 from diagnoses but maybe year 3 1/2?  This weighs heavy.

And yet, Luther is always calm, he accepts this illness as just something that happened to him and he has to deal with it.  He's my anchor.  Without him, I'd be drifting aimlessly.  He teaches me so much every day. I wish I could be as pragmatic as he is but I'm not quite sure that's even in my DNA.  I guess we're a good team.


  1. I don't have any great ideas to make everything better, all I can do is say we read your blog, and think about what you say. We don't know if it does any good, but some of us old people pray for you and others who have problems.

    1. Jim, prayers are most appreciated. We think of you and Paula often. I certainly don't corner the market on categiver frustration or facing challenging issues. We all face tremendous hurdles at times. It helps me to share those challenges. I really do appreciate your support. So does Ed.