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.

Saturday, February 13, 2016

What it's like to have ALS - from someone who has ALS...

The following is from a post from Jay Smith, who started the 90 Foundation, a non-profit raising money for research toward curing ALS.  He was diagnosed with ALS in 2014.

Ask or Deal, the increasingly difficult game show that is now your life.  Living with ALS is different for each person but one thing is for sure, you will constantly be playing this game.

Sure, the first rounds are easy:  do I try and tie my shoes or ask for help?

As the game progresses so does the level of difficulty.  This constant internal battle of what do I ask help with and what do I just deal with might be the hardest part of the disease.  As much as I am trying to paint a picture for those with the disease, it's virtually impossible to understand how consuming this can be for us living with it.

It usually starts with the spouse or partner but eventually involves everyone around your. Your kids, parents, in-laws, friends and caretakers.  In the beginning, it is almost charming.  Your wife cuts your steak.  Your buddy opens your beer.  Your daughter holds your hand up the stairs..

Then the game gets real.  Your husband wipes your ass, your sister holds a tissue up to your mouth during a coughing fit and your dad has to suction snot out of your nose.  This is where the game gets harder.  Friends start to get uncomfortable.  Family doesn't come around as often.  Your spouse gets tired.  Understandably so.  It's not you, it's the disease.  So they say.

The problem is, you are the disease.

Everyone grows tired of your needs but they get to escape.  Even if that means washing the dishes, sipping a cup of coffee or sleeping.  I can see why so many people get divorced, abandoned and give up.  They had no idea that ALS is just one big game of Ask or Deal.

As the game gets harder, you must adapt.  I used to think you could escape ALS when you sleep but that's no longer true.  Ask or Deal is in full effect at bedtime.  Do I ask for the covers to be pulled down now, knowing that in five minutes I might be cold.  Or do I wait five minutes to see if I'm hot?  The latter requires one ask but still requires a possible wake up.

My wife always gets me positioned and says "happy"?  It isn't about being comfortable, it's about being able to deal.

The real question is can you deal with this amount of being uncomfortable?  If I were to get comfortable, you'd be adjusting me all night.  I always want the last thing my wife hears before she falls asleep is "I love you."  More often than not, it's "can you scratch my ear."  I wish it weren't the case, but that's my life.

It's a sad fact that ALS picks type A personalities to play in this game.  It would be like picking couch potatoes to compete in American Ninja Warrior.  In some ways, it a good life lesson, forcing me to be more patient, less neurotic and easier going, but mostly it's just annoying.

I don't spend my time complaining.  I'm happy to be alive.  I would, however, like to pick this booger that has been lingering since Wednesday.  My best piece of advice for someone newly diagnosed is to become the grand champion of Ask or Deal, it's the only way to stay alive.  And when you master it, let the rest of us know how it's done, wouldya?

click this link to get to Every 90 minutes website


Saturday, February 6, 2016

All is well

A few months ago, I was going to do a 30 days of gratitude thing.  List what I was thankful for each day.  I did it for about 3 days and quit.

The exercise is valuable, for sure. I tend to be a a glass half empty kind of a gal.  I look at the what-if's, the should haves.  I worry about things I can't control.

I wondered why this exercise only last 3 days?? Lazy?  Busy? Ungrateful?

Maybe.  I don't always think about this blog every day.  I tend to come here when I'm frustrated, sad... when I need to sort out the negative emotional stuff.  It helps to get it out of my head.

I realize this leads to a blog full 'o whining.  A blog chock full of negativity.  I want people to know life is a-ok!!  Our life is quiet, slow, we're together all the time.  We're with family, we have a good support system.  But yeah -- it's hard to wrap my head around the idea my husband is sick.  It's hard to be grateful and cheerful sometimes.

I thought the act of writing down each day would hold me accountable for feeling more thankful. Instead, it felt a little manufactured.

Not that I couldn't find a reason to be grateful. Instead,  the motive felt like I needed let the world know (or the world who stops by this blog) I have a happy bone in my body.

Being grateful can't be forced.  I can turn my frown upside down all day long but if I can't find a reason to really truly smile, I better go back under the covers and start over.

Luther's my hero.  He's my happy place.  He's why I really truly smile.  It sucks he has ALS but I am lucky he's in my life.  I'm a better person for it.  All will be well.  All is well.

Tuesday, February 2, 2016

Waiting for my real life to begin...

We're in Florida.  Been here two weeks today.  Settling in was weirdly difficult.  At home, we have our routine, our equipment - a hospital bed, the lift chair, a roll over the toilet chair...   So it's finding our groove, how to poop over a low toilet (I know, right?  Gross!!  But it's that kind of (I was going to say sh*t but... stuff we gotta deal with).

Luther's losing his legs now.  We're placing bets on when his legs will go.  We've been practicing taking his wheelchair in to the bathroom and only taking five steps to the toilet.  (More toilet talk...)

Prior to this, it was no problem.  His legs were golden!  He could - with the help of the lift chair - get out of his chair and walk to the bathroom without me.  He could get himself in bed.  He could - in awesome ninja-like fashion - kick a restaurant bathroom door in and roll himself in.

Now, I help him in to bed by lifting up his legs.  I follow him in to the bathroom and stand behind him when he pees (he is still standing).

He said he'll walk 'til the last possible moment but he knows he shouldn't be now.  He used to lift his legs so I could put on his pants.  Now, he can barely lift his feet and the struggle to get dressed is even more difficult.

Luther's anxiety is at an all time high.  Super claustrophobic, especially at night.  It takes forever to get him settled and in to bed.  The other night it was up and down and up and down until finally, at 4 a.m., he fell asleep.  If you think about it - he can't move.  He can't roll over.  Covers on him feel coffin-like.  He can't find a comfy position.

Putting him to bed is a delicate dance.  Solving a puzzle.  His head has to be just right on the pillow or he rolls right off.  I lift his legs but sometimes they get tangled - it's dead weight.  His arms have to be moved to the exact right position.  His shirt cannot ride up in the back... if it does, I have to sit him back up, smooth it back down and carefully lie him back down hoping he'll hit the pillow just right, his arms won't get stuck under his back, his legs don't get tangled up.

Things are getting tougher but we're happy to be here, where it's warm.  With family. It's quiet. Slow. Feels safe.  Behind this warm feeling though, is being constantly tired.  Scared.  Sad.  It's not on the surface, though.  It's tucked away.  It comes out in weird ways - unable to do laundry or pick up my clothes.  Not caring too much about what I look like (pj's for days!).

I heard this song today by Colin Hay:  Waiting for my real life to begin.  It brought me to tears thinking about the past, our old life together.  This weird limbo we're in between living, struggling and dying.  Thinking about the future without feeling guilty.  Thinking about how I slay that damn dragon every single day...
(click on this red link to hear the song)

Any minute now my ship is coming in.  I'll keep checking the horizon.
And I'll stand on the bow, feel the waves come crashing, come crashing down on me
And you said,"Be still, my love.  Open up your heart.  Let the light shine in"

Don't you understand?  I already have a plan.  I'm waiting for my real life to begin.

When I awoke today suddenly nothing happened. But in my dreams I slew the dragon.
And down this beaten path, up this cobbled lane, I'm walking in my old footsteps once again.

And you say,"Just be here now.  Forget about the past.  Your mask is wearing thin"

Let me throw one more dice, I know that I can win.  I'm waiting for my real life to begin.

Any minute now my ship is coming in.  I'll keep checking the horizon
And I'll check my machine, There's sure to be that call.  
It's gonna happen soon, so very soon.  It's just that times are lean.

And you say,"Be still, my love.  Open up your heart.  Let the light shine in"

Don't you understand?  I already have a plan.  I'm waiting for my real life to begin

On a clear day, I can see, see for a long way