Another point of view from another caregiver

This is a post from a Facebook friend whose husband has ALS.  They started a non-profit foundation called Matt's Place.  So many families are unprepared for the expense of dealing with ALS - from ramps, remodeling bathrooms, wheelchair access.  

They started a non-profit foundation called Matt's Place.  Here is a link to their foundation for more information:  http://www.mattsplacefoundation.com/

ALS fact of the day - this is slowly becoming a fact of the week instead of a fact of the day.  Trust me, it's not for lack of things to talk about!  I just debate on how much information I should share or what anyone really wants to read on a given day.  

I cannot explain how the days are high to love to high again, in some weird bipolar plunge of emotions. (I suppose there are drugs to help.  But the idea of going through this completely numb, although appealing in so many ways, doesn't seem like an option I want at this time.)

Is it because I am with someone who is dying?

I have an image of myself in some strange cartoon character, walking along, happy as can be...hips swaying, arms swinging, whistling my little tune, a smile on my face...happy as can be...

Then, without warning, I fall into some strange pit...I logically know that all I need to do is climb out and I'll be on my way again...but I'm stubborn...I don't want to ask for help and I want to do it all by myself...

After a few days, I climb out...I feel better....proud of myself for doing it all by myself...but angry as I look around, noticing everyone just walked by me...

Why didn't I ask for help?  Why didn't they see I needed help?

But then, I go back to being my happy self again...start walking, swaying my hips,swinging my arms and happy once more...until I fall back into another pit...

That is the only way I can explain what happens.

I get sad...angry..frustrated...overwhelmed..

Sometimes when Matthew and I are talking, I can't imagine how hard this must be for him...I think sometimes he looks at me and feels the same way.

Each of us are alone in what we are going through, no one around us can relate or understand, and each of us feeling like a burden to others...

So, when I fall into my pit, I need a few days to just be angry, and sad, and lonely in my experience...

Thankfully, when I dig myself out, Matthew is waiting for me, there for me to lean on...

I promise tomorrow, I'll write about something happy...

Happy - almost - birthday to Ed!

You all know Luther is Ed - Ed is Luther, right??

Ed's real name is Luther.  As a kid, he was Eddie.  In the Air Force he was Cutch (rhymes with hutch). Our last name is Cutchins.  As a grown up, he's Ed.

When we first met, we had several other friends named Ed.  He wanted to use his given name - Luther - so for the last couple years, he was Luther.  We tend to go back and forth.

Now that's cleared up - it will be Ed's 62nd birthday on April 7.   I am going to make him a virtual birthday card from his friends, family, co-workers.

Because he can't use his hands, he stays off Facebook and email and I know this keeps him far away from his friends, family.   He misses his co-workers.  He misses friends.  I know he'd be so psyched to get a birthday greeting from you all!!

We did get his wheelchair hooked up with blue-tooth and technically, he's supposed to be able to get on his phone or computer.  But he had to use his head to scroll and he was bouncing off his head piece like crazy.   His head piece beeps whenever he presses against it so it was like beep beep beep beep over and over trying to read Facebook.

The whole point of this is to ask those of you reading to rally and send me a short video wishing Ed a happy birthday.  You need a smart phone for it!  I'm going to link all the videos together in to one virtual birthday card.  I figured out how to do it -- I'm pretty excited about that!!

Send your video to lynn.schlieff@gmail.com in the next week.

Thanks everyone!!!

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.

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

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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.

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...

https://www.youtube.com/watch?v=Cvrzqcfv9mY&list=RDCvrzqcfv9mY
(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

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.