Tuesday, April 29, 2014

The big twitch

Luther goes in for his feeding tube tomorrow.  He's nervous about the procedure.  Apparently, they stick a camera down his throat, which does sound pretty icky.  I keep telling him it's usually an outpatient procedure - as if it makes it no big deal.

I get that it's a big deal.  I think sometimes, in the face of bad things, we try to minimize the badness.  Instead of telling him, yeah it sucks, I say, it's all going to be fine.  We try to find words that might somehow soothe a soul when instead, we should allow some space to acknowledge fear or sadness.  I have told him it's ok to be afraid.  And it is.

I'm working throughout his hospital stay.  I feel awful about this but it is what it is.  I keep thinking how - in the scale of terminal illnesses - we're somewhat fortunate that he's a veteran because ALS is considered a service related illness and so much of the expense related to the disease is covered by the VA.  Fortunate because my work has been really flexible with letting me come back to a store closer to home.  But I'm feeling selfish with my time.  I want to be with Luther more.  Damn you bills and insurance and those pesky every day things that I couldn't afford if I didn't work!

Luther woke me up at 5:30 this morning with his cough.  It's a constant, now.  If I don't hear it every hour when he's awake , I worry.  I went downstairs to get him some water and decided to crawl in to the twin bed with him.

He wrapped his arms around me and I could feel that fasciculation in his arms.  The big twitch.  I remember reading a Stephen King short story where this man's hands would detach themselves at the wrist and go off and do dastardly things in the night.  That's what his arms reminded me of - these twitchy, living things that seemed separate from the rest of his body.

Oddly, it's quite the opposite.  The livelier his twitches get, the more his muslces are degenerating.

I don't write much here.  It felt good, for a time, to blurt out all these new, scary, weird thoughts about dealing with a terminal illness.  As if, somehow, by writing, I'd shove the feelings out of my head and in to the internet ether, those feelings would dissipate.

But lately, not so much.  I feel myself putting up a protective wall and hiding behind it.  Plus the fact that people reading this see just a snapshot of our day.  Of my angst.  I might post some awful, sad, melancholy thing and within an hour I might be grocery shopping.  But I don't come back and write that life turned itself right side up and things seem ok for a moment.  Sometimes it feels to hard to explain things, to actually have to sort out feelings.

Sometimes feelings suck.


Thursday, April 24, 2014

Sunday, April 20, 2014

What a beautiful day!!

Easter.  Getting ready to go to mom and dad's.  It's the first really real warm spring day.  Our windows flung open.  What a difference sunshine makes.

Yesterday, at work, I couldn't get a hold of Luther.  I knew he was sleeping late.  By 12:30, I was worried.  I called my parents and asked them to check on him.

Luther stays in the basement, which I know sounds awful.  But it's a walk-out with big french doors.  He gets some of this awesome sunshine!!  But I had this vision of my parents peeking in the door like spies, catching Luther eating lunch.

I've mentioned this before, my family is the best.  When I called, worried, no questions asked, my parents buzzed over to the house to check on him.

He was still sleeping.  They all had a little chat, my parents hauled the deck furniture from under the deck up to the deck and left.

It did make me realize Luther and I need a system.  Not sure what that is quite yet.  We're getting the "help, I've fallen and can't get up" thing.  You need a land line, though, so we're getting that re-installed.  I worry though, that he can't lift his arms or grip - so how does he lift his arms to press a button??   Once he's in a wheelchair, he'll be able to press buttons on the chair with his knees or his toes.

Anyways, I'm rambling about stuff that doesn't need to be rambled about this sunny afternoon.  My green bean hotdish is ready to come out of the oven.  Time to go!

Saturday, April 19, 2014

You can snuggle in a hospital bed!

The hospital bed moves all the time.  It sounds a little like Darth Vader - heavy mechanical breathing - air forced in and out as the mattress inflates a little then deflates a little.

I got home from a long day at work.  We went out for burgers, went to Target to get sheets for the new bed. The usual stuff, that day to day stuff you get done.  Fun Saturday night stuff!

Got the bed made up, unloaded a few groceries.  He settled in downstairs.  I was upstairs.  He got ready for bed.  I fell asleep on the couch.  More fun Saturday night stuff...

Waking up, I realized it was one of those days that slipped by.  Work, shopping, making the bed.  We hardly talked.

I hollered down stairs, was he ok?  What did he need?  Nothing.  I told him I missed him.  He said, come on downstairs.

I climbed in to that little twin bed that sounded like it had a life of it's own.  There was room for us both.  We snuggled for a while.  His back, so bony.  You touch his arms and they feel like baggies loosely filled with water.  It made me sad for a moment:  the fact we aren't together as much as I'd like, that I let a day slip by without making it special, that he was in this twin bed that sounds like he's in a hospital already.

I can't think of anything more to say here.  

Friday, April 18, 2014

More reality checks

Luther's hospital bed is being set up as I type this.

He is now officially relegated to the basement.


Tuesday, April 15, 2014

Numbers don't lie

We had "clinic" today.  5 hours of doctor visits in one day.  We'll have this every 3 months as a way to measure where he's at with ALS.

Weight Loss

50 lbs lost in a year.  15% of his body weight gone.  15 lbs in the last 3 months.
If he continues to lose weight at this rate, his life expectancy is shorter.  
Conversely, if he can maintain his current weight, he will add at least 16 months to his life.  

He's getting a feeding tube in the next two weeks.  The tube is put in to his stomach with a piece sticking out of his body.  For almost two months, about six inches of rubber tube will dangle from his stomach.  After that, they will replace that tube with a smaller piece that will be more flush against his skin.

A large syringe filled with nutrients is pushed in to this tube.

Right now, this will not replace his regular meals.  This is in addition to it.  He needs to eat as much as possible of anything and everything.  I asked about 'good' calories vs. 'bad' and the dietitian said there is no good and bad -- eat anything and everything.

Muscle Loss

Grip strength of an average healthy person: 89.
Grip strength 3 months ago: 13. 
Grip strength today:  2.  

Enough said.  Luther's arms don't work anymore and now his hands can't grip.

I get sadder as I type this.  I will say his arms work well enough to hug me.

Swallowing Loss

ALS starts in two ways:  Bulbar and Limb

People with bulbar onset ALS generally live 18 mos - 3 years from prognosis
25% of people with ALS have bulbar onset.

 Bulbar affects your speech, swallowing, eating

People with limb onset ALS live 2 - 5 years from prognosis
75% of people with ALS have limb onset.

Limb affects, well... your limbs.  Arms, legs get weaker and weaker until you can no longer walk or eventually, move.

 Luther's ALS has started in his limbs.  I was always a little relieved it started in his limbs because it felt like we had more time.  Maybe he does.  But I had this sense of comfort - or maybe consolation?  Limb onset wouldn't progress as quickly.

Today, we learned it's affecting his swallowing.  He coughs and chokes after eating, to the point he loses his breath.  Bulbar onset has started.

The good news is it has not affected his speech or his breathing.  Just swallowing.

Part of the deal with ALS is eventually, you can't eat solid food.  This is a baby step in that process.  He can still eat whatever (anything and everything, remember!?) he wants but has to include lots of gooey, slippery stuff:  butter, ketchup, gravy. Food lube, I guess.

Today was a long day.  A kick in the head day.

We didn't expect the food tube. The stark numbers regarding weight and grip loss. The admission that bulbar onset has creeped in.

Each day is another loss.  A day closer to losing Luther.

I usually never think this way.

Every single day I think how lucky I am to have in my life.  How much he's shown me how to love and feel love.

But today, I didn't think that. Today, I remembered Luther is dying and it made me sad and angry and bummed.

It's ok.  It's going to be ok.  And tomorrow will be another day to be together.

Monday, April 14, 2014


Tomorrow we go to what's called a "clinic."  It's scheduled every 3 months and it's the big one!  We see everyone from the dietitian to the speech therapist to the social worker and a few more in between.

At the first clinic, my parents attended.  4 sets of ears are better than 2, they said.  At times, I felt awkward for Luther; he was being poked and prodded in front of 3 sets of eyes.  Mostly though, it was great to have them with us for the support.

This will be our third clinic at the VA.  I have a list of questions:  can they put him on some kind of sleep medication?  his bony butt gives him no peace when he tries to sleep.  any pain meds yet?  his coughing is non-stop and to the point he gasps like a fish out of water -- what can we do for that?  when is the hospital bed coming?  Has he lost more weight?

Tomorrow will be an interesting day.

Sunday, April 13, 2014

The space between bucket lists and everyday life

Waiting to get oil changed.  Mundane weekend things.  It's a weird place, at times, to be... well, wait.  Not the oil change place!  But this space in my head.  My guy is dying and I'm hanging out in the oil change place.

How do you "live each day like it's his last" or "dream as if you'll live forever, live as if you'll die today" when you have to get the oil changed?

Life marches on, doesn't it?  At times, I get bogged down with the weight of it all:  death, coping, working, oil changes.  Mostly though, both Luther and I just go with the flow of each day.  

We don't dance as if no one is looking or sing as if no one's listening.  I still have to do laundry, he has forms to fill out, we (try) to figure out what's next and then usually end up watching tv.

I operate these days with more intent.  Remember the whole "be present" trend?  Oprah stuff. Buddha-isms:  Do not dwell in the past, do not dream of the future, concentrate the mind in the present moment.  

This means I try to be deliberate with what I say, with how I am around Luther.  So often, I find myself reacting to a situation - I'm tired and I don't want to get him undressed and pull up the covers or whatever it is I'm asked to do because he can't do it.  

We all have that five second rule when food drops on the ground... we'll eat that mcnugget that fell on the floor if we pick it up within five seconds, right?  We all should apply that to the words that come out of our mouth.  Wait five seconds before you reply.  In my case, I have to wait five seconds before I decide to roll my eyes, too.  I have a horrible poker face.  Like taking 10 minutes once a week to help him fill his pill thing-a-ma-jig is such a chore.  Sometimes it feels like it is.  But I just say sure and roll my eyes internally...

Time is a funny thing, isn't it?  

Tuesday, April 8, 2014

Things done out of love

Luther received a quilt yesterday.  It was from this organization:


Created by a mom who's son has ALS, it's a way to raise awareness about ALS.   I was contacted by Jennifer, the coordinator for Hopes and Dreams Quilting Challenge, via this blog, asking if Luther would like a quilt -- no strings attached!  How awesome is that?

I said yes, we'd love a quilt since Luther is always, always cold.  We received it on his birthday - isn't that cool!?   And it's beautiful.  Manly beautiful!!
<------- the cat on the quilt

I posted the link above hoping those of you who read my blog might take the time to read the organizer's (Kathy Thompson) story and if inclined, donate to this organization.

It makes me cry - in a good way - that people reach out to offer hugs, prayers, thoughts, time, food, quilts - just because.  It's heartwarming and comforting.  Even knowing people read this blog just to keep up with what's happening in our lives makes me feel good.

For those of you who do read all of this self-involved, angst filled, therapeutic blog, you might remember I wrote about an angel named Claire May I met at work.  She was an older woman who asked if she could pray for Luther at her church.  I received a call from her yesterday - I'm at a new store, not the store where she met me - she took the time to track me down and call me at the new store.  She wanted Luther's full name and address because she wanted to send him a note of encouragement.

So I got the call from Claire May and we received the quilt yesterday, on Luther's birthday. It was a lovely day.

Sunday, April 6, 2014


Think of ants crawling under your skin.  Or when you're really tired and your eye twitches.  That is what happens to Luther every day.

It's called F-A-S-C-I-C-U-L-A-T-I-O-N.

The nerves in your muscles lose their connection from the muscle and create a distress signal for another nerve to come rescue it.  This is the twitching.  You don't notice it at first until the muscles continue weakening.  The distress signal - the twitch - continues more and more aggressively until the muscles get so weak they stop working at all and the twitching stops.

It's like a double edged sword.   The twitching isn't painful, just annoying.  But once the twitching stops, it means the muscle is pretty much gone and you won't be able to move anymore.

At times, I can see the twitch.  Like shooting stars, you see his skin jump randomly.  Even though the twitching is rhythmic under his skin, it doesn't appear that way.  It's a twitch here, a twitch there.

If I'm touching his arm or his leg, you can feel the ants crawling.  It's an odd sensation for me, I can only imagine how odd it feels for him.

I don't want the twitching to stop, though.