Wednesday, December 25, 2013

Oven mitts, coughing and the art of knowing when to shut up

Oven mitts

oops - coughing.  Gotta go - see what's up...


We can't find gloves/mittens to fit.  More precisely, we can't find something to cover his hands that he can get his hands in to.  Fingered gloves are just no good - his hands are kind of claw-like so putting individual fingers is too tough.

Mittens seemed like the next solution - no fingers!  Of all the mittens we looked at, the wrist part is tight and he can't get his hands in them.

It's like fourteen below zero right now and he needs something.  Oven mitts seemed like the next best solution!  Roomy, thick - just slide your hands in and you're set.

Unfortunately, the lobster claw oven mitt - the only oven mitt I own - was not appealing.  Come on!! Hipster ALS guy wearing lobster claw oven mitts as mittens!!  He was not amused.

I gave him a towel to put around the steering wheel as Plan B.

Plan C was the kind of booties dogs wear on their feet.  A girlfriend's mom made her dog these fleecey boots you just slide on each paw and wrap the velcro around the ankle.  Modifying that to my human guy's hands, I thought no fingers, no tight wrist part, I'll just wrap the velcro around his wrist and instant warm!

I'm not quite the crafty girl so I put my mom on the job.  She's super awesome at sewing and creating stuff out of practically nothing.  MacGyver with a needle and thread.  We'll see what happens but in the meantime:

Plan D = these wool slippers my mom knits.  From oven mitts to dog booties to slippers as mittens.  She brought them over and I know the guy was reluctant to wear them.  It pisses me off to some extent because you have to do what you have to do, right?  Here are your choices:  frostbite at 14 below or wear the damn slippers on your hands.  Plus,. really, who's going to see you?  No one.  We just got the slippers tonight, so we'll see if he has a moment to think it over...


Luther has this ungodly cough.   It has annoyed me to no end, especially prior to the ALS diagnoses because it's caused by smoking.  I figured that it's worse now because of winter:  walking out in the cold seems to aggravate it.  Plus the dryness inside - it's miserable.

The last several nights, he starts coughing around midnight and it doesn't end for an hour or so. It's not consistent - it's random but it keeps him awake.

So tonight I googled "ALS and coughing."   Man.  Here's what I learned :

Especially after eating, persons with ALS may cough for a long time, due to food particles or saliva that is stuck in the throat. This is uncomfortable for persons with ALS and for those around them but the far greater and more serious problem is the depletion of available energy and strength that leaves the person fatigued and vulnerable.

As I was reading this info, he was coughing.  Usually, I let him keep coughing, figure it out, eventually fall asleep.  After I read this, I realized I need to step up my caretaker role.  It didn't occur to me that coughing was part of the energy management stuff.  That this would leave him tired and worn out.  I went upstairs to see what he needed.  Of course, he says, "nothing."  Got him water, got him some congestion medication, hugged him for a few minutes and put him back to bed.  No coughing in the last 1/2 hour.

The Art of Knowing When to Shut Up

All of the above ties in to what happened tonight.  Oven mitts, slippers as mittens, when a cough is more than a cough... I get annoyed, I get all gets wrapped up together in to this 'what I learned' moment...

It's Christmas Eve and we spent time with about 25 family members.  As soon as we got there, he was eating.  My mom was trying to chat with him and he was ignoring her.  I did the old eye roll and asked, "are you listening?"  His reply:  I'm eating and I can't do any more than that right now.  My eyes quickly unrolled...

After being there about an hour or so, my nephew - 13 - walked up to Luther and said, is anything wrong with you?  You look really sick.  Luther said he was tired and then my nephew quickly said, I'm sorry if I made you feel bad.  Talk about a moment!  My heart tugged in 100 different ways.

I put my caregiver hat back on and decided we needed to leave.  My brother-in-law asked if he could start the car for us and Luther said no.  My sister jumped up and got my coat and then Luther's and I could tell Luther was a little irritated.

On the drive home, I was giving Luther a hard time for not accepting help.  Hey!  If brother-in-law wants to start the car - yay!  Let's let him!  If my mom wants to give you slippers to put on your hands as gloves, right on!  Warm hands!   If my sister wants to help put on your jacket - what's the big deal?  I asked him why he wasn't talking and seemed to be ignoring people who wanted to talk to him.

I type this with tears in my eyes because it's so hard for me to put myself in his orthopedic shoes.  Eating takes all his energy.  All of it.  He can't have a conversation while he eats because he can't do both.  I learned tonight that noise level zaps his energy.  25 people in a room is a big 'ole zapfest.

I also realized that what I take for granted as help from friends/family is hard for him to accept  because it means accepting he can't do it anymore.  What I see as one less thing I have to worry about, he sees as acknowledgement that the disease has taken one more thing away from him.  Can't eat.  Can't zip up his jeans.  Can't lift a bowl.  He wants to hang on to everything he CAN do because he can.

I'm his energy manager.  His caretaker.  I need to keep my mouth shut, sit back and listen to him.  How do I walk that tightrope between making him feel "normal" - allowing him to do what he can, even if it is a struggle?  How do I take it out of his claw hands and say it's now in my hands without taking away his manly stuff?  He's wired to take care of me.

It's hard for him to ask me to unscrew the top off the milk.  W'eve now settled in to this routine where I just take it off in the morning before he gets up.  f I give him a granola bar in his lunch, I make sure I just cut off one end so he doesn't have to monkey around with peeling it open.  Little stuff you don't think of until he realizes he can't do it anymore.

Each day makes me more aware how important it is to take a step back and really listen to what he's telling me, really watch how he's doing and figure out a way to help him without making him feel less than.  The disease is doing a good enough job of that without me taking away even more.


  1. Lynn,

    Your writing is breathtaking and so very real. You are taking on a tough role as caregiver.... I have been there and know how challenging it can be. I applaud you for doing it with such grace- you are an inspiration :) Much love to you and Luther. Hope to see you both again soon :) <3 Shaun

    1. Thank you Shaun. That means a lot to me because you know this. I appreciate your message. We will see you soon!!