Tuesday, August 18, 2015

This is what scares me....

A post from someone with ALS (from an ALS support group I'm in):

I've been feeling down lately, thinking a lot about the death dignity law we have here in Washington State.  My life is all but over, existing of bed, power chair, lift chair, bed.  Cramps keep me awake most of the night, and I lose strength and abilities every day.  I am tired.  

After a year and a 1/2 of 24/7 care, my wife/caregiver is tired as well and the worst is not here.  ALS is wrecking her health too, anger and stress are at an all time high.  

Would God really send me to hell for making such a choice?  He has already condemned me to death, does he really need to pick the time?  How do you get back your will to live once you have lost it??

From me:

This post came at such a weird time.  Luther fell down last night.  We had to call 911.  It was awful. He went to sit down to use the toilet and he fell to his knees instead.  His legs are very weak but he's been able to walk a short distance.

I realized, for all my angst so far, I've had it easy.  In one day, I realized this is going to be a really really tough ride.

We have a lift, it's called a hoyer lift.  I put a sling around Luther and lift him up with this machine. We haven't had to use it so it's stored away, the battery is dead.  We've been (falsely) comfortable thinking we won't need it for a while.

I could've used it last night.  I couldn't lift him up.  I ran to get the hoyer and it wouldn't work.  I felt awful.  I'm the caregiver, the keeper of Luther's health.  This was a giant failure.  He was in tears... he's never in tears.  He was in so much pain.  I tried 3 times to lift him up.  I kept thinking of those moms who lift cars off their kids.  I could not lift him up.  

I wanted to call 911.  He said no - he was defeated but his pride was stuck right up front... How could I lift him?  He wanted me to do it.  He wanted me to use the lift, to take care of him.  I started crying too.  I had to call 911.  I watched my man, my husband get picked up by two other guys and I know it chipped something away from him... his dignity?  his manhood?  Whatever.  It was sad, it was hard. 

Today, he told me he didn't really want to walk anymore.  How does someone say that?  How awful. He tried a little bit.  He couldn't do it.  So all day today I had to be with him every minute.  He couldn't sit on the toilet.  It was one of those defining moments.  Now what?  

Up until yesterday, he could do some things on his own.  Use the tv remote.  Get up from his chair. Use the bathroom.

Today that changed.  Today seems like a milestone.  The past month has been leading up to this. Once he can no longer walk, life becomes different.  24/7 care.  

I'm hoping the fall just tired him out.  That tomorrow, his legs won't hurt as much and he'll be able to walk again.  I'm not ready for this.  I'm not ready to see my husband in a sling, lifted up by a machine because he can't get out of his chair.

I"m not ready to face the questions the man asked above.  

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