Saturday, June 27, 2015

It's been a weird week.

A few posts back, I talked about waiting for the other shoe to drop.  How ALS is this odd disease where something awful happens like you realize you can't get out of a chair anymore or feed yourself.  But then you adjust to that awful thing and life skips along and we skip (he rolls) with it, trying to keep up.

Life's been pretty routine these past few months.  He lost the use of his right hand but could grip just a teeny bit.  Gripping the tv remote and pushing the wheelchair joystick were doable.  He could pull down his pants to pee.

This past week, something changed.

You know how we're all supposed to live each day like it's your last?  Dance like no one's watching?  I find myself torn between wanting to crawl under the covers to make all this go away plus the tired factor vs dancing the day away in order to entertain Luther.

Generally, the day falls someplace in between.

I bought tickets to see the Twins play baseball.  It was an afternoon game - I figured traffic would be ok.   Nice summer day, outdoor baseball, great people watching.

No go.  Luther got sick.  The picture above is from the VA.  The game was Wednesday and he woke up Wednesday morning, throwing up and coming out the other way - all darn day.  Plus he was uber tired.  He couldn't keep his eyes open.

Thursday we took him to the VA and he spent the night.  He was so dehydrated, they couldn't find a vein.

Sitting with him Thursday night, it was really truly the first time I thought about him actually being dead.  This whole dying thing is an idea.  A thought, not a reality.  Some thing that will take place in the future.  He was so weak.  So tired.  The nurse came in and said "you're DNR and DNI, right?"

Do not resuscitate.  Do not intubate.  I've heard those words before.  We've discussed them.  But those words are for way down the road.  Not right now.  I sat there, frozen.  This giant lump in my throat.  I didn't hear anything the nurse was saying.  All I could think about was what if... what if? What if some flukey thing happened and his heart stopped.  They wouldn't bring him back to me? He's fine.  He still talks, eats, gets around.

It's so weird - thinking about these huge things when all this other stuff is going on.  When is the right time?  When you sit down and think about all the death options, it's hard to wrap your head around what could happen.  Of course, I don't want him suffering.  Quality of life and all that.  But his quality of life is A-ok right now.  Shouldn't there be an equation you could apply to each situation? The value of DNR / DNI is equal to x.  X being the current state of health.

It was too much.  I had to rally and set all this stuff aside and focus on the moment.

Took him home Friday, he seemed so much better.  Ate lunch, he was alert and ready to rock.  I was relieved.  Then Friday night rolled around.

Last December, we decided to get tickets to see U2 in Chicago.  It would be me, Luther and my sister.  Ann - my sis - and I have seen the band many times and we saw them a few years back in Chicago.  We thought a road trip would be great.

Wed/Thurs the trip was touch and go.  We all sort of accepted the fact we might not go.  Then Friday rolled around and he was great.  Jazzed to go.  We all did a happy dance and didn't care who was watching!

Friday night, around 6'ish I decided to run a few errands.  Get the oil changed.  Mundane stuff. I can usually leave Luther for a few hours, once he's settled.

I got home after 8 and he was in the bathroom.  On the toilet.  With his pants on.  He'd been sitting there for almost 2 hours.  It was awful.  I'll spare the gory details.  Let's just say my life is ruled by poop.  I can't leave the house until he's pooped.  When I do leave, I have to make sure there isn't more to come, so to speak.

I understand that other people who are in wheelchairs deal with this issue. It's not like this is some special thing to ALS.  It is something new for me, for us.  Learning to set aside the embarrassment that comes with stuff like poop.  It's a private thing, right?  It's about dignity.  Not anymore.  It's just another thing.  It has nothing to do with Luther's dignity.  Or mine.  Wiping his butt is just another thing like giving him meds.

Fast forward to today.  No concert.  We had to cancel.  Luther's in bed.  His body is still doing gross stuff.  He's so tired, so weak.

The other shoe has dropped.  The little grip he had in his hand is gone.  He can't be left alone anymore.  Planning is a thing of the past.  That bucket list just got smaller.  These changes are heart breaking.  It's hard to watch him fade away.

Do not resuscitate?  I want to rethink that whole thing.  I want him here with me.

Tomorrow will be a new day.  He'll feel better.  We'll set our sites lower in terms of baseball games and road trips.  Just being together is enough.  Doesn't matter where we dance, as long as we're together.

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