My heart! Ed died - 9/20/17

Ed died.  He died peacefully, I think, on Wednesday, Sept 20, 2017 at 9:45 p.m.

I wish I could convey how amazing Ed is. I didn't have enough time to know him.  We were together five and a half years.  He was sick for almost 4 years.

Ed crashed in to my life quickly.  How lucky I am he did.  I am so grateful for his love.  My only regret is I didn't know him sooner.

My heart hurts, my body aches to hold his hand one more time.  My brain won't shut off.  

In many ways, I think we were fortunate we had this four years to say goodbye.  It was a really, really tough place to be.Stuck 

in limbo.  Watching him fade away. Walking a line between loving wife and controlling caregiver.   Mostly, though, we got to be together, we lived a few bucket list dreams.  I quit my job 3 years ago and we spent every day together since.

The thought of re-entering the world again is daunting.  Ed was my champion, my best friend, my partner in crime.  He was a loving, supportive husband.  We were a really good team.  I miss him so much.

I know people face death every day.  Ed's son, Ryan, died unexpectedly almost 5 years ago. No time to say goodbye.  No time to wrap his head around his death.

We've had that time.  We traveled, spent time with both our families, reconnected with friends, relatives.  We created really good memories.  

We spent the last year in a nursing home.  In an odd way, it was a safe haven from the world outside. Many times, we both missed having him home.  There were times Ed would wake up alone, in the dark.  Scared.  Unsure where he was.  It broke my heart I wasn't there to reach out and comfort him. We learned to leave on a very bright nightlight.  Sometimes he would call me. Toward the end, he forgot how to make a call.  

Ed is amazing.  So strong.  This last year was tough.  He was a proud man, so smart, so generous and kind.  

I can't write anymore now.  

I love Ed so much and as much as my heart hurts, my heart is filled with love.  Ed gave me that gift.

  

Ed update - 9/8/17

Ed is having a tough time.  Another whopper of a UTI, this one making him think he's Engelbert Humperdink and his feet are on backwards.  It's day three of anti-biotics.  Fingers crossed they kick in soon.  The pain of having to tell him several times a day he cannot get out of bed, put on his fish shoes and walk to Florida is just too much.

Along with this UTI, is the possibility that ALS has progressed.  ALS seems to have these moments of steep decline and then months of plateau.  I'm sure ALS is in him, chipping away at his body and his brain but it goes unnoticed until BAM!  Something happens that feels so shocking.  Two months ago it was the fact he wasn't going to get out of bed anymore because losing his core muscles put too much pain/pressure on his diaphragm.

<----- Happier days at Disney - 3 years ago

It's hard to tell if what he's feeling is ALS progression because of the UTI.  But the last 10 days have been rough.  Panic attacks, agitation, he can't get comfortable. My happy go lucky husband is, as he said "more sickly" than he's ever felt.  He says it's not a breathing issue.  My guess is he can't say the truth of what it is.  Especially to me.

If it's a breathing issue, it's too scary.  So he won't say it.  He's opted for no intervention.  Non-invasive intervention would be a bi-pap.  Invasive would be a tracheostomy/vent.  He's decided he wants neither.  I can't imagine not choosing something like the bi-pap to get air in to your lungs.  But he says no.  So it's been a week of more panic attacks, lots of distress, more drugs.  He cannot get comfortable unless he's asleep.  Even with more drugs, he is agitated.  That could be the UTI -- his perception of his body in relation to his space is way off.

It was a year ago we were here, thinking he had days to live.  We went from being at home, to VA palliative care to here, at the nursing home.  We got through that.

This feels a bit different.  A year of ALS chipping away.  The panic attacks, the distress, weak voice, jumbled words.

Last weekend, he said he can't live like this.  It's the only time he's ever, ever said it. I haven't brought it up again but the statement is out there, looming over us.  It was an awful night. Knowing I had to say it's ok to feel that way when really I just wanted to scream at him to never ever leave me.  But I just whispered it's ok, it's ok to say it, I'll be ok, you'll always be with me.

He's asleep right now.  He got morphine two hours ago because he couldn't talk and breathe at the same time.  He'd been awake for a while with doctors prodding at him, aides cleaning him up, the pastor stopped by on her regular visit.  It was too much.

It doesn't feel like this is ok.

Faith

Grow strong in your weakness.

I can't even imagine being weak in our situation -- Ed is the strongest man I know.  His will to live, his positive attitude, his character - they all add up to this disciplined, strong man I fell in love with.  In my eyes, his strength has grown so much.

I've found my own wells of strength.  A side of me I didn't know I had.  Ed's advocate, protector, finding the balance between wife and caregiver.

That being said, these proverbs really hit home.

You hear the phrase "let it go" all the time.  Just let it go.  How do you do that?  How do you let go of feelings that hit you so strong?  I feel so many insanely powerful feelings about Ed, about ALS, about my role as a caregiver.  How do I just let go of those??

The other cliche that gets to me is "God will never give you anything more than you can handle."   This is totally untrue.  UNTRUE!!!   This slow death of Ed, watching from the sidelines as he deteriorates.  It IS more than I can handle.  The thing is, because it's more than I can handle, I turn to God to help.  It's brought me peace to admit I can't handle this and ask for help.

The idea I can grow strong in weakness feels itchy!  Uncomfortable.  I am woman, hear me roar!  I can handle this!

Most of the time, I can.  In those moment I cannot, I realize it's ok to be weak.  To ask God, my family, my friends for help.  To let down the wall of "nothing can hurt me" and allow more love and support in my life - that's a really good thing.

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