Wednesday, September 28, 2016

Ed's home!!!

Wednesday 9/28 - 11:30 pm

This is CRAZY.   The last time I wrote here was 8 p.m. Sunday night.   We were wrapping our heads around the fact the we heard the doctor say Ed was actively dying.   Our hearts were breaking.  I guess we were thinking he'd die in his wheelchair, I had this vision he's close his eyes and just go.

Instead - even crazier - is that by midnight Sunday, I was screaming at a hospice nurse on the phone to MAKE MY HUSBAND COMFORTABLE.  He was still throwing up, he was still so miserable and hospice was not providing any answers.  None.  They were spinning us in the same direction over and over with the same results.  

They finally decided to send us to the ER.  The paramedics came at 12:30 and we were in the ER by 1 a.m.  

The goal was to get to the ER to stabilize Ed.  That was it.  Help him stop throwing up.  We started at 1 a.m. -- at 3 a.m. someone came in to our room and said "we think you have pneumonia.  So you want to be treated for it, right?"

Ummm.  Pneumonia?  How did our hospice nurse miss this?  How did we get from puking to pneumonia.  But ok.  Pneumonia.  Two hours later, Ed was rolled in to a hospital room and put on antibiotics.  Apparently we were no longer on hospice at this point because we said "yes" to getting treatment for pneumonia.

The whole hospice issue is a secondary issue that made me super crazy.  It just added to the insanity of the weekend.

I can't even remember the timing or what happened.  It's like this crazy blur.  I just have flashes of things.  The most vivid moment was Monday night, hearing Ed just say over and over and over he was ready to go.  He wanted to die.  I just held his hand, watched him breathe, scared to move because I might disrupt some electrical flow in his body.

Now I'm home.  He's in bed.  

What the heck happened???

A week ago, we knew he had a decline that forced us to face the tough decisions we might have to make soon.  But "soon" - at that time - was months away.  A year away?  A while.  

48 hours ago, we thought he was actively dying and had days to live based on what the doctor said and how Ed felt.

Yesterday, the nurse at the hospital said he's transitioning in to death.  

Today?  I don't know.  I have no idea.  I don't even really care anymore.  We can only get through today.

Our days ahead will be tough.  He is completely bedridden.  I realized this weekend I cannot take care of him by myself anymore.  

I can't type anymore.  I've been running on adrenaline, rage at hospice and the hospital, and giddyness that Ed's finally home.  The crash is coming on fast!  It's time for bed.

Sunday, September 25, 2016

How did this happen?

Ed is actively dying.

These are the words the hospice doctor used.

What?  What????   How did this happen?  He's still talking, breathing, eating.  Just two days ago we were talking about plans for the winter.  How, in a day, is he "actively dying?"

I can't even remember the last 24 hours.

We went to sleep Friday night.  Me on the couch, about three feet from his wheelchair.  We leave a light on because the dark is too scary.  Sometimes we leave the tv on all night, too.

Around 4 a.m., he woke up yelling "help, help."  In the four seconds it took me to get up and turn on the light, he was passed out and not breathing.  I shook him, slapped him, yelled at him but couldn't get him to respond.  I remember thinking I'd taken CPR classes in high school - should I get his wheelchair back and do that?  Instead I ran upstairs to get my mom and dad.  When I got back downstairs, Ed was awake.  Breathing.  He had no idea what happened but he was really non-responsive, out of it.  Loopy.  Drunk.

Parents went back to bed, at 5 he passed out again and stopped breathing.  Within seconds, he was awake again.  But this time he was begging me to get him out of bed.  I told him you're in a wheelchair.  No - no - no he said, I'm 18.  I'm in bed, get me out of bed.

I decided to wheel him outside.  He looked at me and said "I know I'm 63.  I know I'm sick."  Just like that.  Out of the blue.

I called the hospice nurse.  I ended up calling her 5 times yesterday morning.   This is how we learned he has maybe 2 days.  He is actively dying.  In the active dying phase.

My heart hurts.  I keep rationalizing things.  I know I don't corner the market on loss.  On sadness. We've had this time to say goodbye.  To be together.  We've had an amazing two years of travel, warm winters, visiting family.  Of just being together.

For as much as I'm grateful, my heart hurts.  Ed is my rock.  How do people do this?  How do they go on???  I look at him and burst in to tears.  I have friends who've lost a child.  A parent.  A spouse. They have moved forward.  Ed's son died in 2012.  Only now can I appreciate the weight of that grief.

I feel like the sheer force of my love should wake him up, heal him.  Carry him through just one more week.  I find myself bargaining with God.   Just one more week, please?  But how would that make it any easier???

Do I feel any luckier he won't suffer through the horrors of ALS?  He'll die being able to tell the people in his life he loves them.  He hasn't had troubles breathing or eating.  He'll die peacefully.

His skinny little body is just so tired.  He doesn't feel good.  How do I make him feel good?  He doesn't want drugs, he wants to be lucid, he wants to tell people he loves them.  My goodness, though, I just want to wrap him up, hold him, have him fall asleep and just feel comfortable for a moment.

How do I do this???

update 8 pm Sunday night --  I wrote this earlier, around noon.  Around 4 pm, he called for me and said he was ready to go.  We'd talked to the chaplain earlier today, prayed with her.  He talked to his son.  He was really ready to go.

He seemed peaceful.  In and out, sleepy.  Ed and I said our goodbyes yesterday, in a way.  We talked about how lucky we were to find each other.  How much we loved each other.  We never fought.  We remembered healthy days.  Traveling.  We kissed a lot.  Cried a lot.

Today, he doesn't want to be touched.  He's tired.  I kiss him and he tells me he can't breathe.  I want to eat him up, wrap him up, never let him go but he can't be touched.  So I just sit and hold his hand. Since four this morning, he's been throwing up.  Everything.  Meds, water.  It's painful to watch.  I just want him to be comfortable.  At peace.

We've had a busy night.  Family over to say goodbye.  A hospice nurse stopped by.   She got him to try more meds - he threw those up.

Everyone is gone.  My sister is here, trying to get me to eat.  I came here for a short break. Wondering if I should post this??  Let people know what's going on.

Whether Ed dies tonight or tomorrow or next week -- I'm so grateful he's in my life.  He's a part of my story.  As selfish as I am to want him to fight and stick around, I want him to go peacefully. Knowing he's loved by so many.  Knowing what an imprint he's left on my heart and on so many other people.

I wish you all knew him like I do.  Kind.  Generous.  Super smart.  Forgiving.  Funny.  He was my cool cucumber.  My anchor.  How will I keep my feet planted on the ground without him?   When I met him, I'd ask him how his day was and he'd always, always say FANTASTIC!   No matter what. His glass was always half full.

I love him so much.  I will miss him so very much.  He is truly, truly the best thing to happen in my life.  I will keep my feet planted on the ground because of his love.

Saturday, September 17, 2016

Card campaign!!

My handsome husband (on the right) being enlisted in to the Air Force.

Ed had a 20 year career that took him all over the world.

Thought it would be fun to share.

The reason for this post is to get all of you to send Ed a "we're thinking of you" card.

I got the idea from his co-workers at the State Police in Virginia.  They got together to send him a card.

Ed is always so uplifted when I read him FB posts - he loves hearing from friends.  He uses his computer as much as possible but he gets tired pretty quickly.

I thought that in this day and age when emails and texts are our usual way of keeping in touch, a good old-fashioned card would give him a smile.  And that is always, always my #1 goal.

Our address is:

Ed Cutchins
500 12th Ave NW
New Brighton, MN  55112

Thanks so much!!!

Last year in Florida, at the Hard Rock in Tampa. It was a fun trip!!

We aren't making the trip to Florida this year. That's definitely been sad.  We're grateful we have the memories from the last two winters.

Don't put off those things you want to do!!  Both Ed and I wish we would've traveled to 100 more places!

Life really is way too short.  So now, we're enjoying our time together in smaller ways.

Thursday, September 15, 2016

Hospice. Poop. Passing out. The new normal.

Things are so weird.  Not good.  I want to be glass half full girl.  I want to think things are going to be ok.  I'm sitting here waiting for Ed to poop.  This is our life.  A 3 a.m. poop.  Our life revolves around this now.

I'm supposed to be thinking about getting him on a bowel regimen program.  This is where I'd be sticking something up his butt (my finger?  A suppository?) at the same time each day so he'd just go and get it done.  No more 3 a.m. worries.

Going to the bathroom now is about a 30 - 45 minute ordeal.  We just don't have this thing down quite yet.  The last time he went was Saturday and it was a MANUAL EXTRACTION.  It was horrible and we both cried and I tried so hard to make it be like it was just another thing, no big deal.

Right now, at this very moment as he's going, it's a frustrating nightmare.  Up, down, up down --- I don't want to stand next to him as he goes so I walk in to the other room but within minutes he needs me to do something.  This is how my entire day is.  Up, down, up, down...

OMG - so now it's 3:50 - we did the manual extraction again.  Bowel regimen is looking better.  The issue with this is you have to do it while lying in bed.  I can't get him in to bed correctly.  He's like a sack of potatoes I'm slinging around in this lift.  Ugh.

Ok - let me back up.  So you know he was in the VA so I could have a weekend off 2 weekends ago. This, for some reason, seemed to be the start of the next decline.  Neither of us think it was the VA stay itself.  The decline would have happened anyways.  But it was the stress of going down there, of the lift system

I can't even write.  I just cry.  So is Ed.   I'll just sum it up:

- Hospice

We started hospice Monday.  Unclear how this helps us quite yet.  It's only Wednesday.  Well... now Thursday.  So we'll see.

- Coughing

He can't get that junk out of his throat anymore.  We use this thing nicknamed a "pickle" or an accapella.  He breathes in to it then I do this "quad cough" thing - I press between his chest and his tummy to help him get the junk up.  This can go on for the whole hour (on and off) before it comes up.

- Anxiety / panic attackes

Ed's anxiety is through the roof.   He can't breathe, he can't move, he freaks himself out even though I'm right there.  He wakes up in the middle of the night, feeling trapped as if he's in a coffin, getting no air.

- Passing out

I'm not sure where this comes from.  The panic attacks?  Lack of air?  It's happened 4 times.  It happened tonight.  He'll call out my name, I go running to him.  His eyes roll back in his head but eyes don't shut.  His head falls to the side.  His mouth goes slack.

The last time prior to this one, it lasted 30 seconds or so.  I was slapping him across the face, screaming at him.  He wouldn't wake up.

When he comes to, he doesn't remember it.  He'll be very unfocused.  The 3rd one happened on Monday afternoon and all day Tuesday he was so out of it.  The nurse comes tomorrow and we'll discuss this with her.

- Unfocused

In general, Ed seems to be less focused.  He told me yesterday, he's having a hard time listening to me with the tv on.  Or, if two people are having a conversation around us, he can't stay focused. Sometimes when he looks at me, he looks right through me.  I'm not sure if I'm making more out of this than I should.  It's just different and it feels scary.

- Breathing decisions

So these passing out incidents lead us to the talk about breathing decisions.  Ed's "DNR" or do not resuscitate.  But that's for those big moments, right?  Like end of life, no quality of life times.  Not now.  Right????

He isn't using the breathing equipment he's supposed to be using.  He doesn't have to.  I think it's silly not to but I don't tell him this.  It's his decision.  But... what happens if he passes out, stops breathing or is gasping for air.  Do I just sit and watch that happen?  What are his wishes in those smaller moments??

- Pain

When you read about ALS, everything tells you ALS isn't painful.  This is WRONG.  He is in more pain than ever.  His knees hurt.  His legs hurt.  His feet hurt.  His elbow hurts.  His butt hurts.

He's on morphine as well as another opioid.  Now the Ativan.  Lately the pain bursts through the medication.  Hospice will provide us a massage therapist.  I've been stepping up the range of motion stuff.

This is getting hard.  If I'm scared and sad, I can only imagine how he's feeling.  And that's when I cry - when I see him hurting, scared, sad.