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.


  1. So glad he is comfortable and home and so sorry for the hot mess you went through.

    1. Thank you Lenore. I hope all is well with you and Brian.