Tuesday, October 11, 2016

Happy to be here.

The last time I wrote here was September 28, when Ed came home from that awful weekend in the hospital.

The weekend I thought he was dying.  We all thought he was.  I look back at what I wrote because I wonder what I missed.  Did I jump to conclusions?  Did I overmedicate Ed?  What could I have done different so we didn't end up in the ER?

It makes me feel so weird and anxious and sad.  I'll admit - selfishly - I feel really awkward that I put it out on Facebook.   I took everyone on this crazy ride with me.  I guess I wanted everyone to walk in to the ER with me; I wanted that virtual support.

I know this isn't about me, even though I write so much about my feeling toward this.  I know it's about Ed.  Lesson learned.

Now that we have two weekends at home, how the heck is Ed?

First off, he NEVER had pneumonia, like the ER thought.  :(    That was a fiasco.  But thank goodness for the no pneumonia.

It's so weird to look at.  How quickly things change.  Ed's in his wheelchair, sitting next to me.  Life has changed dramatically.  Even though we were together all the time before, I could leave him alone for an hour or so.

He was still independent in the sense he could move his wheelchair with his head. I wasn't worried about his breathing.  Even though he couldn't stand for any length of time, he could stand for a moment and pivot in order to use the bathroom or change clothes.  He could use his knees to tap buttons that allowed him to tilt his wheelchair.

Now, someone must be with him all the time.  If his legs fall off the wheelchair, he can't put them back up.  He cramps up a lot.  His head is tilting so his ear sometimes touches his shoulder. There is lots of massaging going on!

His breathing is good but his swallowing is bad.   Bad to the point he can't eat via mouth anymore. Everything goes through the tube, except water.   He choked on some medication to the point we both got scared.  Meds go through the tube.

Because the swallowing is bad, the coughing and choking gets bad.  It's random though.  Some days he's quiet.  Then out of the blue, he'll cough for hours trying to get up phlegm.  We've had a couple situations similar to the weekend that got him in to the ER.

One of the situations, he thought he was ready to die. He just kept telling me he was ready.  This time, though, I stayed off facebook.  I didn't wake up my parents.  I just held his hand and figured we got through the last scare, we'll get through this one, too.

After three hours of telling me he wanted me to carry him outside because he felt so light, he sort of snapped out of it and asked for a cup of coffee.   A third time, I was out running errands and an aide called me back home because of the choking.

Ed's decided not to use anything to help him breathe or to suction out the junk.  We go back and forth on this, especially when he can't breathe.  Imagine that.  This sounds good in theory.  Black and white.  When he's unable to breathe, though, we question that decision.

Every morning Ed wake's up, he smiles and says it's going to be a good day.  This is why I love Ed. He's comfortable.  He's warm.  Happy.  So this makes me really really happy, too.


  1. We are at two different ends of this thing, but you know I think of you two all the time. Big hugs to you. I am glad Ed is warm and comfortable and you are okay.

  2. All our love from this home to yours.