I cannot stop crying

Midnight.  I can't stop crying.  For so many reasons.

I was just holding Ed's hand and rubbing my face along his palm.  It's been so long since I've felt my husband touch me or hug me or hold my hand.

He's on day two of another "is this it or not" episode.  Right now, he's in and out of reality; the nurse thinks it's because he's on so much medication because yesterday, he couldn't breathe.  We just kept pumping morphine in to him in order to get him to relax and breathe.

It stabs at my heart to see him this way.  I cry because I can't understand him.  Either he's mumbling or slurring so much he's incoherent.  Or he'll say something like "I love you baby.  Where's Mrs. Murphy?"   At one point, he woke up begging me not to hurt him.  My heart got stabbed big time.

My dad was downstairs a couple hours ago and said I should think of it as him getting a LOT of sleep.  Ed's relaxed, he's breathing good now, he's not choking.  So there's that.  And that's the overriding thing -- he's not in pain, he's not gasping for air.

I'm crying because I don't know if my days with him are just that:  days?  Months?  I don't know.  I'm so sad because I just found Ed.  I waited so long to be with someone.  I'm crying because how fucking selfish is that?

I'm crying because I'm scared of of my mind that I won't be able to help him in the next 10 hours before a nurse gets here again.  That he'll choke or be in pain or vomit and I won't know what to do.

The other night I had to give him a syringe full of this last resort medication for when he was choking.  The needle seems like a foot long.  It didn't work.  I was going out of my mind with fear -- it turned out the liquid med was too thick to go in to the skinny needle.  It wasn't me at all but holy cats, in the moment, I was insane with listening to him choke, hearing him plead with me to fix it, not being able to get the syringe loaded.... will that happen again tonight???

I'm crying because my life without Ed feels scary.  I know I don't hold the prize for having a loved one die.  People pick themselves up and go on all the time.  I try to shine up my shield of armor.  Life will move on.  But tonight, at midnight, I feel empty and scared and anxious.

That's just a little part of my tears.  Mostly I'm just so sad.  So sad for Ed, all skinny and sick.  I crawled in to his hospital bed the other day and we both felt so good lying next to each other.  It's a pretty small bed so I had to scooch up real tight next to him but it felt so nice.

12:18 - he just woke up and saw me crying.  He said "I just thought of something" so I got up to sit next to his bed.  I asked him what he just thought of.  He told me it's going to be ok.  Don't cry baby, he said.  I kissed him and said, yes, it's going to be ok.  He fell back asleep.

I'm back in the chair across from his bed.  And I cannot stop crying.

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.