I miss Ed

I haven't written here in a long time.  Not sure why.  In the past, it's been cathartic.  A release of all the sadness, chaos, anger held in my head. My heart.

Lately, though, writing feels too heavy.  A rehash of the shit.  Or maybe... I don't know.... I'm not superstitious but Ed's ok now.  If I write stuff, will I upset the balance??

Nah.  I'm just too tired to write these days.  Tonight, though, I'm restless.  Sad.

For the past month, I've been in this weird limbo stage.  Ha!  As I wrote that, it occurs to me - what am I saying?  This past three years has been life in limbo.  I guess what I mean is Ed's relatively ok after an awful three months.  You've been on this roller coaster ride with me.  How many times did I think he was near death?  And now, he's stable.  He's lucid.  We laugh, kiss, have good conversations, do crossword puzzles.  I decorated his room for Christmas.

Yep.  He's at a nursing home.  "Living facility."  A rehab / hospice center.  Really, it's a warehouse for old people.  It smells gross.  There are lots of odd noises.  Lonely people.  We really need a new system for elder care.  You just don't think about it until you get old, I guess.  Or have a loved one hanging out there.

Ed was checked in to the VA hospital in early November after an insane September and October.  He was in the VA hospital for a month wheb we realized it was going to be too hard to bring him home. The guilt I carry over this weighs heavy.   Who puts their spouse in a nursing home, for God's sake?  I did.

My parents were amazing during this couple of months leading up to Ed being checked in to the VA. Although we had home health care and hospice, 25 hours a week just wasn't enough.  I couldn't turn Ed by myself.  He's in diapers - we call them briefs but they're adult diapers.  Dad would turn him, I'd clean him.  Ed was out of it.  We were tired.  It'd try to get Ed out of bed by myself using the lift. This is a job that both the VA and the nursing home won't allow one person to do.  I just laugh about that now.

In September and October, I was shoving drugs in to him at a crazy rate.  Morphine, hydromorphone, ativan.  Crushing up pills because he couldn't swallow anymore.  Using liquid versions.  Even injecting him with these huge needles.  It was insane. I'd be up at 3 a.m. with no sleep, trying to remember what to give him.

A new nurse showed up every other day, changing his plan of care.  One day, another new one showed up and shoved a catheter in to him.  Uhhh - what?  Now what?  Three days later, his penis is infected and full of green goo and the hallucinations he had randomly in the past become ramped up to 24/7 within the week.

Clearly, being at home with me as his nurse wasn't working.

Ed was in the VA for the entire month of November.  The first two weeks, he was still hallucinating. The last two, he was back to the "old" Ed.  Funny, smart, totally in the present, making plans for the future.  It was then we realized I was back to the "old" Lynn.  I was his wife.  I remembered why I fell in love with Ed.  We both felt lucky we had this second chance.

Making a decision to put him in a nursing home wasn't that difficult when we looked at it objectively. The thing is, my heart isn't all that objective as I sit here tonight.

I miss my husband.  All of it.  I want him laying here next to me.  His arms wrapped around me.  I want to wake up with him, complain about how cold it is and see us both off to work. Instead, I'm alone.

Each time I leave Ed, I walk down this long hallway.  Out the door.  I get in the car and cry.  I usually spend 8 - 10 hours there.  Just sitting with him.  I've tried to spend less time there but it's hard to be away from him.  I keep thinking I should try to start finding more time for myself.  Lead a more normal life now that he's being cared for by others.  But that hurts my heart too much.  I'll have a lot of time for my "normal life" when he's dead.  Right now, I just want to be with him.

Maybe it's the holidays.  Maybe it's because, after a month of Ed being Ed, tonight he was in pain, he was more drugged up than usual.  Maybe it's because I'm lonely, sitting here in the dark, wishing I could feel my husband's presence.

Most of the time I'm grateful.  Grateful he's still here with me.  Grateful my parents support us so openly. Grateful for my friends and family who give me the space to figure this out.  Oddly grateful Ed has a disease that's given us time to say our goodbyes.  Given us time to create some really good memories.


I try to keep things in perspective. Lots of people have loss.  Are caregivers. Deal with things much worse than this.  Sometimes that perspective helps me stay focused on the good things in my life.  In our life.

Tonight though, my robot heart is weak and sad.  My skinny, sick husband is alone.  He can't move. He waits up to two hours for someone to respond to his call button.  He takes pleasure in eating jello. I wonder how I can be grateful for that?  I sit here, alone.  I can't seem to stop crying.  The depth of sadness and loneliness I have in my heart is too much.

Tomorrow's a new day.  Another day to hang out with him.  Fill my heart back up.