Thursday, June 23, 2016

Up for the challenge??

I try.  I swear I try to be happy.  I know, I know, I know!  Turn my frown upside down.  Ok wait. See? Gotta run.  I've been summoned.

Ok back.

Perhaps this post comes from lack of sleep over the last two days.  Or menopause - this eternal sweating is making me nuts.  I don't know.  I can't seem to get over this feeling of boredom.  Apathy. Unhappy.

Ed's legs itch to the point he can't sleep.  Which means I don't sleep.  This has happened over the last two nights.  Nights are especially hard.  He gets a little anxious.  Restless.  He upped his night meds and has been sleeping better since March.  Getting 5-6 hours of straight sleep is gold!!

But the last couple nights have been up 'til 4, then back up at 6.  Long days of figuring out why the itch.  Tried Benadryl, cortisone, prescription lotion, some over the counter itch lotion that cost $12.99, warm wet compresses.  Everything provides relief for about 30 minutes and then the itch starts again.

We go to the doctor tomorrow to see what's up. We're wondering if it's coming from the inside - maybe the denervation occurring?  For months, those fasticulations in his legs have been crazy. That's the twitching from muscles trying to connect to nerves but the nerves are dying/dead.

Click on the video below - it's Ed's leg from last year.  You can see the fasticulations.

video

I told Ed I was tired of being his caregiver and immediately I felt terrible.  What a rotten thing to say. But it's true.  I want to be his wife.  His friend.  The woman he monkeys around with.  I grieve the loss of this relationship.  

Minutes after saying this, I apologized and he told me to put the foot rests up on his wheelchair.  He is laser focused on his little world, on himself, on his comfort.  I get it.  There isn't much else going on. 

I wrote 1000 other things but just deleted it.  

I am grateful for many things.  80% of the time, I'm content.  I do love being here with Ed.  

It's just that the feelings of grief and sadness and frustration come on so strong.  Adjusting to this new life is challenging.  

Most days, I'm up for the challenge.  Tonight, for a moment, I was not.  

Saturday, June 4, 2016

I'm not cut out to be the cool cucumber

It's been an odd, odd day.  Quiet.  It's weird.  Time stands still and yet it flies right by.

Luther seems so fragile.  Really tired.  He doesn't eat much.

I've given up trying to be anything but the person who's with him 24/7, keeping him comfy.  No more cheerleading and even more to the point, no more bitchy nurse.

I just can't spend this time fighting with him to do stuff or eat or use his bi-pap.  It makes us both crazy.

My husband is dying.  This isn't supposed to be my life.

It's too hard.  I can't stop crying tonight but I do it alone.  Early on with this disease, Luther and I used to cry together.  It felt bonding.  Now, he doesn't want it - this grief.  He can't bear the weight of it.

I was out earlier this week with a friend.  We went out to dinner, went to a play.  I had this elusive "me" time.  Hard to get.  I know it's necessary.  I had fun but there was this underlying thing - like this cloud over me.  It's hard to explain.  (PS - thanks to my sister for staying with Luther... it's hard to find a "sitter")

I go back and forth between wanting a normal life - spending time with friends, getting away for a couple hours vs. wanting to be with Luther all the time.  Our time is limited.  One year?  Three? Doesn't matter if it's ten.  He's sick.  He doesn't feel good.  He doesn't really trust the outside world anymore.  I'm his connection to it.  I want to make him feel better or at least feel like our world here at home is a good one.  I don't want to be without him.  I don't want him to leave me.  I just found him.

This disease is awful. It's this slow, awful, relentless stripping away of everything.  The life we thought we had together.  The ability to touch, hug, hold hands.  He can't move. Everything hurts.

This constant weight of grief feels unbearable tonight.  Generally, it simmers just below the surface and I can keep the lid on it pretty tight.  Tonight, it's just too much.

I think part of the hurt is a realization Luther's changed.  His personality is different.  Remember I used to tell you what a cool cucumber he was?  My anchor.  Whenever I started feeling flighty or anxious, he kept my feet planted on the ground.  We were a pretty good fit.

Now, he seems to be turning inward.  I can't say selfish because it's not exactly that.  I just don't think he can see outside himself sometimes.  When I got home from dinner and a play with my friend earlier this week, he was so consumed with going outside to smoke, getting out of his blanket, getting his back itched, he wanted a snack.  I didn't fit in to the equation as his wife.  I was the person who was going to light his cigarette, feed him, put on his slippers, help him pee.

We don't have that husband/wife stuff anymore.  We don't smooch, we can't hold hands.  When I touch him, it's always in nurse mode.  We don't talk like we used to.  There's nothing to talk about except what's on tv, where he itches, what can he eat?

I grieve the loss of my best friend.  The loss of intimacy.  I miss my super smart, super calm and collected husband.  I wasn't cut out to be the cool cucumber.

I know tomorrow, in the light of day, I'll be ok.  I think I've done a pretty good job these last two years of being a good caregiver.  A caregiver cuke.

It's 3 a.m. - I can hear his wheelchair beeping - he's awake and restless.  I hate that he can't sleep through the night.  I better go see what's up.

Added later:  He was awake.  Needed his legs scratched.  His shin bones felt like they could cut me, he's so skinny.  After lots of itching, it was time to go outside and smoke.  It's 3:30 in the morning.

This isn't how things are supposed to be.

EDITED.  THE NEXT MORNING (as in today)  Ed is feeling really perky!  Up at 6 a.m., eating, chatting.  Yay!