Thursday, March 31, 2016

What to write? What to write? Guilt, frustration, boredom, more guilt. Same 'old story.

We're in Florida, hanging out.  It's a perfect day.  Humidity gone, low 80's, sunny.

I'm watching Dateline in the living room.  He's in the bedroom watching American Dad.

Does something seem wrong with this picture?!

I'd love to throw him in the van, go to the beach.   Maybe we should. Everything's been a little rough lately.

We spent the weekend in the ER. He doesn't eat or drink enough water. Says he feels full, like throw up full.  I cannot get him to eat.  People tell me to make him eat.  How do I do that?  I've begged, yelled, been sweet, offered him up donuts.  The doctor in the ER told him TO EAT. DRINK MORE WATER.  I hate that I'm not someone to listen to but the doctor is.  Well.  I suppose he is a doctor.  Qualified and all...

TMI - He was constipated.  5 days later, he's still not eating.  The constipation part has been remedied but... for a guy who's supposed to be eating 3000 calories a day, he's eating about 5 - 600.  Because he's still full.  Of what?  Air?  Poop?  What???

It's not that the eating part is too hard -- he's swallowing ok.  Food just doesn't sound good.  Well you know what?  Too dang bad. If you want to stick around longer - you gotta eat.  I finally told him he's a grown ass man, he can figure this out.  Tell me what sounds good.  Help me out.  I make stuff, he doesn't like it.  I go to the ice cream store to get a shake, doesn't want it.  I go to the "sure things" - peanut butter cookies, pound cake.  That's all he eats.  Seriously.  Two pieces of pound cake a day. Two peanut butter cookies.

I've kind of - at least for today - given up.  Eat, don't eat.  I can't fight this fight alone.  I don't want to spend my time arguing, begging, getting both of us upset.  Let's relax.  Enjoy the sunshine.  Enjoy each other.

He has a feeding tube.  The last few days he's taken water through it with Miralax.  That's a step in the right direction.  Prior to ER, he wouldn't do it.  Now, he sees the serious side of this.  Taking an almost 2 hour drive to the VA ER wasn't fun.

Baby steps.  I'm tired of finding sneaky, creative ways to get him to eat and drink.  It tires me out to be constantly scheming, worried, angry.  Even today, on this nice day - I'm wiped out and I haven't done anything.

I asked if I could move his arms around.  Rub his shoulders.  No.  Everything is no.  I quit my job to be here, take care of him.  Make him feel better.  He doesn't let me.  So I shut down.  I stop asking. It's a weird cycle -- sometimes he wants help but is afraid to ask because I seem so tired.  I want to always be on, be up, be happy.  Mostly I'm quiet, always waiting for the next request.  I don't ask because most of the time the answer is no.

The breeze through the open door feels good.  It's a perfect day outside.  I'm going to go smooch Luther, see what he needs because that's what you do.  Never stop asking.

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