Wednesday, April 27, 2016

Here we are..

We're home.  Six days of driving.  We got home Sunday - today is Wednesday.  I'll probably be unpacked by Saturday...

It feels like Florida was a dream. Ok - ok - we missed the snow and the below zero weather.  But man oh man!  The four months we were there flew by.

First and foremost I have to thank my brother and his wife (Jeff and Noreen) for letting us stay.  It's their place and they're generous enough to let us be warm for the winter.

And, I have to thank my parents. They've gone down for a few years before us.  We showed up last year and invaded their snowbird space!  It's been such a blessing for Luther - his skinny body feels so much better in the warmth.

We wanted to stay through the end of May.  Mom and dad were leaving end of April and we'd stay a month for the extra warmth.

Luther got sick.

Not sick-sick in the hospital sick but back to not eating.  He threw up what he did eat then it came out the other way.  It was a couple nights of being up, trying to figure out how to stop the gap, so to speak. I was tired, he was weak.

I just knew I couldn't be in Florida all by myself with Luther.  I need help.  It was so hard to admit to myself, much less tell Luther I just couldn't do it.

I want to give him everything.  Keep him warm, make him comfortable.  His world is his wheelchair. He's in it now 24/7.  He amazes me - he's taught himself to sleep in it.  No pillow.  He's in the same position every moment of the day. He says he gets restless but it's mind over matter.  Or in this case, mind over body.

<----- From Disney, last year!

In Florida, he could roll outside, sit by the pool with the sunshine warming his bones.  There's a lot to see - birds, alligators, fish.  I'd spend time in the pool, he'd be parked next to the pool and we'd spend time together.  It was good.

When I told Luther we couldn't stay, it was a sad, sad moment.  It hurts my heart now to think of the look on his face.  He has no control over anything.  I try to make him feel like he does but we both know he does not.  Every day is a struggle to maintain energy, to find a way to be positive, to stay warm.

A month ago, he could stand up and walk a few steps.  Today, he'll stand but he can't walk.  I have to lift up his feet to put them back in to the wheelchair.

We decided to leave Florida with mom and dad.  That way, if we needed help along the way, they'd be around.

As much as I want to be grateful we're home in one piece, we missed the snow, we had four incredible months in Florida...  Luther is miserable and cold and tired.  Since we got home, he's been wrapped up like a burrito in his electric blanket and hasn't moved much.  He is eating - that's a good thing.

We're settling back in to Minnesota.  We're back home.  I'll keep him warm, try to keep him entertained and occupied.  We'll keep our Florida state of mind.

Tuesday, April 12, 2016

Happy days!

So here we are at the pool (Jeff and Noreen's pool!).  Luther, Mia, me.

We've had some great days.  A few lazy ones in there (like today!). Perfect weather. Nothing pressing on the list of things to do.

It was Luther's birthday last week. I made plans to take him to the Hard Rock Casino in Tampa.

We were both pretty jazzed because he'd get to take a shower.  Isn't that as good a reason as any to be excited about a mini-vacation!?  He can no longer use the shower here - he can't get in to it.  We "hose him down" - the 'ole sponge bath...  but it just doesn't feel as good as a hot shower!

<----- At the casino!

The casino itself was amazing.  The accessible room had the best bathroom ever.  Grippy, non-slip floors.  The bench in the shower was padded - an important detail for someone with such a bony butt. Lots of space for his wheelchair.

It's funny how your priorities change... in the past an awesome happy hour and a great restaurant were on the list of "must haves" in a hotel. Now, we look for tall toilets and padded shower benches.

Luther liked going to casinos until his hands didn't work anymore.  Problem solved!  I got him this stick he holds in his mouth.  It's for lots of things - pushing buttons on a remote, a calculator, a computer - and slots!  The thing I love about Luther is he doesn't really care what anyone else thinks.  He pushed buttons with this stick in his mouth and had a great time!

I got him this t-shirt blanket for his birthday.  When he moved in with me 3 years ago, he had all these worn out t-shirts.  I wanted to get rid of them but he said NOPE!  Keep in a bag, maybe some day make a blanket.

I finally did!  It's a great way to preserve memories - he was pretty surprised.

The usual stuff is still moving along. Luther doesn't want to eat.  He's pretty tired all the time.  The birthday fun, the casino - all of that tuckered him out for a few days after.  We're coming to the realization driving more than an hour hurts his body... thinking of the drive home is daunting.

But all of that just feels like the usual.  Lately, I don't feel too bogged down in it, which is a nice change of pace.

Life moves along.  Today it's moving along quietly.  Gentle.  It feels nice.

I'm going
to capture this feeling and bottle it up!

Tuck it away so the next time I get wigged out, I can remember what a lucky duck I am for having these moments.

Wednesday, April 6, 2016

Just a moment of normal

Last night, around 3 a.m., Ed was in his wheelchair, restless, itchy awake.  He sleeps in his chair now. He's in his chair all the time.  I woke up to rub his arms, scratch his ears, massage his shoulders.

He laid his head on my chest, which he never does.  I don't know why, I only know it felt odd.  I kept rubbing his skinny shoulders; he fell in to a soft sleep.  He woke up and said stop.  Just let me stay here like this for a little while.

I forgot what it's like to just stop for a minute and actually comfort my husband without it feeling like I was duty bound.  A bitter, frustrated, overworked nurse.

In the dark, his head on my chest, my hands resting on his shoulders, it was nice.