Friday, February 27, 2015

Its all a matter of perspective

Friday night, 10 pm.  We are all chilly, tucked under blankets.  It's 58 degrees. 

In Minnesota, we'd be in shorts.

Mom and dad got here Tuesday.  The four of us will be living together for a while now, here in Florida and then in Minnesota when we get back.

All seems well... I think it's tough for Luther since he isn't used to living with his in~ laws!   He is just quieter than usual.  I can't say it's stepping on eggshells.  Its just trying to be considerate of others. 

Before, when we got here, we didn't have tv.  Now, we have dish tv and the issue is figuring out who gets living room tv...

 We are warm, hanging out by the pool most days.

We went to a movie tonight.  Movies are hard for people in a wheelchair.  This is the first time we've gone to a movie since he's in the chair.  Only two places to sit, super close to the screen.  Then sitting for two hours without being able to shift.  Plus it was cold.  Luther is pretty much always cold which tenses his limbs up even more.  I fed him popcorn.  It wasn't super relaxing. 

Maybe the awkward feeling Luther has living with others is sort of like the movie; it exposes his frailty to others in a very up close way. 

It isn't super awkward, its not a huge deal, but there are little undercurrents, small moments I notice.  Luther being so quiet, not being able to settle into a routine. 

Again, it's that perspective thing... nothing is too big of a deal.  In the big scope, its all good.  Warm.  Sunny.

Tuesday, February 17, 2015

Frustrated in flip flops

We have been in Florida for 8 days.  We drove for 10 days to get here.

So how's it going?  Lets just say that no matter how frustrated I've been, I have to think, " but I'm in flip flops!"  and all is pretty much A·OK.

I think the hardest part was realizing how far away I was from friends and family and it was just me and Luther.  

At home, we are pretty much just us.  We are home bodies.  But I always knew my friends and family were close.  Luther likes hanging out with my dad, his friends.  I know my sister, mom, my friends were a phone call away.

We don't have WiFi and we didn't have tv. Olden days!!  As I type this, I know I am eating up our minutes or data plan or whatever, much to Luther's unhappiness.  Or our budgets unhappiness!!

The first few days were oddly quiet.  I finally found a radio.  The day time was fine, we explored, drove around, got to know the neighborhood.  

After dinner though, we would be staring at each other... should we make out!?  We played 20 questions.  We didnt have any books (he cant read, no hands to turn pages), I had already read my Oprah mag...

It took a few days to settle in, find a place for Luther to sit comfotably, find Target, find a tv antenna.  

Luther has fallen down twice.  The first was pretty scary.  Standing up, he tripped and fell straight to the ground.

It took a while to get him up off the ground. Once we did, he didnt remember falling. Off to the emergency room we went.  Now I knew where that was too.  He's fine.  Possible concussion. 

He fell at 11 pm, we left at 4 am and I told Luther it was ok because he was ok and I was in my flip.flops.

He fell again the next day.  That was mostly because he didnt want to ask for help.  It takes a while to get him up but we have a system. 

It seems on the trip, Luther lost the mobility in his right hand.  Although limited before this, he could fling his arms around to get his glasses or phone.  He had a system.  He could eat some things without help.  

Now, his right hand is swollen and actually cold to the touch.  I read it's because the nerve endings are dead, the blood pools in his hands. It doesn't flow back up his arms.  Dependent edema. 

So more things change.  He told me a few days ago he feels like he only has a year left.  

At first, I wanted to tell him NO!  You cant think like that.  But I get frustrated when people don't listen to my fears, let me get things out.  

So I listened.  We cried.  I told him I didnt want to live without him.  A year, five years.  It doesnt matter.  We cant control it.

We are in the sunshine.  We have a cruise planned.  I rub his cold swollen hand in the sunshine.  We arent in below zero weather.

Flip flops, sunshine make everything better.

NOTE:  Many thanks to my brother and his wife for letting us stay at their place.

Friday, February 6, 2015

A little R & R ~ Regroup & Rally

In Alabama, getting ready to head to Luthers sisters house. 

After a tough day Wednesday, we've had time to talk about stuff:  contingency plans when things go awry, lowering expectations, teamwork.

For every moment I feel overwhelmed by this disease, I have to counter that with how Luther must feel.  Always waiting on me for everything, from scratching an itch to eating. 

We agreed we need to be a better team.  We both have to say what it is we need.  For me, it's more about time or having a moment for myself. 

For him, its way more basic.  He is such a good guy he doesnt want to bug me if he needs something.  But thats why I quit working.  Thats specifically why I'm here. 
Neither of us are mind readers... isnt that the challenge in any relationship?!   I do that many times:  wonder why Luther cant figure out what  I'm thinking. 

So in a Thelma and Louise like way, we are holding hands, clasped high over our heads, in the wheelchair van, ready for the next leg of the trip!! 

Hmmm...I just remembered Thelma and Louise went over a cliff at the end of that movie.  I suppose we will have more "over the cliff" moments" ~~ who doesn't?   I think we will be ready for them!!

Wednesday, February 4, 2015

Turning that frown upside down or whatever

1:20 am, in a hotel room in Atlanta.  Luther is asleep.  Its eighty degrees in here, he couldn't get warm.  I am nearly naked, in a menopausal sauna like state. 

We had a couple nice days in Chattanooga with his son and grand kids.  I can't remember if I mentioned his son flew up to Minnesota and drove down to Chattanooga with us.  It was terrific to see the two of them spend time together.  It was awesome I had a side kick driving as well as another set of hands helping.

Today was a rough, rough day. 

Mostly, I accept the limitations of this illness.  I should say we accept... every inconvenience I feel, he feels a million times more.

Feeding him, bathing, dressing, getting him out of bed, packing the car, packing up the room... its all part of the deal.  We both get frustrated but overall, we are a pretty good team.

Today we took a new turn in the depth of how much ALS takes away from a person.  I won't go in to details ~ some things are too hard to talk about in specifics.  Today made me realize life is hard and ugly and unfair. 

We left Chattanooga toward Atlanta.  Traffic was bad. We are at the Omni, a really nice hotel.  Too nice?   You have to valet park, I had forgotten his meds.  We are in the north tower but parked in the south tower.   I couldn't go to the parking lot to grab stuff out of the car; it cost me five bucks in tips to get my car pulled around. 

I am restless.  Im glad he's asleep.  Im trying to find a bright side.  This isn't a vacation yet.  I don't know if it will be at all.   This is work.  This is a challenge I am not sure I am up to.  I want to get to Florida, get settled. 

Off to bed, maybe I can sleep?