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.

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!!

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? 

Happy Trails!!!

The adventure begins.  We are heading to Florida this morning.  Driving all the way.   Hitting snow storms in Illinois with cold weather following us to Tennessee.

Here we go!!!  

Pic is of family, friends getting together before we left.  The handsome guy across from my husband is his son, Luther III.  He flew up from Tennessee to help drive.  It's been awesome to have him here!  

My life is a carrot cake.

I'm not even sure what to write but I feel like I should.  Things are all jittery and wacky and anxious.

We're leaving Saturday to head to Florida for three months.  I should be doing a jitter-bug and not feeling jittery, right??

Mostly it's last minute wrap up stuff. Plus I'm watching the end of Breaking Bad and it's AWESOME. More "shoulds" - I should be packing, laundry, making lists and checking them twice.

I have - as you know if you've followed this blog - a tendency to wig out, over analyze, worry, beat myself up, yada yada over virtually everything.  So this move exacerbates that feeling.  I'm sure as I pull out of the driveway, I'll wonder if I left the oven on, will I drive ok, is Luther going to be comfortable, what did I forget?

This conundrum, this kooky way I look at things is like a carrot cake, I suppose.  On top is all yummy and good - that cream cheese frosting!!  As you eat it, the cake itself still tastes pretty good but you might have to navigate through raisins :(  or walnuts :(  
 
Florida is all frosting!!  Warm weather, we have a cruise planned.  Disney, Key West.  It's all really really good.

It's the getting there that's a minefield of nuts and raisins.  I don't want to feel sorry for me, I don't think I do.  But man!  There's a lot to do.

If I back up a little, the whole not working thing has left me a little off kilter, too.  Not in a bad way. Maybe a few raisins kind of a thing.

I don't know - even as I type this I feel like I'm complaining about things I should be twirling around, throwing my hat in the air!  Who can turn the world on with her smile!?   It should be me!!

The other nagging thing I have in the back of my head is this feeling that as we pull out of the driveway, my life as I know it changes.  Even though it's changed a ton since Luther got sick, we've been home.  I'm in my own digs.  I can hide when I want, hole up with Luther.  Be comfy on the couch I know.

Hmmm.  I don't think I can continue.  It feels ungrateful.   Flip the switch.  I'm thankful I have people in my life who step up and let us stay with them.  Whether it's in Florida or when we get home and move in with my parents.  I don't have to work, I get to hang out with my husband and be on vacation.

Lucky me.  Lucky us!

What the heck is Luther up to?

So much of this blog is about me me me.   It's a good way to get feelings out my chaotic brain and sort them out.  So what's up with Luther?

I tried to "interview" him last night... I asked him actual interview questions but he was watching the college football championship so his level of interest in answering was fairly low.

Luther is a cool cucumber.  He isn't rattled very often.  He's goofy and sweet and thoughtful and caring.

I worry that he ISN'T worried.  I want him to go to therapy but he says what is there to talk about?

He knows he's dying.  What does he need to hash out with some therapist half his age?

I'd like him to be more open with me.  He says he tells me stuff when he needs to tell me stuff. Outside of that, I shouldn't try to pry things out of him that aren't there. Sometimes I think he tries to protect me by NOT telling me stuff.  Like he says about the therapist, what is it we need to hash out?

THINGS WE NEED TO HASH OUT:

Feelings
Bucket lists
Desires
Feelings
Money stuff
Hopes and dreams
Moving
Feelings

Luther looks pretty good.  When you think of Lou Gehrig's, you think of someone who can't talk, who might be shaky or can't move at all, whose head is floppy.  Luther is none of those.  Even when he's in his wheelchair, he can cross his legs.  He's super alert and talks like Luther.  He still walks. Not much.  And he has trouble getting out of his chair but with a little help, he can get from here to there.

At times, I forget he's dying.  I asked him, in the interview last night, if he thought of dying.  He said yes, every day.

Of course he does.  How can you not?

I was going to describe his day but I'll just say it this way:  imagine not being able to use your arms or hands for anything.

He can still get himself out of bed although it takes a while to get out.  He cranks his hospital bed upright and he slides out but then he has to wait for me.  He won't wake me up... he waits for me.

So I'm his hands and arms.  We're a pretty good pair!  He has the patience of a saint though, waiting for me.

ANOTHER THING TO HASH OUT:

Speaking up when Luther needs something
Being more attentive to Luther

I'll pick up the interview soon.  I'm secretly hoping it will be a little therapy for Luther!

Choosing happiness

Disclaimer:

I am not, by nature, a glass half full girl.  I don't know why.  I wish I were.

They say (not sure who "they" are) happiness and a positive attitude is a choice.  At times, I think it is. Other times, it's not that easy.  I pretend it is, because what can you do?  Mope forever??

Don't get me wrong.  I know I'm kind, thoughtful, loyal. I'm just not always positive.  I can't say I'm always negative either.  Is there some kind of neutral middle-ground??

I have to work hard at happiness.   I've come to understand this not as a character flaw but as simply who I am.

There are different labels for this:  situational depression, ADD, ISFP, introverted.  It's gotten worse - this desire to be alone, this monochromatic perspective - as menopause creeps in.

It's a struggle, at times, to jump out of bed and say today's a great day.  Instead, I guess I pull the covers over my head and have to rally myself out of bed.

Eventually the day looks bright. It just takes some doing to get there.  It's a process.

In the end, by writing this stuff and sharing it, by working through that process of feeling nothing to feeling something to finally being grateful (does that = happy?), by just getting outside or calling a friend or hugging Luther, I know I'll get to that better place.

I write this disclaimer because so much of what I write about is seen through my cracked rose colored glasses. At times, I must sound hopeless or really just such a crab to live with.  I want you to know I'm well aware of this point of view.  This slant on how I'm living this life.

"This life" -- the life I lead now as wife/caregiver vs. before.  Before, when I didn't think much about leading life to the fullest, making every day a good day, when I felt the pressure of being happy... when the weight of someone else's happiness, comfort and frankly, just the day to day of being fed or cleaned up didn't rely so much on my shoulders.

It makes me feel cranky and selfish because... I'm not Luther.  I'm not terminally ill.  I can move my arms and legs and I can feed myself.  I don't have to worry about going to the bathroom or brushing my teeth or coughing/choking after eating.  My comfort level doesn't depend solely on others.  Right now, as I type this, he's downstairs by himself.  He can't scratch an itch, wipe his nose, get up and get a pop if he wants it.  (I'm going to go check on him now)

This life, our life, it's not easy.  It's sad sometimes. Heartbreaking, cry your eyes out sad.  It makes me tired a lot.  It sucks.

And yet, this life I lead now is a gift.  I don't think much about whether God brought me Luther, if this was meant to be, was it fate or serendipity or some higher power.  I can't imagine God intended for Luther to have ALS.  I think more in terms of the opportunities God gives us, the circumstances we face and how we choose to use faith.

This life I have with Luther is amazing and special and I'm taking this opportunity to learn how to choose happiness.