Saturday, January 31, 2015

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!  

Monday, January 26, 2015

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!

Tuesday, January 13, 2015

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?


Bucket lists
Money stuff
Hopes and dreams

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.


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!

Sunday, January 11, 2015

Choosing happiness


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.