What do you do when your rock starts to roll...

Luther is my rock.  I've written this before but he is a cool cat.  Not much gets under his skin.  He lets me do all the running in circles and once I've tired myself out, he's there, waiting to hang out with me while I catch my breath.

When he woke up, he was sad.  He was in pain.  He doesn't like the home health care worker.  She's our third one in as many months.

He called her "uncouth" which I thought was an odd word but he said she grilled him about how much he was making on social security, retirement, etc.  It made him feel unsettled. I hadn't thought about this before, but as he becomes more vulnerable, feeling safe with a stranger is imperative.  Something to keep my eye on for sure.

I text Luther throughout the day - sometimes I can't because I'm too busy at work.  Today was just a few "hi, how are you?" texts.  When I called him to tell him I'm on the way home, it shook me up a little.  To date, I haven't heard him be sad.  Tonight, his voice was sad.

Isn't it crazy?  Since he hasn't been sad, I haven't expected this.  Which is pretty short-sighted on my part. We talk about him becoming paralyzed, about death which gives me this blanket, maybe this illusion, that things are relatively ok in his head.  But it isn't ok.  How can it be ok??  Because he hasn't experienced being completely helpless, it's been one of those far off in the future things.

Far off future is now.  It's here.  If you've read these posts, you know he's been able to fling his arms in order to do stuff.  He can't fling anymore.  Which means he can't bring his arms up to his face.  Not to smoke.  Not to itch.  Not to eat or drink.  Now, he leans down in to his hands, puts whatever it is he is doing in to his mouth and then leans all the way back.  It's super awkward and more than half the time he misses.

The fact his arms aren't working anymore is hitting him.  So it hits me.

Next week, I'm going to start working 4 days a week instead of 5.  I wonder if it's time to go even less??

I imagine having a stranger brush my teeth.  Bathe me.  Feed me.  It feels wrong.  Like we're (I'm??) not ready for that step.  I want to do that for him.  That's my time with him, not some uncouth home health care worker's.

We spent tonight watching a stupid movie.  Mindless but funny.  We talked a little.  We hugged and kissed and pretended everything was ok for a moment, and it was.

I love Luther so much, I can't imagine my world without him.  So I won't.  Not right now.  I have to work tomorrow.

I want to call in sick.  Heartsick maybe!  I'd like nothing more than to take Luther down to one of the lakes, wheel around, hang out in the sunshine and have another moment where time stands still.



NEXT MORNING UPDATE:

Nice day today.  Sunny.  We got up, washed his face, slapped on some deoderant.  That's a start. Some days, he doesn't want to do that stuff.  I'm starting to force him - not wanting to wash your face in order to just sit in the chair all day isn't good.

His first home health care worker, who got a different job, likes Luther a lot and still comes over to visit.  Today's her day to come - she comes every Tuesday.  Isn't that great?  I appreciate her time so much.  He looks forward to her visits.  So today is a new day.  More positive vibes.  Off to work.

Extroverted introvert

At times I feel like my life is not my own.  As a single girl with no kids, I had a lot of time to myself.

Sure, I have friends, was (am) a good auntie, volunteered as a Big Sister for many years and worked a whole whole bunch but I generally got to do what I wanted when I wanted.

Now, I have no time for myself.  When I do, I tend to nap.  I suppose this is what life is like for most people!!  Kids, partners, pets...  I hope I'm not whining.  It's more trying to figure it out.

ALS is a disease of trying to conserve energy.  I see this as my challenge as well - trying to figure out what the best plan is for my time.

We had the day off today.  I ended up napping for two hours; I wanted to get a few things done around the house.  Now, as I sit here typing this, I know I need to go downstairs to do a zillion things for Luther.  I feel the weight of his waiting for me.  It's not him I'm upset or mad at.  As a matter of fact, I'm not upset at all. Rather, it's a feeling of heaviness.  Not sadness.  Just tuckered out.

I've learned i'm introverted.

I always thought being an introvert meant you were shy, which I am not. Here is a good description:

...introversion and extroversion actually relate to where we get our energy from.

Or in other words, how we recharge our brains.

Introverts (or those of us with introverted tendencies) tend to recharge by spending time alone. They lose energy from being around people for long periods of time, particularly large crowds.

Extroverts, on the other hand, gain energy from other people. Extroverts actually find their energy is sapped when they spend too much time alone. They recharge by being social.

My job - which is crazy busy and full of people and questions and feels like I'm a pinball running in 50 different directions at any given moment - takes a lot of my energy.  By the time I get home, I want quiet, I want to be alone, I want to sit and just relax.  Luther gives me this space, which is great.  And yet, I feel I need to spend more time with him, I need to get more done around the house, I need to find my energy.

I know I can do this by asking for more help.  Everyone in my life has been incredibly generous and awesome!  How lucky am I??? Work is working with me!  My family is always helping without hesitation.  Friends are there when asked.  

So it's time for me to figure this out, this balance of making time for me (whatever that actually is), taking care of Luther and our home, working.   

Vacation is hard!

We are visiting Luther's family.  3 days on Chattanooga with his son.  Now we are in Mariana Florida spending time with brother and sisters.  It's been awesome to see Luther on great spirits; he's been pretty excited to see his family.

Vacation is hard.  Like right now.  Luther is staring at me waiting to go back to the room because he can't lift his arms to get the key in the door.  I'd like just a few more minutes...

Accessability has been the biggest issue.  No cut outs on curbs so we have to make dare devil moves like popping a wheelie over the curb to cross the street.  Opening doors is a tough one.  The hotel room doors with those keys is impossible.

Haha!  Add waiting on me to get anything done that he used to (and probably wants to) do on his own. 

Off we go.  8 am and he's raring to go.  Maybe a little caffeine will get my mojo raring too. 

Cry a river. Build a bridge. Get over it.

I realized I haven't written here much.  Makes me wonder why.  In past posts, I've talked about how we seem to be "fine" for a while, then something happens, we are momentarily shocked and then we re-adjust.

I feel like we've gotten better at this shock stuff meaning we don't get as wigged out when something happens. Sure, we're surprised - like a week or so ago when his right arm wouldn't lift.  The adjustment time is quicker, I guess, which is a good thing.

Instead of being so chicken little wondering when the sky will fall, I just figure out what needs to happen next.  Well.... not always 100% true because that little worried chicken is somehow always in my head, lurking somewhere.

I don't think that's always a bad thing since my chicken part allows me to think about the good, the bad and the ugly. That "what's the worst thing that can happen" mentality lets me be ready for the worst thing that can actually happen.  It's just being sure I don't let the negative overtake everything, which comes a little too easily at times.

So in trying to understand that balance, I've been trying to relish our good times instead of worrying about the worst. The worst is going to happen.  That's a fact.  How I spend the time getting there is pretty important.

More and more, I think about documenting our good times. How much I love being with Luther.

I do think it's super important to document what Luther's going through.  I want people to know what this ugly disease - which has no cure and seems to fly under the radar - does to people.  How devastating this is.  No chemo.  No medication.  No surgery.  You just live with this slow deterioration of your body.

But I also want people to know how awesome Luther is.  This legacy he's leaving me and the people in his life.  He is the most positive, laid back, patient man I've ever met.  I don't think about it all the time but each day, he's like my GPS - he gets me to places, he keeps me on track, he gives me direction.  Once in a very brief while I think about life without him.  How will I find my keys?  How will I chase that doubting chicken little away without him holding my hand?

Mostly, though, I think how lucky I am to have him and how grateful I am he's opened up my heart and let a little love and light in.  I'll carry that light, that goodness with me always.

The rest of the summer is about fun, about enjoying our time together.  Wait!  The rest of our life is about this.

Im getting married today

I have a moment of quiet amidst the crazy chaotic fun.  I'm so happy this day is here.  My family is awesome... they have put this whole thing together... we  just show up.

In my usual way, I have a few lingering clouds over my head.  Can't even put my finger on what they are.  I will chalk it up to wedding jitters and let myself be happy.  Sounds like a good plan doesn't it?

Luther is doing his darndest to not be different.  Feeding himself.  No naps yesterday.  I get it and I'm giving him that space.  A part of me wants to force him to rest.  Take it easier.  Today is his day even more, I think, than it is, mine so today is, about everything but ALS! 

Better go do bride stuff.  


=================== I realized I had sent this from my phone but I never published it.

Good News / Bad News

So the good news first!

Luther and I are getting married!!    Saturday, July 5th - which is, weirdly, my dad's birthday.  It's pretty much a last minute thing but we figured we had everyone trapped at my parent's cabin all at one time and we'd just get 'r done!

My sister, Ann, became ordained online and she's going to officiate.

Fingers crossed it's going to be a sunny day - I don't remember a rainy 4th of July weekend in years.  And then on to the pontoon parade where the theme this year will be "JUST MARRIED."   (Past years pontoon parade themes have been:  Christmas in July, Pirates, Sock Monkeys)

My brother's girlfriend, Noreen, sings at weddings so she's been gracious enough to say she'd sing at our wedding.     https://www.youtube.com/watch?v=UKQpRgxyyqo    <---- the song

At first, I wanted something really casual and simple - which I think it will be - but I realize we needed to make it feel like a wedding!  A celebration!

Ben and Emily - my youngest niece and nephew - will walk down the deck together.  Will and Molly will walk down together.  I think my mom and dad will walk me down.  My best friend, Jen will be there!

Dad is going to do a reading   ------------->
It's the Corinthians reading, pretty traditional for weddings.  He asked if he could do it and that made me happy and it got me to thinking we need to make it be like a real wedding.  Wait!  This IS a real wedding!!!

I found some other passages I like that I've asked each niece and nephew to read:   something short, something I like that is close to my heart and I'm hoping having the kids involved will make it nifty for them to be a part of our wedding.

We're doing our own vows.  I've got a jillion things swirling around in my head (imagine that) -- there's so much I want to say to Luther!!  I did find a poem I really really liked:

Love by Roy Croft

I love you
Not only for what you are,
But for what I am
When I am with you.

I love you,
Not only for what
You have made of yourself,
But for what
You are making of me.

I love you
For the part of me
That you bring out;

I love you
For putting your hand
Into my heaped-up heart
And passing over
All the foolish, weak things
That you can't help
Spider's Web Dimly seeing there,
And for drawing out
Into the light
All the beautiful belongings
That no one else had looked
Quite far enough to find

I love you because you
Are helping me to make
Of the lumber of my life
Not a tavern
But a temple.

Out of the works
Of my every day
Not a reproach
But a song.

I love you
Because you have done
More than any creed
Could have done
To make me good.
And more than any fate
Could have done
To make me happy.

You have done it
Without a touch,
Without a word,
Without a sign.
You have done it
By being yourself.

The bad news?  I shouldn't say bad.  It is what it is... something we've expected but you're never ready for when it happens.  This morning, Luther couldn't lift his arms at all.

To date, he's had limited use of his arms.  No shoulder strength at all but he could fling up his elbows and grip a little.  This morning, he couldn't fling and no grip.  How can you be alone if you can't use your arms?

So far, I've been able to leave him alone for a time because he can take stuff out of the fridge, pop it in the micro wave.  Awkwardly, he can use the phone or the bathroom...  but he could use them.

Now?  I'm not sure.  Toward the afternoon, as he got "warmed up" - he got a little better.  He could slide his pronto pups out of the fridge, on to a table, wheel the table to the microwave... but that was it.

We're not really sure what to do.  Up the home health care?  We're talking about paying someone just to be with him.  And then I think - that should be me.

It will fall in to place.  For all my worrying, everything seems to fall in to place.  I have a great family, I have a really great guy, I'm getting married!!

Living for now. Love matters.

http://www.huffingtonpost.com/dr-daniel-amen/love-and-the-power-of-now_b_5412137.html

A wonderful article about an amazing couple dealing with ALS.

It's a perfect reminder for me to focus on what's really important!