Weary

Two a.m.  Can't sleep.  We're in Tennessee,  on the way home.  I feel really alone.  I know I'm not.  Love and support are a phone call away. Plus Luther.  :)  

I guess I should say I feel like a lone driver.

This drive home is taking a lot out of us. I pack,  unpack, drive drive drive.  I've been really bitchy.  I get the most aggravated when it's windy and I have to light Luther's cigarette.   Isn't that the dumbest thing? 

We're visiting Luther's son.   I know Luther wanted to spend more time with him.  He even had a vision they'd spend some time at the gun range.  

I was surprised to hear he thought he'd be able to shoot.   He can't lift his arms or hold my hand.   Shoot a gun??

I'm realizing Luther's brain hasn't caught up with the fact his body doesn't work.  

Take Disney world for example.   He wanted to go for 5 days.  At the last minute he changed reservation to 3 days but still wanted to get to all the theme parks.  He figured we'd get to two parks a day.  I knew there was no way but tried to put it on me.  That I didn't love parks as much as him.

How can I say YOU CANT DO IT!?

After the first park, he slept most of the next day.   He figured it out.

I love LOVE Luther's optimism.   He's amazing.  He's my perfect match, off-setting my glass - half - empty world view.

I hate HATE this disease is chipping away at the core of who he is.  He's lost so much weight.   Is he losing his spirit too?  I'm guessing it's this drive home.  It's a grind.   I'm not much of a cheerleader but I'm giving it my best.  It's my turn to be optimistic,  let him rest for a while...

Who is this ALS person and why don't you like him?

At Disney world a few days ago.   A man stops us and says,  "Who is this Als?"

Not A L S but the plural of the name Al.  Like the guy who owned the diner on Happy Days or everyone's favorite climate change guy Al Gore.

We were busy eating an elephant ear so we didn't really get it.  Plus he was German so it came out a little spooky, as if we were being interrogated.  Imagine Laurence Olivier in The Marathon Man:  "is it safe?"   became "who is Als?"

Actually,  he was a pleasant looking man wearing a pretty cool cap so we weren't too concerned!  We could've used the powdered sugar on our elephant ear as a distraction and run if it was remotely Marathon Man-like. 

Sidebar:   Put it on your list of movies to see if you haven't.  I was going to post a clip of the infamous dentist drilling "is it safe" scene but found it too disturbing out of context.  Still...see the movie Marathon Man if you can.

"Who is this Als?"  He pointed to the sticker on the back of Luther's wheelchair.

It says ALS SUCKS in big letters.  Under it is Let's find a cure for Lou Gehrigs disease.

I told him it's a disease and that's why Luther is in a wheelchair.

What is the disease?  he asked.   I said do you remember everyone who put the ice bucket water over their heads last year?  Oh yes, yes, he remembered.   He said he was sorry and glad to see Luther was having fun in Disney.

He laughed and said he thought Als was a politician and wanted to know why we didn't like him.

I'm thinking about getting a new sticker.

Skinny Luther

11 pm Sunday night.  One last day here and we head home Tuesday.   Via Disney world,  northern Florida,  Georgia then Tennessee.   It will take us about 8 days to get home.

Luther's lost about 12-13 pounds since he's been here.  Not a good thing.  We have a clinic on May 18.  It will be good to see where he's at with all this. 

To me, he's great!  Still eating, talking, walking just a bit.  I haven't seen big changes and that makes me happy.

I attached a map of where we've been living.  You can see how close we are to the Gulf.  To the north you see Beach road. To the south Little Gasparilla Island.  Both about 15-20 minutes away.  Beautiful!  

It's been an amazing 3 months.  Luther and I have grown closer.   We've enjoyed spending time with my parents.  

Most important,  we are heading home with a sense of connection.   Of how special our time together is. 

We need to make time for each other, time for friends and family.   Life is truly far too short to stay frustrated or angry or stuck. 

Time for bed.  Lots to do tomorrow.

Dream world comes to an end

I haven't posted much lately.  Some of it is because being busy.  Some of it because I have to actually form a thought and write something.  Which would take effort.

I lie in bed at night and my brain zings around, filled with a zillion worries, thoughts, lists.

Morning comes, we sleep late, the sun eternally shines and worries, lists, and frankly any thoughts fly out of my brain. 

This past three months has been a dream world.  My biggest worry is what to make for dinner.   I have had some scares with Luther... the fall when we first got here.  His coughing issues.  

Mostly though this has been the best.  For his health.  For us.  For me.

Having the luxury of this time, of no worries, it's given me this open heart or maybe a lighter space to enjoy being with Luther,  with my parents.

Luther and I have grown closer.  I love him so much.   We've become better friends.  My heart aches for his frailty, for his future.

We leave for home in two weeks.   Life starts back up!  Decisions to be made.  Lots of stuff to do. 

This low key languid really warm life comes to an end soon.  I'm excited in many ways to start the next chapter, to see friends again, to move.  But I'm sad this excellent winter is coming to a close. 
How lucky I am we've had this. 

Today was a good day.

Nothing eventful.  Warm, a little lazy.  I jumped in pool.  We had a great dinner with mom and dad. 

Just wanted to report that today was a good day.

Helpless at 4 am

Luther is sitting in his chair.   He's been there for about 20 minutes.  I'm blogging. This feels wrong.

I was staring at him, huddled over but that seemed wrong too.

I've played 100 questions with him but that was futile.  The best thing is to leave him be.... I think.

He's coughing.  His nose is super stuffed up so he can't breathe through his nose.  The coughing is always an issue in ALS. 

It's because the throat has muscles.  ALS weakens and eventually paralyzes involuntary muscles.  Right now, Luther doesn't swallow as much as you and me.

Spit (mucus) builds up on the back of his throat causing him to cough. 

He'll cough a ton after eating.  Doctors say it's because food gets trapped in wrong place.

Anyways,  at night, when you lie down, all that spit mucussy (?) gunk builds up more and his nose gets really stuffed up.

Every night he wakes up and coughs a little.   We got Benadryl and that seemed to help.  But tonight, not so much.

It's really hard to sit here and do nothing.  It sounds like he's choking.   I'll rephrase.   He is choking.  

I gave him another Benadryl.   It's been 10 minutes...it seems to be working. 

This has been the longest cough/choke episode so far.   I hate this.

Lazy days

This lifestyle of the moderate middle class and retired is great.  Lazy days doing nothing.  Physical therapy outside by the pool.   Time to relax, sightsee, enjoy each other.

From the outside, Luther seems to be in a holding pattern.   No arm movement, very limited hand movement (his right hand is shot.  Left hand has some grip and movement). 

He can still get up (if the chair is high enough) on his own and walk a few feet.  Steps/stairs are virtually impossible.   Anything longer than 10 feet wears him out.

But all in all there's been a languid, unhurried feeling down here.  A little bit like time's stood still. 

Under the surface though, I think there's a little more going on.  Luther never says much.  I complain about a gnat bite but he's pretty stoic about pain. 

The signs are there.  He's not drinking as much water.  Not eating hardly anything.  Asking for pain meds more often.  More naps. 

I ask him what's wrong.  He says he's fine.   I've stopped asking what he wants to eat and force him (in a gentle way) to eat lunch. 

He was visibly uncomfortable a couple days ago when we were traveling, seeing sights.  I asked him if he wanted meds.  No, he said,  I don't want to become dependent.

I asked him to think of it a different way.  I wanted to shake him and yell WHAT THE HECK?  But I've learned that doesn't really work when trying to get someone to change their mind. 

I figure planting a small seed in which my idea (the correct idea!!!) is sown will soon become a bigger seed of an idea he thinks he came up with.  

Back to him not wanting to take pain meds, I told him it's about being comfortable.   Enjoying the time here.  Not trying to power through the pain.  There will be a time where meds might not help. ..  enjoy this time right now.

Besides, between you and me, it's not like he's taking pain meds a million times a day.  We're talking one.  And the prescription is for 1-2 every for 4 hours.  If he takes any, it's been one every third day.

So now that Luther thinks it's his idea to take pain meds more often,  it's a conundrum,  right?  (My ten dollar word for the day)  Hmm.  I just looked up the definition.   The answer to a riddle.  A paradox.  I guess it is, in a way. 

Luther's taking more meds which is great so he's not in pain.  But Luther's taking more meds which isn't great because it means it's a change... He's in more pain than before.

Little changes.  Luther will never get better. 

I read all these blogs and articles on people who say they are slowing down ALS by taking mega doses of supplements.   Going strictly vegan.   Exercising (which we've been told deteriorates  your muscles faster).  Rubbing coconut oil on limbs. 

I wonder if I should be more firm about that stuff.  I do the coconut oil because we stretch his limbs.  I figure why not coconut oil?  Its all the rage, it smells great and I'm rubbing anyways.  Should I insist on all natural meals?  Add kale shakes to his diet?

Am I giving up by not trying to find a way, any possible way to slow it down?

Early on, Luther decided he wanted to lead his life as normally as possible.   Eat the food he loves.  Hang out with friends, family.  Do the stuff he enjoys.  We're still trying to find a way to get him fishing.

He didn't want to be consumed with the disease in terms of new foods,  adding supplements,  rejiggering his though process in some mystical way.  

That's the issue with ALS.  Everyone's symptoms and subsequent decline is different.   Stephen Hawking has lived 40+ years with it.  That's rare but it happens.  

Some people get it in their throat and mouth first.  I've read of folks who are still driving, working because their limbs haven't been affected.  Luther is the opposite.  

In the end, though, regardless of the differences of the disease, it does seem to lead to the same place.  A difficult decline, a change in the life you had planned. For most, a shorter life.

Luther just asked if I'd help him to bed.  It's noon.  This has been the case the last couple days.  Back in a sec.

We went sightseeing earlier in the week.  On the go, lots of walking and rolling.  It occurs to me he's wiped out from that.  It lurks in the back of my head that it's a little more.   That he's in more pain, he's not eating, sleeping more.  Is another change in the works?  Is ALS planning something new?

Probably doesn't matter.   As before we'll just adapt.  

Mom and dad are gone.  Luther's napping.  A lazy afternoon ahead.   That's why we're here.