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. 

Angry bees and other morning thoughts

Bluuuurg!  :(   I just lost my whole post!  I'm typing on a phone, we have no computer in Florida and it's dang frustrating.  Plus the reason I had to stop typing, stop my train of thought, stop having a "me" moment is because of Luther. 

Sure, sure, I could've (should've) saved the post!!  That's not the point (right??).  Well, sort of it is...   what I'm trying to dance around is right now, especially in the mornings, I have a love/hate relationship with caregiving.

As I type this, I'm outside.  9 a.m. - a soft breeze rippling the water on a canal 20 feet from me.  Im barefoot, still in pj`s, waiting for my thin slice 40 calorie Pepperidge Farm bread to pop out of toaster.  Life is good.

And yet, I cringe at my mornings.  I cringe at the fact I'm saying I'm cringing out loud. 

In our mid-western good-natured way, it feels wrong to express a negative emotion. 

Plus that whole "my husband is dying and can't move his arms and if he could do it himself, he would" thing.  That's the trump card.  There is nothing I can feel that is worse than that.

I am being a little dramatic.  Of course we all get to feel how we feel.  If we all said I shouldn't feel this way because someone somewhere is worse off, our heads would eventually explode with pretending everything is always awesome. 

I've learned it's good to let out the junk, say it out loud, get input, file it away and move along. 

This morning, as I lit my husband's cigarette, wanting to smack him upside the head, wanting to scream at him that I hate this, I hate the idea that each time I light his cigarette, I'm killing him faster.

But it's our routine.  The awful morning routine.  He can't get out of bed, so I get up when he gets up.   (Ok I have to LOL because it's rare I want to get up earlier!! I usually want to sleep longer)

Very first thing, he smokes a cigarette.  It's a process I despise.  Sticking it in his mouth.  Lighting it.  Fighting the wind and fighting with Luther when the wind blows wrong and I can't figure out how to light it.   Smelling it, smelling him.

At this stage, he can walk to his chair and smoke on his own.  It's awkward to watch.  There will come a time he won't be able to do that.

I feel like a traitor, betraying Luther.  His one bad habit.  

Then he eats.  Has a cup o coffee.  And smokes again.  Same process every day. 

I'm at the end of this rant.  I don't have the energy to sustain it.  It is what it is.  It's cliche time.  Pull up my big girl panties and get over myself. 

The thing is, in this case, I feel my resentment to mornings slowly, slowly creeping higher. 

There are things I accept willingly because he simply cannot do them.  Try brushing another adults teeth... it's maddening.  But I do that without my head feeling like it's filled with angry bees because he can't do it. 

Is it the smoking that has those bees on overdrive in the morning?  Or the robot way I feed him.  I don't feel like that at other times, at lunch or dinner.   We are more engaged, I dip his chip with a free heart and a clear head.

Maybe I'm just not a morning person and the explanation is as cinchy as that. 

The day has started.  The bees have subsided.  Time to get a move on.

We will all die some day and other things you shouldn't say...

Things not to say:

Well, I could get hit by a bus tomorrow. 

None of us ever know when we're going to die, do we?

You don't look that sick.

Why don't you exercise more, build up your muscles?

Oh, you can walk?  I thought you were sicker.

(said to me)  you must feel lucky you don't have to work anymore

Happiness is a choice, so just decide it's going to be a good day.
________________
Ok, ok, I get it.  I've been in that position.  Unsure what to say.  Uncomfortable.  Not wanting to be rude. 

Especially when it's a disease you aren't sure what it is.  Lou Gehrigs.  ALS.  You know, that ice bucket challenge thing.

I also understand we all haves our challenges, our issues.  We can't compare. 

Why do I come here and write about our experience?  What gives me the right to think our journey is any more special or incredible than anyone else's?

It doesn't, other than it's my blog.  I started it the day after Luther was diagnosed.  My story is just that.  Mine.  Luther's. 

Writing here helps me sort out the confusion in my head.  I'm not always sure who reads this.  The tone of this blog has changed over time, as I realized it affected family and friends.  I couldn't always blurt out the negative.  I needed to share the joys and discoveries.

Its almost four a.m.  I haven't slept all night.  Not sure why.  Nothing overtly angsty clanging around in my brain. 

Luther is terminally ill.  Will he live a year?  Five?  We dont know. 

The thing is, we mourn these odd losses each week.  A constant grieving process.  Loss of arms.  Now hands.  Right leg.  Left leg is twitching.  Loss of independence.  Loss of self. 

Sure, you might walk out tomorrow and get hit by a bus.  You don't know.  But you got up and walked.  You didn't spend the last year in a downhill slide from healthy to immobile.  You didn't think twice about chewing your food, wondering if you'll choke this time?  

People tell me to be happy.  Choose my path.  Choose happiness.  You know what?  Some days, it just doesn't feel like a choice.  I get to be mad, frustrated, sad.  Not at Luther but at  the disease.  Im allowed to have these feelings we all want to bury and avoid.  Fughettaboutit!! I am going to let that SH*T out.  In appropriate Minnesota nice ways :)  

The reason for writing this stuff is to vent, to get it out, sort through it.  But I've also become ~ or am becoming ~ more of a crusader for letting the light in on ALS, what it's like to have this disease and secondly, caregiving. 

My.husband struggles every day with every single thing.  He has to wait for someone to help him with virtually every thing.  Imagine it.  How patient would you be??  

Each day he is in constant pain.  Car rides hurt his bony butt.  If I forget to stretch his arms, he doesn't move them for hours at a time.  Imagine it.

Coming back to the beginning of this post, I will say I'd rather have folks  say something to us than nothing.

Sometimes stuff comes out awkward but its a good learning curve.  ALS is a mysterious disease.  At times, Luther doesn't "look" sick.  He has a great attitude, he doesn't look like Stephen Hawking, so its deceiving.  And I think it's good Luther looks good! 

Four a.m. - my thoughts are fading. 

Luther is sick.  He is dying faster than us.  There is no cure.  No possibility of remission.  Each day presents a new sense of loss.   He hurts.  His self worth is challenged.  There are days where his health stays the same but it will not improve.  Always waiting for the next change, the proverbial shoe to drop squarely in to our lives. 

I'm going to go snuggle in next to him.  Maybe that will help me sleep.

Update

I had written this long awesome post about Luther.  I interviewed him for this blog, thinking it would be interesting for people to hear from him. I'm typing from my phone and I forgot to save it.

I'm pissed I didn't save it and a little emotionally blah after thinking about this stuff sooooooo...

I will write more later.  A brief update:  We are in Florida.  Life is good; the weather agrees with Luther.  His mobility sucks:  his arms, hands are completely gone.  I do virtually everything for him now.  We are together A LOT.

When your muscles die, they constantly twitch as they look for healthy nerve endings to connect to.  Because the nerve endings aren't healthy, muscles can't connect, twitching starts and eventually no mobility. 

His right leg and his stomach are twitching like crazy.  He says he doesn't feel it, thank goodness. 

He's in the wheelchair 98% of the time.

Good part is his coughing isn't as scary crazy.  Is it the climate change?  That's been the only change.  A good change!

More later on Luther's "interview" later.

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.

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!!