I hold you tightly within my heart

This is a post from another caregiver I've come to know whose spouse has ALS.  They've had ALS for a year longer than we have.  While our situations aren't exactly the same and I did cut out a few paragraphs that didn't pertain to our lives, he sums up so much of the frustration, guilt, sadness caregivers feel each day.  It's a tough read but an important one.

FYI - as you read this, PALS means Person with ALS.

His perspective:

I have thought for a long time that this must be what a soldier in battle feels like.  The events of each day are completely out of your control.  There is no indicator of what will come next and when. There is unrelenting stress and anxiety in dealing with the responsibility yet you need to remain calm, focused and stay on your toes.

You don't sleep, eat, take a shower or use the bathroom when you want, you do it when you can, if you can.  You are physically and emotionally exhausted all of the time and there is some part of you that is always sore.  And like any soldier will say, you can't explain it unless you've been there.

On top of all this. I don't have my spouse anymore.  I mean, physically I do, but she is now my full time task.  I don't mean this in a burdensome way, but in a matter of fact way.  And it's a real pisser when you realize that the only person who can help you get through it all is the person who now has ALS.

Your role is now caregiver, not spouse.  You are there to serve them.

You also get to simultaneously wonder about your own life and your future.  I left work to stay home full time.  I am on unpaid leave, but how long is anyone's guess.  Is my company going to do this indefinitely?  Not likely.  How long will they go?  I am going to be 53 this week.  What if I am out of the job market for 5 years? Can I get another job?  Will I be able to retire like I planned?  Will I die alone?

Those are all valid concerns but rest assured, you can't mention it to anyone.  Then there's the pall of ALS hanging over every aspect of your life.  Your home, where you once shared so much enjoyment and was your source of "coming together" is now full of medical equipment and seems more like a hospital ward than a home.

Your friends with ALS die and you deal with the specter of death every day.  Every freaking day.

You become someone you never were and never want to be and the only suggestion anyone has is "you need help."  No really, I don't because help is work too and it's up to me to manage all that.  My spouse can't speak.

Can I ever leave her alone with someone?  And when/if you do have help, you're always on the clock. I have X amount of time to X amount of tasks.  It's not downtime or is rarely downtime.  You now have time to get done everything you need to get done.  If your help can't come for some reason, it's you, it's ALWAYS you, who must change or cancel plans for that time to accommodate your PALS.

You get to have all these thoughts knowing that tomorrow you're going to do it all again without resentment or making your PALS feel like a burden or a chore.  You love them and you want them to know you have their back and in this time of their life, you can be counted on to come through ane be everything you can be for them.  Then you'll do it again the next day.
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From me:

The quote I added is intended for someone experiencing a loved one's death.  I included it because in many ways, I mourn the life I used to have with Luther.  The life I should've had, the life we planned together.  The weird thing is it's like a little death each day.  It goes on and on.

To lighten the mood a little, I will say it has brought us closer together.  I'm not dragging myself through each day in a state of mourning -- it lurks below the surface, for sure.  You have flashes of sadness.  It gripped me the other day when I was shoveling rock, of all things.  I can't even tell you why it hit me.  I was alone, outside and it felt like someone was squeezing my heart.  I cried for about two minutes and moved on.

I had a conversation with the person who wrote this and he had this "aha" moment... this scary moment of how long will this go on?  How long can he sustain being a full time caregiver?  For them, it's been 3 years.  You get mired in the day to day and suddenly, 3 years later, you look up and think about your future.  How can you look at your spouse and say I'm worried about my future?  They think, hey - at least you have a future.

It's a tough tight wire act.  Balancing between being the world's greatest cheerleader and feeling like you're going to crumble at any moment.  You find that middle ground.  It's a tenuous and frail place to live... within that odd space - like the eye of some sad hurricane - you find this amazing strength.

Ok - I'm taking off my super hero caregiver cape.  Hahaha!  Superhero.  Far from it.  Tired wife cape. Time for bed.  I tend to wait until I know I will fall right asleep.  The worst is lying in the dark letting the demons dance around in your brain.  I think I'm there.  I just tucked Luther in bed, now it's my turn.  Sweet dreams, everyone.

This is what scares me....

A post from someone with ALS (from an ALS support group I'm in):

I've been feeling down lately, thinking a lot about the death dignity law we have here in Washington State.  My life is all but over, existing of bed, power chair, lift chair, bed.  Cramps keep me awake most of the night, and I lose strength and abilities every day.  I am tired.  

After a year and a 1/2 of 24/7 care, my wife/caregiver is tired as well and the worst is not here.  ALS is wrecking her health too, anger and stress are at an all time high.  

Would God really send me to hell for making such a choice?  He has already condemned me to death, does he really need to pick the time?  How do you get back your will to live once you have lost it??

From me:

This post came at such a weird time.  Luther fell down last night.  We had to call 911.  It was awful. He went to sit down to use the toilet and he fell to his knees instead.  His legs are very weak but he's been able to walk a short distance.

I realized, for all my angst so far, I've had it easy.  In one day, I realized this is going to be a really really tough ride.

We have a lift, it's called a hoyer lift.  I put a sling around Luther and lift him up with this machine. We haven't had to use it so it's stored away, the battery is dead.  We've been (falsely) comfortable thinking we won't need it for a while.

I could've used it last night.  I couldn't lift him up.  I ran to get the hoyer and it wouldn't work.  I felt awful.  I'm the caregiver, the keeper of Luther's health.  This was a giant failure.  He was in tears... he's never in tears.  He was in so much pain.  I tried 3 times to lift him up.  I kept thinking of those moms who lift cars off their kids.  I could not lift him up.  

I wanted to call 911.  He said no - he was defeated but his pride was stuck right up front... How could I lift him?  He wanted me to do it.  He wanted me to use the lift, to take care of him.  I started crying too.  I had to call 911.  I watched my man, my husband get picked up by two other guys and I know it chipped something away from him... his dignity?  his manhood?  Whatever.  It was sad, it was hard. 

Today, he told me he didn't really want to walk anymore.  How does someone say that?  How awful. He tried a little bit.  He couldn't do it.  So all day today I had to be with him every minute.  He couldn't sit on the toilet.  It was one of those defining moments.  Now what?  

Up until yesterday, he could do some things on his own.  Use the tv remote.  Get up from his chair. Use the bathroom.

Today that changed.  Today seems like a milestone.  The past month has been leading up to this. Once he can no longer walk, life becomes different.  24/7 care.  

I'm hoping the fall just tired him out.  That tomorrow, his legs won't hurt as much and he'll be able to walk again.  I'm not ready for this.  I'm not ready to see my husband in a sling, lifted up by a machine because he can't get out of his chair.

I"m not ready to face the questions the man asked above.  

Yep - the ice bucket challenge rolls on!!!

This year, the ice bucket challenge is NOT taking the world by storm like it did last year.  That was lightning in a bottle, a once in a lifetime viral moment.

However, August has been designated the month to take the ice bucket challenge until there's actually a cure.  #everyaugustuntilacure

Sooooooooooo - I got the bright idea we'd take the ice bucket challenge every single day this month. Our way of supporting the cause.  Fighting the good fight.

Man, it's tough thinking up new ways to pour a bucket 'o ice over my head!

But we're having fun with it.  We love the idea we're creating even just a sliver of awareness about ALS.  That's our goal with this year's challenge.  If we raise some money, that's even better.  Mostly, though, we want people to know more about ALS because it's such a mysterious, devastating disease.

Without further ado, here are a couple of the videos!

WITH THE SPRING LAKE PARK FOOTBALL TEAM:
https://www.facebook.com/lynn.schlieff/videos/vb.1320752420/10207175125519405/?type=2&theater

KICKING IT OFF WITH THE GIRLS UP NORTH:
https://www.facebook.com/lynn.schlieff/videos/vb.1320752420/10207095201761361/?type=2&theater

MOM AND DAD'S CHALLENGE:
https://video-ord1-1.xx.fbcdn.net/hvideo-xft1/v/t42.1790-2/11843921_10204323983771805_16897355_n.mp4?efg=eyJybHIiOjQ5OCwicmxhIjo1MTJ9&rl=498&vabr=277&oh=1deceacb16fe84dd285614331ab6463c&oe=55CD9236

LAST YEAR'S ICE BUCKET CHALLENGE JUST FOR OLD TIME'S SAKE:
https://www.facebook.com/lynn.schlieff/videos/10204378768132218/?l=7951039385150306085

Speaking of donations!!  Here's the link to our ALS Walk.  You can Join our Team or Donate to a Walker.  If you click on Donate, on the next page, you'll click on Find a Team.  Our time is FLYING SQUIRRELS!!

http://web.alsa.org/site/TR?pg=entry&fr_id=11022#.Vc3qrLJViko

Thanskgiving full

I was going to title this "I feel fat and ugly" but that seemed dramatic.  I do.  At this exact moment: 1:46 a.m, I do.

It's Monday night... well, Tuesday now.  Day before therapy day.  I was going to try to write here every Monday to gather my thoughts for therapy but it's hard wrangling those sneaky kitty thoughts... they run everywhere, scattered, hiding.

I've always been a little chubby.  I've been sort of ok with it.  Sadly, I have spent years thinking "if only I lost xx pounds I'd be:  A.  happier   B.  more successful   C.  more outgoing  D.  _____ fill in the blank with some unattainable adjective.

Always chasing a stupid brass ring, some goofy goal when really, I was always already happy, smart, successful.  I was just holding up some fun house mirror so I couldn't see myself that way.

Anyways.  This is about now.  Well - maybe a little about the past.  How you handle problems.  Fill the void. Face realities.

In my past, I built big 'ole walls to keep people away.  I guess I didn't want to be judged.  It was easier to retreat.

I see that pattern happening again. Wanting to pull the covers over my head and pretend I have no problems.  But who doesn't do that? I think it's ok to do a little of that once in a while.  A little R&R.

Now, I have someone who relies on me.  I have to get out of bed.  I don't have the luxury of time to hide away and pick myself apart.

I go to therapy each week.  I write here.  I'm in support groups.  I'm really open with Luther, with my friends and family about how I'm feeling.  You'd think these avenues would purge those clawing kitty thoughts right out of my brain.

Sometimes it helps.  I feel lighter when it isn't stuck inside my gut, my head.  My heart.  But man, it's always there.  The heaviness of our situation.  The weight of dying.  Decline.  Grief.  Sadness.  It's stuck somewhere inside me.

To quell this feeling -- I eat.  I eat until I'm Thanksgiving full.  Luther was diagnosed one year, eight months ago.  He's lost about 40 pounds.  I've gained 20.

I get it.  I know stuff.  If I ate right, I'd feel better.  If I exercised, I'd feel better.  I know this.  More to the point, I know - I KNOW - this is emotional eating.  I have Brad Pitt in my head constantly saying this:

My life right now seems really out of control.  It's being dictated by ALS - a thing I cannot control. I had to quit my job because of it.  Become Luther's caregiver.  Watch my husband decline.  I've lost my sex life, parts of my personal life, my work life, my home, my future with my husband.

It's like this constant, constant grieving process.

On a day to day basis, I don't think like this.  All of this simmers under my lid, so to speak.  94% of the time, I'm grateful to have the opportunity to hang out with Luther, we figure out different ways to be intimate.  I'm glad I got rid of my townhouse, I've found new ways to reach out to friends and family.

But the remaining 6% is there.  Right under the surface.  So I shove food in to my face because I don't want to feel it explode.  I want to be numb.  I've talked about it before:  robot mode.  Don't feel. Don't think.  If I let out the sadness, the anger at how unfair this is, my bitterness at fate, it might never stop.

I want to be Thanksgiving full - it's like that makes me feel satisfied.  Weird, huh?  Because after, I feel gross and ugly.  I think the scales (no pun intended in all this talk about fat) are tipping and the gross/fat part is bugging me more than this need to be in a food coma, which is why I'm writing about it tonight.

I read something interesting:  fat is not a feeling.  Sad is.  Anger is.  Love is.  Fat is a thing, not a feeling.  So stop "feeling" fat.  Feel frustrated by it.  Or accept it.  Whatever... just stop feeling FAT and understand the true feeling and why.

I was supposed to call the Emily Project, per my therapist.  I did not do this.  Instead, I bought a box of Lucky Charms.  I'll end up calling them tomorrow morning so I can tell the therapist I did it.  The Emily Project is an eating disorder clinic.  It feels crazy to say I have an eating disorder.  But you know what?  This is a crazy time.  My reactions feel crazy.  Maybe it's a good idea to ask for help.

I should get to bed.  My skinny skinny husband is sleeping.  I'm tired but I can't sleep.

Deep thought of the day:

August is Ice Bucket challenge month.

https://www.facebook.com/lynn.schlieff/videos/10207128861682838/?l=1882769122155038055

Click the link above to see day 6 of our ice bucket challenge!!

We are in day 7 of our ice bucket challenge.  We're taking the challenge every single day this month and challenging our friends!  August is now "every August until a cure" month in the ALS world.

So really, what's the deal?  Are we asking you to pour a bucket of ice water over your head?  In a word, yes.

Why?  It's not about the shock value of it, although that's fun!!  Before Luther got ALS, I didn't know much about it.  When I tell people he has it, I get a blank stare.  So then I say he has Lou Gehrig's disease.  Sometimes people know that name.  Then I say, you know, the disease that got everyone to pour a bucket of ice over their heads.  Ohhh!  Sure!  But I don't think many really know what ALS is all about.  Why would you?  There isn't a ton of media (until last year).  Not a lot of people get it.
 

Sure, the ice bucket challenge is about raising money.  But if you don't donate, that's ok.  We all have charities close to our heart.  We have immediate financial needs.  We can't donate to every cause that comes across our Facebook pages.

This comes down to awareness and support. When you take the challenge and then challenge three more friends, you're creating awareness about ALS. That's become important to us.

The more people who know there is no treatment or drug to slow the disease (ok, there's one drug with awful side effects that has shown to slow ALS by three months) as well as no remission, no cure, the more understanding about ALS, the better.

You don't have to pour ice water over your head but it is fun to see! smile emoticon You don't have to donate anything. In the days, weeks, months to come, as Ed's health and mobility decline and our life changes, what's become most important to us is your support.

Knowing that you rallied during this month, seeing your posts and videos does more than you know for Ed's spirit. Mine too. ‪#‎everyaugustuntilacure‬

We think we have time...

http://espn.go.com/mlb/story/_/id/13345108/mlb-teams-als-association-ice-bucket-challenge

Click the link above and take a few minutes to watch this ESPN story about Pete Frates, the guy who started the Ice Bucket challenge last year.

He was diagnosed at age 27 in 2012.  Watching this video is tough, yet inspiring.

As I watch his progression, I see Ed's progression.  There's a scene where Pete's home health care worker is getting him out of bed - this is exactly how I get Ed out of bed.  Brushing his teeth, his father brushing his hair... these small daily moments that become intimate yet routine.  Today, 3 years later, Pete can't move and is on a vent 24 hours.

In the beginning, his dad quit his job to become Pete's full-time caregiver.  He says doing this has given them the opportunity to say the things that take a life time to say - the important things we should be saying to those we love but overlook.  We think we have so much time.  I know we don't. Every day is a gift.