You Only See the Reflection

This morning, I saw this post dedicated to all the Caregivers out there for Valentine’s Day. And I loved it. Even though my caregiving days have ended, it still made me feel loved, because it came from a position of personal knowledge.

I never know how to respond when people express their admiration to me for being a caregiver…for my dad, or for Charlie…but, especially for Charlie. 

If you’ve never been a caregiver…I mean a steady, primary care, this person depends on you kind of caregiver, it probably looks like it’s this noble, selfless act that stems from a place of deep seated and abiding love.  And yes, it IS that.  But that is also a superficial reflection of what you see from the outside looking in. 

There are things that happen behind closed doors that very few are privy to.  Ugly things, dirty things, painful things. Part of that is by design; part of that is just due to circumstance.  No one wants to showcase their shortcomings, the ugliness that can occur, the selfish thoughts that creep in no matter how hard you try keep them at bay.

My best friend knows pretty much everything about our journey with ALS – the good, the bad, and the ugly.  She came to see us after Charlie came home on the vent with the trache.  We’d been home just over a month and things had started to get really hard.  He was terrified.  I was terrified.  He used a wireless doorbell to signal me when he needed something.  He did so probably every 10 minutes incessantly. 

I could stand at the edge of his bedside after having spent an hour taking care of his needs, ask if he was all set, and then get to the doorway of our bedroom just to hear that damn bell go off.  I got REALLY good at doing an about-face.  Who knew marching training would come in so handy twenty some-odd years later?  I started eating standing up because it wasn’t worth it to sit and sigh with relief only to get summoned back the exact moment I started to relax.    I couldn’t take a good poop.  Do you know how hard it is to poop on command?  Or poop under pressure?  It’s no wonder caregivers often suffer from gastrointestinal issues.

By this time, Charlie was completely dependent on his Eyegaze machine to communicate.  I reached the point where I would specifically ask if it was okay for me to go eat…or go to the bathroom…so I could do so without interruption and wait patiently for him to type his response.  He would get SO pissed off.  It made him angry that I felt I had to ask “permission,” so I’d get “the stare” before he would type out something meant to piss ME off, which it invariably did.  We spent a lot of time being pissed off at each other in those days.

So when my best friend came in to see me, things were going about like that.  She told me later, she’d never seen me like that before.  I hadn’t showered in days.  My hair was greasy.  I had a crazed look in my eye.  That bell was making me insane.  To this day, I can’t hear that particular tone without tensing up. 

She said it was just heartbreaking to see.  She probably saw the worst.  And that being said, I regularly met with people in my pajamas.  Some of them were part of Charlie’s care team, others were UPS delivery guys, still others were working on building the porches and carport. I may or may not have been wearing a bra.  I could give a flying flip about that. 

It took a while, but we finally settled into a “rhythm.”  But that “rhythm” came at a price.  It came at the cost of bottling up fear, panic, the luxury of vulnerability, and letting go of all the hopes and dreams we once had, just to live in the present day, from one breath to the next. 

Because ALS is a series of losses, it’s a constant grieving process.  You might plateau for a little while, but then something else goes.  When that happens, the grief cycle starts all over again.  By this time, we were well past the stages of denial and bargaining, having given up any real hope for a cure, so that left a Groundhog Day Affect of seemingly never-ending anger, depression, and acceptance.  It’s an exhausting way to live.

You lose track of when the “last” anything happened.  And it hurts.  It hurts so bad.  You get angry.  You get jealous.  You scream and you cry.  And you love.  And sometimes it’s all of those things at one time.  

We caregivers do the best we can.  But we will never feel that our best was good enough.  That doesn’t mean we feel we didn’t DO our best…just that our best was not enough.  And there’s nothing you can do or say to make that feeling go away.  It just is.  It wasn’t enough.  Because in the end…we lose.  We lose them.

And that’s why it’s hard to respond when people say nice things about what a great caregiver you are/were.  No one ever says, “When I grow up, I want to be a caregiver…”  At least, not THIS kind of caregiving.  No one wants to put someone else’s needs before their own.  No one wants to sacrifice their hopes, dreams, and abilities to the beast of a disease, but more than anything – NO one wants to watch helplessly, while the person they love most suffers so terribly day in and day out. 

At least, not THIS kind of caregiving.

– the underlined link will take you to the Chronicles of Charliea
(Our Facebook Group for sharing details about Charlie’s care)
if you’re interested in seeing what some aspects of “care” entail.

It wasn’t an altruistic choice that I made.  I did what I had to do, not because I WANTED to, but because life happened and said, ‘here you go, have fun with this one…’ So, I stepped up. I didn’t hesitate. I didn’t run. Nor did I hide. And we still laughed, and we loved, and we made as many memories as we could in the short time we were granted. But I cussed, and complained, and raged, and cried, and hated every.single.awful, ugly, terrible minute of it. I didn’t choose to be a caregiver. Caregiving chose me. And I just survived.

So, to anyone who has ever sent a kind word my way, thank you. I don’t deserve it, although I DO appreciate it. I thought you should know that underneath that bright and shiny reflection lives the memory of old pajamas, an unwashed body, greasy hair, bloated tummy, and a lot of colorful, choice words that don’t bear repeating.

Life pushes you into a corner and you step up or you step in. That’s just what you do. That’s life.

Katie Bauer