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We were standing in the kitchen. Sunlight beamed through the window, giving his grey stubble a hint of sparkle. The words came out of nowhere and stunned me. His voice–soft, weak, and scared– drew me in, and the look in his eyes knocked me out. I was caught off guard. This is the every day conversation of caregiving you just can’t be prepared for–it was a doozy. 

Maybe it was the way we locked eyes. His eyes never left mine as he said the words. Almost like it was real Steve peeking out from behind the curtain of his Lewy Body to make sure I got the message. He held his gaze for what seemed like an eternity as the words hung in the air between us.

What Can You Say?

I was at a loss for words and stumbled to reply.

“I’m sorry Steve. That really sucks. We’re here for you.”

That was it. My big response. So. Lame. But it was all I could muster. Then I helped him to his seat on the couch. I felt small, guilty, and helpless.

I know he wasn’t expecting a reply. He wasn’t looking for me to make it better or make him feel better. In his way, in that moment, he was venting. I’m glad he did and hope he continues to, but personally, I was gutted by the exchange.

Part of me wanted to hug him. Another part wanted to cry. Yet another part wanted to break something. It was a quintessential “Life isn’t fair!” moment. The person standing in front of me, a person I love, is trapped in his own ill and aging body. The real Steve is in there, but only occasionally manages to break the shell, get out, talk to us.

Family caregivers see lots of these moments. As a result, they become masters at putting one foot in front of the other. They compartmentalize and emotionally detach in order to get done what needs to get done–day after day after day.

Grim Poetry of Caregiving

But sometimes, the emotion and raw nature of it all creeps in unnoticed and smacks you in the nose. This was definitely one of those times:

What’s happening?

He’s right.

They don’t work.

Steve must be terrified.

How can this be happening?

How did we get here?

Steve doesn’t deserve this.

This was the internal, rapid fire, call and response chant that rushed through my head in the fumbling moments when I searched for a response to Steve’s soul-bearing comment. The grim poetry of caregiving. These thoughts were accompanied by a vivid and fast photo collage–seeing real Steve, prior to his decline, juxtaposed with this Steve, the diminished man standing in front of me, his eyes locked on mine.

In this moment, I wasn’t a master of putting one foot in front of the other. Not compartmentalizing, I was a puddle. I wanted to curl up in a ball, close my eyes and have the situation go away. Not an option–I had to put the emotion in a box and be there for Steve.

Compartmentalizing is a solid self care strategy for me, but it comes with a few caveats.

1. It’s not foolproof. No matter how good a mosquito net you have, there’s going to be the occasional little bugger that gets in. So be prepared.
2. The stuff you’re compartmentalizing needs to come out sometime. Suppressing it forever hasn’t worked for me. Acknowledging it and talking about it (on my terms) does and seems to strengthen the walls of my compartments.
3. When all else fails–get fresh air. Rocket science, I know, but it’s one of the best compartmentalizing aids I’ve found.  

Fresh Air

So the first chance I got, I went for the fresh air. I grabbed the dog and took her for a walk. She’s a pain in the a@# but I love her and love our walks. So that’s what I did. We walked and walked and walked, and eventually, I cleared my head.

On that walk, I thought about the good times and the Steve I know and love. I smiled at how animated he used to get watching a ball game (often times, directly in front of the TV with his jersey on).  I shook my head thinking about his big laugh and memories of him crashing into walls playing ping-pong. Found myself grinning as I thought about some of his ridiculous one-liners and his gift for dropping a bad pun with the biggest smile on Earth. Anyone in earshot would laugh–with him and at him at the same time. Classic Steve. There was never a question he wouldn’t ask, and he always did it with a smile.

All of this brought me back to the first time I met Steve. We met him and my future mother-in-law, Sally, at Mexican restaurant in Boston. Lindsay had told him some things about me in preparation, so Steve, making normal polite conversation, asked me about my experience playing soccer in college.  I answered. So far, so good. But then came the real Steve-ism. 

Steve-Isms

“Aren’t you a little big to have played soccer?”

Ha! We had known each other for under five minutes. “Excuse me, what?” I thought. Not sure what to make of it, I simply replied that I’d put a little weight on since those days (Umm, I guess…) and laughed it off. Lindsay was mortified and I, well I’m not exactly sure of what I thought in that moment other than, “What the h*&@ is going on here?”

That was my first exposure to Steve-isms, and it came 5 minutes into our relationship. We went on to enjoy that dinner and have gotten along great since. And we laugh about that first dinner quite a bit. Classic Steve.

I love the guy and loved thinking about that night as I walked and walked, just trying to clear my head.  It made me smile and laugh. And then, wondrously, the smile and laugh along with the fresh air did the trick. It helped me regain my footing and leave the pity party.

Simply walking, just using my own legs and the fresh air, turned out to be the fuel I needed to get back in the house to be the best caregiver I can, and to help Steve when his legs aren’t working.