This morning I woke up singing that old song:
“You and me against the world. Sometimes it feels like you and me against the world…”
Well, friends, let me tell you—it’s been a doozy of a week, and that song felt less like a tender ballad and more like a battle cry.
Living with Lewy Body dementia (and its sidekick, Capgras Syndrome) is like riding a rollercoaster that forgot it was supposed to be fun. One minute, we’re sipping coffee and watching the birds; the next, I’m feeling like the cleaning lady in one of those old cartoons—scurrying behind with a broom, mop, and bucket, desperately trying to clean up the trail of chaos left in my loved one’s wake.
Except this isn’t a cartoon. This is real life, and the “messes” aren’t cookie crumbs. They’re the kind of heavy, scary, heart-pounding situations that make you feel like you’ve aged ten years in ten minutes.
When Dementia Gets Loud
Capgras Syndrome doesn’t just whisper little lies into the brain—it shouts them. My loved one has been convinced of some very big, very wrong ideas lately. And when those ideas collide with the real world, the fallout is… well… let’s just say it’s the stuff police reports and doctor phone calls are made of.
There’s a strange sort of whiplash that happens for caregivers. You spend your days pouring every ounce of energy into keeping things safe, calm, and steady—and in the blink of an eye, you’re thrown into crisis mode. One second you’re folding laundry, the next you’re explaining to a medical professional (again) why you’re so worried about certain medications, or why the term “black box warning” makes your stomach drop.
The Caregiver’s Shuffle
Here’s what it feels like:
Imagine someone walking through the house with muddy boots. And there I am, following behind with my scrub brush and mop, scrubbing furiously, trying to keep the house from looking like a swamp. Except in my case, it isn’t muddy boots—it’s dementia storms. And no matter how fast I clean, there’s always another mess waiting around the corner.
Friends, I’m weary. Bone-deep weary.
The Not-So-Shiny Truth
I wish I could tie this up in a neat bow and hand you a happy ending right now. Truth is, I don’t have one today. Some days hope feels hard to find. Some days all I can offer is honesty: this is so abnormal, so heavy, so isolating.
But maybe that’s the hope—hidden right there in the honesty. That you and I aren’t the only ones dragging our scrub brushes behind us. That when the world feels too big, too loud, too impossible, we can at least whisper across the fence to each other: “I see you. You’re not alone.”
So, dear fellow traveler: if you’re standing in your own mess of muddy bootprints today, please know I’m standing in mine, too. And maybe—just maybe—we can hum that song together:
“You and me against the world…”
And if the world is winning this round? Well, tomorrow’s another round, and we’re still in the fight.
With love (and a very tired scrub brush),
Nora Poppins