“Unremarkable”… Until It’s Not

There’s a very specific kind of panic that starts in the chest and works its way up your throat.

The coughing.
The choking.
The red face.

It’s the kind that makes your body forget how to function for a second. You hold your breath while they fight for theirs. And when it passes, when things settle just enough … you think, okay … we’re back.

Ha.
Not so fast.

Because this is Lewy body dementia.

And Lewy has a way of stepping in like, “Oh, you thought we were done here?”

The Episode

What we’ve come to call (insert air quotes) an “episode” decided to ramp things up.

Eyes rolling back … but not just back - fixed up and to the right.
Body slumped.
Gasping.
Drenched in sweat.
Out. Just … out.

And then the chewing motion. On the right side of his face.

That’s the moment your brain goes straight to:
WTF… is this a stroke?

The Heave-Ho Crew

Enter the chaos choreography.

Getting him up - no small feat. The “heave ho” into the walker. And let me just say this: thank God for strong daughters. Mine was there, steady, capable, jumping in without hesitation. There are moments you don’t plan for … and then there are moments you simply survive because someone is beside you.

We got him to bed.

And then came the watching.

That helpless, fix-it-with-your-eyes kind of watching. His body floppy, not quite connecting, not quite right. We knew where we stood - he’s DNR. No invasive heroics. Just us, making decisions in real time, balancing comfort with concern.

Eventually, things settled … enough.

Not good.
Not normal.
Just… enough.

Morning Decisions

Morning didn’t bring clarity. It brought more questions.

Still disoriented.
Still floppy.

And the realization:
There’s no way we’re getting him into the car.

So, EMS it is.

There’s something surreal about watching an ambulance pull away with your person in it. My daughter riding shotgun. Me following behind, trying to keep it together while my mind runs ten steps ahead.

The ER Experience (aka Controlled Chaos)

“Stroke call.”

Those two words move mountains in an ER. Straight to CT.

And then … the waiting.

The conversations. The repeated explanations. The cognitive questions. The attempt to stay focused while someone in the next bed is screaming like the world is ending.

And yes …
Why don’t ERs have earplugs? Asking for all of us.

“Unremarkable”

The CT scan comes back.

Unremarkable.

If you’ve lived this life, you know that word doesn’t bring relief. It brings frustration. Confusion. A grinding of teeth that says, but something clearly just happened.

We pivot.
We negotiate.

My daughter - clearly possessing some top-tier negotiation skills with her - gets him to consider an MRI “…just for the sake of clarification”.

MRI results?

Unremarkable.

Cue the collective internal scream.

The Overnight Shift

It’s late. He can’t walk. The hallucinations are creeping in. The headache is splitting.

Our daughter considers the renegotiation of the deal:
We stay.

And then - like a small miracle wrapped in scrubs - our ER angel, Ashley, finds us a “private” room. No upstairs beds available, but this? This works.

We settle in.

Him - finally getting some relief with morphine (because Lewy doesn’t play nice with most medications).
Me - curled up in a hospital recliner that’s been generously upgraded with pillows and a blanket from home.

It’s not comfort.
But it’s something close to it.

Morning, With a Twist

Morning arrives … with Christmas lights.

Not real ones.

Hallucinated ones, wrapped neatly around the bed.

And you know what?
At that point … you take the win. Festive it is.

Bloodwork rolls in.

Also … unremarkable.

The “Aha” Moment

And then—our wonderchild had gone home and gotten into full research mode.

Deep dive. Connecting dots. Asking questions.

And there it is:

Todd’s paresis.

A temporary weakness following a seizure. Often affecting one side. Often confusing as something much bigger—like a stroke.

And suddenly … it makes sense.

A coughing fit.
Reduced oxygen.
A seizure.
Followed by that floppy, disconnected body.

Add a generous layer of Lewy on top … and there you have it.

The ER doc?
More or less agrees. Interested in more testing.

Screech of the Brakes

“I wanna go home.”

And just like that … the plan shifts again.

Because at the end of the day, this isn’t just about medicine.
It’s about autonomy. Comfort. Familiarity.

So we gather our things.

The ER does their part.
We do ours.

Home

Back to our humble abode.

Christmas lights and all.

Welcomed by a very happy three-year-old dog who has absolutely no idea what just unfolded … but is beyond thrilled that his people are back where they belong.

The Truth of It All

Here’s the thing about this life:

Not everything has a clean answer.
Not everything shows up on a scan.
And “unremarkable” doesn’t mean nothing happened.

It just means …

You’re living in the gray.

And in that gray, you learn to trust your instincts.
Lean on your people.
Ask questions.
Advocate hard.

And sometimes …
You even find a little humor in the Christmas lights.

Soft CTA

If you’re walking this path too—whether it’s Lewy body dementia or something just as complex - know this:

You’re not imagining it.
You’re not alone.
And even on the most “unremarkable” days …

What you’re doing matters.