Those Life Decisions … Again
“Hello?”
“Mrs. Shearer, it’s Dr. Von Schmutz…”
(Okay—not her real name, but close enough for this story!)
“Is your husband with you?”
And just like that, the world shifts.
These types of calls are unfortunately familiar. When you’re the primary caregiver, advocate, and point of contact for all things medical, your phone can ring with a frequency that could rival a 911 dispatch center.
“Of course, he’s here. How can I help you?”
The calm voice of someone who has been here before.
First the gut punch, then the breath …
The CT scan had just been done that morning—one more diagnostic in the long saga of abdominal pain that refused to let up. We had been hopeful it was nothing. Or at least something treatable at home.
What we heard instead?
“I really need you to get him to an emergency room as soon as possible. I’ve reached out to your physician, Dr. Swifty…”
(Yes, the name still makes me giggle inappropriately. IYKYK.)
A new term entered our vocabulary that day: abscess with perforation.
I don’t care how long you’ve been navigating medical mysteries—those words land like a gut punch (yep, pun absolutely intended). It’s scary. Unfamiliar. Potentially part of the big, messy puzzle that is LBD… or maybe something entirely unrelated. Either way, it’s one more thing. One more layer. One more round of “now what?”
Thankfully, our ever-reliable Dr. Swifty coordinated a direct admit, saving us from the chaos and sensory overload of the emergency room. And if you’ve ever tried to wrangle someone with Lewy body dementia into a packed, noisy ER full of fluorescent lights, echoing beeps, and impatient chaos, you know what a gift that was.
So as we sat waiting in the parking lot of the hospital, in that all-too-familiar pause between “real life” and “hospital life”, we went through the checklist like it was second nature:
DNR in hand? ✔️
Moose, the furry child, taken care of? ✔️
Call the kids now or later? ✔️✔️✔️
Talk through the “what-ifs” of potential surgery? ✔️
It’s sobering. And yet, weirdly practical. Because this is what life looks like when you’re navigating a chronic illness with sudden acute flare-ups that ma be new and unknown. You plan, you pivot, and you do it all again.
Once admitted, the flurry began.
Labs, IVs, paperwork, medication lists, vitals.
We met Liz, our daytime nurse, who was a kind mix of compassion and efficiency—a combo I now rate on a scale of 1 to 10.
And of course, the dreaded “no food until further notice” announcement.
Nothing puts my sweet husband in a fantastic mood quite like being told he can’t eat.
But what really grinds my gears every single time?
The medication debacle.
He takes twelve different medications daily to manage a smorgasbord of symptoms—emotional, cognitive, neurological, digestive—you name it. And every hospital stay brings the same circus:
“We can’t use your prescriptions.”
“We don’t carry that one here.”
“Let’s just skip it for now.”
Wait… what?
I get it—some meds aren’t absolutely critical. But others? They’re the very foundation of his emotional and cognitive well-being. The difference between calm and combative. Or lucid and lost. You’d think a hospital would have better systems in place for people who don’t arrive with textbook, one-line medical charts.
And when I hear, “Let’s not worry about that right now…”
My caregiver brain turns into a mama bear.
“Do you want to ready the tranquilizer gun for when he doesn’t get a medication that helps him be pleasant and cooperative instead of cranky and combative?”
That usually gets a reaction.
Back to the hospital room…
The adrenaline slows. The activity quiets. The bed alarm is turned on as he’s considered a “fall risk” with syncope.
And we settle in for the night.
I’m curled up beside him on a too-small hospital bed, snuggled into my safety “spot” under his arm like we’re bracing for impact. Oops! Turn off the bed alarm so I can get up without alerting literally everyone on the floor.
We’re both exhausted. Both scared.
What will tomorrow bring? Surgery? Recovery? More complications?
This is the part no one prepares you for.
The in-between.
The part where love is fierce and fear is louder than you want to admit.
But here we are—together. Again. Making those life decisions again.
With grace, grit, and a little dark humor to survive the ride.