Deep on the surface, we all get it, but we’re also lost.

A goose flew solo over me today, across the sky, northwest to southeast. I hollered up at him “Are you lost?”

I wondered what it must feel like to be a lost goose in a giant blue sky, flying from lake to pond to puddle, looking for your gaggle on the ground.

He flew back over me, east to west.

“Are you lost?” I repeated.

He didn’t answer that time, either.

But this post isn’t about that goose, or any G word like geese, gaggles, or gargoyles. This post is about D words. I’m a little lost in them.

Disease

The D words are all the ones you might expect as we watch the Disease squeeze out the last of mom.

The world around mom continues to spin, some of us spin around her, spinning planets in orbit, or lost geese trying figure out where to swoop in.

Mom’s initial down spiral shocked us and inspired expectations that she consistently disproves, debunks, outwits… Just when we think she’s done with her words, she sits up to tell us “I Don’t want that right now.” We thought she needed us to feed her until she pushed our hands away —”I got it”— and scooped up her own noodles.

So we huddle around her, like a gaggle of geese at a pond, noisy, sometimes a nuisance, making sure we’re there for the help she does need, listening for when to back off.

Outside, the world continues to spin.

Spring is creeping into the Louisiana winter. We’re lured to the open air, drawn to possibilities. I itch for seeds and soil, collect furniture to rescue and refinish, envision big projects involving power tools, paint, and trips to the hardware store. I’m sure dad has similar spring inclinations.

But it’s different this year. Mom’s not here to collude with us.

Decline

Her Decline is definite. Sure, she surprises us, and, boy howdy, Don’t mistake her condition for weakness. She’s not weak. She can pull your thumb off your hand if you’re not careful.

Doctors have beat on this Disease for decades, demanding clues, answers, solutions, but it’s still a mystery, a unique fingerprint on each victim.

We know the buildup on the hippocampus changed the way mom’s brain fires instructions through other parts of her body, but the misfires Don’t manifest the same way they did for her mom, who walked until her heart gave out, or my dad’s mom, whose body curled into the disease.

Mom surprises us every week with something we thought she couldn’t do. Feeding herself, taking a couple of baby steps between the hospital bed and the wheelchair.

I Don’t think she’ll walk again, but I could be wrong.

Diminish

I say this confidently though: mom won’t help me till the garden this spring. Even if I wheel her out to tilled rows, I Don’t think she could sort out what to do with the seeds.

I’m glad she surprises us, I’m here for it, but I know her CV list of skills has Diminished. She can no longer list furniture stripper on her resume. She won’t help me strip her dad’s old end tables this spring.

Still, her upturns confuse me…

Don’t

… so I tell myself Don’t.

Don’t assume you know what she can do. Don’t assume you know what she’d want.

We know what we know and we Don’t know a lot. Mom has Declined beyond some tasks, and she’s Diminishing daily, but there is no reliable punch list for loss due to Alzheimer’s.

Doubt

I have said more than once, “She wouldn’t want to live like this,” but what do I know? I’ve prayed for her peace, and guess what. She seems to be more at peace lately. That part of her that mistook us for the Disease has faded. Her moods are better. Is this peace? Maybe.

I’ve uttered the strangest —surreal sometimes!— prayers of my life these last few months. But who am I to know what to pray for? I’m riddled, lost like that goose.

I wonder if he found his gaggle. Lord knows, I should connect with mine.

My surreal prayers have shifted from swift, peaceful release, to the peaceful, perfect timing SHE wants.

Please tell me what to ask for. I.Don’t.know.

Death

Inevitable. Not just for mom. All of our tickets will be punched at some point, and there’s no guarantees that mom won’t outlive some of us.

The waiting is weird. We Don’t want Death, but we Don’t want her to linger in the liminal too long.

Surely she’s exhausted. We see her bobbing, Diminishing, rebounding, pulled Deep, then popping up to the surface.

Against all odds?

Or maybe this is the cruelty of this Disease that scientists Don’t study, the part that nurses and sitters tend to, the part that makes every single caretaker take a good hard look at their own mortality.

Divine

I’ve certainly looked at mine. And my dad’s, and my brother’s, and my children’s. My dogs’. My cat’s. And that goose! Did he find his way or drop dead searching?

The thing is, during this turned-inside-out time, this lost time in a giant blue sky, looking for gaggles and answers, ponds and meaning, I’ve experienced some of the closest encounters with Divine. Moments with mom, with family, alone. Moments of clarity, heart warmth, knowing. Dewy daffodils and mom’s delight when we saw the first blooms.

It feels like a workout, seven periods gym class, the jog around the campus, the dead sprints and training (Disease, Decline, Diminish, Doubt, Don’t, Death… I didn’t even mention Dementia!) to get to Divine. Exhausting.

Deep on the Surface

I suppose I’m in better shape for something. Facing my own set of Ds? Preparing for my own Death?

Mostly, I’m in better shape for Living. I might need a moment. We have a lot on our plate. But on the other side, Deep on the surface, I know I’ll be better. Better at being. Better at being whatever I am to the person I’m with in the moment.

I feel confident that the Goose found his Gaggle. He’s so Grateful and he’s there for all the noise and the fuss and the poop that comes with it.

©Pennie Nichols. All Rights Reserved. 2022