Should I quit?
Caregivers face a lot of quitting. When to quit parts of your life to care more, when to quit caring for your person by yourself, when to quit hoping…
In the summer of 2021, mom was still aware enough, with enough words left in her vocabulary to express how much she hated having sitters. She wanted us to quit the sitters. But that would mean that we’d quit things that we were tending to. The balance is hard. And most families aren’t as fortunate as we were to have a program that paid for sitters. Some families have to decide when to quit caring for their person at home. That’s the hardest.
When you can’t quit the love you hold for your person, all the other quitting becomes even more challenging, a great wave of challenges.
I wrote this little vignette for an Insecure Writers Support Group competition. It might feel like fiction, but it’s not. I hope it captures some of the struggles that families dealing with Alzheimer’s endure.
©Pennie Nichols. All Rights Reserved. 2023
The Great Wave Metaphor
I take a couple of steps in.
The waves are barely…
…a lap of foam against my toes.
Then another wave. Charging line of water, sand, and fragments cover my feet.
I stand in my own metaphor.
Is this how it begins?
Imperceptible force. A lap of water?
The wave collapses, drawing tiny shells, bits of sand back into the ocean’s mystery.
I take another step.
Do I have a choice?
“I don’t like it!” The words rise like a wave, above the gravel in mom’s throat.
“What?” dad asks, but he knows the answer.
Her voice can be strong, her words solid, especially when she’s angry.
“But you’re not alone. The sitters are with you.”
“I don’t like it!” she repeats, strong, riding this wave of frustration. “Who likes that? Someone always…”
The wave begins to collapse, her words fail her. She waves both hands frantically behind her as she takes a step forward.
“…following you?” I ask.
“Yeah, who likes that?”
“It’s to keep you safe. What if you fall?”
“I don’t like it!”
None of us do.
Do we have a choice?
Sometimes she falls… the waves.
Mom’s still waving a hand behind her, shooing away the sitter who’s already left for the day, who followed her all the day.
“Who likes someone…” her hands brandishing in the air, “even to the bathroom. I guess I took too long and…”
“She came to check on you?” I ask, actively guiding mom away from the collapsing conversation.
“I just want to be with my people.”
“I guess I just need to quit…” dad begins, the riptide pulling him under.
The wave often has its way with us, sucking us in, under.
This is hard.
I take mom by the elbow. She resists a bit. I’m interrupting.
“You’re trying to stop me…”
Yes, I don’t want her to spin dad into an argument he’ll regret, and she’ll forget. Her words will rise, hurtful, then collapse on themselves, rolling back out, forgotten.
“C’mon. Let’s go to my house.”
I take her hand and guide her into our afternoon routine: a walk to my house, the dirty dishes, small chores she can still do, she likes to do.
Mom likes to help, be needed but she struggles against the waves and currents. They batter her small frame. The riptide buckles her knees.
“My legs don’t know what they want to do.”
I’m holding her hand as we walk to my house, tightening my grip against the pull of her legs. Another wave of symptoms? Her legs do their own thing, hurling her forward, sideways, sometimes backwards.
“I’ve got you.”
But do I?
I just want to be with my people, but her people are busy and scattered.
Sometimes I submerge myself before it hits, let the wave wash above me, gently pulling my limbs, swirling my hair.
My children like to dive headfirst into the waves. Total control.
None of us know how to ride it.
This is so hard.
I stand in this metaphor, lurching back as the wave hits me, inching forward with the riptide, waiting for answers.
Mom dove into the disease headfirst.
“I think it started,” she told me one day about four years ago. “I’m having trouble remembering things.”
Bull by the horns, dive into the wave.
We know about waves in our family. We watched helpless as a great wave pulled my dad’s mom under. My shy, small grandmother sunk fast, fighting sitters, swearing, violent then diminished. Then it came after my mom’s mom. My stern, strong grandmother drifted into the waters, lost, uncharacteristically meek and needy. The wave batters the mind, not just the memories, but also the quirks, the personality, broken pieces of shell, unrecognizable, battered into sand.
Mom knew her wave might come.
Standing in the surf, in a family history of waves, a broken shell lodges between my toes.
The insistent thrashing of shells that crack, splinter, and shatter, tiny rivers of foam and sand chasing the waves back to sea.
“I don’t like this!”
It’s hard to move freely in the surges and swells, water battering our control, wearing us down.
“Sometimes we don’t use good words,” mom says as we walk through the field to my house, the sitter long gone, most of the day behind us.
“You had a hard day?” I ask, knowing that she probably hurled ugly words at the sitter earlier.
“I don’t like…” another flourish as she waves her free hand.
I hold her back as her legs pull her forward. We stop a moment to get control. She looks up.
“You have clothes on the line.”
Her voice changes. Laundry on a line, something she can do.
She wants to help, something to do besides battling the waves and swatting away sitters. Something she can do without spying eyes.
“No, but I’ll cook something, and you’ll have more.”
The great wave is coming.
We can all feel it. It’s fast and it’s slow. Some days we all collapse on the foamy sand, exhausted. Other days, we wade into the waters with her.
She’s a little less fierce, but she dives into the wave. “I have this thing, this problem with my head,” she explains.
The great wave will swallow her, cartwheels, legs over head, words foaming, splintering, sinking into the sand.
“The FDA approved a new drug this week.”
But it’s too late for Aduhelm. We can’t stop the great wave. It’s coming. It will take her. And bits of us.
Busy and scattered, we do our best to stand with her in the surf, staring across the surface of the mystery.
It’s coming. She knows it’s coming. She’s known a long time and she dives in headfirst every day to remember.
©Pennie Nichols. All Rights Reserved 2021
Your posts always remind me of my father’s journey with it.
They can be so similar. But always unique.
The wave analogy is so perfect. The really hard thing, besides seeing this horrible illness take our loved ones, is knowing the wave, the bull, whatever you call it, may come for us one day, too. And then what? Will it only be then that we will understand why our loved ones behaved the way they did? Or will we be past understanding by then? May good medicines be found soon. What a soul killer dementia is. Alana ramblinwitham
Truly is a soul sucking disease.