The carnival maze of Alzheimer's and the deep, thundering ache that remains
A guest post by Substacker Lis about when your well-being toolkit isn't enough
Hey friends, I’m delighted to introduce you to a fairly new Substacker Lis from Savor Life Studio. She has graciously offered her heart-rending story of loving her mother through Alzheimer’s. Lis did a fantastic job of opening up about this specific type of grief that often shifts as the disease progresses, beginning with one type of felt loss at the onset of diagnosis, then changing as our loved one continues to deteriorate neurologically, and finally the compounded grief when that person dies.
I found Lis’s gentle nature a comfort and a guide through her story, and I hope you will enter into it with your own version of compassion and empathy. Though Alzheimer’s is well known this day and age, we don’t often hear particular stories about how life-altering it is for the family members and friends who find their loved ones slipping away day by day, moment by moment.
Please join me in welcoming Lis, and I hope you will check out her Substack, follow and/or subscribe to her, and share this post with others who may need her words and message today. As always, I trust you will be gracious and generous in your comments of affirmation and love for her.
When Alzheimer’s Comes Quietly Knocking
Recognizing the early signs of Alzheimer’s is a lot like playing hide-and-seek in the dark. Movements are hidden in the shadows, and detection is, at best, elusive.
It wasn’t until a dear and life-long friend called and asked, “When was the last time you visited your mom?” that my life was catapulted into a maze with long, harrowing passageways, doors to unknown and exhausting lands—and absolutely zero quick exits.
“I spent time with her two months ago, and we talk almost daily,” I replied.
“Yes, but have you spent time with her?” they asked again.
And so, a grandmother-daughter-granddaughter trip was born.
A Weekend in the Cascades
In October of 2019, my daughter and I scooped Grandma up and headed for a Bavarian-style village nestled in the Cascade Mountains of central Washington State. The outing was lovely, and The Mama (as I often called my mother later in life) rarely met an adventure that didn’t meet her approval.
I often wondered if her lust for movement was borne out of the fourteen times she was tasked with moving during childhood—but I’ll never know.
Throughout the weekend, it became evident The Mama repeated her words more regularly and was more fragile than I had realized.
A decision was made. At 84, Mom moved into assisted living, just an hour from my home.
She quickly let me know that the sheer thought of being held captive with other “inmates” was reason enough to contemplate the black pill—but she said she’d give the assisted care center a try.
A New Chapter
With her nearby, I set up a visiting schedule, which became my steady compass for the next four years. We’d spend two to three afternoons a week at the water’s edge, enjoying the view—grateful for life’s simplest, sweetest gifts.
With an official early Alzheimer’s diagnosis in hand,
slowly,
gradually,
painfully,
The Mama began losing pieces of herself.
And the most surprising thing?
She knew.
She was acutely aware her brain was no longer working as it should.
And she looked upon that fact as though she were standing within a carnival maze —
bewildered, wondering, and unable to find her way toward the light.
Five Layers of Loving and Letting Go
The losses came in waves, like a childhood diorama of an exploding volcano.
Each one had its distinct characteristics:
1. Gratitude
The base of it all—deep, soul-filling gratitude. This was an unexpected and welcome gift of epic proportions.
It spilled over into most days and saved the other layers from exploding into chaos.
2. Next came the books. So. Many. Books.
They lined the floors, crammed the shelves, and spilled from boxes—everywhere.
The Mama devoured novels like they were Sunday dinner back on the farm in the days of my youth. And as time passed, The Mama read the same stories four or five times.
And still—they brought her joy.
3. Memory Loss
This layer was trickier.
Some days, she’d call and ask me to come early the next morning—to help her move. She believed the caregiver was coming home, and the apartment no longer belonged to her.
After long reassurances, gentle explanations, and feeling certain we were back to a calm and gentle space, she’d say, “So, when are you getting here tomorrow to move me?”
Repetition set in like an unwanted case of chickenpox.
“Would you like a bite of ice cream?” she’d ask—five times in twenty minutes.
I’d smile and say, “No, thank you. I’m happy to watch you enjoy your treat.”
4. Frustration and Anger
Some days were just...hard.
At a medical visit, I gently stepped in to help clarify answers, and she snapped—loudly—“It’s my fucking knee, and I can answer the questions.”
These days, I’d cry in the car, drawing on every tool in my well-being kit to stay grounded.
5. Ready to Let Go
Then came the darkest days. Days when The Mama said her time was close.
Every. Single. Time—I believed her.
Tears flowed. I braced myself for a goodbye. And then a new day would dawn, and all of it—those thoughts, the sadness, the proclamations—would vanish like raindrops falling into an abyss.
Unexpected Pain, Unexpected Gifts
As the seventh of eight children and my mother’s Power of Attorney, I took on the responsibility of making care decisions. This role brought more heartbreak than I ever imagined—and it changed me forever.
It felt like I was under a microscope of epic proportions, each sibling peering through their own lens, shaped by memory, emotion, and history.
I turned to gratitude, positivity, mindfulness—even meditation. I found a brilliant counselor who taught me about healthy boundaries and offered more compassion than I thought possible.
And all the while, there were countless beautiful and treasured moments with The Mama:
Throwing our heads back in laughter.
Moments of silence.
Moments of presence.
Moments without thought of yesterday or tomorrow.
Her Final Gift
The day arrived when Mama’s mind, body, and spirit were losing ground, and one more trip to the hospital was feeling like one too many. It was a gut-wrenching three weeks that included two hospitals and one minor surgery. And it happened to land smack in the middle of guitar camp—a treasured week I had long awaited for myself.
In her fragile state, The Mama insisted: “You must go to camp.” Music always pulsed through The Mama’s veins, so I went.
My guitar friends and I performed a heartwarming rendition of Amazing Grace on student concert night. I sent the song over the airwaves straight to her apartment.
My mom’s caregiver held the phone to her ear, and I felt her smiling through the distance.
After camp, I spent the next four days bedside in my mom’s apartment, along with several of my siblings who had been keeping vigil for many days. There were guitar singalongs, harrowing stretches of painful silence, and sleep-deprived realities of raw emotions.
On August 26, 2024, at 8:00 a.m., The Mama—who had birthed eight children—passed peacefully. It was not lost on me that she died during the eighth month of the calendar year.
She would have smiled at the quiet synchronicity of it all.
What I Know Now
I am not the same person I was five years ago.
I’ve learned that someone’s opinion of me is just that—an opinion. What I do with it is entirely up to me.
I’ve learned that healthy boundaries are essential. Asking for what you need isn’t a life sentence—it’s a life healer.
Most of all, I’ve embraced the beauty of the present moment. That’s part of why I created Savor Life Studio, because all we truly have are moments. And it’s up to us to make the most of Every. Single. One.
And yes—it’s okay to feel every emotion when it arrives at your doorstep.
Lastly, I felt deep and abiding gratitude that, in those final months of her journey, my mom clung to all that still mattered. She reached out to her loved ones with knowing, with understanding, and with the kind of love only a mother knows how to give.
It was a gift of epic proportions.
And I hope she’s relaxing now—smiling in the knowing that she got ’er done, and then some. And maybe, just maybe, she’s sitting at the water’s edge somewhere, enjoying a McDonald’s coffee and a soft serve vanilla cone.
Ever present Ache
And a deep, thundering ache remains—
for all who are ever present
as Alzheimer’s steals pieces of heart and soul
too swiftly,
leaving behind a hurricane
of sorrow and splintered memory.
My Mantra Now
My mantra is simple these days: Lead with kindness and I will follow.
May kindness follow you on your journey.
May peace and joy be your close companions.
May you always take care of yourself so that you can be present for those who need you most.
With love,
Lis
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Lis, this is beautiful and achingly hard. Thank you for sharing. I've heard Alzheimers refered to as "the long goodbye". How wonderful that your life long friend gave you the opportunity to realise the need to "spend time with" and so see the reality of your Mum that likely wasn't yet evident on the phone. How beautiful that you took steps to enter into that long goodbye with your Mum, as difficult as it must have been. Your writing is great. I felt you believing your Mum Every. Single. Time. Thank you again for sharing and I love your call to kindness 😊
In some ways, I was blessed not to worry about ALZ with my parents as they passed so young. I worked in a nursing home with a lot of ALZ and cognitive decline patients who had no one left to be able to care about them let alone for them. But as I grow older and notice "sundown syndrome", and many of my friends' parents are in the throughs of this I try to support them as I can.