Opinion

My mother has Alzheimer’s, but she still has so much to teach me

The history of Mother’s Day in the U.S.

Ever wonder what the origin of Mother's Day is? It turns out the idea for the day was created prior to the Civil War in the U.S.
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Ever wonder what the origin of Mother's Day is? It turns out the idea for the day was created prior to the Civil War in the U.S.

On a quiet Sunday afternoon, with trepidation in my heart, I take out the evocative Apple photo book my daughter made of my mother’s life.

We’re in the garden, Mami’s favorite place, and she seems stable, even happy here. In her eyes, the black birds are a beautiful red and blue. She counts more butterflies than there really are. The new feral cat family belongs to her.

It’s now or never for my show-and-tell experiment.

With Alzheimer’s and dementia, there’s no clear road map, only intuition, love, research and biographical information that helps you decipher the moods, the stunted speech, the glassy stare.

Showing her the album could turn out to be a very bad idea — or maybe not.

We’ve gone through another rough patch of delusions — it’s always her mother or her brother dying, and sometimes my brother, and she cries as if she’s suffering new loss.

It is heartbreaking.

I’m out of words to console her and I want so desperately to connect with her, to soothe her, to give her a mooring to hold on to when I’m not around. I think the album might help. Of all the emotions, I try to choose hope.

Mami shrieked with joy when Tanya gave her the book in happier times, bypassing any criticism of the missing accent in the title, not an easy thing for a former teacher to overlook.

In “Habia Una Vez, Recuerdos de Cuba” (Once Upon a Time, Memories of Cuba), her life unfolds in scanned sepia photographs that look new but date back to her childhood in the 1930s. In one, Mami sits in the front row for a primary school group photo. In another, she stands next to her beloved brother, José Antonio, a droopy curl on her forehead, Shirley Temple-style.

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In the long goodbye of Alzheimer’s, every Mother’s Day is another moment to treasure. The writer’s mother in the garden she loves. Fabiola Santiago fsantiago@miamiherald.com

The latter was a favorite of hers, I know. Her brother, who died tragically young from a massive heart attack driving to get his daughter’s birthday cake, was also my father’s best friend. My parents talked about him often and got teary-eyed together.

But to my surprise, she ignores the photo, and in another of her seven brothers and sisters, she only recognizes one. It’s not José Antonio, the one she cries for, but the oldest, Joseito, the successful businessman who paid for her higher education in Matanzas’ teachers college.

She flips by pages too fast and doesn’t say a thing about her mother — but pauses on a school portrait of herself.

“Who is that?” she asks.

“You!” I say.

“I was so beautiful!” she says and starts to now view with more purpose.

“You still are,” I tell her, stroking her hair.

She doesn’t seem to notice the affection.

I brace myself for the reaction when she gets to the 1940s photographs of her dates with my father — her one and only love — in Varadero, Cárdenas, the Bellamar Caves. They stroll streets and the beach with dashing elegance. They ride horses, a motorcycle, a Jeep, and fancy cars. Then comes the 1955 wedding in the cathedral.

This is it. I brace myself for the impact.

But now she’s passing the pages quickly — even those of my birth and my brother’s — with no commentary or reaction, as if this were someone else’s life. Just like the day she thanked me for doing her laundry as if I were not a daughter but a maid to whom she must show gratitude with distant formality.

When she runs out of pages, she hands me back the book and goes back to bird-watching.

I file away the afternoon as a success.

I’ve learned the hard way not to set my expectations high.

But here’s the most surprising part of this journey, this long goodbye of Alzheimer’s I am sharing with the families of some 5.8 million Americans living with the disease: Only when I became a mother myself — and Mami jumped right in to help me — did I feel this close to my mother.

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In the cover story of this photo book, “Once Upon a Time, Memories from Cuba,” the writer’s mother frolics in the beach as a teen. Fabiola Santiago fsantiago@miamiherald.com

How can a terrible disease make me feel even closer when she’s disappearing?

It’s the being there.

Every moment I spend with her is priceless. Every Mother’s Day, every holiday that I still have Mami, is a gift for this daughter.

I hate her suffering, especially when it’s not for a real cause, or when it’s physical, and at those moments I pray for her release.

When she asks me “Where is my mother?” I want to disappear.

“She went to Havana,” I answered the first time. It was something Abuela Ramona used to do to visit another daughter.

She is content and I breathe again.

But it only works once: “Why is she doing this to me? Why did she abandon me?” she cries.

And I pull another trick out of my bag. I give her a little bit of time to feel her feelings, then I deflect her attention to cute photos or videos on my phone.

Every May, I find myself immersed in the ultimate what if: Will this be our last Mother’s Day together?

But Mami’s got this fight.

Last year, when she was refusing to eat or take her medications as prescribed and her health markers were plummeting, it seemed like death was inevitable. She was put in hospice and I was told she had six months to live.

But against the odds she bounced back — and this spring, she turned 90.

Wherever her mind is, with what little there is of memory, she still wants to live. Just like her mother, who suffered from the same disease, also confined in a wheelchair in Cuba, until age 103. Not even the pain of her daughter’s exile killed her.

“I’m Ramona’s daughter,” Mami used say when she felt the need to remind us of her strength by invoking my uncompromising grandmother, whose fierceness was legendary.

“I’m Olga’s daughter and Ramona’s granddaughter,” I tell myself on days when I need coaxing to muster courage.

Mothers are our first teachers — and mine isn’t done yet.

Award-winning columnist Fabiola Santiago has been writing about all things Miami since 1980, when the Mariel boatlift became her first front-page story. A Cuban refugee child of the Freedom Flights, she’s also the author of essays, short fiction, and the novel “Reclaiming Paris.”
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