Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Tuesday, July 28, 2020

I Laughed, Cried and Gasped, All Within the First Chapter of "Jinxed, Laughing in the Face of Alzheimer's" by Marlene Jaxon

This week welcomes Marlene Jaxon, author of Jinxed, Laughing in the Face of Alzheimer's

Marlene shares:
The book’s title was obvious to me right from day one: Jinxed! Laughing in the Face of Alzheimer’s. My mother (whose lifelong nickname was Jinx) and I had laughed together more in the years I spent as her caregiver than during any other time in my adult memory. She got the biggest kick out of the comical voices I used to soothe her fears and prompt her cooperation; my silliness incited her own. Wacky dancing and singing usually ensued. And the family trip we took to Disneyland in her final years – although not memorable to her – was a laugh-filled adventure we’ll never forget. The logistical difficulties of traveling with a dementia patient were by far outweighed by the delight Mom displayed as she enjoyed the wonders of “The Happiest Place on Earth” wearing her pink, princess Minnie Mouse ears. I had a suspicion such lovely caregiver experiences were uncommon, so I enthusiastically committed my energy to writing our story – with no idea what awaited me.

Please read the entire post here.

Wednesday, July 1, 2020

Reverberations, Book of Personal Essays by Marion Agnew

On a summer day in 1992, my mother told how, more than forty years earlier, my then-baby brother broke his leg. Then she told it again. She told the story four times in one hour, in fact.

But my father and I didn’t talk about it. We couldn’t—not yet, for many reasons.
  • Because my mother, a retired mathematics professor who’d earned her PhD when few women even attended undergraduate school, had always identified with her intellect, her ambition, her drive. Without that, who would she be?
  • Because my father’s ability to cope in the day-to-day depended on denying that anything was wrong.
  • But mostly, because of stigma. 
People in my parents’ community were uncomfortable with dementia, which increased my father’s embarrassment and isolation, and my mother’s loneliness.

In 1997, my mother’s family physician finally diagnosed Mom with “probable Alzheimer’s.” Even then, it took months before eventually—carefully, gently, fearfully—my father and I began talking about twin taboo subjects: health and money.

I lived 800 miles away—close enough to visit my parents every couple of months and be free with unsolicited advice, but too far to be of actual help in their daily lives. Each time I left, I wanted to tell myself, “It’s not so bad.” I needed to soothe my guilt at leaving them. But I knew better.

After Mom’s diagnosis, I wrote about what I’d seen and about the disease itself. I tried to make concrete the general words to describe symptoms like “confusion” and “agitation,” by describing my Mom and our interactions.

After her death, I gained some distance from Alzheimer’s. I drew closer to my father. I began to see the time of her illness as only one part of their lives.

And because I was a professional writer, I kept writing. I tried for years to find the right format in which to tell the story—Mom’s, mine, our family’s—and what I’d learned.

At last, I found personal essays, a form that allowed me to write both “in the moment” of Mom’s illness and in my years-later “now,” with the hard-won wisdom I’d acquired as time passed. I still write, often about the sometimes-surprising moments when I miss both of my parents again, years after their deaths. Over the years, I published essays in literary journals. Some received recognition.

At last, I felt ready to rejoin the conversation around Alzheimer’s and other dementias. Signature Editions released my essay collection, Reverberations: a Daughter’s Meditations on Alzheimer’s, in October of 2019.

I hope readers see that people with dementia and their care partners remain people—unique individuals, with lives that include joys both big and small. I hope readers understand that while a family’s emotions can include guilt, anger, and embarrassment, they can also include love.

I hope that somewhere, a reader gives my book to a friend, and they start a conversation. Because talking about Alzheimer’s and dementia is how we create a more understanding community for all of us.

Marion Agnew lives and writes in an office in the municipality of Shuniah in northwestern Ontario, overlooking Lake Superior.

Instagram: marionagnew

Twitter: @shuniahwriter