AlzAuthor Eleanor Cooney Reveals a Cautionary Tale of Alzheimer’s in her Memoir “Death in Slow Motion”

Cooney CanvaBy Eleanor Cooney

In the third grade, I was kicked out of show-and-tell for three weeks. I told a story that the teacher, Mrs. Fitz, had specifically asked me not to tell. She knew about it because she heard me blabbing a preview to some of the other kids early that morning. “I don’t think that’s the sort of story to share with the class,” she’d said, shocked.

Mrs. Fitz was a gentle soul, and we loved each other, but my story upset her. She didn’t want me to tell it, and I hardly blame her. It was pretty terrible. Roaming around the woods and river near my house in Connecticut, I’d spotted something snagged in the shallow water: a burlap bag. I dragged it ashore, opened it, and found a drowned dog. I remember what it looked like: A brown-and-white Bassett hound. Even though Mrs. Fitz was shaking her head sadly in the back of the room as I stood in the front and she saw that I was about to spill it, I went ahead anyway. I had to. It’s not that I wasn’t sad for the dog. I was, and still am. But I just had to tell that story.

slowmotionI know that some will find the story I tell in my book Death in Slow Motion shocking and terrible, and they’ll think I shouldn’t have told it. When my mother came down with Alzheimer’s and I undertook (in vain) to save her, a calm dispassionate voice, quite separate from the desperate babble of other voices in my head, whispered: Here’s your next book.

This is not to say my motivations were identical to those of that headline-grabbing eight-year-old. But I still know a good story when it comes along. In this case, though, I wouldn’t be telling the dreadful truth for its mere gratuitous shock value; the subject matter begged for a brutally frank telling, something as pitiless and unladylike as the disease itself. I was, by that time, a seasoned, published novelist, figured I had the “chops” to do the job. My writerly sensibilities tend toward the “noir” anyway, and you can’t get much more “noir” than Alzheimer’s. It was a match.

I started with an article, published in Harper’s magazine. Serendipity led me to an editor at HarperCollins, who said: “I don’t want the book to be just a longer version of the article. I want background and character development. I want to know who your mother was, who you are.”

The possibilities were tantalizing: My mother was a writer, and I’m a writer exactly because she was a writer. We lived in a town right out of Cheever. She’d had three husbands and plenty of lovers. Even without Alzheimer’s shuffling onto the stage, her life, the life my brother and I had because of her, would have been the stuff of literary memoir or a roman à clef. The illness added a classic dimension of tragedy to the story, but it was not the whole story. This is not a “help” or a “how to” book, nor even really an “Alzheimer’s” book, though there’s plenty to be learned about the disease, and about failure, including what I learned the hard, hard way. It’s a cautionary tale, and it’s also the story of a woman, my mother, a superb writer, anything but ordinary, brilliant, beautiful, and sometimes dangerous. I wrote it the way I did because of the writer she was. I wanted to bring her to life so that the reader will know, really know, what’s been lost.

About the Author


Eleanor Cooney is the author of the T’ang Trilogy, historical novels set in 7th- and 8th-century China. This September, her nonfiction memoir, written for Frank Gregory Ford, Midnight in Samarra (Skyhorse, NYC), will be released, the searing account of an intelligence agent and medic who went into Iraq in the ’03 invasion and witnessed high crimes and misdemeanors on the part of his countrymen. She’s completing a new novel, a literary thriller set in the 19th and 21st centuries in Wisconsin, plus a collection of essays, No Country for Old Women. Her work has been published in Harper’s magazine and Mother Jones magazine. She lives in coastal northern California.

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The Tang Trilogy
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The links below are for her long essay “No Country for Old Women,” a new “final chapter” to Death in Slow Motion. The editor divided it into four parts because of its length. They should, of course, be read all together, as one piece. They’re in order here:
https://www.theava.com/archives/84373
https://www.theava.com/archives/84659
https://www.theava.com/archives/84904
https://www.theava.com/archives/85174

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AlzAuthor Rosalys Peel Shares her Alzheimer’s Caregiver Story in “Mike & Me”

FeaturedImageRosalysPeel

By Rosalys Peel

Every two minutes someone in America is diagnosed with Alzheimer’s. Most will face this discouraging illness with their wife, husband or partner at their side. And yet the typical “Alzheimer’s couple” has no idea how to make the most of what lies ahead.

This is the predicament my loving husband Michael and I found ourselves in when we discovered that Mike had been diagnosed with Alzheimer’s. Over 35-plus years of marriage we had always dealt with problems together. But now we were advised to start preparing ourselves for the day when Mike would surely be moved from our home to an outside care facility. We simply weren’t ready to accept that. Continue reading

From the AlzAuthors Blog: Florrie Munat Shares her Lewy Body Caregiving Story in “Be Brave”

Florrie Canva

Love Remains

By Florrie Munat

“Are you going to write about this?” Chuck asked.

I stopped sorting the pile of laundry that a nursing home aide had just left on his bed and turned to look at my husband. Had we not been married for thirty-six years, I might not have known what he was talking about. But in addition to our long marriage, for the last two years I’d been supplying him with words he could no longer remember. So it took me only a few moments to figure out exactly what he meant.

He was referring to the soul-shattering changes that followed his stroke and Lewy body dementia diagnosis. Those changes had ended the chapter of our marriage when we lived together in equal partnership under one roof, and had begun the current chapter in which Chuck was a nursing home resident and I was his daily visitor. He was asking if I was going to write about those changes.

Back when I worked as a librarian and writer, and Chuck taught high school English and then edited a national classroom newspaper, our married life included some major changes (a cross-country move from Connecticut to Washington) as well as some tragedies (the death of his ex-wife, which led to my adopting his three young children).

But those changes seemed simple compared to this one because I felt alone now. I had become the sole repository of many of our once-shared memories, which left me with a profound sense of loss.

By asking this question, Chuck was giving me permission to document and reflect not only on the cataclysmic events of the past two years, but also on however many years lay ahead of us. His question: “Are you going to write about this?” was also a request. If he’d been able to frame it differently, Chuck might have said, “It’s up to you to tell our story now because you’re the only one who can. And others may be helped by knowing what happened to us.”

Four more years passed before we had to say our final goodbyes, and during that time he continued to remind me, “Are you going to write about this?”

be brave cover imageHis question planted the seed that grew into my memoir, Be Brave: A Wife’s Journey Through Caregiving. He even gave me the title on the day he decided to stop eating and drinking and told me to “be brave.”

With the exception of one chapter about our family’s celebration of the Irish New Year shortly after Chuck’s dementia diagnosis, I wrote the first draft of Be Brave after Chuck died in 2009. Then, with the assistance of an insightful developmental editor and a talented book designer, I spent three years rewriting that draft—and in December 2017, Be Brave was finally published. Kirkus Reviews chose it as one of its Top Indie Books of 2017, calling it “a beautiful, richly panoramic book that should reassure caregivers and delight memoir readers.”

While I worked on Be Brave, I was processing my grief by writing and rewriting our story until I found some meaning in those six nursing home years by placing them in the context of our forty-year marriage. This is not to say I discovered a reason why our lives played out the way they did. That remains an unknowable mystery. And if I could have an intact, healthy Chuck back right now, I’d do it in a heartbeat.

But by writing our story, I did find some consolation embedded in our suffering. And that is that no matter how difficult life became during the caregiving years, our love for one another was never in doubt or in danger. In fact, had we not lived through those last six years, we would not have known the depth and magnitude of our love.

Like all good teachers, Chuck asked questions; he didn’t provide the answers. He wanted me to figure out why “writing about this” would be a good idea. I think he knew his question would lead me to the understanding that even after much is taken, much abides. Now his illness is gone. But our love remains.

florrie munatAbout the Author

Florrie Munat is the author of Be Brave: A Wife’s Journey Through Caregiving (2017), a memoir focusing on the years she was a caregiver for her husband Chuck who suffered from Lewy body dementia. Florrie has published several children’s books, articles, stories, and over 150 young adult book reviews. She’s worked as a reference librarian, English teacher, and university press worker. She lives near Seattle, Washington, where she records audiobooks for the Washington Talking Book & Braille Library, and is writing a YA novel and a memoir about grieving. Learn more about Florrie and Be Brave at www.florriemunat.com.

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From the AlzAuthors Blog: Meet Susan Cushman and Her Memoir “Tangles & Plaques”

cushman, susan

By Susan Cushman

My mother, Effie Johnson, was second generation Alzheimer’s. Her mother, Emma Sue (for whom I was named) died from Alzheimer’s when she was 87 years old in 1986, in the same nursing home in Jackson, Mississippi where my mother would spend the final eight years of her life. I remember watching my mother care for “Mamaw” and wondering what our future might bring.

Twenty years later, in 2006, I moved Mother into assisted living. My father had died of cancer in 1998, leaving Mother alone. After eight years of watching her gradual decline and taking on more of her day-to-day responsibilities, especially her finances, I offered first to move her in with us—which she declined—and second to move her to Memphis to an assisted living home. She begged me to let her stay in Jackson, which I did. This meant I would spend the next ten years making the 400-mile round trip to participate in her caregiving, although she did have help, first in assisted living, and finally in a nursing home. Continue reading

From the AlzAuthors Blog: Robyn Hollingworth and “My Mad Dad: The Diary of an Unraveling Mind”

My Mad Dad Canva

By Robyn Hollingworth

About ten years ago my life took a turn. I guess you would say it took a turn for the worse, but really, it just changed. I was in my mid-twenties, living in London and working in fashion. My father  was diagnosed with Alzheimer’s in his early 60s, and within the year, I had moved back to small-town south Wales to help my mum look after him.

His decline was swift, his actions included (at the start) repetition of stories, misplacing items, and accidentally putting on Mum’s cardigan to go to the shops – so far, standard! He had really mellowed and was fairly stoic and philosophical about the illness, often making jokes about his forgetfulness, even though it must have been terrifying for him. Then life took a turn for the “even worse.” Mum was diagnosed with terminal cancer and passed away just three months after I moved home. The effect this had on dad was profound and catastrophic. The seismic shift in the family dynamic tipped him right over the edge. By this point, my older brother was also in residence, but still we couldn’t give dad the level of care he needed. One day he mistook me for a burglar and came at me with a knife. It was at this point that we had to seek more help and Dad went into a care home. Continue reading

From the AlzAuthors Blog: Meet Tracey Lawrence and “Dementia Sucks – A Caregiver’s Journey with Lessons Learned”

Tracey Lawrence Canva

By Tracey S. Lawrence

Dementia SucksOnce upon a time, I was a self-employed graphic arts professional. I designed stuff. I helped clients with their marketing and printing problems. My parents were living it up in southern Florida, and I believed in the Myth of Retirement:

  • Stop working
  • Spend money like you’re drunk
  • Spoil your kids and grandkids
  • Do all the stuff you always dreamed of
  • Eventually, gently, die in your bed at home
  • Cherubs lead you to heaven’s gate
  • Cue heavenly choir

In 2003, I learned about the harsh Reality of Post-Retirement. I went to visit my parents in Florida and realized Dad had been covering up his illnesses. He had a lot of issues. He was 75. My mother, who was 74, was very dependent on him.

After a test gone wrong, my father’s short term memory evaporated, and following many misdiagnoses, I realized he had vascular dementia. He knew it, too, and did not want to live that way. My brother and I supported his wish to avoid prolonging his life. My father died in July 2004 at the age of 76. Continue reading