My life as an author has introduced me to a number of wonderful, talented people who also share a love for writing and have ventured into independent publishing. As the author of a novel about Alzheimer’s, I've also been introduced to a number of people who are driven to share their own experience and expertise with this disease via novels, blogs, and memoirs. I recently had the pleasure of meeting Jean L. Lee, author of the newly published memoir Alzheimer’s Daughter. This is a deeply personal, poignant account of Jean’s parents, Ed and Ibby, married 66 years, and suffering Alzheimer’s in the way they did everything: together. Jean has graciously accepted my invitation to visit my blog and share her story about her parents and the book she wrote to celebrate their lifelong devotion to one another. She's given us insight into her writing and publishing process and an excerpt from her book. Welcome to Adventures in Publishing Jean! Tell us, were you born a writer or did it evolve?
Thank you for inviting me to visit your blog, Marianne. I was not born a writer. I spent 22 years as a third grade teacher. Although I’d always loved to read and found it thrilling to foster the love of reading in my students, I wrote only lesson plans. It was a life experience that brought me to writing.
Both of my parents had Alzheimer’s. I lived only one mile from them, but my only sibling, my sister, lived 1,000 miles away. She suggested I keep a journal of things that concerned me about our parents’ health and safety. Whenever we spoke by phone, I’d open the journal and review concerns. The journal allowed us to be proactive rather than react to a crisis.
I only shared my parents’ illness with a handful of friends and coworkers. I remember them telling me I should write a book about this dual decline. I was too busy trying to stay afloat to give any thought to writing about the experience, except in my sister-journal.
However, less than one week after my mother died, while visiting with my dad, he had no memory of Mom or their 66-year marriage. I was stunned and at that point I came to believe my journal could become the core of a book honoring my parents’ love story and documenting their simultaneous decline.
When, why, and how did you start writing?
After my mom died, I began transposing my journal from short-hand, chicken scratch to something legible that others could read and understand. My 30-minute drive to and from school gave me time to think about the events that were happening, putting those events into words, and making beauty out of the words. I bought a voice recorder so I could speak thoughts and phrases while I drove.
Visits to my dad in the locked memory care unit were painful. I would speak my thoughts and feelings into the audio recorder during my drive home and transpose the words to writing later. My writing routine was to write after work, ruminate and think through the words during the night, reread what I’d written as soon as the alarm rang at 5:30 a.m. Head to school and repeat.
Who has been your biggest supporter?
My sister has been my biggest supporter. Alzheimer’s Daughter is our story. Friends, family and coworkers have also spent many hours reading and giving valuable feedback.
I finished, or so I thought, about a year after I began writing.
Did anyone help you along the way?
Yes. I asked a former student who had gone on to become a New York Times bestselling author to read the manuscript. He leveled with me, basically told me it was bad, and needed much work. I knew I needed help to revise it, since I was not trained as a writer. So, I sought out a local critique group led by an experienced editor. They helped me tear apart every facet of the book and rewrite. My editor then took the manuscript to a group of beta readers made up of an emergency medical technician, hospice worker, caregiver, nurse and an elderly woman whose family was trying to move her out of her home. The input from beta readers offered more feedback, which initiated more changes. Now, four years after beginning Alzheimer’s Daughter, with thanks to my former student, my critique group, my editor, and beta readers, I have a published book.
I would advise any writer to join a critique group and always say “Thank you” to people who take time to help you refine your work, even if their input is negative and hard to hear. Negative input will result in positive change. The reader is always right.
How much do you read? Which genres?
If I could envision a perfect day, I’d write all morning, then read throughout the afternoon. I read anything from memoirs to WWII historical fiction to books on writing and social media. I prefer to read in ebook form because I can easily highlight, take notes and reference them in the touch of the screen. Plus, these books take up no room on my bookshelves.
Which authors do you admire and why?
While plodding through my Alzheimer’s journey, I read any personal experiences I could get my hands on. These were obscure titles, written by ordinary people like me. My favorite was So, What is Love? written by Ann B. Keller. The book was so stunning that I even remember her middle initial, though I read it at least seven years ago. The book was Ann’s mother-in-law’s diary about caregiving for her father-in-law who had a form of Alzheimer’s. The book is written in the language of WWII lovers, an antique sugary sweetness, remembering their early love contrasted to their life as an elderly couple with rapidly failing health. The book was so vivid in its details. I remember a scene where the wife has to take her husband into the men’s room in a restaurant to change his adult diaper. From the noise in the stall, other men might have thought there was hanky-panky going on, but in actuality, the wife has pulled out her supplies, a clothespin for her nose, and a DumDum lollipop to keep her husband’s attention while she wrestled her husband, twice her size, into clean pants.
Are you a full time or part-time writer?
I retired from teaching the year my dad died. I knew there was more I wanted to do with my life, even though I loved every day of my teaching career. At the top of my list of new endeavors was being a good granny. At that time, I had one granddaughter and had not been able to spend the time I desired with her. Since then, four more grandchildren have been born. My son and his wife had triplets that turn two years old this spring. They live two hours from me. I’ve been able to help with their care every week since their birth. This is such a blessing in my life and has led to my newest writing experience, Lexi’s Triplets, written through the family mutt’s voice, at the third-fourth grade reading level. After the sadness of writing about my parents and Alzheimer’s, now I giggle while at the keyboard, writing about a pampered pooch’s efforts to figure out misplacement, displacement and a life turned upside down. Once again, life provides writing experiences.
If writing part-time, how do you make time in your life to write?
Finding time to write is difficult. Here’s my secret: I try to save and close my manuscript at a point where my next thought is on the tip of my fingers and I just can’t wait to get back to it. That way, writing becomes my favorite thing to do because I race back to that thought as fast as possible. Also my critique group is helpful because I feel responsibility to submit work. This makes me create new material and stick to a timeline.
What do you love most about writing?
I love to make words convey beauty and emotion. Through writing we touch the hearts of those we would otherwise never come to know.
What is the most important thing you’ve learned about yourself through writing?
I’ve learned I can write! An old dog can be taught new tricks. With a family history of Alzheimer’s always looming, I see writing as new learning. As an old bird, I feel invigorated keeping pace with social media and technology. I’m keeping my brain young.
How have the changes in present day publishing impacted your writing career?
I envisioned Alzheimer’s Daughter to be traditionally published. Big goal, remote possibility. I wasn’t daunted. I spent about a year researching and querying agents and publishers. One agent was interested but told me that unfortunately I had no name or fame with which to sell a memoir, therefore no publisher would take a chance on my work. At that point I began to study CreateSpace and Kindle Direct Publishing. I paid for some interior layout services and a Kindle conversion so that Alzheimer’s Daughter would have a professional look in both paperback and electronic versions. I am extremely happy with the result.
How do you market your work?
Through Twitter I can follow other authors, and people who have an interest in Alzheimer’s. By starting to build a Twitter platform a couple of years before I published, I now have followers to whom I can bring something that might be of interest to them, my story, Alzheimer’s Daughter.
About Alzheimer’s Daughter
What would you do if both parents were diagnosed with Alzheimer’s?
At the time of their diagnosis, Ed Church struggles to his feet, yelling, “How dare you use the A. word with me,” while Ibby wags her finger at the doctor scolding, “Shame on you.”
They’d defend each other, Ibby by asserting, “We’re not leaving our home,” and Ed reassuring, “We’re just fine.”
About his driving Ed defends, “I’m an excellent driver, I’ve never had an accident.”
When their daughter, Rosie, finds dings in Ed’s car, he dismisses, “Someone must have hit me.”
At dinnertime Ibby makes excuses, “Let’s eat out. The stove won’t work.”
After Rosie moves them to assisted living, convinced they are on a second honeymoon, they break the news, “We’ve decided not to have more children.”
In the late stages, they politely shake Rosie’s hand, inquiring, “Now, who are you?”
In Alzheimer’s Daughter, readers journey with Rosie Church from her first suspicions that something is awry to a decade later as she is honored to hold Ed and Ibby’s hands as they draw their last breaths.
An Ordinary Day
A nippy dawn woke my dad, eighty-six-year-old Ed Church. He turned to nuzzle his chin into Mom’s warm neck, but Ibby was already up and dressed. He heard her rattling around the kitchen laying out a breakfast of graham crackers and hot tea at the century-old dining table. Ed pulled on yesterday’s clothes that laid on the bedside chair overnight, splashed water on his face, and ran a dry toothbrush across his teeth.
After they ate, Ibby brushed crumbs from Ed’s lips and held his red, Rivertown Realty jacket from behind as he slowly slipped in one arm at a time. Ed helped Ibby snuggle into the blue, fuzzy cardigan she’d knitted thirty years ago, waiting as she fastened each white pearl button with her arthritic fingers.
Ed smooched Ibby saying, “I love you––see you for lunch.”
Fingertips against the wall to steady himself, he staggered down two concrete steps to the attached garage, then pushed the control to open the overhead door. Ibby tottered along to his red Cadillac handing him his cane, reminding, “Don’t forget to use this.”
Ibby stood in the driveway of the small 1950’s brick, ranch home where they’d lived for forty years, waving while Ed backed out of the driveway without looking and drove two blocks to work.
His Caddy rolled through one stop sign then through a red light before he parked crooked across two spaces at Rivertown Realty. Ed entered his business of sixty years smiling so brightly his eyes squinted, gave an enthusiastic, salute-like wave to his co-workers who were already busily working, bubbling, “Hello, everybody. Great day, isn’t it?” He continued polite niceties but couldn’t remember names. Then he entered his office with his brass nameplate on the door, ‘Edwin Church––President,’ and settled in behind his walnut desk, opening The Wall Street Journal. He appeared busy but glanced up frequently hoping to see familiar clients.
Back at home Ibby waved to her neighbors as they drove to work. On Orchard Lane, their dead-end street, everyone knew everyone. She struggled straightening her stooped spine to pour cracked corn and sunflower seeds into her bird feeder and slowly hobbled to survey her bleak fall yard. She lingered, marveling at the glistening, frozen dew encapsulating late-fall rosebuds. Frost soaked Ibby’s cloth shoes.
Shivers hastened her back into the warm house. She passed through the cluttered kitchen looking for a snack, peeking in the refrigerator packed with leftovers. Some were edible, others spoiled, but Ibby couldn’t tell the difference.
She looked forward to the lunch and dinner she and Ed would eat at the local restaurant as they had nearly every day for the past six months.
Before Ibby settled in on the couch to wait for Ed she heated a cup of tea in the microwave. The stovetop was piled too high with pots and pans, as well as canned and boxed food, to use the teapot. She idled time away watching cardinals, blue jays and yellow finches flitting on the feeder outside the picture window, whistling to mimic their chirps.
From across the street a retired neighbor stopped by, as she did every morning, to say hello. Ibby gave her a hug and a friendly greeting, but couldn’t remember her name.
Before Ibby realized, hours dissolved. She heard the church bells toll twelve at noon and was whistling along with “Amazing Grace” ringing out from the church carillon, when she saw Ed pull in the driveway.
Finding a comb and a tube of lipstick on the dining room table midst cracker crumbs, newspapers and unopened mail, she drew a shaky, wine-colored line on her lips and pulled the comb once through her fine, snow-white hair.
Bundled in her sweater again, Ibby left the house unlocked and gimped to the car. Ed had beeped the horn twice. She knew he was hungry and anxious to eat at the only restaurant in town, Farmers’ Restaurant, located kitty-cornered across the street from Rivertown Realty.
When they arrived, Ed parked the car with the rear edging out into the main intersection beneath the single stoplight in Rivertown. Most residents recognized the red Caddy and knew to avoid the car and its driver.
A balding farmer wearing Carharts tipped his John Deere cap and smiled as the warmth of coffee and frying burgers drifted through the door he held open for the elderly couple.
Ibby with her bent posture said, “Thank you, sir.”
The farmer replied, “You’re welcome, Ibby.”
Ed, while leaning on his cane, clapped the farmer on the back asking, “Did you get your beans harvested?”
“You bet, Ed, and I got a fair price for those beans. Now, you two enjoy your meal.”
Dad paused at the door, waiting as Mom shuffled across the threshold, then followed her and took her hand. Both of them smiled and nodded at familiar faces while making their way to their favorite booth by the west window, facing the town square with a view of Rivertown Realty.
The waitress read and reread the specials, then reminded Ed and Ibby of their favorite meal, a fish dinner to split with extra tartar sauce and two pink lemonades.
Patrons stole glances at Ed and Ibby, winked and whispered to their lunch partners, while Mom and Dad, seated together on one side of the booth with shoulders touching, shared one meal having no idea that on the next day their lives and mine would change completely and forever.
About the Author
Jean Lee lives with her husband in small-town Ohio, twenty minutes from anything. Although she worked full time while her parents were ill, she is now retired after twenty-two years of teaching elementary school. Her children are married with children of their own. Five grandchildren are her greatest blessings. Her latest writing project, Lexi’s Triplets, features her triplet grandchildren, written through the voice of Lexi Lee, the family dog.
Connect with Jean Lee
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