by Jean Lee
Both of my parents were diagnosed with Alzheimer’s on the same day. They were in their mid-eighties. I was the hometown daughter, working full time as a third grade teacher. My only sibling lived 1,000 miles away.
That sounds like a recipe for disaster, but my far-away sister was my greatest support‑‑my therapist by phone. Early on, about five years before our parents’ diagnosis, conversations with my sister usually started with me talking about vague, weird things I was observing. Those concerns became more specific, like rotting food in the refrigerator and hushed stories whispered by neighbors that Mom and Dad had gotten lost on the way home from the mall. During those conversations my sister suggested I begin a journal to document frequencies and specifics. Like a traitorous spy, I kept the journal for two years. It became an integral part of our parents’ diagnosis.
Our parents were a tight team. Never did they tattle or express concern about one another. Mom never said things like, “Your dad glides through stop signs.” Dad never implied Mom couldn’t remember how to start the washer or move clothes to the dryer. They experienced a simultaneous decline, hand in hand, just like they’d faced everything else in life. I couldn’t rely on one to help me make decisions to safeguard the other. Those painful decisions fell to my sister and me. My sister was willing to come home with the intention of being the bad guy, delivering the news when we moved them from their home to a senior care facility. She allowed me to remain the loving caregiver. I can never thank her enough for being there for me, and I know she can never thank me enough for being there for Mom and Dad.
Over the course of five years and three moves, eventually to a locked memory care unit, our parents died peacefully within one year of each other. Mom died first. When I told Dad, he said, “She was just here, saying she’d wait for me in heaven.” In the year following her death, even though he couldn’t remember he’d had a wife of 66 years, he’d randomly wave at the clouds and say, “I’ll be there soon.”
I told only a handful of friends and coworkers about our situation. Those I confided in told me I should write a book about this dual decline. I brushed that off, thinking, I’m drowning, I barely have time to write my lesson plans. However, when I sat with my father only one week after my mother’s death and Dad said, “Where is that woman I admired?” I came to realize our story could help others.
Are you at peace with what you wrote?
Many people ask me if writing our story in Alzheimer’s Daughter has been cathartic. Nothing could be further from the truth. My parents gave me everything in life, and during the Alzheimer’s process, I felt like I took everything from them. So, even after working on my book for four years, I released our personal story with great guilt. I really believed I could be struck by lightning as I pushed the final publish button.
However, in the aftermath, reader’s reviews have brought peace. During the final cleanout of my parent’s home, while trying to sort treasure from trash, I found my parents’ WWII love letters. I used these letters as chapter beginnings. Readers say the passion and devotion in the letters show the glue that held them together until their last breath. I believe my parents’ writing is the most beautiful part of the book. To have used their words along with my own, I know I pay tribute to them.
Does your book help end the silence and stigma of Alzheimer’s and dementia?
As a career educator, I read to learn and solve problems. Reading also guided my way through our Alzheimer’s journey. Each book, each voice, helped strengthen me for difficult times. No story was exactly like mine in that both parents were diagnosed at the same time. So, I added my voice to the choir, writing my story so it may help you through your own journey.
About the Author
After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books, to co-found AlzAuthors.com. Their mission is to eliminate the stigma and silence often accompanying a diagnosis while enabling caregivers and those living with memory impairment to find written resources – memoirs, novels, nonfiction, or blogs – which educate and enlighten.
In slightly over a year, the site is now managed by five administrators, and has posted weekly essays from nearly 150 authors with direct links to their books.
Connect with Jean Lee