Early last year, I was contacted by a lovely woman named Jean Lee. She had come across my book, “Finding Ruth” and wished to extend an invitation to join her group of writers who had banded together to form AlzAuthors, a blog devoted to sharing books on Alzheimer’s with caregivers, families and individuals struggling with the day to day reality of this baffling illness.
Though Alzheimer’s only surfaces toward the end of the book, Jean thought the message I was trying to pass along was powerful: Ask, while you still have the chance.
It wasn’t until I had to go through my mother’s belongings in preparation of her moving into a skilled nursing facility that I realized I didn’t know my mom as a person in her own right. A photo taken of her at nineteen shattered what little I’d known about her life before I came along. It started the journey that led to the book.
In Jean Lee’s case, she knew of her parents’ histories, their strong bond and their love for their daughters. Alzheimer’s snuck into their lives and slowly but insistently began to unravel her parents’ minds.
“Alzheimer’s Daughter” is Jean’s story behind her parents’ love story, a beautifully written account of a love that held fast to the end. It is my pleasure to share Jean Lee’s story with you:
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.
Despite the distance, 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 the 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 the 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 mentioned 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 often willing to come home with the intention of being the bad guy, delivering the bad news, like when we were moving 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 feels 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 60 years, he’d randomly wave at the clouds and say, “I’ll be there soon.”
I told only a hand full 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.
Many people ask me if writing our story has been cathartic. “Are you at peace with what you wrote?” 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 Alzheimer’s Daughter 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 breaths. I believe my parents’ writing is the most beautiful part of the book. In using their words along with my own, I know I pay tribute to them.
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 others through their own journeys.
“Alzheimer’s Daughter” by Jean Lee
After the publication of Alzheimer’s Daughter, Jean connected with other authors of Alzheimer’s books to co-found https://alzauthors.com. Their mission is to eliminate the stigma and the 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.
A year-plus later, the site is now managed by five administrators, and has posted weekly essays from nearly 150 authors with direct links to their books. You can browse the nearly 150 titles about Alzheimer’s and dementia at https://alzauthors.com/bookstore.
Jean has recently published two children’s books, Lexi’s Triplets and Lexi’s Litter of Three about her grandchildren and their beloved pets. She’s busy writing the third book in that series, Julia’s Journey to Her Forever Home.