Alzheimer's Daughter, by Jean Lee

My mom and dad were both diagnosed with Alzheimer’s on the same day. Mom declined for eight years and Dad for nine, until they died. Our journey became my memoir, Alzheimer's Daughter, the story of preserving their dignity while weighing difficult options to ensure their safety.

Although my parents did not live with me, I lived one mile from them in rural Ohio and became their primary caregiver and decision-maker.

My only sibling, a sister, lived 1,000 miles away in Florida. Reading those words, you might expect conflict, but there was none. My sister and I grew a deeper relationship during our parents’ illness. She was my total support, my therapist by phone. She was willing to take on the tough role of ‘bad cop’ so I could remain the loving caregiver.

Prior to the diagnosis, we observed our parents’ progressive mental regression for about three years. When I talked with my sister by phone, I’d mention my concerns. She encouraged me to begin a journal of oddities. I hid the notebook in the bottom of my kitchen junk drawer, regarding it as tattling—the writings of a traitor.

While my parents were ill, I was a third grade teacher, loving my job and the children I taught. My job became my refuge, my normalcy.

I confided with only a handful of colleagues. They were astonished by the dual decline of both parents and told me I should write a book. I struggled to stay afloat and barely had time to write lesson plans. Their comments went in one ear and out the other.

Until...

A conversation with my father one week after my mom died changed everything. I was stunned to realize he had no memory of the woman he adored, or their 66-year marriage. At that point I became a writer. I knew this story had to be told.

I fleshed out the chicken scratched, sister-journal to include my feelings as we sought a diagnosis, moved our parents out of their life-long home and suffered the guilt of stripping everything from the ones who had provided us everything.

The journal formed the middle part of Alzheimer’s Daughter, bookended by a beginning chapter about our parents’ relationship and the way they raised us, ending with a series of three moves, eventually to a locked memory care unit where they died with my sister and I holding their hands.

Added to the story as chapter beginnings are Mom and Dad’s WWII love letters, which I found as I cleaned out their house. These letters contrast their love and devotion—their vows for better or worse, in sickness and health—with their inability to care for each other as the disease shattered them both.

In my opinion, these letters are the most beautiful part of the book.

The book concludes with my letter to them.

I hope Alzheimer’s Daughter honors my parents, their positive attitude, and their love story.

I spent three years writing the book and a year agonizing about whether it should remain a private, family story, or become public. While pushing the final “publish” button, I thought I might be struck by lightning as punishment for revealing something so intimate. Now a year later, people I’ve never met have helped me heal by telling me through reviews that the story has helped them cope.

—Jean Lee