Alzheimer's Daughter

The Story

Alzheimer’s Daughter introduces the reader to my healthy parents, Ed and Ibby, years before their diagnosis, then recounts painful details as our roles reversed and I became my parents’ parent.

Their disease started as translucent, confused thoughts and ended in a locked memory care unit after a near decade of descent into the opaque world of Alzheimer's.

I began writing Alzheimer’s Daughter one week after my mother's death––when I was stunned, realizing Dad had no memory of her or their 66-year marriage.

I write to pay tribute to the undying spirit at Ed and Ibby's core, and with the hope that the story of their parallel decline might be helpful to others.

Monday, June 27, 2016

Meet Dody Cox, author of Adventures in Mother-Sitting

by Doreen (Dody) Cox

I never planned on becoming my mother’s caregiver, nor, throughout the experience, considered writing a book. In a way, both just happened. I enjoyed my job as group counselor at an alternative school. It wasn’t easy to give up my salary and health benefits, but when my mom asked me to take leave, help her get settled somewhere, I felt a stirring in my gut to hang in there with her. Her mental and physical abilities were in a downward spiral because of vascular dementia—she needed me. In hindsight, I needed her, too. My soul was in its own state of flux.

Adventures in Mother-Sitting is titled “Adventures” because dementia’s unpredictable nature took my mother and me on a tumultuous journey. Grief’s darkest emotions twisted my psyche upside down. Yet intermingled with terrifying, panicky instances, there were funny, endearing connections between us, even sweeter when she regressed into being my child.

After she died, I dealt with grief by turning the experiences (noted in my journal) into a memoir for family and friends. I had to write—within me was a burning desire to feel clearheaded again, to purge the helplessness, hopelessness, despair, and guilt out of me. The rewards came daily. I’d had numerous meltdowns while caring for my mom. After each episode, I wanted out, though not because of her dementia-addled behavior. I wanted to escape deep-seated feelings of inadequacy, disappointment. Discovering the gems embedded in those episodes was restorative. We’d laughed a lot, and I had persevered, not been defeated by dementia’s challenges.

Getting Adventures written honored my mother’s long-held wish, for me to write a book. Afterward, my goal was merely to get through each day—it had only been six months since her death. But an unexpected encounter with a friend who had just published his memoir infused me with purpose: “Tell your story, Dody. Give back by sharing your experience.” My friend was a hospice chaplain.

Grief is a powerful force with which to reckon; its fierceness hit me hard after the memoir was published. Sisters and friends helped me through the darker days. For several years, I couldn’t look at my memoir, relive the experience. Family, friends, and readers agreed that it was good— so, I let it be. Their feedback validated reasons to publish: my story did help others cope with their feelings of inadequacy and guilt, and their comments eased my own lingering bout with unwanted emotions.

Writing became a passion. While writing a short story about endings, titled A Sacred Journey, I learned this: to hone one’s writing skills, be open to feedback from beta readers and other authors. It was exhilarating to feel my short story come alive as I refined passages based on readers’ suggestions.

Thoughts about Adventures began to niggle me (four years later). Reviews confirmed that the story engaged readers well enough, but one review in particular offered suggestions about the writing itself. When I perused the memoir, I found aspects that didn’t measure up to the quality I wanted it to have. A new author friend’s encouragement fired up my enthusiasm.

Doing a revision of Adventures was one of the more meaningful experiences of my life. It was intensely cathartic—I relived every experience I’d had with my mom. Rewriting segments tumbled me back into grief, yet re-experiencing the sweetness embedded in our final years together made the effort worthwhile.

As many know, coping with a loved one’s dementia is extraordinarily challenging, even life-altering. My experience was rewarding in so many ways, yet I’d never have made it without support from family, friends, professional helpers, and hospice staff.


Dody said...

Thanks so much, Jean, for spotlighting our story today. I've learned that I am in great company! So many of us share not only poignant caregiving experiences, but also a burning desire to write openly about them. Best wishes in all of your endeavors.

Jean Lee said...

I love your story, Dody. Thanks for sharing with my readers.