Author Nancy Dafoe describes her navigation through Alzheimer’s and shares her thoughts on her Mother’s disease with us today. Learn more from her story
Yesterday morning, I woke suddenly to the sound of a ringing phone. Because I was startled by what turned out to be yet another political robocall, I recalled part of a dream I had been having:
My mother, Phyllis Marie, looking young and healthy, was standing next to me, and we were talking calmly and warmly. She wore her pretty brown hair down to her shoulders and held back with a single, small barrette. It is exactly how she looked when I was a child. I couldn’t seem to hear her words, but understood they were comforting and intelligent. Her face was beautiful and insightful in response to my own voice which I also could not hear. In that fraction of an instant between sleep and waking, in that brief recollection of R.E.M. stage dreaming, I was transported to a place of loving connection and tranquility. I recognized my mother as the person I had known for most of my life.
Three years earlier, Phyllis Marie Avery died — after an agonizing and protracted battle that included many complications due to Alzheimer’s disease. I was expecting that call, of course, but it still shocked me because the finality of death is always jolting, like being dropped into ice water. Everything is forever changed.
For a long while before her death at the age of 83, Phyllis Marie was lost inside her head. In her later years, she didn’t recognize her family members or friends. Even the tragic death of her beloved husband Emerson could not seem to bring discernment. Nor did she react to the death of her son Emerson, Jr. because her husband and son were lost to her before their deaths.
Much of the time during the last few years of her life, Phyllis Marie did not appear to know her own body. Her disconnect as a result of Alzheimer’s was profound and painful, ugly and isolating on many levels, both for her and her family, as well as her closest friends. After a while, friends leave, and there is just stalwart family, too frequently isolated from even each other with the anxiety and sadness produced by living with this disease in a loved one.
Alzheimer’s is a hard disease. It is difficult for anyone not having apprehended its grotesque reach to appreciate the depth of this calamity when it befalls a family. Our kinship to each other and, finally, to ourselves are ultimately our most important endowments in life. Alzheimer’s strips those fragile networks away until the afflicted mind lies clouded and trapped in frightening confusion.
It would be unfair and inaccurate to present this disease as anything more uplifting, something that allows hope or desire again. Yet it is also unfair to leave others with the idea that we don’t return to the people we love in some way. After Alzheimer’s robs us, we can find our loved ones again, perhaps in a realm beyond earth, but we also find them in our earthy existence.
I have seen my mother since her death as she used to be before the disease. She is not a ghost, and I am not referring to any delusional state. On occasion, she appears to look out at me from a mirror when I smile a certain way and remark out loud, “Oh.” I recognize her grimace of concentration when I am hard at work on an assignment and stop to consider that familiar. In accustomed words, gestures and stories, our loved ones return.
Yesterday in dream, I did not just see my mother again but felt her, and the perception stayed with me for hours after I had awoken. For such a prolonged time during my mother’s illness, I thought I would never feel the way I had once did about my mother. Her changed personality, appearance, responses, reactions were so foreign that it was a battle to remind myself to be patient, kind, and loving to her regardless of the circumstances. I did not always win that fight with myself.
Phyllis Marie had Alzheimer’s for at least 13-16 years. Of course, the date of its onset seems nearly impossible to determine now. Only when I look back and remember confused responses or no response, do I recalculate the possible first instances where she exhibited signs of the disease. By the time my sister-in-law Marilyn and I convinced my deeply resistant father to take her to a doctor for an evaluation, she was already experiencing end-stage dementia.
In the midst of those most difficult years, there were periods when I thought I would never be free of the grip of that disease. It seems to hold onto entire families. Then, she was gone, and I felt the sadness of being robbed of her again.
No remission, no cure yet. But there is the hope of the person you love returning to you through your own memories. Absent dementia or catastrophic accident, our minds have an extraordinary ability to recall, reflect, and reconstruct entire scenes, not simply images from our past.
For now, I hold these fragments of memory in extended, slow breaths. No frightening spirit or ghost, my mother returns in my dreams, and when I wake, the comfort and sensation of her presence lingers. There is no need to update her on the losses of life; tell her that Loretta died and then Lee, just the other day.
We are mother and daughter again, and our deep and tenacious connection is our re-emerging past. Our direction in life does not always move forward. We experience and re-experience life over and over through this tensile but delicate gift of memory.
My mother has returned to me in dreams, memories, reflections and reminiscences; she is beautiful, smart, strong and whole again.
Nancy Avery Dafoe is a published writer and poet, in addition to being an English educator in Central New York. Her cross-genre, memoir and poetry book on dealing with Alzheimer’s in her family, “An Iceberg in Paradise: A Passage through Alzheimer’s,” was published by SUNY Press.
Dafoe has written books for educators on writing instruction, including “Breaking Open the Box: A Guide for Creative Techniques to Improve Academic Writing and Generate Critical Thinking,” and a companion book for classroom use, “Writing Creatively: A Guided Journal to Using Literary Devices.” Dafoe’s essays, fiction, and poetry have won numerous awards, including first place in the New Century Writer and Soul-Making Literary competitions, and her work has appeared in a number of literary magazines and publications.
Residing in Homer, New York, Dafoe lives with her husband Daniel, son Blaise, and dog Bogart. She has two grown daughters, Colette and Nicole, and three young grandsons, Truman, Enzo and Owen.
How have you coped with Alzheimer’s? In which ways have you waited for the disease to leave? Share your stories with us in the comments below.
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