Author Nancy Dafoe describes her family’s navigation through Alzheimer’s disease in her novel: “An Iceberg in Paradise: A Passage Through Alzheimer’s.” She shares her thoughts on identity, and the passage through Alzheimer’s with us today. Learn more.
Identity and Alzheimer’s
French philosopher Rene Descartes once wrote: “Cogito ergo sum,” or, “I think, therefore I am.” Our identity is intrinsically linked to this ability to conceive and remember ideas, and memory is the key component to each step. Unfortunately, those with Alzheimer’s lose both their memories and identities as the disease takes hold. But what does Descartes and the subject of philosophy have to do with Alzheimer’s, you ask? Much more than it would initially appear.
Before my mother, Phyllis Marie Avery, was diagnosed with the disease, she was an avid reader, a highly intelligent deep thinker, a strong personality and a teacher who was intrigued by perceptions and how they are embedded in cultural, societal and personal biases. She had opinions on everything and shared them with all of us.
After she was diagnosed with Alzheimer’s, however, Phyllis Marie could no longer share these things with us. She could not recognize her husband of over 40 years, she could not name the current President of the United States and could not recall simple names or uses of common household items. Secreting notes and novelties away in strange places became commonplace for her, and we would find keys in a cereal box, socks in a desk and knitting needles in her purse, although she had not knitted in forty years.
A Passage Through Alzheimer’s
This monumental loss of connections to people and things, and finally to her own selfhood, did not happen overnight. The progression of her dementia felt gradual, her personality slowly ebbing away, and even her own family did not recognize the specifics of the disease until she was already feeling lost, frightened and angry. Looking back after her death, I realized that my mother’s struggles were very disconnected from what her gestures and words seemed to suggest, one of the many peculiarities of Alzheimer’s.
As her daughter, I kept looking for Phyllis Marie but could not find her, and only later, in reflection, did I begin to consider how hard my mother subconsciously waged her fight for identity during her long battle with the disease. Because Alzheimer’s can manifest into aggressive behavior, this disease can be intensely difficult for caregivers and family members to demonstrate compassion and understanding in dealing with people with this type of dementia. Her dissociated words left her — as well as family and friends — confused or hurt.
Unlike some diseases where a person is unable to speak at all, Alzheimer’s allows afflicted people to continue to produce words, but these words emerge from a place that appears to surprise even the speaker. Occasionally, Mom would come out with whole phrases that seemed appropriate to some situations, but then her next words would be bizarrely random or separated from social boundaries. I slowly realized that my mother existed in a very turbulent realm in which nothing followed coherently. I came to understand how frightened she was although she did not express fear in the way that most people do. Her brain was functioning abnormally as protein fragments called plaques and tangles built up, interfering with normal connectivity. Something that none of us wanted to believe at the time was that Alzheimer’s is not a disease that allows people to recover. Normal brain functioning in people afflicted with Alzheimer’s is permanently altered until death.
For instance, the night before my father fell down the stairs, I had picked him up at the Syracuse airport. He was returning from a brief vacation with my younger sister and her family. Dad did not want to leave his wife even for a few days, but we persuaded him to go. For once, he did not take my mother because she could no longer travel safely or without great difficulty for both of them. In the car heading to their home, I remember thinking that Dad looked fit and tan, very dapper and handsome.
When we came into their kitchen, the home health care aide grabbed her coat and exited quickly. She said to me quietly, “Phyllis is really combative tonight. She hit me with a towel.” At that time, I was not knowledgeable about environmental triggers to swings in mood associated with Alzheimer’s. I shrugged and said good night to her while Dad was working at trying to re-establish his natural affinity for his wife.
Yet for her, this connection was lost. Of course, Phyllis Marie did not recognize him, telling her husband repeatedly that he was an old man. “Get out,” she said loudly and firmly. I had stopped believing that Mom would recognize her Emerson, but Dad never did. I spoke with my father a few more minutes that evening, asked Mom if she wanted some tea, a question to which she did not respond. She looked angrily at me as if she wanted to strike me, and then I left. I drove home feeling relieved, away from tensions produced by proximity to Alzheimer’s, and I thought at the time, to my mother.
A thousand flashes of regret travel through me when I recall that night. If only, I thought later and even now wonder what would have happened if I had stayed longer, maybe made sure she got her medications before heading home? Dad looked fit, but he was tired after traveling and a long day, so it is possible he did not give her the required medications that night. One of the medications, Risperdal, is an anti-psychotic, and I knew that Dad did not like to give it to her because he firmly believed that she was not psychotic even if she was having some delusions. But I did not stay, and my father died as a result of actions that followed. Compounding the tragedy of his death was quiet and inward anger I initially felt toward my mother, blaming her on some sub-conscious level that I did not recognize until much later.
Phyllis Marie loved her husband more than anyone on this planet. Their love was sometimes loud and stormy, but you could tell that these two people would choose each other over all others over and over again. Our history and our interactions with human beings are dependent on memory, however. My father tried holding all of his own, as well as hers, in his heart and head. I believe that right up until his death, he thought he could hang on for both of them until she recovered some thread of their intimacy. Of course, she never did. Those connections were lost in tangles.
Of all the things that Alzheimer’s took from my mother, her loss of identity was cruelest. Without ability to recall recent history, without connections, she was adrift in some unknown sea; violently swinging emotions her only response to an undefined search.
I could not give her back her memories or sense of identity, but I could remember, recalling Phyllis Marie and her intense personality, her deeply felt beliefs and ideation, her pride and integrity, her love for her students and grandchildren. I began to write these things down. At first, I composed poems that involved responses to my own losses. I missed my mother, but after a time, I started to write about her life. I could not return memories to Phyllis Marie, but I could give them a renewed context. I promised her I would remember until I could no longer do so.
We may not be able to cure Alzheimer’s disease yet or lesson the severity of our loss, but we can retain those connections through our own memories, through records we choose to keep and re-story.
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 just published by SUNY Press. It was also a finalist in the 2013 William Faulkner/William Wisdom Creative Writing competition, non-fiction category.
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,” published in March 2013, and a companion book for classroom use, “Writing Creatively: A Guided Journal to Using Literary Devices,” published by Rowman & Littlefield Education in 2014. Excerpts from Dafoe’s fiction are included in the anthology “Lost Orchard,” edited by Jo Pitkin and published by SUNY Press. 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.
Have you read “An Iceberg in Paradise: A Passage Through Alzheimer’s?” What did you enjoy most about the novel? Please share your thoughts with us in the comments below.