Alzheimer's Disease Center
University of California, Davis

The Family Connection
Summer 1998

REVIEW

Alzheimer's Disease in Literature
by: Robin Ketelle, R.N., M.S.
UC Davis Alzheimer's Disease Center

In Barbara Kingsolver's novel, "Animal Dreams", the main character Codi Noline simultaneously discovers the power of memory and the tragedy of its loss when she is confronted with her father's worsening Alzheimer's disease and with her own painful childhood memories. This is one of three excellent literary works I will discuss and encourage you to read.

Alzheimer's disease and other dementias have been widely written about in recent years. The National Alzheimer's Library and Resource Center, (312) 335-9602, has a list of novels, plays, poetry and short stories which focus on Alzheimer's disease.

Kingsolver's "Animal Dreams", John Daniel's memoir, "Looking After", and Linda Grant's essay (appearing in Issue #60 of Granta magazine), examine dementia from the adult child's perspective.

Because they are non-technical writers, the three authors can describe the common symptoms of dementia in ways not normally seen in textbooks or journals. The raw emotions of grief, embarrassment and fear come through eloquently. Each meld their stories of parent, child and dementia into the greater story of their lives, both past and present.

John Daniel's book reminisces about his childhood and early life, describing his mother's more recent decline and death from Alzheimer's disease. He carefully and sensitively describes the symptoms of dementia: Apathy is as if "something in her had washed out, some canyon formed between desire and action", and delusions: "my mother was wrong in the particular instance and right in the general fact." He describes himself as a caregiver, "having all the symptoms of a stressed out housewife." Ultimately he finds "the diminishment that her dementia brought, though a very real impairment, allowed at the same time an enlargement of her spirit. It may have allowed, in a way she didn't foresee and wouldn't have chosen, a culmination of her spiritual quest." He sees his mother moving closer to a different kind of memory, one that allows her to see life in a less complicated way. Because of her dementia, she was able to shed the "conventional certainties we carry in common in our ordinary lives" which "are themselves a forgetting of the primary world, the world we knew best as children and are in danger of never knowing again."

In a different way, Barbara Kingsolver probes the parent-child relationship and the flip-flop it can undergo when a parent has Alzheimer's disease. When Codi Noline's father, a physician, tells her he has Alzheimer's disease and then asks her not to tell anyone else, she things, " I knew it wouldn't matter what came next, whether I said "Okay" or "Why" or "That's not fair", which is what I mainly felt. Dr. Noline had stopped talking, there being nothing more to say, in his opinion." Later she reflects: "For the first time in my life then, and just for a few seconds, I was able to see the Doc as someone I felt sorry for. ‡I hadn't thought before about how self-sufficiency could turn on you in old age or sickness. The captain was going down with the ship. He was just a man, becoming a child."

Linda Grant's mother, diagnosed with Multi-Infarct Dementia, has "tiny silent strokes…mowing down her recollections of what she said half a minute ago." "?he looks normal, like a sweet little old lady, and people start up conversations with her which proceed as they expected until a question answered a moment before would be asked again …and then asked and asked and asked until you lost your patience because you thought you had been entering a dialogue which had rules of exchange, and it tuned out that what you were really talking to was an animate brick wall." Grant chronicles both the pain and humor of her mother's downward spiral to the point of needing placement in a nursing home: "I saw that my mother, who for so long I thought had made my life a misery, was gone. That I was never going to win the great argument with her about the kind of daughter she expected me to be, for my adversary had left the field. In her place was a bewildered infant whom the world insisted on treating as an adult with no one to protect her. 'My mother, my child'."

As the affects of dementia on parent-child relationships are examined by these skillful writers with widely varying styles, remarkable similarities emerge. The frame that dementia forms around the lives of these parents and children forces a careful look at each character's essential humanity. The essence of past and present, the essence of memory itself, is a theme critical not only to those who suffer from dementia, but those who are left behind.

I encourage you to read these selections. Let me know if you have read anything you would like to share with others. My goal in writing this review is to establish an informal Alzheimer's disease reading group. There may be a need for such a group in the caregiver/support group community. Any feedback on these ideas would be greatly appreciated. E-mail me at: rsketelle@ucdavis.edu, or call (925) 372-2470.

Happy reading!