young hands holding older set of hands

Bioethics Forum Essay

Humanity on the Brink: Narratives of Caregiving and Dementia

“Marcie and I have developed a lifetime teasing and biting romance,” writes retired firefighter Bernie Binning of his beloved wife. “We act out what could be construed as a tired quarreling married couple, always snapping at each other. Some people probably thought we really don’t like each other, but if they could catch the glint in our eyes, people would accept our ability to tease and laugh at life.” Binning’s personal essay, “I Don’t Talk to My Wife Anymore: One Couple’s Account on Dealing with Alzheimer’s,” was published alongside the narratives of other caretakers recently published in the journal Narrative Inquiry in Bioethics.

Faced with a challenging new reality of Marcie’s progressing Alzheimer’s disease, Binning found himself grieving the small joys of his long marriage. “I have, in the last couple of years, curtailed such humor because of our struggle with Alzheimer’s,” Binning continues. “I’m not taking a chance of Marcie turning inward and letting our old comical routines lead her astray. Both of us deal with her Alzheimer’s imagination… Those fun times of ours are gone now.”

Narrative Inquiry in Bioethics sought first-person stories of the challenges, struggles, and joys of providing care for family members or another close person with Alzheimer’s disease and other types of dementia. “In different ways, all the authors of these stories observe and recount details that only a family member could know and understand,” writes commentator Carol Levine. “They create portraits of the person living not only in the present but also in the past, often at the same time.” While thrust into a new role of caregiver, the authors of these narratives continued to navigate a personal history and separate—sometimes contradictory—role of spouse, child, loved one, or family member.

“There is no way that I could have anticipated how caregiving would change not only me, but the relationship between my mother and me,” writes Rina Chittooran. “I couldn’t have predicted how caregiving would result in a complete role reversal between us, in an Asian family where respect for, and obedience towards, one’s elders is expected.  I didn’t know how strange it would feel to suddenly become a mother to my mother, who now bears a greater resemblance to a balky two-year-old than the woman who raised me.” At the same time, Chittooran explains, she has experienced “undeniable joy” in caring for her mother, found in the special closeness, jokes, and favorite activities (walks, sharing meals at favorite restaurants, watching Hallmark movies) that they have cultivated together.

In her commentary, Nancy S. Jecker suggests that the existential lessons contained in each narrative are particular to the type of relationship. Witnessing a spouse’s decline may feel “too close for comfort,” reflecting a personal reconciliation with mortality. A parent, on the other hand, is still a “larger than life” persona to the child who is now an adult caretaker. “Of course, an adult knows, intellectually, that a parent is just human. Yet in some salient ways, they don’t really know,” writes Jecker. “Some ways of knowing are gained only from living through experiences, such as the experience of a parent’s decline or death.”

In Sunnie Songeun We’s narrative, the dynamic between “patient” and “caregiver” is further complicated by the fact that the patient, her father, was abusive. She writes of the disconnect between the popular social narratives about dying fathers, on the one hand, and domestic abusers, on the other. She feels alienated by the rage and guilt that come from taking care of her abusive father. Not all caretaking is done out of love and kindness, but out of a sense of duty when there is simply no one else to do it.  “Like the rest of us, they succumb to disease and list emergency contacts and forget to update wills, forcing entire sets of families to come together at their bedsides when death comes knocking,” she writes. “One would assume that the inevitability of all this is obvious. Yet, after a decade of providing care for a volatile, abusive father with early-onset Alzheimer’s and Parkinson’s disease, I would come to understand that these two narratives—one of domestic abuse and the other of caring for a patient with dementia—would not be tolerated in the same room. People were simply allergic to this mixture.”

Ultimately, within the common theme of dementia, the narratives reveal interpersonal relationships between “caretaker” and “patient” that are as unique and complicated as the individuals involved. For some, like Binning, the responsibility of being a caregiver is compounded by the grief of a long marriage, inalterably changed. For others, like Chittooran, a parent’s decline may reflect a painful role reversal when the adult child adopts a caretaking role. And as We’s narrative shows, assumptions are not useful when it comes to the dynamic between individuals—no two stories of dementia are the same. Jecker writes that the collection of stories “depict humanity on the brink”—with longer life expectancy, more and more people may find themselves in caregiving situations. While it is a responsibility some may accept gladly, caregiving is also stressful, expensive, and disproportionately left up to women. The authors of these narratives, in their honest description of the challenges they have faced, illustrate a dire need for better options and more support for caregivers. The stories show what it looks like to be human under a particular and challenging set of circumstances—the reality, perhaps unsurprisingly, is complicated.

Mary Click is a communications assistant at Washington University School of Medicine in St. Louis.

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  1. In caring for my husband of many years during covid isolation, I’m just incredibly lonely. We used to travel, and go on spontaneous adventures. Now he doesn’t want to leave his familiar surroundings, even for a walk around the yard. The house and yard need work, and I can’t keep up with it. He becomes agitated if anyone comes in to help and undoes whatever was fixed because it “wasn’t done right”.
    He is suspicious and negative. A friend said “why did you marry him?” I didn’t marry this man. The one I married is gone, and I’m here in my cluttered, run-down house with a disagreeable stranger shadowing my every move.
    He’s well cared for, catered to. And I’m through with life by 10 A M.

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