A Labour of Love: Caregiving and Identity in Chronic Illness

Author: Annika Nayyar

Surprised, Anders Zorn (c. 1860-1920)

“Where are the eyes of my childhood, those fearful eyes she had thirty years ago, the eyes that made me?”

- Annie Ernaux (1)

Staring into the empty eyes of her mother, author Annie Ernaux is forced to confront a loss before death—one shaped by Alzheimer’s. Her memoir, I Remain in Darkness, explores the devastating impact of dementia on not only her mother, but on herself and those around her. Through journal entries, Ernaux captures the slow role reversal between parent and child in the face of chronic illness, and the overwhelming grief that accompanies it. 

Alzheimer’s is a neurodegenerative disease that begins with the buildup of protein in the form of amyloid plaques and neurofibrillary tangles in the brain, causing cells to die over time (2). It is the most common cause of dementia, an umbrella term for loss of memory, language, problem-solving, and other cognitive abilities that are essential for everyday function (3). As the disease progresses, serious memory loss in Alzheimer’s patients can cause malnutrition, dehydration, infection, and even death. Today, it’s estimated that about 900,000 people are living with Alzheimer’s in France alone (4). At one time, Ernaux’s mother was among them. This written account, spanning her mother’s final three years, illustrates the ways in which chronic disease can disrupt familial relationships, identity, and sense of self.

Dr. Hilde Lindemann defines the tragedy of Alzheimer’s as not only a decline in cognitive processes, but as the gradual unraveling of personhood itself (5). In this case, personhood refers to the bodily expression of thoughts, emotions, desires, and intentions that make up our personalities. She describes a person’s inability to recognize what is funny, kind, or cruel; what statements are questions, assertions, or pleas (5). Any understanding of who they once were becomes hazy, and they soon grow to rely on those around them. Alzheimer’s then, and eventually dementia, are not diseases of one person—but of relation. Care and recognition from others is what preserves our personhood, even if we aren’t in a state of mind to ask for and appreciate it. In I Remain in Darkness, Ernaux bears witness to this identity shift, as her mother struggles to interpret herself and the world around her. She watches her mother forget how to dress, how to eat, how to behave in ways once governed by instinct and dignity. The same words uttered by Ernaux when she wet the bed as a child, spoken once more as her mother begins to do the same. The daughter who once begged her mother to stay with her on the first day of school, now being asked the same on her mother’s first day in a long-term care home. Slowly, the responsibilities of a mother are transferred to the child—to which Ernaux responds with, “The situation is reversed, now she is my little girl. I CANNOT be her mother” (1).

And yet, the reversal of roles in this context is scarcely documented in scholarly work. Research on the relationship between a child living with chronic illness and their parents is much more extensive. What literature does suggest, however, is that chronic illness functions as a powerful agent of change within families—redistributing roles, responsibilities, and authority (6). In short-term illness, these shifts are often understood as temporary. But in chronic and degenerative conditions, the hope of restoration can fade. Duties are gradually, and sometimes abruptly, relinquished by the ill parent and assumed by the child, threatening to deteriorate the relationship between patient and caregiver (6). Ernaux’s memoir exemplifies this destabilization, as she grapples with anger, shame, and “bags of guilt,” when confronted by her mothers’ quickly deteriorating bodily autonomy and independence (1). In doing so, she sheds light on the emotional tensions present in the act of familial caregiving, and in preserving personhood.

I first picked up I Remain in Darkness at a bookstore in London. It was probably my fourth bookstore I had visited in the five days I was there, and I picked it up with no idea who Annie Ernaux was, or what anguish lay within the books’ pages. Despite being a shorter read, her words struck me like a blow to the head, and I can still feel their impact in the back of my mind today. Reading her memoir reminded me that chronic disease—not only Alzheimer’s—is a responsibility carried by family, friends, and those around us. What Ernaux captures so precisely is a form of grief that clinical medicine does not have language for: the loss of a loved one who is still alive. Sons and daughters, like her, bear burdens that are absent in charts and protocols, yet central to the lived reality of care. Small acts like shaving her mothers’ face, helping her put on lipstick, and buying her sweets are all she can do to hold onto the woman she was. I see it in my own family: my mom feeding her dad at his bedside, my dad letting his mom tell the same stories over and over even if he’s tired of hearing them. Perhaps this is the unspoken labour of love that chronic illness demands—choosing to preserve the personhood of our family when they no longer can.

References

1. Ernaux A. I remain in darkness. London, United Kingdom: Fitzcarraldo Editions; 2019.

2. ‌ Mayo Clinic. Alzheimer’s disease [Internet]. Mayo Clinic. Mayo Foundation for Medical Education and Research (MFMER); 2024. Available from: https://www.mayoclinic.org/diseases-conditions/alzheimers-disease/symptoms-causes/syc-20350447

3. ‌Alzheimer's Association. Dementia vs. alzheimer’s disease: What is the difference? [Internet]. Alzheimer’s Association. 2019. Available from: https://www.alz.org/alzheimers-dementia/difference-between-dementia-and-alzheimer-s

4. Alzheimer’s disease | Paris Brain Institute [Internet]. Paris Brain Institute. 2025. Available from: https://parisbraininstitute.org/disease-files/alzheimers-disease

5. Hydén LC, Lindemann H, Brockmeier J, editors. Beyond loss : dementia, identity, personhood. New York: Oxford University Press; 2014. 

6. Bruhn JG. Effects of chronic illness on the family. The Journal of family practice. 1977;4(6):1057.