The Dark Psychology of Caregiving (article)

It’s always interesting to know why authors write on certain topics, but it’s even more intriguing to know why they don’t write on other topics. The question becomes more fascinating when a certain topic is of enormous significance to most people—indeed, nearly everyone, sooner or later—yet remains largely ignored by scholars. That topic is caregiving. Not that there is total silence. One can’t pick up an issue of AARP Bulletin, AARP The Magazine, Parade, or Reader’s Digest, not to mention more specialized print and online publications such as Today’s Caregiver, Caregiver Solutions, or Provider, without reading about the latest novel, film, or memoir about caregiving. Best-selling movies like Away from Her (2006), starring a ravishing Julie Christie, and Still Alice (2014), starring a radiant Julianne Moore, depict the caregiver’s struggle with a spouse suffering from Alzheimer’s disease. How-to books on caregiving have become a growth industry. Professional journals regularly publish articles on caregiving, offering clinical advice to physicians, nurses, and mental health professionals. Yet when I decided to write a scholarly book on the art of caregiving in fiction, film, and memoir and began researching the subject, I discovered, to my astonishment, that my book would be the first. Why the scholarly silence?

To understand this question, one must uncover the hidden motives and agendas behind the scholarship. As with nearly all of my books, the reasons for writing a book on caregiving were deeply personal. I was the main caregiver for my wife Barbara for the nearly 20 months she struggled valiantly with pancreatic cancer. She died at home on April 5, 2004, at age 57. Although I hadn’t thought about penning a book about Barbara while she was still alive, immediately after her death I started to write about our 35-year marriage. Dying to Teach: A Memoir of Love, Loss, and Learning was published by SUNY Press in 2007. It will always be my most important book. I wanted to honor Barbara’s beautiful memory and bring her back to life in the only way a writer can: through words. Writing became a sacred death ritual for me, a paradox in that I do not believe in God or an afterlife. After I completed the book, I wrote others about related subjects: Death in the

Page 165

Classroom: Writing about Love and Loss (2009), Companionship in Grief (2010), Death Education in the Writing Classroom (2012), Dying in Character: Memoirs on the End of Life (2012), and Writing Widowhood: The Landscapes of Bereavement (2015). These books were admittedly on rending topics, but they were not depressing to write nor, I hope, depressing to read. Writing helped me concentrate all of my energy on a single activity, staving off depression.

Agreeing with the old adage, “write on what you know best,” I then decided to write a literary and cultural study of caregiving in the arts. The fictional stories include classics such as Leo Tolstoy’s The Death of Ivan Ilyich (1886) and Edith Wharton’s Ethan Frome (1911). Caregiving appears in Ingmar Bergman’s spectral masterpiece, Persona (1966), and in Michael Haneke’s heart-wrenching film Amour (2012). Most personal accounts of caregiving appear in memoirs. The British literary critic John Bayley wrote three memoirs about caring for his wife, the distinguished novelist Iris Murdoch, who suffered from Alzheimer’s disease: Elegy for Iris (1998), Iris and Her Friends: A Memoir of Memory and Desire (1999), and Widower’s House:A Study in Bereavement, or How Margot and Mella Forced Me to Flee My Home (2001). Other caregiving memoirs include Mary Gordon’s Circling My Mother (2007) and Margaret Morganroth Gullette’s Ending Ageism, or How Not to Shoot Old People (2017)—a title that suggests the potential for violence in caregiving. My book—The Art of Caregiving in Fiction, Film, and Memoir—released in October 2020, published by Bloomsbury Academic.

There are many reasons for the scholarly silence. To begin with, most caregivers are too exhausted, physically and mentally, to write about their experiences while they are actively caring for another person. Fatigue, stress, and isolation inevitably accompany caregiving. Most people do not wish to return to these experiences after caregiving ends, often with the care-receiver’s death. In a chapter aptly titled “Relentless Self-Care,” Irene Renzenbrink likens the caregiver to a “wounded healer,” a term coined by the Catholic priest Henri Nouwen. Renzenbrink quotes a comment expressed in 1987 by Robert Fulton, the founder of the Center for Death Education and Counseling at the University of Minnesota. “The time might not be too distant when signs are posted over the entrance to terminal care wards that read, The Surgeon General of the United States has determined that the care of the terminally ill

Page 166

 may be detrimental to your health” (Living with Dying, edited by Berzoff and Silverman, 2004, 848). Many clinical studies confirm that caregiving is dangerous, sometimes deadly. Caregivers are much more likely to suffer from depression than non-caregivers, more likely to have chronic health problems, and more likely to have damaged chromosomes predictive of shortened lives. Elderly spousal caregivers have much higher morbidity risks than non-caregivers.

Another reason for scholarly silence is resistance. Caregiving evokes many of the unruly emotions surrounding aging, illness, and death—partly because care-receivers are often close to death and partly because the caregivers themselves are frequently elderly, confronting the same end-of-life conflicts as those for whom they care. Two closely related phenomena, burn-out (the loss of ability to empathize as a result of caregiving) and compassion fatigue (the feeling of being overwhelmed by caring), are common, as is survivor guilt following the death of a loved one.

Self-help books offer practical advice about the many challenges of caregiving, but even when they tell us about the reality of caregiving, they never show us this reality. By contrast, stories, films, and memoirs evoke the netherworld of caregiving, the hidden reality, the living and sometimes dying experience of caregivers and care-receivers alike. Prolonged caregiving involves, more often than not, the caregivers’ hostile and sometimes murderous thoughts and fantasies directed toward both care-receivers and themselves. This phenomenon is not easily understood unless one has been a caregiver.

Caring for Barbara was both the best of times and the worst of times. I remember during the early months of her illness a colleague telling me that I would be “tested,” and throughout her ordeal the word reverberated within me. I have always hated failing tests, and I certainly didn’t want to fail this one, the most profound test of my life. Our love and devotion were never more intense, our sorrow never deeper. I couldn’t imagine, at the beginning of Barbara’s illness, that our children and I would wish for her death, but during the last weeks, when she lay in bed in a coma, completely wasted away from the ravages of the disease, unable to eat or drink, we wished for her suffering to end. And our own.

My worst moment occurred near the end when Barbara asked me, in a barely audible voice, whether I could give her all of

Page 167

her morphine. The question spooked me, reminding me of the time, 36 years earlier, when my closest friend and mentor, Len Port, in whose freshman English class Barbara and I first met, telephoned me with the news that he was in the process of killing himself. Barbara’s “suicide” question, if that’s what it was—I’ll never know for sure because she was delusional most of the time—haunted me for years. But it is not an uncommon question, as I learned when I read Anna Quindlen’s harrowing novel One True Thing (1998), a fictionalized account of caring for her mother who died of ovarian cancer.

Quindlen’s fictional counterpart, Ellen, does not kill her suffering mother, though she wants to, but we see an aged husband, Georges Laurent (Jean Louis-Trintignant), violently and graphically smother his wife, Anne (Emmanuelle Riva), to death in Amour. No caregiving film is more disturbing to watch, no title more fraught with ambiguity. I suspect that the older we are, the more closely we identify with the two octogenarians. They have had a long and fulfilling marriage, yet they find themselves unprepared to confront caregiving and death. Our interpretation of the film’s ending depends largely on whether we are sympathetic or unsympathetic to an act that reflects either the supreme act of devotion, euthanasia, or its opposite, cold-hearted murder. After engaging in what appears to be a purification ceremony, ritualistically cutting flowers that will be strewn on Anne’s body in a funeral service, Georges mysteriously disappears, in what may or may not be a suicide following the homicide.

Boundaries between caregiver and care-receiver often blur and disappear entirely, as we see in Persona, when the nurse Alma (Bibi Andersson) begins caring for the actress Elisabet Vogler (Liv Ullmann), who abruptly stops speaking and remains mute during a performance of Electra. Caregiver and care-receiver, their phantasmal faces conjoined on the screen, exchange roles, each woman taking on the worst aspects of the other. Narcissistic conflicts render the caregiving experience into a nightmare. Persona remains a cautionary tale about the ease with which compassionate care turns into humiliation and rage for caregiver and care-receiver alike.

Psychoanalysis helps us to understand our unconscious thoughts and feelings, including the ubiquity of homicidal and suicidal impulses as well as martyrdom fantasies, something that we see in caregiving stories, films, and memoirs, but not in self-help books or magazine articles. Psychoanalysis teaches us that we are

Page 168

responsible only for our actions, not our thoughts or fantasies, a truth that Ellen learns in therapy in One True Thing. Psychoanalysis enables us to recognize primitive defenses, such as splitting, displacement, and denial, as well as more advanced defenses, such as sublimation. Psychoanalysis emboldens us to speak about the unspeakable, including our worst feelings about ourselves and our deepest shames. I recall giving a talk in 2009 at the 26^th International Conference on Psychology and the Arts in Viterbo, Italy—my title was “On Not Talking and Writing about Barbara.” During the question-and-answer period, I mentioned that when I first met Barbara in 1963, I fell in love with her face and then came to love the person. Afterward, someone told me that she thought my statement was disturbing. So be it: it was the truth. What was also true, and which I have not publicly observed until now, was that I found myself looking at women differently after Barbara’s terminal diagnosis. I hated having these thoughts, which seemed at the time an unforgivable betrayal. How could I think about a future relationship with a woman when, without hesitation, I would have sacrificed my life for Barbara’s if I could keep her alive? In short, I hated feeling human, all too human. The preceding sentence is, as some of you may grasp, a Nietzschean allusion. To cite Nietzsche again, we have art lest we perish from the truth.

Psychoanalysis can help us understand and manage caregiving conflicts, but there is much that psychoanalysts can learn from clinical psychologists and literary writers. Until recently, Freud’s influential statement on loss and bereavement in “Mourning and Melancholia” (1917) remained unchallenged. “Reality-testing has shown that the loved object no longer exists, and it proceeds to demand that all libido shall be withdrawn from its attachments to that object. This demand arouses understandable opposition—it is a matter of general observation that people never willingly abandon a libidinal position, not even, indeed, when a substitute is already beckoning to them” (SE, Vol. 14, 244).

Reality-testing is more complicated than Freud and his followers believe, but not necessarily because of resistance to the truth. Dennis Klass, Phyllis R. Silverman, and Steven L. Nickman argue in their 1996 book Continuing Bonds: New Understandings of Grief that, contrary to Freud, the bereaved can maintain a relational bond with the deceased while at the same time moving forward in life by creating new bonds. That has been true of me. Five years after Barbara’s death I began dating again, and Julie and I

Page 169

married in 2011. Thanks to Julie, joy has reentered my life. No one would have been happier than Barbara. Indeed, she told me twice near the end of her life that she hoped I would find a companion so that I wouldn’t be lonely without her—the dying care-receiver’s gift to the bereft caregiver.

For psychoanalysis to survive if not flourish, it must be willing to revise its theory in light of new clinical and empirical truths. That has not yet happened with respect to loss and bereavement. PEP-Web (Psychoanalytic Electronic Publishing Web), a database of 72 psychoanalytic journals, lists only one reference to continuing bonds, and even that is insufficient: “We maintain our ties to the dead” (Karol Marshall, “Treating Mourning, Knowing Loss,” Contemporary Psychoanalysis, 2008, 229). Freud’s limited understanding of the complexity of grief and bereavement may be explained by his failure to appreciate the enormity of his own childhood losses, as Madelon Sprengnether contends in Mourning Freud (2018). The first four years of his life were filled with losses, including the death of his younger brother Julius, the abrupt firing and departure of his first nanny, and the family’s move twice in two years following his father’s business failures. Sprengnether conjectures plausibly that these losses may have been intensified by his mother’s likely depression over the death of her brother, also named Julius.

Caregiving has lifelong psychobiographical implications, particularly when a child or adolescent is forced into the role of caregiver. The 12-year-old Mary Gordon was traumatized when she was required to change the colostomy bag of her grandmother, who was dying of colon cancer. Gordon imagined being her father’s caregiver in her first novel, Final Payments (1978), and she was a reluctant caregiver when her mother developed dementia decades later. Caregiving is associated with martyrdom in Gordon’s world.

Anna Quindlen divides her life into two periods, before and after her mother’s death in 1972, at age 40. “Before” was Quindlen’s freshman year of college, when the 19-year-old student enjoyed life away from home, free to do whatever she wished. “After” was the beginning of her sophomore year when she begrudgingly left Barnard College to return home, cook for her family, and administer morphine to her dying mother. The dividing line, she admits ruefully in A Short Guide to a Happy Life (2000), was “seeing the world in black and white, and in Technicolor. The

Page 170

lights came on, for the darkest possible reason” (34). In many of Quindlen’s later stories, it’s not unusual for characters to put their lives on hold to become caregivers, as she did.

Caregiving can be a beautiful story, but not in the way Nicholas Sparks portrays it in his sugarcoated novel The Notebook (1996), made into an even more sentimental film with the same title in 2004. Caregiving means for Sparks never feeling distressed, saddened, isolated, or burdened by a care-receiver who has lost her memory. The story is an example of what Lauren Berlant calls in her 2011 book “cruel optimism,” which she defines as a “relation of attachment to compromised conditions of possibility whose realization is discovered either to be impossible, sheer fantasy, or too possible, and toxic” (Cruel Optimism, 24). Unlike Sparks’s first-person narrator, who proclaims that he is telling us a beautiful story, the authors in my book allow us to see the unvarnished truth of caregiving. I believe that all of the stories, films, and memoirs discussed in my study convey the experience of caregiving and care-receiving, including sorrow, frustration, conflict, loneliness, suffering, and, yes, beauty.

Caregiving is a subject whose scholarly time has come. My caregiving experience will inevitably be similar to and different from others’ experiences. We have much to teach and learn from each other. Stories, films, and memoirs contribute to our understanding of this subject. To see the stars, it has been said, one must be in darkness—an experience that characterizes caregiving, our dark muse.

Page 171