Wilton, Cork, Ireland
|ALLELUJAH! by Alan Bennett. Credit: Manuel Harlan / ArenaPAL (with permission).
Sue Wallace as Hazel; Simon Williams as Ambrose; Rosie Ede as Mrs Earnshaw; Cleo Sylvester as Cora; Julia Foster as Mary; Louis Mahoney as Neville; Patricia England as Mavis; Colin Haigh as Arthur; Gwen Taylor as Lucille; Nicola Hughes as Nurse Pinkey; Jacqueline Chan as Molly; Directed by Hytner; Designed by Crowley; Lighting designed by Chivers; at the Bridge Theatre, London, UK, July 10, 2018. Credit: Manuel Harlan / ArenaPAL
Illness words are seldom simple. They can hurt or heal in different contexts or change their meaning over time. Nor are they always understood the same way by patients and doctors. Borrowing from Philip Larkin, it is “difficult to find words at once true and kind, or not untrue and not unkind.”1 When James Joyce was asked whether there were enough words for him in English, he replied: “Yes. There are enough, but they aren’t the right ones.”2 The inadequacy of words to express emotional pain and suffering has been explored by many authors, but what about words for the carers? Caring is a simple concept, cherished by professionals, but as a lived experience, it is more complex. Whether voluntary or professional, personal or public, caring means commitment. For some, it is another word for coping. It is a word for all of us, not just for doctoring and nursing. Sadly, caring is a word often absent from political and economic debate.
Two great thinkers, both scholars of the human condition, have considered caring from different perspectives, both heartfelt and honest. One, a Harvard professor of psychiatry and anthropology, Dr. Arthur Kleinman writes from years of clinical experience and research; the other, a successful British playwright, Alan Bennett addresses the topic in memoir and theatre.
Kleinman laments the declining status of caring as the great failure of modern healthcare.3 Caring has become a paradox. Whereas medical schools passionately uphold the concept of caregiving as “core to health professionals’ motivations and identity,” they invest little time or resources to it, favoring technical competence, skills, and knowledge.3-8 Doctors have become distanced from patients. The same seems to be happening with nurse training.
Alan Bennett has written about kings and queens but mainly about ordinary events happening to ordinary people and how people care for each other. Although an admirer of the British National Health Service (NHS), Bennett has a deep distrust of caring. His views on caring are colored by memory of his mother’s illness, and feature in A Life Like Other People’s and Untold Stories.9,10 He also steered a diatribe on caring into his play The Lady in the Van, which deals with his interaction with an eccentric woman living alone in a van in his garden.11 His most recent play (Allelujah!) is set in a hospital ward dedicated to care of the elderly and was called Past Caring pre-production.12
For Bennett, caring is coping, “being landed with, being stuck with, having no choice about.”11 As a young man, he witnessed his mother’s recurring bouts of mental illness with which his “Dad was left to cope. Or to care, as the phrase is nowadays. Dad was the carer.”9, 10 He and his brother “cared, of course,” but “still had lives to lead: Dad was retired – he had all the time in the world to care.” Conscientiousness and devotion to duty is what killed him, according to Bennett. Familial madness is how the playwright describes his mother’s illness. His devoted father preferred euphemisms (“this business with your Mam” and “this flaming carry-on”). The doctors just called it “depression” because they did not know her.9,10 When his mother was hospitalized, Bennett longed to take her away from “this yelling hell-hole.” His father, who loved her dearly, traveled there every day, firm in the conviction that he must be there for her when she regained her sanity because no one, not the doctors or nurses, knew her as he did. Years later, Bennett returned to devotional care in his play The Madness of George III.13 Like the playwright’s parents, Queen Charlotte remains forever devoted to her husband: “It is the same with all the doctors…none of them knows him…So how can they restore him to his proper self, not knowing what that self is.”
In the screenplay for The Lady in the Van, Bennett splits his own character into dual dramatis personae, one coping with a difficult, irascible, non-paying guest, the other curiously observing the interaction as the ungrateful tenant ages and becomes frail. The playwright stridently professes his dislike for the word caring when a social worker refers to him as “the carer”: “Do not call me the carer. I am not the carer. I hate caring. I hate the thought. I hate the word. I do not care and I do not care for. I am here; she is there. There is no caring.” Coping with rather than caring for, is how he sees his relations with the demanding, ungrateful lady in the van. “She is just something that’s happening,” he remonstrated.11 Why he tolerated the situation and for so long is unclear. Was it a fascination with eccentricity, an author’s desire for interesting material? Or perhaps it was guilt, a word seldom far from the word care, and is used in the play. Was it residual regret for his own inadequacy and impatience during his mother’s illness?
The words used by Bennett for how his father was left to cope with his wife’s illness are not dissimilar to those of Professor Kleinman who concedes that he only became a carer by necessity when his wife became ill: “I learned to be a caregiver by doing it, because I had to do it; it was there to do.”4 Kleinman’s wife, Joan, developed early-onset Alzheimer’s disease and his life was transformed by becoming her primary caregiver. “We are caregivers because we practice caregiving.” It is thrust upon us, but according to Kleinman, it is the little things, the doing, the feeling, and yes – even the inadequacy – that make us caregivers.
Kleinman has come to view caregiving as a “moral experience,” an “odyssey in becoming human,” and an active “presence.” Presence is a commitment to being there, it is an act of participation in the illness story of another, and it is recognizable when it is absent. This aligns with Bennett’s account of his father’s insistence on being continually present for his wife and perhaps with the playwright’s guilt because of his own absence.
Whereas the professor uses profound, meditative language in his analysis of caring for a loved one, the playwright forthrightly attacks the language relating to caring for the elderly. For the professor, caregiving is “to learn how to endure, the act of going on and giving what we have.” For the playwright, it is “soldiering on: that was always how Dad used to put it and now I do the same.”9 Describing his own visits to his mother as a “perfunctory duty” he was relieved when it was over. He is impatient with the “blurred classifications” used in nursing homes for the elderly. Are they patients or inmates? Are they dying or just incapable of living? Are the nurses really nurses? He winces at the child-like dialogue between carer and the elderly, likening it to bad acting. Contrary to what is implied in the word caring, it is seldom a “gentle business,” according to Bennett. Introducing Lady in the Van, he argues that when anyone says “we have to do everything for them” it means “we have to do one thing for them…clean them up.” He has used similar lines before and since, in short story14 and in Allelujah!12
Both professor and playwright concur that caregiving is less about doctoring than many believe and more about what it means to be human. Bennett recalls the doctor in charge of his mother’s care as “kindly and understanding but as weary and defeated as someone out of Chekov.” Reduced time spent with patients has diminished the caring role of clinicians, and in part, contributed to the modern pandemic of physician burnout.15 Almost a century ago, Dr. Francis Peabody wrote that the secret of the care of the patient is in caring for the patient.16,17 From the testimony of Peabody’s wife, he was aware that his comments on patient care would outlast any of his scientific contributions, but he was unlikely to have known that caring for the patient would also become the secret to physician welfare.15 Clinicians need more time with patients to care for patients. Moreover, by embracing the ordinary and by feeding their curiosity about patients and their stories, they can remain fresh and effective.18,19 Regardless of whether carers act in a professional or personal capacity, they need to be valued by society and supported in their endurance.20 Caregivers can benefit from their acts of kindness, but the regenerative power of caregiving needs to be nourished. Kindness and compassion are a limited source of human motivation and should not be taken as granted.
Caring, of course, has a wider social sweep, beyond that of healthcare. Kleinman contends that caregiving should shape our political interaction with the rest of the world (“humankind’s shared project”).5 If caregiving were a core value in society, global issues such as poverty, human trafficking, immigration, and famine relief might be handled differently by governments. This noble thinking accords with the Bennettian view of modern life in Allelujah!, where the common good is sacrificed for self-interest and where heartless politicians preside over contemporary society that has become insensitive to the predicament of migrants and to the care of the elderly.
With divergent minds and different perspectives, the professor and the playwright converge on what it means to care. For all its paradox and ambiguity, caring may be endurance, indistinguishable from coping, but it is core to what it means to be human. It transcends cultural boundaries. Caring for one another may be the difference between survival and extinction of humanity.
- Larkin, Philip. Talking in Bed https://allpoetry.com/Talking-In-Bed accessed Jan 30, 2019
- Ellman, Richard. James Joyce. New and Revised Edition. Oxford: Oxford University Press. 1982, 397.
- Kleinman, Arthur. “Catastrophe and caregiving: the failure of medicine as an art.” Lancet 371 (2008): 22-23.
- Kleinman, Arthur. “Caregiving: the odyssey of becoming more human.” Lancet 373 (2009): 292-293.
- Kleinman, Arthur. “Caregiving as moral experience.” Lancet 380 (2012): 1550-51.
- Kleinman, Arthur. “How we endure.” Lancet 383 (2014): 119-120.
- Kleinman, Arthur. “Care: in search of a health agenda.” Lancet 386 (2015): 240-241.
- Kleinman, Arthur. “Presence.” Lancet 389 (2017): 2446-47.
- Bennett, Alan. A Life Like Other People’s. London: Faber and Faber Ltd. 2009.
- Bennett, Alan. Untold Stories. London: Faber and Faber, Profile Books. 2005.
- Bennett, Alan. The Lady in the Van. The complete edition. London: Faber & Faber Ltd. 2015.
- Bennett, Alan. Allellujah! London: Faber & Faber Ltd. 2018.
- Bennett, Alan. The Madness of George III. London: Faber and Faber.1992.
- Bennett, Alan. “The Greening of Mrs Donaldson.” In: Smut. Two Unseemly Stories. London: Faber & Faber, Profile Books Ltd. 2012.
- Schwenk, TL. “Physician well-being and the regenerative power of caring.” JAMA 319 (2018):1543-44.
- Peabody, Francis W. “The care of the patient.” JAMA 88 (1927): 877-882.
- Rabin, P.L. and D. Rabin. “The Care of the Patient. Francis Peabody Revisited.” JAMA 252 (1984): 819-820.
- Shanahan, Fergus. “Who needs doctors? Staying fresh in changing times.” Clin Med 11 (2011): 587-588.
- Fitzgerald, Faith T. “Curiosity.” Ann Intern Med 130 (1999): 70-72.
- Street, Alice. “Making people care.” Lancet 387 (2016): 333-34.
FERGUS SHANAHAN is Professor and Chair of the Department of Medicine, University College Cork, National University of Ireland, and Director of APC Microbiome Ireland, a research center funded, in part, by Science Foundation Ireland which investigates host-microbe interactions. His interests include most things that affect the human experience. He has published over 500 scientific articles and several books on the mucosal immunology, inflammatory bowel disease, and the microbiome, along with articles relating to medical humanities.