Kristin Graziano’s “Contents Have Shifted” considers how best to respond to a parent’s dementia-inflected reality. “For years,” Graziano observes about her mother, “I felt compelled to refute her falsehoods. I felt that by correcting her, I could yank her back to The Truth, to the real world. When I did this, sharp words with resentful tones followed, leaving us both frustrated and silent.”
Read moreIt’s Happening to Me, Too: Reflections on Interconnectedness, Interdependence, and Independence in Caregiving Relationships by Leena Ambady
“Every thought begins with I. This is happening to him, I try to say,
not happening to me. But it is, too. This is my place to tell it.”
The above is an excerpt from Kristin Camitta Zimet’s “A Dialysis Diary,” (Intima, Fall 2023). In this beautiful essay, Camitta Zimet writes about her husband’s end-stage kidney disease, the initiation of dialysis, and the impact that his chronic condition and the treatment it required had both on her and her relationship.
Read moreThe Healing Power of Empathy: Does it Exist? Can it be Acquired?
In this reflection, a retired surgeon examines the research findings of evidence-based medicine to uncover whether empathy, in addition to the principles and practice of narrative medicine, can facilitate deeper healing.
Read moreWhen Cure and Language are Inadequate, What Remains? Reflecting on bearing witness by Rachel Cicoria
Recalling the loss of her husband, Mike, Dianne Avey’s essay“Morning Light” (Spring 2023 Intima) reaches back a decade to a quiet September morning on Anderson Island in Washington. Avey, a writer and nurse practitioner, draws us, however, not to the moment of her husband’s death but to a “place of quiet morning light.” This liminal stasis exceeds cure and speech and, in my view, renders the “human” (as defined by technical and linguistic competencies) indeterminate. Yet, beyond our abilities to fix and to say, there remains “the only thing we can ever do”: being present and bearing witness.
Read moreAbsences in Cortney Davis' "It Was the Second Patient of the Day"
A writer and father ponders the power of absence in the clinical encounter, as well as the power of presence.
Read moreOn Brian Ascalon Roley’s "Caregiving"
A pediatric emergency physician reflects on the burning intensity found at the heart of caregiving.
Read moreWhere do you turn for comfort? A reflection on Popsicles, Tater Tots and hospital gift shops by internist Ben Goldenberg
“Sometimes the job we do isn’t about fixing what’s wrong but rather helping each other survive within the confines of our brokenness.” Artwork: The Art of Being Here by Kirilee West Spring 2022 Intima
Read moreExploring End-of-Life themes in "Nay Nay's Rebirth," a short story by Sara Lynne Wright
A retired surgeon reflects on a short story published in this journal—and in doing so, also contemplates how a comfortable and humane death can be fulfilled at the end of life.
Read moreDiscerning Different Shades of Grief by Jeffrey Millstein, MD
In my essay, “Remembrance,” I discovered my own grief for a recently deceased long-time patient while continuing to care for her widowed husband. John Jacobson’s piece “Now and Then” (Fall 2018 Intima) brought me deep into the chasm of a different type of grief, from loss of someone who was, and to a more attuned place from where to offer empathy.
Read moreThe Caregiver’s Invisibility Cloak: A Reflection on Albert Howard Carter’s story “The Cookie Intervention” by Rossana Di Renzo
Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy. Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.
“Oh, there’s the PT’s car pulling up. Is it 11:00 already? Must be; Laura’s always on time. Actually I would love to go upstairs and have an hour of peace, but I do like her. She’s always so upbeat and just full of energy. Besides, she always sees progress in my husband Tom, seeing him just once a week. I see him 15 hours every day, and his recovery from the stroke is so slow that sometimes I see no progress at all. None. I’m so worn down, I just feel numb.”
This narrative from the story “The Cookie Intervention” by Albert Howard Carter brings to our minds the many women we interviewed for our paper “Embraced by Words” (Fall 2019 Intima). They told us how they looked after and cared for their husbands, sisters, brothers, children, and parents.
When dealing with the theme of disability, as in Carter’s story, people need to reassemble stories of care that mainly take place within the family, because it is often that both the place of private life and the place of care overlap.
Usually there is one person who devotes oneself to a sick person and that person is the caregiver.
Our research shows that in 50 percent of cases care work is carried out by women, who continue to define themselves not as caregivers but as wives, mothers, and partners. They consider their duty of care natural; their lives are designed only in function of the sick person.
The women we met told of their loneliness and fragility and the thousands of obstacles they have to face in everyday life without knowing how long that routine will last.
A wife said “I’m feeling so alone. I have too much to think about. I do everything. I have a huge weight on my shoulders, everything falls on me.”
When the wishes of the caregivers cannot be fulfilled, as we read in Carter’s story (“I want my husband back”), what will help them to accept disability and their work of care and to ask for help?
Positive and powerful energies are needed in addition to personal resources. It is important to be listened to and give voice to the pain in body and in soul. The support throughout the care process, the family and social networks, the community, the closeness and authentic solidarity of others, ensure that there is a process of rewriting, of evolutionary readjustment that allows them to tolerate, manage suffering and allow themselves to be open to hope.
Rossana Di Renzo, author of the academic paper, "Embraced By Words" (Fall 2019 Intima) with Marilena Vimercati, lives and works in Bologna, Italy. Her interest has always been narrative and applied narrative medicine which she uses in different fields: in training courses for health professionals, in the degree course in Nursing at the University of Bologna and in research.
The Isolation of the Caregiver in John Jacobson’s “Now and Then,” a reflection by English professor Brian Ascalon Roley
The difficulty of caregiving is shared through prose and poetry..
Read moreSuffering’s Generous End: From “Veterinary Lessons” to William Cass’s story “Gentle Breezes,” a reflection by poet Jane Desmond
Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. Her poem “Veterinary Lessons” appears in the Fall 2019 Intima.
William Cass’s short story, “Gentle Breezes” (Fall 2019 Intima) captured so much complexity in so few words. Casting us into the end stages of the long-term caring done by divorced parents for their severely and chronically ill son, we look back to imagine their twenty years of struggle and their increasing heartbreak as debility encroaches more and more on his quality of life.
Finally, as their son appears to lose nearly all of his abilities to interact with his environment, they meet on a park bench and agree to change their custodial Advanced Care Directive for him to “Do not Resuscitate.” As they sign the papers, the poignant counterpoint to their moment of surrender is a young couple with a newborn strolling by in the park, glowing with new-parent joy and “full of anxious delight and hope” as Cass puts it—for a life yet to unfold.
In my poem in the same Fall 2019 issue, “Veterinary Lessons,” I consider the physical intimacies of palliative care for my rabbit, of providing daily fluid therapy, and the wish that the peaceful end of suffering I know her veterinarian can deliver “when the time comes” would also, someday, be available to me if I too became, like the son in Cass’s story, just a sliver of myself.
Of course, a desire for the availability of assisted suicide in the face of incurable, painful illness, is different than the burden of ending treatment for another—not our self—and different still across species. We have the option to choose euthanasia for a pet, and when we make that choice we do so out of love for our animals, although that doesn’t lessen our grief. The veterinarians know what a struggle this decision is and counsel us to consider “quality of life” in making this choice. They even provide scales for us to use to assess this life, to note activities and pleasures our sick pet still enjoys. How much “quality” is still “enough”? And enough for whom? Many veterinarians fear the client who will “never let go,” subjecting their terminally ill pet to every imaginable treatment no matter how unlikely a cure.
Many physicians too, I imagine, struggle with this issue because for humans we don’t have the transferable concept of actively choosing “a good death” that is available to veterinarians. The closest we come is the “Do Not Resuscitate” order to allow natural processes to take their course without further intervention. The ethical and political quandries of negotiating end-of-life decisions with and for humans are daunting—legally, ethically, and culturally complex. But as we become more and more able to extend human life through dramatic medical interventions, how can we also grapple with the “quality of life” issue in a rigorously ethical way that begins to approach the question of “suffering’s generous end,” as I put it in my poem? Are there “veterinary lessons” worth studying?
Jane Desmond is a poet and scholar who writes about the intersections between veterinary medicine and human medicine, as well as our relations with non-human animals. A Professor of Anthropology at the University of Illinois at Urbana-Champaign, she also holds an affiliate faculty appointment at the College of Veterinary Medicine, and is the author of several academic books, including “Displaying Death and Animating Life “ (U. of Chicago Press, 2016). Her poetry has appeared in Persimmon Tree in the U.S. and in Words for the Wild in the U.K.
© 2020 Intima: A Journal of Narrative Medicine
“Daily life is a massacre”: A reflection on “Now and Then,” John Jacobson’s essay about caregiving, by Marilena Vimercati
Marilena Vimercati, author of the research paper "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where she collaborates with ISMU—Initiatives and Studies on Multiethnicity, an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.
“Nobody knows our daily life. Daily life is a massacre.” That is what we were told by one of the caregivers we interviewed and the detailed description of that burden is exactly what I found in “Now and Then,” John Jacobson’s Field Notes essay (Fall 2018 Intima). Jacobson, a caregiver who assists his wife Claudia, lives days that are marked exclusively by the care for her: There is no room for his personal life.
He, who had a career for years, now uses vacation days to accompany his wife to the doctor; he, who was always on time at work, now often calls to say he will be late. He does not want to know anything about his friends’ holidays, or their career advancements, or the changes they have made to their homes.
“Meaningful” is what he said when he met a friend recently, who had returned from a holiday in Europe: “While you were away, I emptied bedpans!” As much as he would like Claudia’s help in the kitchen, now he must do everything by himself. (“I both had Claudia and didn’t have her.”)
The weight of now is really palpable in his narrative: Jacobson cannot imagine his future because on the one hand he feels crushed by the duties of everyday life—the same feeling that another caregiver interviewed by us calls ‘roller coaster’— that is a daily life full of tiring climbs, free falls, suspensions, and turns that could lead to derailing if not managed well. On the other hand there is the weight of the loss of what Claudia was and meant to him: “Now I spend too much time counting losses. I remember coming here with Claudia, holding hands as we walked along this path. I feel guilty to say it, but I wished I had someone holding my hand now.”
For Jacobson, as well as for the many caregivers we met, the emotional burden to be a caregiver is so heavy that the future is annihilated by the present. “I don’t want to think about tomorrow. I’m scared of that. My mantra is here and now.”
Marilena Vimercati, author of "Embraced by Words" (Fall 2019 Intima) with Rossana Di Renzo, lives and works in Milan where collaborates with ISMU – Initiatives and Studies on Multiethnicity—an independent scientific body—to carry out projects focusing on interaction between migration processes and training paths for professionals.
Caregivers, Grief and Metaphors: Reflecting on Sara Adler's poem “Birds of Prayer” by John Jacobson
“Birds of Prayer” is striking to me for the writer’s use of metaphor. I believe that both caregivers and the ill need metaphors. We especially need metaphors from nature. They reconnect us to a wider web of life where we can find some sense of belonging. They also give us distance. They help make sense of the senseless.
Read moreLetter to a Caretaker: An Acknowledgement by Jutta Braun, RN
Dear Caretaker:
As I read, I felt with you the fear, the pain, the madness.
The would-be caretakers – police, EMT’s, nurses, doctors – all too human and apathetic. Aren’t we all? I, too, am angry with them – for taking your dignity, and giving nothing in return.
Read moreBeing Useful: The Emotional Transformation of A Caregiver. A Commentary on Family and Coming Together by Bekka DePew
We are often powerless in the face of death or illness to do much besides watch; we are forced to recognize “the uselessness of love to give her breath.” This feeling of helplessness we experience, both as physicians and as caretakers, forces us to reevaluate the way we understand ourselves and the purpose behind the role we play as a family member or a healthcare provider.
Read more