The 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.

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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.

How a poem entitled “All the Girls Were There, and Gorgeous” helps us reflect on illness, morality and memories by Andrew Taylor-Troutman

Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.

A year ago, a half-dozen older women gathered in a church fellowship hall. The coffee percolated as copies of “All the Girls Were There, and Gorgeous,” a poem by Carlene Kucharczyk in the Spring 2017 issue of Intima, were passed around our circle of chairs. As facilitator of this narrative healthcare workshop, I read the poem out loud. The gas logs hummed for a moment in the silent room. I was about to launch into questions specific to Kucharczyk’s remarkable poem when this participant spoke, quietly yet clearly: “Do you think it would be easier to have Alzheimer’s or ALS?”

A year later, her question came back to me and I wrote my little story, “Cups and Such,” not as an answer, but to continue the conversation.

Her question proposes a binary. In some ways, “Cups and Such” is the mirror opposite of Kucharczyk’s poem – a woman awake in her life, though / she doesn’t know it compared to a man fully aware of the betrayal by his body. But both poem and story deal with the same haunting theme: What is our relationship to our past? Memories flit and flash in and out of our consciousness like fireflies. Is hindsight really 20-20? Or, is it that we are continually revising our story to make meaning? “Revision” means to look again; etymologically, so does “respect.”

Skilled poets, like Kucharczyk, write with clarity yet focused ambiguity, thereby asking readers to look again and again for interpretations. We read and continue the conversation. A year later, I remember how the workshop participants were divided as to the moral character of the narrator: We do not like to visit her, / I hope she does not know. Was the narrator a “good granddaughter” or not? What is expected of us when a family member has a terminal disease? Could it be that the way the sick perceive us changes, say, from a bright shining face to the appearance of a moon? Is that cold and distant? Or, could the transformation be a natural reflection of a previous light?

And I still wonder, in Kucharczyk’s words, about the part that is elsewhere. Time is not linear. Perhaps there are moments, even in pain (whether physical or emotional or spiritual), when all the girls are gorgeous, when all is whole again and saved.

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Andrew Taylor-Troutman earned a certificate in Narrative Healthcare from the Thomas Wolfe Center for Narrative through Lenoir-Rhyne University. His recent essays have been published online at Mockingbird (http://www.mbird.com) and his poetry at Bearings (https://collegevilleinstitute.org/bearings). He is a Presbyterian pastor serving a congregation in Chapel Hill, North Carolina. He and his wife have three children. His story “Cups and Such” appears in the Spring 2018 issue of Intima: A Journal of Narrative Medicine.