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.