Tag: family narrative

The Desperate Son

Witnessing his father's decline from cancer, an oncologist wrestles with his own fears and desperation. The story illustrates what happens when roles are flipped and a health professional finds himself at the centre of a family health crisis. What would you, as a health professional, do when faced with a similar situation? The story could be used to promt discussion about care at end of life and provider-patient communication.

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.

“A Deep and Hollowing Pain”: Parents Share Stories of Caring for a Sick Child

The article compiles brief quotations from interviews with parents sharing their experiences and lessons learned while dealing with their children's cancer diagnoses. The parents express the shock and emotional turmoil upon receiving the news, describing the physical and emotional impact of such moments. The struggles include grappling with the unfairness of the situation, the abrupt disruption of daily life, and the challenge of balancing personal well-being with the demands of caregiving.Some parents reflect on how they coped with the stress, sharing coping mechanisms such as engaging in activities with their children, seeking support from friends and medical professionals, and finding moments of joy amidst the pain. The article emphasizes the importance of self-care and highlights the physical toll that prolonged stress takes on caregivers. Although the quotations are very brief, and we don’t know much about the individuals who contributed them, they are interesting to consider as micro-stories or story fragments; taken together, the collection provides varying perspectives and voices of parent experience.

Music Therapy in Larry’s Life

This five minute video from AMTA music therapy shares Larry’s story, a musician, teacher, father, and husband who lost many functions following a seizure. The video contains an interview with his wife, and board certified music therapist Moreen Bosch, to show how music has helped Larry regain his self-confidence and joy in music. This video could be used to examine the role of arts, specifically music therapy, in the healing process.

A Lion in the House

“A Lion in the House” is a 3-hour and 45-minute long documentary about childhood cancer available on Netflix. This emotional and powerful documentary follows the lives of five children battling cancer and spans over six years. The film provides an intimate and unfiltered look at the challenges faced by the young patients, their families, and even the healthcare providers caring for them. Some of the challenges addressed in this film include parenting a sick child, experiencing pain and isolation as a sick child, financial struggles as a family fighting illness, and the toll childhood illness takes on physicians’ emotional wellbeing. Using storytelling and candid interviews, the documentary explores the complex emotions of grief, sadness, hope, and so many more that arise when confronting a life-threatening illness like cancer. Viewers will gain insight to the multi-layered challenge that cancer is, confronting topics of decisions surrounding death, pain, isolation, friendship, and financial stress. The openness of this film reveals the difficult decisions cancer brings, especially when choices have to be made for a child. This film is a very moving and real portrayal of the waves of heartbreak and hope that come with childhood cancer. This film is unique as it shares the perspectives of everyone involved in the process of treating cancer and could be used in any course interested in working with a very raw personal narrative. One example of a contrast revealed is the different challenges faced by parents, children, and physicians. Children experience the pain and loneliness, parents have to make life-changing decisions for their children, and physicians have to inform about and execute treatment plans taking into account both physical and emotional limitations. Because of the many perspectives shared, it could be a useful film for healthcare students or for any students learning about childhood illness, death and dying, and approaching medical care holistically. Additionally, it raises questions regarding consent and making medical decisions for children, and could be used in a course surrounding medical ethics. One of the stories told in the film is the story of Tim, who was diagnosed with Hodgkins Lymphoma. Tim is a vibrant and spunky fifteen year old who’s symptoms were initially brushed off by physicians. He had a persistent cough and swollen lymph nodes, and was eventually emergently rushed to the hospital, where he got his diagnosis. Tim has a large family, living with siblings, extended family, and his mother, Marietha. In his teen years, Tim says that he enjoys all of the attention he gets because of his diagnosis, and is resistant to take his medications and listening to his mom and team of physicians. A nurse explains that by not listening, Tim is upholding his “cool” image, and eventually needs a nasogastric tube because of it. On top of his lymphoma, Tim lost his father, which his psychiatrist explains has really limited his social life. Through everything, even a period of his cancer worsening, Tim persists and remains joyful. Eventually, Tim joins a school program for students who are behind, like him, and begins a job at McDonalds. After a special trip that he and his mother take to Chicago, Tim becomes incredibly ill, once again. Resistant to the chemotherapy, his condition worsens, and he becomes worried about his death. Tim ends up dying, and the film covers his medical team and family’s grappling with his death. Tim’s story, specifically, is complex and could spark conversations on ethics, facing death as a young person, balancing being a teen and being sick, parent loss, single parenthood, as well as why his story, like others, is an important one to be told.

My Sister’s Keeper

“My Sister’s Keeper” is a fictional story written by Jodi Picoult. It revolves around the Fitzgerald family, whose lives are profoundly affected by their daughter Kate’s long-term battle with leukemia. In a unique ethical dilemma, the parents conceive another child, Anna, specifically to serve as a compatible donor for Kate. As Anna gets older, she becomes increasingly aware of her role in her sister’s medical procedures. At a certain point, Anna decides to sue her parents for medical emancipation, seeking control over her own body. The story follows the legal battle alongside a struggling family trying to make Kate’s life as good as possible. This combination brings into light the complexities of love, sacrifice, autonomy, and the implications of using one child to save another. This novel explores these issues through the perspective of every character, including the attorney. The mother’s perspective explores grief, strength, and the need to fight for one’s child’s life no matter what. The father’s experience shows an example of someone who wants so desperately for his daughter to live, but also wants to protect the autonomy of his other daughter. The brother’s perspective tells the story of a boy who feels neglected in a family focused on a cancer diagnosis. The two sister’s go back and forth in caring for each other, and it becomes clear through this dialogue that Anna is suing her parents at her sister’s request, as her sister is ready to die. And the attorney, who suffers from epilepsy, explains his support for young Anna, despite her parent’s anger, as he knows what it’s like to not have control over his own body. The combination of perspectives explores the moral issue of bodily autonomy as deeply complex and woven with people and choices to listen to. This novel could be used in classes on medical ethics, as it raises a complex story full of moral dilemmas surrounding medical decisions and familial relationships in the face of childhood illness. It prompts conversation surrounding parental authority, blurred lines between love and autonomy, and childhood cancer. Specifically, this story shows how cancer can affect a family, touching each person so uniquely. Kate, after a whole life of fighting, was ready to let go, whereas her mother would do anything and everything to keep her alive. Anna was happy to donate blood and organs to her sister, but sued her parents to honor her sister’s wishes, even though she lost her parents’ trust. And the attorney gives an example of when it can be important to support and listen to a child, even when their parents don’t agree. This film highlights that cancer and organ donation are not straightforward issues, and sometimes a person’s wants are contrary to the common narrative. This book is a longer read, and it is such a complex story, which makes it difficult to break apart for shorter sections, but there is a wonderful film adaptation that could be watched in a class period. The book and film are slightly different, but all of the relevant topics and questions remain. An interesting assignment could be having different people read different perspectives and discuss what their assumptions about the other characters would be after only reading from one point of view.

Losing Each Other when Caregiving as a Family

This caregiving story explores the challenges faced by the narrator, Dan Harding, when his mother was diagnosed with multiple myeloma, a bone marrow cancer. As the youngest sibling, Dan took on the role of primary caregiver for his two-year-old brother, Ramón, who had non-verbal autism. The narrative explores the complexities of caregiving, his strained relationship with his brother Ramón, and the family dynamics during a time of grief and healing. He describes the initial difficulties in understanding and meeting Ramón's needs, the rejection faced as the primary caregiver, and the perseverance required to maintain their bond. The story highlights the turning point when he realized the importance of immersing himself in Ramón's world rather than forcing him into his own. The narrative also delves into the family dynamics, including the denial of Ramón's father about his son's condition, leading to conflicts within the family. Different coping styles among family members, clashes, and misunderstandings are discussed, along with the impact of the mother's health condition on the family dynamics. The story emphasizes the lack of understanding about mental health within entire families and the prioritization of physical tasks over emotional well-being. It concludes with the acknowledgment that caregiving is a complex journey with both challenging and loving moments and not all aspects can be neatly resolved or glossed over. Dan expresses a realistic perspective on the difficulties of caregiving and emotional healing within a family context. This story could be used in multiple different settings, like for other caregivers, or in a classroom setting for students or healthcare providers hoping to better understand the experience of caregivers. It provides insight on how an entire family could be supported in the presence of multiple diagnoses, encouraging healthcare providers to help their patient’s families find mental health support as they complete their caregiving duties.

Laury’s story: ‘Mum became utterly lost in the fog of her own mind.’

Laury reflects on her experience as a caregiver for her mother, who passed away from Alzheimer's disease. She recounts the journey through various stages of the condition, describing the initial use of memory aids, the gradual loss of her mother’s cognitive and physical abilities, and the difficult decision to place her in residential care. Laury’s story also outlines the challenges of saying goodbye to a loved one at the end of a long disease.

This story can be used for a class interested in the social, emotional, and financial impact of long-term disease on both the patient and caregivers/loved ones. This story could also be used to look at death and dying through a personal and empathetic narrative which can lead to discussions about stigma and fears that surround death, especially for those with chronic or terminal illnesses.

The Mustache

This short story follows a teenager straddling the precarious line between adolescence and adulthood, Mike, as he visits his grandmother in an assisted living facility. He discovers that she thinks he is her late husband when she tries desperately to get him to forgive her for a past wrong, while Mike is bewildered at such a raw view of someone he previously only thought of as a distant relation, not her own person. This would be useful for a class discussion on dementia and its effects on family members, as well as the residential care industry itself. It might be a particularly important resource for training healthcare workers to work with the elderly in these kinds of facilities to better understand nuanced experiences of both those who live there and those who visit. Courses on aging more generally could also easily incorporate this as a prompt for discussion or writing reflections.

Jessica’s story: “It isn’t just dementia that’s a terminal diagnosis – life is”

Jessica delves into her experience grappling with the possibility of inheriting familial Alzheimer's disease, a rare, inherited form of the condition. Jessica shares her decision-making process, including participation in observational research, contemplating genetic testing, and the emotional impact of receiving the test results. The story not only highlights the unique challenges faced by individuals with a genetic predisposition to dementia but also sheds light on the complex ethical and emotional considerations surrounding genetic testing. Jessica learns she does not carry the gene, leading to a mix of relief and survivor's guilt. The narrative concludes with an insightful reflection on the importance of embracing life regardless of a terminal diagnosis and offers support to those facing similar decisions.

Students can analyze the emotional, ethical, and practical dimensions of genetic testing, exploring the author's motivations, challenges, and the aftermath of receiving the results. The story prompts discussions on the broader implications of genetic testing, including family dynamics, reproductive choices, and coping with survivor's guilt.