Tag: family caregiver

Family silence around disability complicates brothers’ bond

In this brief interview, Terrence Ho describes his relationship with his brother Torrance, who was diagnosed with Duchenne muscular dystrophy as a child and passed away at the age of 37. The interview addresses family relationships, cultural stigma, and Terrence’s roles as caregiver and advocate for this brother. Terrence also describes Torrance’s talents as an artist and power wheelchair hockey goalie. Terrence has advice for other siblings about how to manage family dynamics, emotional stress, and patient advocacy. The interview reveals what an important role siblings play over time when a child has a degenerative condition, and also speaks to the difficulty parents may have in talking to children about their brother’s or sister’s disabilities. There are several mentions of types of health care and services that were provided or that would have been useful.

This brief story provides insight into challenges and rewards of the sibling relationship, one that is often overlooked. It could be used to prompt discussions about family caregiving, family communication, and ways health care providers can support family caregivers.

Learning Our Son’s Language

Pediatrician Vidya Bhavani Viswanathan describes learning to communicate with her autistic son by changing her own expectations about what constitutes “communication” and how we can connect with one another without words. Her essay details the course of her son’s loss of language at age 3, and her own struggle to come to terms with this. She writes, “I am a writer, and for me his loss of verbal language was so crushing because words were my primary currency of existing. The way I understood the world was through words, and the way I explained it was through words.” Gradually, however, she learns “how to achieve connection without words” and she gives an eloquent list of examples: “Shared enjoyment of something he was interested in; cuddles and tickles that lead to a fit of giggles; city walks with moments of pause to quietly smile his dazzling smile at the crunchy leaves on the ground, the touch of a rough brick wall, the screech of tires, and the wail of an ambulance.” The story also includes information about treatments, screenings, therapies, and assistive technology, yet the emphasis is not on “fixing” her son, but on ruling out possible medical causes for his loss of language and then learning to appreciate how he communicates and how she can enter and appreciate his world.

The essay could prompt a discussion about autism acceptance, and the importance of presuming that autistic children can connect and communicate when provided with accommodations and supports. It also encourages an appreciation of autistic perspectives and challenges deficit-based stereotypes.

States of Grace

The film States of Grace intimately captures the profound transformation of a revered physician and her family in the wake of a life-changing accident. Dr. Grace Dammann, a pioneering AIDS specialist and devout Buddhist who was honored by the Dalai Lama, was driving across the Golden Gate Bridge on her routine commute when another driver crashed head on into her car. After seven weeks in a coma and a dozen surgeries, Grace miraculously awoke with her cognitive abilities intact, though her body was left shattered. States of Grace follows her return home to where her partner Nancy “Fu” Schroeder becomes Grace’s primary caregiver, while also caring for their teenage daughter Sabrina, who was born with cerebral palsy. Grace, meanwhile, must reconcile her joy at still being alive with the frustration of being so dependent on others. Through verité footage and interviews with doctors, family, and friends, the film paints an inspiring portrait of devotion and trust as it delicately documents one woman’s fight to reinvent herself.

Through Grace and Fu’s story, this film explores many aspects of health studies, including the shift from provider to patient, role redefinition when a family member becomes a primary caregiver, the role that spirituality can play in healing, parenthood, and more.

Aliceheimer’s: Alzheimer’s Through the Looking Glass

This graphic memoir captures the author’s journey with her mother, Alice, who is diagnosed with dementia. Through a creative blend of writing, visual art, and comics, Walrath weaves elements from Lewis Carroll’s Alice’s Adventures in Wonderland throughout the text to explore the transformative power of storytelling in navigating the challenges of mental illness, loss, and social stigma. The memoir offers a unique perspective on aging and caregiving, emphasizing the healing potential of graphic narratives by speaking to how visual mediums can communicate more than, or differently from, written text. Collaged illustrations, made in part from Carroll’s text itself, are accompanied by a textual vignette. The combination of text and art results in a cohesive narrative that would lack the same depth and detail if considered in isolation. Graphic medicine, Walrath writes, “lets us better understand those who are hurting, feel their stories, and redraw and renegotiate those social boundaries.” Aliceheimer’s provides a way to introduce and educate people about Alzheimer’s as a medical condition, while highlighting the humanity involved in dealing with it as a family.

This novel could be used in classes regarding narrative medicine, graphic medicine, and/or caregiving experiences. It invites discussions on the role of storytelling in reshaping medical narratives, the impact of stigma on health, and the potential for creative expression in coping with complex health challenges. With Walrath’s background in Medical Anthropology, this book could also be used to ask how researchers personally connect to their work.

Living with Huntington’s Disease

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it. It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.

To understand autism, don’t look away

Carina Morillo shares her story as the mother of a son with autism through a TedTalk. The video is in Spanish with English subtitles; a transcript in English and Spanish is available as well. Morillo’s 15 year old son, Ivan, was diagnosed when he was two and a half and at that time, his parents did not have access to internet information or expert advice about autism. Morillo describes how she learned to connect with her son through activities he enjoyed and how she learned to appreciate and build upon his strengths, such as a strong visual memory, which became a basis for his communication through images. She describes support from a local grocer who gave her son a job that utilizes his passion for organizing items. Her message is that one does not need to be an expert to be curious and inclusive.

Eye contact is a part of the story and a metaphor for inclusion; some autistics might point out that insisting on eye contact can be distracting, even painful. However, the larger point of the story emphasizes valuing autistic abilities and working with their interests to create connection. This story can prompt a discussion that may challenge stereotypes about autism and expert systems of medicalization and treatment.

A last act of intimate kindness

“I had barely seen my brother in decades, but when time was short, he let me in.” In the “Modern Love” section of the NYT, a woman describes the tenderness and connection of caring for a younger brother she was mostly estranged from through his death from cancer. She’s surprised at how positive and touching it is to reconnect with him under such difficult circumstances.

The story could be used to prompt discussion of end-of-life care. The brother declines aggressive treatment and his sister is with him when he dies at home.

This narrative is also available in Spanish under the title, “Un último acto de amabilidad íntima.”