Tag: caregiver

“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.

A Body, Undone: Living on After Great Pain

“A Body, Undone” is a memoir by Christina Crosby, an English professor chronicling her life after a paralyzing cycling accident in 2003. A respected English professor at Wesleyan University, Crosby explores the physical and emotional pain of her disability through a critical feminist and queer thinking lens. She puts into words the experience of life in a broken body that seems beyond the reach of language and understanding, discussing how we construct a livable life in the midst of unimaginable pain. She situates her personal narrative within the broader social critiques of care labor and the financial burden of disability and injury within the current economic systems and structures in the US. The novel would be relevant to disability studies and feminist theory, but its prose that is rooted in humanity and the events of daily life function to make it accessible to a general audience . This book is a patient narrative that challenges the dominant discourse of disability, and could be relevant to discussions about disability, pain, and care and its intersections with gender, sexuality, and class.

Family Caregiver Alliance – Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics including Alzheimer’s, diabetes, cancer, autism, and so much more.

One story provided is from two parents’ perspectives of caring for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

Another story example is that of Lisa and her husband Richard. Their life, initially filled with love, family, and what Lisa describes as “vibrant Italian passion,” took a drastic turn in 1998 when Richard’s behavior and health began to change. Despite numerous attempts to find a diagnosis and solution, it wasn’t until a CT scan revealed the extent of Richard’s condition—his brain was shrinking, and a large mass was present. The couple faced the harsh reality of Early-Onset Alzheimer’s, and began attending classes and finding support from the Family Caregiver Alliance. The challenges escalated when their home caught fire, leading to the heartbreaking decision to place Richard in a facility dedicated to Alzheimer’s care. Lisa’s account is a raw and emotional portrayal of the toll this devastating disease took on their relationship and family. Richard’s passing eight months later left a profound void, and Lisa, in coping with overwhelming grief, turned to cooking as a form of self-care. Her book, “Good Grief Cooking,” is a resource she provides for those facing similar loss. Through her story, Lisa emphasizes the importance of seeking support, sharing experiences with other caregivers, and finding ways to navigate the complexities of grief.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to

share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

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.

Squirmy and Grubs YouTube Channel

“Squirmy and Grubs” are a married couple who make Youtube videos, podcasts, and Instagram posts about life as an interabled couple. Shane, who has spinal muscular atrophy, and Hannah, who does not, share their daily lives, challenges, and adventures. They provide insight into their interabled relationship, educating viewers about disability awareness, acceptance, and the importance of genuine connections. Their youtube channel spreads awareness about Spinal Muscular Atrophy, but also dives into what it’s like to be together as one person who has a physical disability, and one who does not. They share videos that share their daily routine and how Hannah cares for Shane. Though, they also emphasize the ways that Shane gives care to Hannah, as well, even though he has very limited mobility. This Youtube channel is important because it shows how an interabled relationship is not really so different, and that disabled people can be in genuine and fulfilling relationships.

This youtube channel gives a first person perspective of life as an interabled couple and could be used in a classroom setting for classes focused on learning about reciprocal care, and the logistics of taking care of someone with a physical disability in a way that shows humanness, support, reciprocity, and sensitivity. They provide many great videos on how certain people with disabilities would like to be addressed, cared for, and interacted with in public and private settings, sharing a unique perspective. Specific videos to watch for learning and analytical purposes are titled, “Intimacy in Our Marriage Q & A,” “We’re Hiring a Caregiver?!” and “Our Physical Intimacy and Romance Explained.” These videos provided a candid look into their life as an interabled couple, sparking discussion on the role of media representation of disability, and how humor plays into storytelling and health narratives.

My Journey with Alzheimer’s Disease: Greg

Author and advocate Greg O’Brien shares his journey as a caregiver for his parents, who both had Alzheimer’s disease, as well as someone diagnosed with Alzheimer’s himself (he is also the author of a book, On Pluto: Inside the Mind of Alzheimer’s). In this video (which also includes a transcript), he provides a detailed account of his personal experience with the condition, starting with the fear and anxiety he felt upon noticing the symptoms he initially saw in his parents and the relief experienced upon receiving a formal diagnosis, which allowed him to put a name to the enemy he was facing. As the story progresses, Greg opens up about the progressive nature of Alzheimer’s, where he experiences more frequent withdrawal, anger, and hallucinations. He emphasizes the need to live in the present moment because, with an Alzheimer’s diagnosis, there is no clear future. He discusses his strategies for fighting the disease, which include journaling daily, maintaining a disciplined lifestyle, and staying physically active.

This story can serve as a case study to understand the emotional and psychological challenges faced by individuals dealing with an Alzheimer’s diagnosis. It also addresses questions about agency and coping, and challenges the stereotype that people with dementia are just passive victims.

Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics, including Alzheimer’s, diabetes, cancer, autism, and so much more.

While there is no link to submit stories on the website, the stories seem to be provided by community members who are engaged with the family caregiver alliance. While they are urating the stories, there is quite a variety of types of stories, ranging from casual and blog-like to more formal articles. The communal aspect of this page allows the reader to search for what they’re looking for with keywords and categories.

One story provided is from a mother describing how she and her husband have cared for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

Mary Jane: A play about caregiving for a young child with serious health conditions

Mary Jane is a single mother of a young child with cerebral palsy, seizure disorder, and lung disease. The play portrays her caregiving, both in ordinary times and during a health crisis that eventually takes his life. We see her build a support network, including professional caregivers and others with whom she gives and receives support. She is a fierce advocate for her son and her descriptions of him and her life with him make clear the value of disabled lives.

I plan to use this in class as an example of a caregiver narrative that shows the ways in which family members are impacted by illness and the significance of their support and advocacy. It is a powerful statement about the joy and the pain of caregiving (at one point in the play, Mary Jane states that one of the more useful things someone said to her early on was that there would be good days and bad days). It also portrays ways that our healthcare system and society often fail to support caregivers. There are scenes in which healthcare providers address Mary Jane only as “mom” and the only staff member in the hospital who addresses her by name is a chaplain.

He was not the first dead man I X-rayed

The author had this to say about the poem: “I have X-rayed thousands of people over thirty years, but this one still come backs to me. It’s the story I tell when people ask me for ‘hospital stories,’ so it’s no surprise that I eventually wrote the story in a poem. I can still so vividly see him and me alone in that cold room.”

” Content warning : Gun violence, some graphic descriptions of bodily harm

This is a short poem written from the perspective of the author as a X-ray technologist. It describes one particular experience he had caring for a man with a gunshot wound who dies during the treatment and the poem. Provides an opportunity to talk about death and the impact experiencing death may have on healthcare providers. The brevity and personal quality of this piece leaves room for students to interpret and discuss their own thoughts and reactions.

There is a complex story in a brief poem, with lots to unpack, accessible to all audiences.

In need of a prayer

Physician’s story of visit to a suspected-COVID patient from early days of pandemic. Details the stress of not knowing how to protect herself, patients’ isolation from his family, lack of treatment options, frantic pace of ER when infections and frequent deaths taxed medical professionals’ emotional and physical stamina. Relates patients’ conditions to her own father. Vivid starting point to discuss burnout (contrast with simple exhaustion and overwork), remind all audiences of what early months of uncontrollable COVID were like as memories fade. Ends by evoking a Celine Dion/Andrea Bocelli song about prayer that could contribute to discussion of music in healing.