Tag: Alzheimer

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.

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.

Living with Alzheimer’s Disease: Barry’s story

“Barry was in his early sixties when he was diagnosed with Alzheimer’s disease. He and his husband, Randy, had recently moved to an idyllic new town on Cape Cod, excited to start a new chapter in their lives. The diagnosis meant that he not only had to give up his job but also his plans for the future. Worried about the loss of awareness of himself and his life that would ultimately come, Barry prepared his will and visited assisted living facilities. Making these decisions now gives him a sense of comfort that he is still in control of his own life.”

This story is pulled from Biogen, a Massachusetts-based biotech company, in their efforts to shed light on individual patient stories. This link takes you to the Biogen website, where you will find both the video interview and transcript. Biogen is not mentioned in this story but could be an interesting discussion point for a class focused on capitalist healthcare in the US. This story illustrates the importance of personal agency and control in a patient’s journey with Alzheimer’s disease and could be helpful in a class focused on narrative healthcare and patient autonomy. Discussions could include medical advertisements, medical autonomy at different stages of life, stereotypic images of who is an Alzheimer patient or caregiver, and privileges that come with having medical autonomy. The video is also interesting as a multi-layered text (for example, if one viewed only the video, it isn’t at all apparent that this is a story about illness, a feature that can prompt discussion about how this contributes to a message about early diagnosis and patient autonomy).

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.

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.

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.

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.

Head Case: My Father, Alzheimer’s & Other Brainstorms

Miriam Wallace, Professor of English & Gender Studies at New College of Florida, recommended this book on the Health Hum listserv. Author Alexis Orgera is a poet and the daughter of someone with early onset Alzheimer’s. Said Wallace, “What’s particularly lovely is the way it blends caregiving with learning about the disease–some great accounts of time she spent drawing with her father as a way to keep him connected as the disease progressed.”