I have accompanied dying people for more than twenty-five years—as a counsellor, volunteer chaplain, and companion. I feel passionate about changing the perception of dying and death, the way we care for people during their most vulnerable moments, and how we support families through this painful time. Since my twenties I have been immersed in Buddhist practise which inspires and informs my life and work. Together with other clinicians and mindfulness practitioners, we created one of the first contemplative-based training in end-of-life care for caregivers called “Authentic Presence”. Daring to be present might be the hardest thing you may have done in your life, and, you may come to discover, one of the most intimate, beautiful, and rewarding.
Dr. Ira Byock is a well-known authority in palliative care and hospice and a wonderful storyteller. In his stories, he talks about the physical realities of the dying process, the emotional despair we may witness, or how to handle family dynamics. He doesn't shy away from reflecting on his personal growth doing this work, which makes this book deeply human and relatable. Dying Well was published several years ago. It is still an informative and insightful read, especially if you are a family caregiver and care for a loved one. Please also check out his other books, Four Things That Matter Most and The Best Care Possible.
From Ira Byock, prominent palliative care physician and expert in end of life decisions, a lesson in Dying Well.
Nobody should have to die in pain. Nobody should have to die alone.
This is Ira Byock's dream, and he is dedicating his life to making it come true. Dying Well brings us to the homes and bedsides of families with whom Dr. Byock has worked, telling stories of love and reconciliation in the face of tragedy, pain, medical drama, and conflict. Through the true stories of patients, he shows us that a lot of important emotional work can be accomplished…
I have worked in senior living for over 25 years. I was the administrative director of both an assisted living facility as well as a memory care facility and then I worked for over 18 years in one of the top national Life Care Communities in the country. During this time, I helped thousands of families navigate the complex and confusing world of senior living. I wrote my book to help families make educated and informed decisions and know what they could do before a crisis! It is not if your parents will need help, it is when! I am passionate about passing on the knowledge of my years in this field.
Dr. Kernisan is a well-known geriatrician who writes an educational newsletter that is as useful as her book!
She has years of expertise on dealing with all kinds of senior health issues and concerns. Excellent book for any caregiver! She covers a wide range of critical things to know if you are caring for an elder loved one that I can’t recommend this book enough!
It’s scary and stressful when it happens…. noticing changes in your parent and becoming increasingly worried about their health and safety. Maybe it’s Mom leaving the stove on, Dad getting lost on his way home, or unpaid bills that trigger this realization. Or perhaps there have been falls or emergency room visits. Whatever it is, you know something’s wrong. You wonder about a diagnosis. And you want your aging parent to accept help, or perhaps move.
Helping an older parent can be gratifying. But it’s especially hard if they’re blowing off your concerns, refusing to make changes, or otherwise resisting…
Amidst COVID-19, HIV/AIDS is a touchpoint for journalists, scholars, writers, and a public who seek a usable past in understanding the present and making an uncertain future less so. The challenge of how to love, live, and survive amidst pandemics isn't new, I play here on the title of one of the first safer sex books,How to Have Sex in an Epidemic. As someone who studies how activists document their work and how they bring those materials to life today, I'm both fascinated and troubled by pandemic comparisons. These books offer crucial stories and productive tools to think with as we navigate questions of how to survive, and maybe even thrive amidst intersecting pandemics.
Marty Fink’s book is one of the best examples of recent and groundbreaking scholarship on HIV/AIDS.
Fink examines HIV/AIDS histories through critical disability studies discourse to show in a compelling and very readable way how queer and trans people in the 1980s and early 1990s came together to take care of each other when faced with stark and far-reaching state violence.
This book has deep contemporary relevance showing how multifaceted HIV care-giving narratives continue to inform how individuals and our wider society makes sense of gender, disability, and kinship.
Such work is essential in this political moment where we are seeing ever-more challenges to bodily self-determination, for women, queer and, especially for trans people.
Finalist for the LGBTQ Nonfiction Award from Lambda Literary
Queers and trans people in the 1980s and early ‘90s were dying of AIDS and the government failed to care. Lovers, strangers, artists, and community activists came together take care of each other in the face of state violence. In revisiting these histories alongside ongoing queer and trans movements, this book uncovers how early HIV care-giving narratives actually shape how we continue to understand our genders and our disabilities. The queer and trans care-giving kinships that formed in response to HIV continue to inspire how we have sex and build chosen…
I’ve been a little bit morbid since childhood. My father died when I was not quite 10 years old, and my mother was a huge fan of horror novels and scary movies. But I became seriously interested in death and dying when my mother got cancer and was facing the end of her own life. I acted as her medical advocate and participated in many aspects of her care. I'm also a sociologist who studies taboo elements of culture and I'm invested in creating a consciousness shift so that the United States is less death-phobic, allowing us all to live our lives more fully by addressing our mortality head-on!
This book is deceptively short for something as deep and thoughtful. I loved this because of its focus on nonjudgmental, openhearted caregiving.
I wish I’d had this book when my mother was dying and I was acting both as her emotional supporter and her medical advocate. I frequently erred on the side of being her advocate and neglected my role as emotional supporter. This tiny little incredibly powerful book would have helped me tremendously! I will revisit it often.
Loss is difficult...and universal. What do we say? What do we do?
Part how-to guide, part hopeful manifesto, Cultivating the Doula Heart provides a clear framework for supporting those facing hardship, grief, and loss. Succinct and straightforward, this "work of heart" covers: Components of Doula Care, Aspects of Loss, Ways of Being/Ways of Doing, Grief Support, and Contemplative Exercises.
Readers will feel empowered to move from sympathy to empathy to compassion. The doula heart can be readily infused into all work and into any relationship.
I am a caregiver who became an author. Both my parents had dementia. I found few books written from a personal perspective to give me guidance, so the journal I kept ultimately became the book I wished I could have read during our dementia journey. The journey didn’t end for me with the death of my parents. It led me to form a non-profit with two other dementia authors. This passion project has become a global community of authors who have written about Alzheimer’s and dementia from personal experience. Now more than 300 strong, we provide quality resources for caregivers and others concerned about dementia. Learn more at AlzAuthors.com.
I was drawn in by Marianne Sciucco’s novel about a man caring for his wife with Alzheimer’s. It’s a love story between a long-married couple, one of whom has dementia. It’s about a husband’s determination to honor his wife’s request to stay in their home, even though his own health is failing. It’s about the magic of the day they “escape.” I loved this book because it showed me that love endures despite dementia; despite what life throws our way.
What if the person who knew you best and loved you most forgot your face, and couldn't remember your name? The PromiseA care facility is everyone's solution for what to do about Sara, but her husband, Jack, can't bear to live without her. He is committed to saving his marriage, his wife, and their life together from the devastation of Alzheimer’s disease. He and Sara retired years ago to the house of their dreams, and operated it as a Cape Cod bed and breakfast named Blue Hydrangeas. Jack has made an impossible promise: He and Sara will stay together in…
I’m a writer, journalist, and occasional translator. Originally from Poland, I now live in the Netherlands with my German husband and three multilingual children. Since my children were born, I’ve become fascinated by the various ways culture and society affect the way we raise our children. I have written about various topics, but mostly parenting for The New York Times, The Washington Post, The Atlantic, The Guardian, and the BBC, among others. When not writing or thinking about writing, I can be found reading books, drinking tea, and doing nothing.
Mothers often feel discouraged and undervalued, but what if we expanded the definition of what mothering actually means? What if caregiving, in all its forms, wasn’t just an afterthought but the most important work humans can do? Through combining research and personal stories, Angela Garbes is making a passionate plea for recognizing the value of caregiving in our society.
I’ve had read too many parenting guides that put the responsibility for how their children turned out on the parents. Angela Garbes’s book is different. It’s thought-provoking, well-researched, and beautifully written. Garbes is absolutely right: to make a better life for children, we need societies that care for everyone.
From the acclaimed author of Like a Mother comes a reflection on the state of caregiving in America, and an exploration of mothering as a means of social change.
The Covid-19 pandemic shed fresh light on a long-overlooked truth: mothering is among the only essential work humans do. In response to the increasing weight placed on mothers and caregivers—and the lack of a social safety net to support them—writer Angela Garbes found herself pondering a vital question: How, under our current circumstances that leave us lonely, exhausted, and financially strained, might we demand more from American family life?…
Both of my parents were diagnosed with Alzheimer’s on the same day. The time period from the beginning hints of subtle oddities in their behavior and cognition, through their diagnosis and until their deaths was a decade. I worked full time as an elementary teacher during their illness and had always read to solve problems. Therefore, I sought any authors who would share their personal experiences with me. These stories sustained me. They saved me. They allowed me to know I was not alone. From that experience grew my own memoir, Alzheimer’s Daughter.
Susan Landeis dealt with rejection and jealousy from her own mom as she was a little girl and through her teenage years. What does one do when an estranged parent is diagnosed with dementia and needs care? It is a rare individual who reacts with the kindness and forgiveness of Landeis. Because of that generosity and love, or perhaps because her mother forgot the meanness and rejection she inflicted on her daughter in years past, Susan and her mom grew a beautiful relationship during those caregiving years, giving them both comfort in the end.
Susan always knew her relationship with her mother was different from that of other mothers and daughters. As a young girl, she struggled to cope with her mother's unpredictable behavior, rejection, and abandonment. At the age of sixteen, she left home and put it all behind her. Years later, her mother was diagnosed with a devastating illness, and Susan was suddenly faced with the difficult decision to care for both of her parents. In this inspiring, soul-searching memoir, Susan tells the story of a troubled childhood, her struggles as an adult, and her determination to find peace with her mother…
Karen Thornber is Harry Tuchman Levin Professor in Literature and Professor of East Asian Languages and Civilizations at Harvard. Her work brings humanistic insights to global challenges. Thornber is the author of the award-winning scholarly books Empire of Texts in Motion and Ecoambiguity as well as most recently Global Healing: Literature, Advocacy, Care. Current projects include books on gender justice in Asia, mental health, inequality/injustice, sustainability/climate change, and indigeneity.
Professor and psychiatrist Arthur Kleinman’s The Soul of Care movingly explicates the practical, emotional, and moral aspects of caregiving. Based on Kleinman’s experiences as the primary caregiver for his late wife Joan after she developed early-onset Alzheimer’s disease, this book skillfully reveals caregiving – however grueling, however much about enduring the unendurable – as resonating with emotional, moral, and, for many, religious meaning, and ultimately enabling us to realize our humanity most fully. Moreover, inspired by the work of Anne-Marie Slaughter, Kleinman poignantly argues for the importance of recognizing care as a basic human right.
A moving memoir and an extraordinary love story that shows how an expert physician became a family caregiver and learned why care is so central to all our lives and yet is at risk in today's world.
When Dr. Arthur Kleinman, an eminent Harvard psychiatrist and social anthropologist, began caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer's disease, he found just how far the act of caregiving extended beyond the boundaries of medicine. In The Soul of Care: The Moral Education of a Husband and a Doctor, Kleinman delivers a deeply humane and inspiring story of…
As both a lifelong traveler and reader, I cannot start an adventure without a great book. Having owned a Kindle since 2008, I consistently carry a virtual library, curating an assortment of captivating reads for every journey. As a travel journalist, I fly multiple times a month, which amplifies my need and understanding of the perfect in-flight companions; stories that transport and captivate. As an author with a memoir to my name, I appreciate the transformative power of storytelling. This blend of literary passion, frequent travel, and personal authorship has led me on my search for engaging, unforgettable books that mesmerize the reader.
Each of Lisa Genova’s books brings her deep understanding of neuroscience into the portrayal of a family's journey with a medical issue, making the novel both heart-wrenching and enlightening.
This book is an emotionally charged novel about a renowned pianist confronting the devastating progression of ALS. It captures the complexities of love, loss, and redemption.
I was especially drawn to this book since my aunt had a similar progression with the same illness. Genova’s compelling exploration of the human spirit and the transformative power of compassion always brings me to tears. As you soar through the skies, let this book be your poignant and immersive literary escape.
An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.
Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce-his divorce.
I have worked in senior living for over 25 years. I was the administrative director of both an assisted living facility as well as a memory care facility and then I worked for over 18 years in one of the top national Life Care Communities in the country. During this time, I helped thousands of families navigate the complex and confusing world of senior living. I wrote my book to help families make educated and informed decisions and know what they could do before a crisis! It is not if your parents will need help, it is when! I am passionate about passing on the knowledge of my years in this field.
An excellent workbook full of all the information you will need to stay organized and manage the medical and financial information you need to have on hand or give to family members who are either helping you or will be in the future.
You don’t need to reinvent the wheel; this book will provide you with needed reminders about what kind of information you need to gather before a crisis!
Trusted for more than three decades by family caregivers and professionals alike, this comprehensive and reassuring caregiving guide offers the crucial information you need to look after your elders and plan for the future.
“The most complete resource between two covers.”—Woman’s Day
Being a caregiver for aging parents, close friends and family, and other elders in your life is an overwhelming experience, whether you are one who has stepped into this role without warning or one who is also contemplating their own care plan. Now in its fourth edition, The Complete Eldercare Planner will help you navigate today’s complex caregiving…
