After my dad died, I didn’t know where to turn. People felt uncomfortable talking to a seventeen-year-old girl about her dead dad. They felt even more uncomfortable talking to me about it one, two, ten years later. Still, I couldn’t, can’t, stop thinking about it. I turned, then, to books. These books made and make me feel seen. They aren’t about “moving on” or “letting go” but the ways in which leaning into grief’s deep well connects us to love’s true depths. These books are honest and pure, and if you don’t know what to say to a friend who’s mourning, let these authors speak for you.
Joy might not be the first thing you think of when
considering grief, but then maybe you haven’t read Ross Gay.
Gay understands
that joy exists because of grief, not as a counterbalance, but in a deeply
reciprocal relationship. As his father is dying, he presses their faces
together, and in his father’s freckles, he sees seeds, a garden. It is just one
instance in this book where Gay recognizes that what grows from loss is love.
His book clarifies what I know to be true: that when we fall into the hole of
loss, we find ourselves in a deep well of love.
A collection of gorgeously written and timely pieces in which prize-winning poet and author Ross Gay considers the joy we incite when we care for each other, especially during life's inevitable hardships.
In "We Kin" he thinks about the garden (especially around August, when the zucchini and tomatoes come on) as a laboratory of mutual aid; in "Share Your Bucket" he explores skate-boarding's reclamation of public space; he considers the costs of masculinity in "Grief Suite"; and in "Through My Tears I Saw," he recognizes what was healed in caring for his father as he was dying.
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…
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…
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.
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 landscape while addressing your unique needs.
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…
I have been teaching college students about aging since I was in my late 20s. The audacity! Now that I am officially in the “young-old” category I used to describe to my students, I more fully appreciate the social constructions of aging that affect elders, the medical conditions that can derail plans for “a good old age,” and the challenges we all face in attempting to live with meaning and purpose as we grow older. In addition to teaching, writing about, and researching various aspects of aging, especially aging with various type of dementia, my work has addressed the positive and negative ways religious faith can shape how people cope with aging.
Janet Ramsey’s experiences as a chaplain, therapist, and family caregiver have taught her that people living with dementia deeply desire interactions with others that uphold their dignity and offer them love and forgiveness. She interviewed many dementia caregivers and throughout the book, she lets them express what dignity and grace mean in their everyday interactions with loved ones. Each chapter concludes with a reflection on a different Psalm, reflections that speak directly to the challenges and opportunities for growth that come with caregiving. Readers need not be Christian or in any way religious to appreciate the warmth and humanity conveyed throughout this book.
"I'm a stranger in a strange land," sighed the dignified gentleman Janet L. Ramsey met walking down the care-center hallway. Those words, her first glimpse of the confusion that comes with dementia, led her into a lifetime of work with older adults.
If you have been diagnosed with dementia or you are accompanying someone with this illness, you may find yourself on a journey that began with a sudden diagnosis and an acute sense of panic. Or perhaps your journey started gradually, as you noticed changes in yourself or in your partner or parent.…
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.
This is the #1 caregiving book of hope I’d want my family to read, should I ever be diagnosed with dementia. Helene Berger’s memoir shares her experiences caring for her husband after he was diagnosed with Alzheimer’s. I learned the many ways she discovered to make life more meaningful for her husband, especially through art (much of his artwork through the years is included). It reiterated to me that the attitude of a caregiver can make all the difference. With kindness and patience, Helene teaches how to be a loving caregiver.
CHOOSING JOY is a book of hope. Most accounts of Alzheimer's describe a process of irreversible degeneration and decline. This is a rare success story, the story of a woman who refused to surrender to the implications of her husband's diagnosis, instead inspiring him to join her in making every moment they had together meaningful and precious. A few months after their fiftieth anniversary, Ady Berger was diagnosed with Alzheimer's. He responded, I don't want to live anymore. His wife, Helene, was determined to find creative ways to make their lives as fulfilling as possible, for as long as possible.…
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.
During my decades of working with caregivers as a dementia care expert, I have heard many accounts of what the experience is like—from the sad and hollow to experiences rich in significance. Everyone faces obstacles when caring for a loved one; some of these obstacles come in the form of uncomfortable or painful emotional histories or past unresolved conflicts. After each opportunity to raise awareness and understanding about how dementia impacts individuals, their families, and their communities, I have been gratified to witness enhanced feelings of hope and comfort for all involved. It is my hope that through this book I will enter your home or your professional caregiving setting and work alongside you.
The 36-Hour Day is a comprehensive guide for caregivers that is often recommended by physicians to the families caring for a loved one with any cause of dementia symptoms or cognitive decline. I found the information provided very practical on the medical, legal, financial, and emotional aspects of caring for an individual presenting any level of dementia symptoms.
The clinical insights provided were very helpful, and the information for the caregiver throughout on the value of accessing outside help is such an important reminder for them to not try and navigate this dementia care journey alone!
Combining practical advice with specific examples on how to cope with the challenges associated with caring for a loved one with dementia symptoms make this an excellent guide for the family caregiver.
Through five editions, The 36-Hour Day has been an essential resource for families who love and care for people with Alzheimer disease. Whether a person has Alzheimer disease or another form of dementia, he or she will face a host of problems. The 36-Hour Day will help family members and caregivers address these challenges and simultaneously cope with their own emotions and needs. Featuring useful takeaway messages and informed by recent research into the causes of and the search for therapies to prevent or cure dementia, this edition includes new information on * devices to make life simpler and safer…
Juggling roles as a professor, nurse practitioner, author, mother, and grandmother would seem to limit my reading time but instead, I always have a book in my car, on my phone, or in my hands. I read broadly and enjoy all genres, from fiction to nonfiction, poetry to medical comics, as well as the creative essay columns nursing journals are beginning to embrace. In particular, I gravitate toward resources that help nurses create a positive relational workplace where their best efforts can be even more effective. Whether it’s ending the RN-RA (relational aggression) Rut, using poetry to express feelings about caregiving, or writing creatively about the many aspects of nursing, I am ready to read! And of course, the best part of reading is having a discussion with colleagues or friends about what exactly that book was about…
This story about four patients cared for by nurse practitioner and acclaimed poet Cortney Davis reminds me a bit of pandemic narratives in that she works in a public clinic with individuals whose financial, emotional, or social situation puts them at risk. Since her patients are all female, their needs are related to gynecology, but the bigger story is Cortney’s ability to connect with them on a humanistic level and share their hopes, concerns, and fears.
"I cannot ignore the reality of the body, its glorious beginnings and its subtle endings," writes Cortney Davis in this intimate and startlingly original account of her work at a women's clinic. A poet and nurse-practitioner with twenty five years' experience, Davis reveals the beauty of the body's workings by unfolding the lives of four patients who struggle with its natural cycles and unexpected surprises: pregnancy and childbirth, illness and recovery, sexual dysfunction and sexual joy. An abundance of solid medical information imbues every graceful line.
Davis's eternal question to herself is: How do you help someone to not merely…
By Andrew E. Budson and Maureen K. O'Connor
Author
Why are we passionate about this?
As a neurologist and neuropsychologist team who have spent their entire clinical, teaching, and research careers focused on individuals and their families experiencing memory loss, Alzheimer’s disease, and dementia, our goal is simple. We want to empower individuals and their families with the tools they need to manage memory loss, Alzheimer’s disease, and dementia. We work to balance pharmacological and nonpharmacological management, as well as the needs of the individual with those of their family. Reading books like the ones in our list plus articles in medical journals keeps us current with the progress in the science of dementia and the humanity of individuals and families living with the disease.
Now in its 7th edition, this book is the classic guide to caregiving for individuals with dementia. Comprehensive, and filled with stories and anecdotes, it is packed with valuable information on dementia and the behaviors that dementia engenders. We have read it several times and have recommended it to hundreds if not thousands of families.
With over 3.5 million copies sold, the bestselling guide to understanding and caring for people with dementia is now completely revised and updated!
For 40 years, The 36-Hour Day has been the leading work in the field for caregivers of those with dementia. Written by experts with decades of experience caring for individuals with memory loss, Alzheimer's, and other dementias, the book is widely known for its authoritativeness and compassionate approach to care. Featuring everything from the causes of dementia to managing its early stages to advice on caring for those in the later stages of the disease, it is…
During my decades of working with caregivers as a dementia care expert, I have heard many accounts of what the experience is like—from the sad and hollow to experiences rich in significance. Everyone faces obstacles when caring for a loved one; some of these obstacles come in the form of uncomfortable or painful emotional histories or past unresolved conflicts. After each opportunity to raise awareness and understanding about how dementia impacts individuals, their families, and their communities, I have been gratified to witness enhanced feelings of hope and comfort for all involved. It is my hope that through this book I will enter your home or your professional caregiving setting and work alongside you.
This book shows you how to meet many of the daily challenges of caring for someone with dementia. Illustrated through the heartfelt stories of others this book shows your how The Best Friends method brings dignity to the lives of those presenting dementia symptoms and those who are caring for them.
I found the explanation of Alzheimer’s disease and dementia symptoms very interesting and helpful, specifically how this type of loss and experience can make the individual feel. I appreciated learning additional and successful ways to respond and communicate to many situations that caregivers face when caring for any individual with any cause of dementia symptoms.
Dementia care is complex and different for every person, and I am always looking for new perspectives and care approaches to share with family and professional care providers that can give confidence and feelings of empowerment to anyone on their individual dementia care journey-and…
More than 5 million Americans are currently living with Alzheimer's disease or a related form of dementia. By the year 2030, experts estimate that as many as 66 million people around the world will be faced with this life-altering disease. Unfortunately, these staggering statistics impact millions of caregivers, too. Compared with all types of caregivers, those who assist someone with dementia experience the highest levels of burnout, depression, poor health, and premature death. A Dignified Life, Revised and Expanded offers hope and help with a proven approach.
Ten years ago, the first edition of A Dignified Life changed the way…
