Recommended Reading List For Parents, Adults and some
Young Adults – Palliative Care and Bereavement
Books on this list include fiction, non-fiction, and memoir; many have been written by bereaved parents or professionals themselves. They have been personally read and reviewed; each also appears on recommended reading lists of CHiPPS (Children’s Project on Palliative/Hospice Services of the National Hospice and Palliative Care Organization), the American Academy of Pediatrics, Section on Pediatric Palliative Care, and/or NHPCO (National Hospice and Palliative Care Organization). Brief descriptions or published reviews of each title are intended to provide guidance concerning topics and themes.
The Four Things That Matter Most
Four simple phrases—“Please forgive me,” “I forgive you,” “Thank you,” and “I love you”—carry enormous power to mend and nurture our relationships and inner lives. These four phrases and the sentiments they convey provide a path to emotional well-being, guiding us through interpersonal difficulties to life with integrity and grace. Dr. Byock demonstrates the value of “stating the obvious” and provides practical insights into the benefits of letting go of old grudges and toxic emotions. His stories help us to forgive, appreciate, love, and celebrate one another and live life more fully.
The Spirit Catches You and You Fall Down
The Spirit Catches You and You Fall Down explores the clash between a small county hospital in California and a refugee family from Laos over the care of Lia Lee, a Hmong child diagnosed with severe epilepsy. Lia’s parents and her doctors both wanted what was best for Lia, but the lack of understanding between them led to tragedy. Winner of the National Book Critics Circle Award for Nonfiction, the Los Angeles Times Book Prize for Current Interest, and the Salon Book Award.
The Fault in our Stars
A novel. Despite the tumor-shrinking medical miracle that has bought her a few years, Hazel has never been anything but terminal, her final chapter inscribed upon diagnosis. But when a gorgeous plot twist named Augustus Waters suddenly appears at Cancer Kid Support Group, Hazel’s story is about to be completely rewritten. Insightful, bold, irreverent, and raw, The Fault in Our Stars brilliantly explores the funny, thrilling, and tragic business of being alive and in love.
Death be Not Proud
A father’s memoir. Johnny Gunther was only seventeen years old when he died of a brain tumor. During the months of his illness, everyone near him was unforgettably impressed by his level-headed courage, his wit and quiet friendliness, and, above all, his unfaltering patience through times of despair. This deeply moving book is a father’s memoir of a brave, intelligent, and spirited boy.
“A lyrical, heartbreaking and heartwarming account of the author’s three-year-old daughter’s illness and death. Among the values she learns from her extraordinary child’s experience are joy, a Buddha-like stillness, candor and openness. When Hannah’s seven-year-old brother asks the author their mom questions about death, Hannah is fascinated and declares that she wants to be a butterfly when her body dies. When their church has a special service to honor and pray for Hannah, she’s delighted. Housden, too, offers readers a gift, particularly those seeking to help a loved one through the process of dying and themselves through the grieving process”. ~ Publisher’s Weekly
A Broken Heart Still Beats: After Your Child Dies
Organized by a journalist and a psychotherapist, each of whom has lost a child, A Broken Heart Still Beats is a remarkable compilation of poetry, fiction, and essays about the pain, stages of grief, and the coping and healing process that follows the death of one’s child. The chapters are organized thematically and chronologically, from “Thunderstruck,” the point at which parents first learn they have lost a child, to “The Legacy of Loss,” wherein the authors and the anthology selections speak to the “steely hard and cold” life lessons this type of bereavement brings. This compilation of poems and excerpts draws from short stories, novels, biographies, and autobiographies that focus on the death of a child as relayed through classic and contemporary world literature.
The Grieving Garden: Living with the Death of a Child
Written by two bereaved mothers, The Grieving Garden invites bereaved parents into personal conversations with a diverse group of fathers and mothers who share the same loss. “When the unthinkable happens, most of us long for a community of people who understand what we are going through. When that unthinkable event is the death of a child, we look for reassurance that we can still go on to lead meaningful lives. This book provides such a community, in the candid conversations of others who’ve been there. Though they pull no punches, the ultimate effect is life-affirming. I recommend it highly to all bereaved parents and to anyone who cares about them.” ~ Eleanor Coppola
The Worst Loss: How Families Heal from the Death of a Child
The death of a child is a loss like no other. Parents experience the symptoms of grief more intensely and for far longer than with any other loss. For the dead child’s siblings, their family is never the same again. How do families survive this worst loss? What helps people heal? What have families and clinicians learned that would help others through their loss and enable them to rebuild their lives? The author draws on families’ own stories as well as research on grieving to help families address these questions. “Parents mourning the loss of a child will find that Rosof’s many insights ring true. An excellent primer.” ~ Library Journal
The Still Point of the Turning World
What does it mean to be a success? To be a good parent? To live a meaningful life? Emily Rapp thought she knew the answers when she was pregnant with her first child. But everything changed when nine-month-old Ronan was diagnosed with Tay-Sachs disease, a rare and always-fatal degenerative disorder. He was not expected to live beyond the age of three. Rapp and her husband were forced to re-evaluate everything they thought they knew about parenting and to learn to parent without a future. “A story of a mother’s endurance in the face of her son’s ‘death sentence’ but also a meditation on how our inevitable mortality should inspire us all to live life ferociously… Rapp’s urgency is at once instructive and infectious.” ~ NPR
The Paradoxes of Mourning: Healing Your Grief with Three Forgotten Truths
When it comes to healing after the death of someone we have loved, our culture has it all wrong. We’re told to be strong when what we really need is to be vulnerable. We’re told to think positive when what we really need is to wallow in the pain. And we’re told to seek closure when what we really need is to welcome our natural and necessary grief. The Paradoxes of Mourning discusses three truths that grieving people used to know and respect but in the last century, seem to have forgotten: 1. You must make friends with the darkness before you can enter the light. 2. You must go backward before you can go forward. 3. You must say hello before you can say goodbye.