Our team at Dignity Hospice recognizes that you and your loved ones are experiencing something difficult and life-changing. You may be uncertain of the road ahead. You may be feeling scared. Or angry. We understand and validate those emotions – they are a completely normal part of grieving. To help you navigate this difficult journey, we have put together a brief overview of some wonderful books and information. These books are made to be a resource for you, whether you are the patient, family, or caregiver.
Recommended Reading:
Resources
My Friend, I Care.
A booklet intended for the newly grieving. It addresses the normalcy of grieving and stages of grief while offering suggestions for moving forward into living. The grieving process is as foreign to us as death. The experience is forced upon us by life situations that have been beyond our control. We become angry, depressed, fearful, and anxious. We do not know that all these feelings together represent grief. My Friend, I Care offers simple explanations for the thoughts and feelings generated by grief. It is short enough to read and reread for the guidance offered within.
Gone From My Sight
The biggest fear of watching someone die is fear of the unknown; not knowing what dying will be like or when death will actually occur. The booklet “Gone From My Sight” explains the process of dying from the disease in a simple, gentle yet direct manner. Dying from disease is not like it is portrayed in the movies. Death from disease is not happenstance. It doesn’t just occur; there is a process. People die in stages of months, weeks, days, and hours. “Gone From My Sight” is literature used to reduce fear and uncertainty; to neutralize the fear associated with dying. It is designed to help people understand dying, their own or someone else’s.
How Do I Know You?
Caring for someone with dementia presents different challenges than caring for people with other health care issues. It doesn’t “play by the rules” that signify approaching death from disease or old age. This booklet outlines the issues and progress that a person with dementia will probably follow.
The aim of this booklet is to provide information regarding approaching end of life to those people, family and significant others, who are caring and making decisions for someone with dementia. It would be given to the family upon admission to the Palliative Care program or to any family that is having to address the eating and not eating dilemma.
The Eleventh Hour
The hours to minutes before imminent death are generally filled with fear and helplessness for anyone at the bedside. Fear because we have inaccurate role models from movies and TV and helplessness because there is no “fixing” death. This brings the question, “What do we do?” “The Eleventh Hour” is a booklet that offers information, ideas and support on how to care for a person in the hours to minutes before death and just after. The aim of this booklet is to help those present at the bedside create a meaningful, comforting memory of their loved one’s journey from life in this world. For the hands-on-caregiver, family, or professional, “The Eleventh Hour” is a guiding resource. It is appropriate as a textbook for volunteer training in Transitional and Vigil programs, for nursing facilities, and for parish nursing and Hospice/Palliative Care teaching. Most of all, it is for families faced with caring for their loved one in the hours of approaching death.
PAIN AT THE END OF LIFE
There is much fear and misconception surrounding pain management at end of life. Pain at End of Life addresses, in fifth grade, non-medical terminology: pain as it relates to the dying process fear of overdosing and addiction standardized dosages around the clock administration laxatives uses of morphine sedation as it relates to dying supplemental therapies This booklet is intended for families in the weeks to days before death, for education of hospital and nursing facility staff, as well as anyone interested in, or dealing with, narcotics and pain management as end of life approaches. It can be used with Gone From My Sight and The Eleventh Hour as part of the plan of care for hospice patients.
END OF LIFE SERIES
The End of Life Guideline Series is a compilation of Barbara Karnes’ five books on the end of life. When you or someone you know is faced with having a disease that may not be treatable, life changes instantly. At such a time people enter a phase of life for which they often have no preparation. End of Life Guideline Series informs people on how to live with a life-threatening illness, what to expect when someone is dying, what to do to help, managing pain, how to address the fear of death and dying, and how to grieve.
WHEN THINGS FALL APART
How can we live our lives when everything seems to fall apart—when we are continually overcome by fear, anxiety, and pain? The answer, Pema Chödrön suggests, might be just the opposite of what you expect. Here, in her most beloved and acclaimed work, Pema shows that moving toward painful situations and becoming intimate with them can open up our hearts in ways we never before imagined. Drawing from traditional Buddhist wisdom, she offers life-changing tools for transforming suffering and negative patterns into habitual ease and boundless joy.
CARING FOR THE DYING
Caring for the Dying describes a whole new way to approach death and dying. It explores how the dying and their families can bring deep meaning and great comfort to the care given at the end of a life. Created by Henry Fersko-Weiss, the end-of-life doula model is adapted from the work of birth doulas and helps the dying to find meaning in their life, express that meaning in powerful and beautiful legacies, and plan for the final days. The approach calls for around-the-clock vigil care, so the dying person and their family have the emotional and spiritual support they need along with guidance on signs and symptoms of dying. It also covers the work of reprocessing a death with the family afterward and the early work of grieving.
Unfortunately, there are times when children are the ones in need of resources to help guide them through these experiences and trying times. The resources provided below will help children and adults talk about and navigate through these difficult topics together with age-appropriate language and exercises.
Recommended For Children:
Someone I loved died
It gently leads children through grief with age-appropriate words and solid biblical truth that understands a child’s hurting heart. The added interactive resources ensure this book will become a treasured keepsake. Once complete, children create a memory book of the loved one’s life. And it offers grown-ups a tool that turns what could be a difficult season into a meaningful time of healing.
The Invisible String
Parents, educators, therapists, and social workers alike have declared The Invisible String the perfect tool for coping with all kinds of separation anxiety, loss, and grief. In this relatable and reassuring contemporary classic, a mother tells her two children that they’re all connected by an invisible string. “That’s impossible!” the children insist, but still they want to know more: “What kind of string?” The answer is the simple truth that binds us all: An Invisible String made of love. Even though you can’t see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love. Does everybody have an Invisible String? How far does it reach? Does it ever go away? This heartwarming picture book for all ages explores questions about the intangible yet unbreakable connections between us, and opens up deeper conversations about love.
The memory box. A book about grief
From the perspective of a young child, Joanna Rowland artfully describes what it is like to remember and grieve a loved one who has died. The child in the story creates a memory box to keep mementos and written memories of the loved one, to help in the grieving process. Heartfelt and comforting, The Memory Box will help children and adults talk about this very difficult topic together. The unique point of view allows the reader to imagine the loss of any they have loved – a friend, family member, or even a pet. A parent guide in the back includes information on helping children manage the complex and difficult emotions they feel when they lose someone they love and suggestions on how to create their own memory box.
What’s Happening to grandpa?
Kate has always adored her grandpa’s storytelling – but lately he’s been repeating the same stories again and again. One day, he even forgets Kate’s name. Her mother’s patient explanations open Kate’s eyes to what so many of the elderly must confront: Alzheimer’s disease and other forms of memory loss. Determined to support her grandfather, Kate explores ways to help him – and herself – cope by creating a photo album of their times together, memories that will remain in their hearts forever.
LIFETIMES
Lifetimes is a moving book for children of all ages, even parents too. It lets us explain life and death in a sensitive, caring, beautiful way. Lifetimes tells us about beginnings. And about endings. And about living in between. With large, wonderful illustrations, it tells about plants. About animals. About people. It tells that dying is as much a part of living as being born. It helps us to remember. It helps us to understand.
Weeds in nana’s garden
A young girl and her Nana hold a special bond that blooms in the surroundings of Nana’s magical garden.Then one day, the girl finds many weeds in the garden. She soon discovers that her beloved Nana has Alzheimer’s Disease; an illness that affects an adult brain with tangles that get in the way of thoughts, kind of like how weeds get in the way of flowers.As time passes, the weeds grow thicker and her Nana declines, but the girl accepts the difficult changes with love, learning to take-over as the garden’s caregiver.Extending from the experience of caring for her mother, artist Kathryn Harrison has created this poignant children’s story with rich illustrations to candidly explore dementia diseases, while demonstrating the power of love. It is a journey that will cultivate understanding and touch your heart.After the story, a useful Question and Answer section is included.
Grief and loss take us all by surprise regardless of age: One minute you may be sobbing and the next you feel frustrated or angry with the situation you find yourself in. To help you navigate the path of loss, here are further resources to help you.
STILL ALICE
Alice Howland is proud of the life she worked so hard to build. At fifty years old, she’s a cognitive psychology professor at Harvard and a world-renowned expert in linguistics with a successful husband and three grown children. When she becomes increasingly disoriented and forgetful, a tragic diagnosis changes her life—and her relationship with her family and the world—forever. As she struggles to cope with Alzheimer’s, she learns that her worth is comprised of far more than her ability to remember.
At once beautiful and terrifying, Still Alice is a moving and vivid depiction of life with early-onset Alzheimer’s disease that is as compelling as A Beautiful Mind and as unforgettable as Ordinary People.
Dying Well
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 in the final months, weeks, and even days of life. It is a companion for families, showing them how to deal with doctors, how to talk to loved ones—and how to make the end of life as meaningful and enriching as the beginning.
CHICKEN SOUP FOR THE GRIEVING SOUL
When you’re grieving, it helps to read stories from other people who have been through the same thing. Losing a family member or dear friend is a shared human experience. You’ll find comfort, inspiration and camaraderie in these revealing personal stories from other people who have lost loved ones.
FINAL GIFTS
In this moving and compassionate classic—now updated with new material from the authors—hospice nurses Maggie Callanan and Patricia Kelley share their intimate experiences with patients at the end of life, drawn from more than twenty years’ experience tending the terminally ill.
Through their stories we come to appreciate the near-miraculous ways in which the dying communicate their needs, reveal their feelings, and even choreograph their own final moments; we also discover the gifts—of wisdom, faith, and love—that the dying leave for the living to share.
Filled with practical advice on responding to the requests of the dying and helping them prepare emotionally and spiritually for death, Final Gifts shows how we can help the dying person live fully to the very end.
THE DIVINE ART
OF DYING
In this moving and compassionate classic—now updated with new material from the authors—hospice nurses Maggie Callanan and Patricia Kelley share their intimate experiences with patients at the end of life, drawn from more than twenty years’ experience tending the terminally ill.
Through their stories we come to appreciate the near-miraculous ways in which the dying communicate their needs, reveal their feelings, and even choreograph their own final moments; we also discover the gifts—of wisdom, faith, and love—that the dying leave for the living to share.
Filled with practical advice on responding to the requests of the dying and helping them prepare emotionally and spiritually for death, Final Gifts shows how we can help the dying person live fully to the very end.
STAY CLOSE AND DO NOTHING
In this moving and compassionate classic—now updated with new material from the authors—hospice nurses Maggie Callanan and Patricia Kelley share their intimate experiences with patients at the end of life, drawn from more than twenty years’ experience tending the terminally ill.
Through their stories we come to appreciate the near-miraculous ways in which the dying communicate their needs, reveal their feelings, and even choreograph their own final moments; we also discover the gifts—of wisdom, faith, and love—that the dying leave for the living to share.
Filled with practical advice on responding to the requests of the dying and helping them prepare emotionally and spiritually for death, Final Gifts shows how we can help the dying person live fully to the very end.
HOW WE DIE: REFLECTIONS…
A runaway bestseller and National Book Award winner, Sherwin Nuland’s How We Die has become the definitive text on perhaps the single most universal human concern: death. This new edition includes an all-embracing and incisive afterword that examines the current state of health care and our relationship with life as it approaches its terminus. It also discusses how we can take control of our own final days and those of our loved ones. Describes death related to various illnesses.
WHEN BREATH
BECOMES AIR
When Breath Becomes Air is a memoir about Paul Kalanithi’s experiences as a doctor and as a terminally ill patient. At the age of thirty-six, on the verge of completing a decade’s worth of training as a neurosurgeon, Paul Kalanithi was diagnosed with stage IV lung cancer. One day he was a doctor treating the dying, and the next he was a patient struggling to live. The book discusses Kalanithi’s lifelong fascination with questions of human biology, mortality, and meaning. It then examines how these questions are intensified by the author’s own confrontation with lung cancer, sickness, and death.