Caring for a terminally ill loved one can be the single biggest challenge of your life. Drawing from her experience sitting with over 500 people as they died and caring for her own terminally ill father, Dr. Lani Leary gently guides caregivers, family, and friends through the difficult transitions of illness, death, and bereavement.
No One Has to Die Alone offers the practical skills, vocabulary, and insights needed to truly address the needs of a dying loved one while caring for yourself through the process. Dr. Leary shows both patient and caregiver how to rise above feelings of fear and isolation to find peace and meaning in each person’s unique end-of-life experience.
Whether used as a reference book to address a particular challenge or read from start to finish, this is a must-read for anyone facing death or the loss of a loved one. You’ll learn:
• how to listen to and support a loved one’s needs;
• what to expect as a loved one declines and the different grieving processes and tasks;
• the key to supporting a grieving child;
• what resources are available for patients and caregivers;
• the lessons of near-death experiences and the value of after-death communications.
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|Publisher:||Atria Books/Beyond Words|
|Product dimensions:||5.50(w) x 8.40(h) x 0.80(d)|
About the Author
Table of Contents
Foreword Jean Watson ix
How to Use This Book xxiii
Part I Making a Difference through Illness, Dying, and Death 1
Introduction: My Story 3
1 How We Die Matters 13
2 We Can Make a Difference 25
3 Dying May Be Painful; Death Is Not 55
4 Death Is Not the End 69
5 We Can Cope 79
Part II Making a Difference through Bereavement 97
6 Grieving Is a Process 99
7 We Each Grieve in Unique Ways 109
8 Children Grieve Differently than Adults 131
9 Validation Is the Key to Resolving Grief 149
10 We Can Find Meaning in Loss 167
Part III Recommended Resources 183
Appendix A Letters on Death and Dying 185
Appendix B Letters and Resources on Grief 197
Appendix C Resources and Notes for Caregivers (Professional, Family, Volunteer) 223
Appendix D Notes and Current Research on Near-Death Experiences 227
Appendix E Notes and Current Research on After-Death Communication 237
Appendix F A Caregiver's Breathing Meditation 243
Appendix G A Healing Meditation for Grief 245
Reading Group Guide
This reading group guide for No One Has to Die Alone includes discussion questions, ideas for enhancing your book club, and a Q&A with author Lani Leary. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.
Topics & Questions for Discussion
1. What was your reaction to the introductory story of the death of Lani’s mother? What deaths or losses in your life did it remind you of?
2. In chapter 1, the author contends that, “Our fears and anxieties are the barriers to compassionate care,” and that those fears stem from one’s attitudes, assumptions, lack of experience, and lack of knowledge. When in your life’s story did you feel that you could not handle some experience of death, dying, or loss? What assumptions or lack of experience impeded you?
3. “There is no one right way to die” may challenge one of your assumptions. Discuss your “ideal death” and allow each other to describe and explain their preference.
4. Chapter 4 describes different roles that a caregiver might adopt. Which role(s) are you most comfortable with? Most trained for? Which would you want to avoid or feel uncomfortable with?
5. Leary feels strongly that denial can be an appropriate coping strategy at times. What do you feel is the difference between offering hope and participating in denial? Share a life experience when being in denial was helpful, and when offering hope was not helpful.
6. On page 56, Leary shares her near death experience and what it meant to her. How does she use the lessons learned to inform her work with the dying and the bereaved?
7. No One Has to Die Alone discusses ways to address a dying person’s fear of being emotionally or physically abandoned at the end of life. Page 72 refers to Leary’s common experiences with patients who die alone when family members step out of the room. What are your thoughts about or experiences of a loved one dying when no one was present?
8. When you have been grieving a loss, what have others said to you that was the most helpful? The most hurtful? What have others done for you that was helpful or less helpful?
9. On page 123, Leary describes the differences between masculine and feminine styles of grief. How might this distinction make a difference in how you help a friend who is grieving? How would you describe your style of grief?
10. Children need help understanding death and finding expression for their feelings. Can you remember a situation in your youth when you did not receive the guidance that might have made a difference? What is it that you missed and needed? How has that experience shaped you?
11. What are your experiences and feelings about the concept that “death does not end a relationship?” Have you had a sense of contact from someone in your life that has died? What did that contact mean or communicate to you?
Enhance Your Book Club
1. Create a loss line that identifies the many different kinds of losses you have faced, when they happened, and the meaning you attributed to the loss at that time.
2. Set up an excursion to a funeral home and discuss funeral options with the funeral home director. View caskets and inquire about different burial options and customs.
3. Watch a movie dealing with death and discuss your feelings, fears, beliefs, and assumptions connected to the events and your reactions. Some examples of movies include “Steel Magnolias,” “The Doctor,” “Terms of Endearment,” “’Night Mother,” “My Life,” or “Dead Poets Society.”
4. An assertion of the book is that if a person confronts his or her own mortality, she will be capable of living life more fully. Think about ways that you might confront your mortality:
a. Contact your local organ procurement agency and get information.
b. Make a decision about your willingness to be an organ donor.
c. Discuss your decision with your family members.
d. Sign an organ donor card or your driver’s license.
e. Ask family members if they have thought and talked about donation.
f. Make decisions about your own funeral or memorial service. Write them down and talk about them with your family.
g. Pre-pay for funeral arrangements.
h. Write a will and healthcare power of attorney.
5. As a group, talk about what each of you fears most about the process of dying—about your death—and brainstorm what you can do to confront that fear and soften it.
A Conversation with Lani Leary
How did you come to write No One Has to Die Alone?
I began writing when I was 13 years old after my mother’s sudden and unexpected death as a way to help myself understand my feelings, process my grief, and cope with her loss. I have been writing ever since. As I worked in hospices with dying patients, friends and professionals often asked me: “What do you do? What do you say? What gets you through all the sadness?”
Years later when I was a professor of death studies, my graduate students reported that the experiential exercises that confronted their fears, assumptions, and inexperience with dying had a significant impact on their relationships, health, and life choices. They referred to that class as “Graduate Soul Work.” It became evident to me that there was a great need to speak to those issues surrounding death that were “in the closet,” and that so many did not know how to begin talking about. This book was originally titled Ten Things I Wish I Had Known Before My Mother Died.
I spoke at a conference for the Foundation of End of Life Care. The program was filmed and aired on public radio, and was the most requested rebroadcasted show. Letters from viewers, patients, families, and professionals led me to believe that others might benefit from the lessons I have learned over the past 25 years working with more than 500 dying patients and thousands of grieving family members.
What is the one thing you want readers to take away after reading your book?
I want readers to know that they can make a difference: that they have more power and more choices in the way that they can respond to the challenges of illness, dying, and grief. I want them to embrace their ability to adopt healthy, healing attitudes and learn new skills that will help their loved ones live right up to the moment of their last breath. I want those left to grieve to know that they can cope, feel and honor all of their feelings, and grow from the experience of responding to end-of-life needs and their experience of loss. I want readers’ fears and misconceptions about death, dying, illness, and grief to change so that we can accept all of life and respond with compassion.
What do you feel sets this book apart from other books on the subject?
There are many helpful books on the market about death, dying, and grief but many are replete with theory, data, or stories that end without being “translated” into immediate, practical, and realistic action items that the reader can use in their personal situation. Readers will benefit from this book because I have broken down the theories and stories into meaningful ways the reader can apply the information.
The book introduces “ways to say it” to help people begin difficult conversations and help people feel comfortable responding to painful situations. There are chapters describing activities that children can help with in order to reduce mitigate fears, teach them skills, and include them in this sacred transition. The book helps parents know what to expect, what to address, and how to talk to their children during illness, dying, and bereavement. And to respond to professionals’ report that they often feel helpless in the face of a terminal illness, the book reports how to respond to what the dying have told me most matters to them. This book will raise readers’ confidence to be able to engage and “stay the course,” and in so doing, will bring relief to their dying and grieving loved ones.
What are the biggest misconceptions that we have about death?
The greatest misconceptions in our culture about death are that death is:
· A failure. (As when someone judges that “the patient did not try hard enough…or the illness was their fault.)
· A punishment. (There is often a distinction between “exceptional cancer patients” or those in remission versus those whose illness is progressing. While we are responsible for caring for ourselves, there are many causes of decline that are out of our control.)
· A “dial tone” or the end of consciousness. (Extensive research and reports from all over the world and hundreds of millions of people who have a near death experience refutes this theory)
· Painful. (Based on what patients who have been resuscitated report, what the family may observe on the “outside” is not what the patient is experiencing on the “inside” during the process of letting go.)
· Is the enemy, a negative that should be fought at all cost. (The dying report that in many circumstances, when the body’s condition and the quality of life can not be resumed, the end of illness is a reprieve and a relief. The dying do not fear their imminent death after irreversible decline as much as they fear being emotionally abandoned and physically shunned.)
· Means your loved one has abandoned or left you. (One’s interpretation of a death or the meaning attributed to the death can cause years of exacerbated grief and pain.)
· Is the end of a relationship. (One of the tasks of healthy grief is to come to an understanding of the ongoing-ness of love and the relationship with the deceased, that is, to “place” them someplace.)
Is there are “right” way to grieve?
There are as many ways to grieve as there are people. Grief is personal and unique to each individual, like a fingerprint. Children will grieve differently in intensity, duration, and language than adults. Masculine grief is expressed differently than feminine expressions of grief. Generations demonstrate and talk about their grief differently. All people come to their own understandings and attribute different personal meanings to their loss.
How one moves through their grief depends on several factors. Some of the factors include: the coping strategies learned in life; the experiences one has with previous deaths; the quality of the relationship with the deceased; the circumstances of the death; one’s religious beliefs and customs of support; the emotional support from family and friends; and the meaning attributed to the death.
As there is no right way to grieve, there is also no right amount of time to grieve. Each person finds their own timetable and may experience their grief in waves or spurts of different intensity that come up suddenly many years after a loss. Anniversary reactions are common, and sensory reminders of a loved one can return the bereaved to the center of their grief at any time.
If we are to be helpful, it is best that we not judge, compare, direct, or use language that includes “should”, “must”, or “need to” when comforting the bereaved. We do not need to understand another’s grief in order to be helpful; rather, we are most helpful when we are present, open, and validating. Denial may be part of the process of grieving and can be a protective coping response to an experience that is perceived as threatening and overwhelming.