Helping a dying friend
• Advice for helping a friend with cancer (Suleika Jaquad, author of the Life, Interrupted blogs).
• An Old Friend Calls in a Promise ( a moving story by Bayla Kraft, about how helping her dying friend Karen changed the way she experienced her own life)
• The Art of Being a Healing Presence: A Guide for Those in Caring Relationships by James E. Miller with Susan Cutshall. How to be present in a way that is healing, nourishing, and potentially even transforming.
• At the end of a loved one's life, why is it so hard to let go? (Craig Bowron, Washington Post, 2-22-12). Craig Bowron is a hospital-based internist in Minneapolis. "When families talk about letting their loved ones die 'naturally,[ they often mean 'in their sleep' — not from a treatable illness such as a stroke, cancer or an infection. Choosing to let a loved one pass away by not treating an illness feels too complicit; conversely, choosing treatment that will push a patient into further suffering somehow feels like taking care of him. While it's easy to empathize with these family members' wishes, what they don't appreciate is that very few elderly patients are lucky enough to die in their sleep. Almost everyone dies of something."
• Because You've Never Died Before: Spiritual Issues at the End of Life by Kathleen J. Rusnak. Wrote one reader: "This book is a good introduction to the big gap between those of us who expect to live at least another 5 years and those in life-threatening situations. Very compassionate and well-written."
• Being Mortal: Medicine and What Matters in the End (Atul Gawande). (from a review by Sara Nelson: 'Yes, “death is the enemy,” he writes. “But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee... someone who knows how to fight for territory that can be won and how to surrender it when it can’t.” In his compassionate, learned way, Gawande shows all of us—doctors included—how mortality must be faced, with both heart and mind.' From the book itself: "The terror of sickness and old age is not merely the terror of the losses one is forced to endure but also the terror of the isolation. As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, insofar as possible, to keep shaping the story of their life in the world-- to make choices, and sustain connections to others according to their own priorities."
• Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax (foreword by Ira Byock). Be still, let go, listen, and be open to the unknown
• The Beneficial Effects of Life Story and Legacy Activities by Pat McNees (Journal of Geriatric Care Management, Spring 2009). Get PDF file of journal article here (61.9KB)
• A Best Friend Is Gone. Grief Is Here to Stay (Martha Randolph Carr, Washington Post 3-7-05)
• The Bright Hour: A Memoir of Living and Dying by Nina Riggs. (“Once I started this book, I couldn’t stop reading. Profound, absorbing, and often even funny, Nina Riggs’s memoir of living and dying is a meditation on life, family, and how to cram every day of our existence with what we love—no matter how much time we have left. Brilliant and illuminating.”- author Gretchen Rubin). See Riggs's Modern Love essay in the NY Times: When a Couch Is More Than a Couch (9-23-16) and this article, based on an interview shortly before she died: Before I go: A mother’s hopeful words about life in its waning moments (Nora Krug, WaPo, 6-1-17), which grew out of her blog Suspicious Country.
• Can't We Talk About Something More Pleasant?: A Memoir Spanning the last several years of their lives and told through four-color cartoons, family photos, and documents, and a narrative that elicits both laughs and tears, Chast’s memoir is both comfort and comic relief for anyone experiencing the life-altering loss of (in this case, cranky, eccentric) elderly parents
• Caregiver's Handbook (Robert S. Stall on how to care for both the caregiver and the elderly care-receiver, San Diego County Mental Health Services)
• Caring for a Dying Loved One: Providing Safety and Comfort to the Dying (Angela Morrow, RN, About.com, 12-28-09)
• Comfortable with Death (Elizabeth Zimmer, Obit Magazine, 5-14-10, on helping others transition out of life)
• The Comfort of Strangers (Ellen Rand, Pulse: Voices from the Heart, 5-2-16)
• Coping With Crises Close to Someone Else's Heart (Harriet Brown, NYTimes 8-16-10), essay on why some people distance themselves from those suffering a crisis or offer "pseudo-care" instead of real help)
• Despite the losses, so much gained (Leah Keith, Modern Love, NY Times, 4-11-13), “When my rare tumor was found, I thought it was the worst thing that could ever happen to me. Now I know I was the luckiest woman in the world,” writes Keith. “For 13 lucky months, I got to stare into the abyss and feel safe jumping into it because a man who loved me promised to hold my hand all the way down.”
• Developmental Landmarks and Taskwork for the End of Life (Ira Byock, DyingWell.org)
• 'Dignity therapy' gives comfort to dying patients. Helping terminally ill patients pass on their final thoughts may help give them a better quality of life, reports Harvey Chochinov, head of a Canadian research study (Jonathan Shorman, USA Today 7-11-11, on study published in Lancet Oncology). See more on dignity therapy
• Dying: A Book of Comfort, ed. Pat McNees. “This remarkable collection, coming from personal experience and wide reading, will help many find the potential of growth through loss.” ~ Dame Cicely Saunders, founder of the hospice movement
• A Dying Person's Guide to Dying (Roger C. Bone, Hospice.net)
• Dying to Live, Part 1 (snippets in this promo video for a documentary suggest indirectly how to be helpful to someone with a life-limiting illness). Part 2 of this mini-video helps encourage more comfort facing death, or being with a dying friend. You can buy the whole documentary on video, Dying to Live. Intimate interviews on coping with common end-of-life issues: grief & loss, hospice, palliative care, euthanasia, bereavement, suicide, counseling, child death, green lifestyle, terminal illness, psychology, nursing, death and dying.
• Dying Well by Ira Byock. In this classic guide, Byock makes a forceful case for hospice care and against physician-assisted suicide. He demonstrates how the physical pain and emotional despair of the dying may be handled.
• ElderCare Online's Caregiver Support Center
• Empathy Cards. Emily McDowell created this collection of empathy cards for serious illness because, and I quote, "I believe we need some better, more authentic ways to communicate about sickness and suffering. “Get well soon” cards don’t make sense when someone might not. Sympathy cards can make people feel like you think they’re already dead. A 'fuck cancer' card is a nice sentiment, but when I had cancer, it never really made me feel better. And I never personally connected with jokes about being bald or getting a free boob job, which is what most 'cancer cards' focus on." There are greeting cards, mugs, refrigerator magnets. tote bags, etc.
• The Etiquette of Illness: What to Say When You Can't Find the Words by Susan P. Halpern. How to be helpful or comforting, yet not intrusive (and how, if you're the patient, to ask for help). Above all, what not to say.
• Family Summons (Amy Cowan, Pulse: Voices from the Heart of Medicine, 1-6-17) "Their stories tell me more about this man than any lab value could. The stories guide me to make a medical recommendation that will honor what matters most to him."
• Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley (a very helpful guide)
***• Final Wishes: A series on navigating life's last journey (Luanne Rife, Roanoke Times, 12-30-17) In this award-winning series, Luanna Rife provides close-up profiles of terminally ill patients and their families, examining choices they face at the end of life. As Liz Seegert explains in Award-winning reporter educates readers about end-of-life care (Covering Health, AHCJ, 6-25-18), "before she could even begin profiling people near the end of life, she had to first educate her readers about things like hospice and palliative care. "Compared to neighboring North Carolina and West Virginia, there are fewer hospice houses in Virginia — as Rife learned, it’s mostly because of cultural barriers that prevent people from talking about death."
• For Dying People, A Chance To Shape Their Legacy (Julie Bierach, Weekend Edition, NPR, 4-9-11). Imagine that you've just been told you have only a short time to live. What would you want your family and community to remember most about you? In St. Louis, a hospice program called Lumina helps patients leave statements that go beyond a simple goodbye. At the website of BJC Palliative Home Care and Hospice you can download a patient handbook and/or a caregiver instruction manual (PDFs), and a PDF of Courtney Strain's What you can do when a friend (like me) faces the end of life. Examples: Hallmark doesn't fix it all. ... Write a letter or send an email. ... [Talk to me when] I'm strong enough to sit and laugh or cry with you ... Instead of asking, "What can I do for you?" offer some concrete suggestions — like bringing a meal or treat, doing laundry, or running errands.
• Franny's Last Ride (Mike DeStefano, at The Moth, YouTube). (Moving, but with some profanity)
• Frequently asked questions about end-of-life experience and care (Ira Byock, DyingWell.org)
• Friends With Cancer Or Other Serious Illnesses, brief excerpts from Cathy Seipp's book Good Manners for Nice People Who Sometimes Say F*ck, from the chapter "Rriends With Serious Illnesses: What to do when a friend is really, really sick and could maybe even die."
• Goodbye to Jumpy: Lessons for the Health System (Janice Lynch Schuster, AgingToday, 1-17-13) The family vet's handling of the death of her son's beloved pet hamster offers a model for humans' doctors. Schuster acknowledges "him for the compassion and human touch he showed to my little boy, who had just confronted the first of what is ultimately a lifetime of loss."
• Grief Counseling Resource Guide: A Field Manual (NY State Office of Mental Health). This guide for bereavement workers may be helpful to others, also. See for example, Alan Wolfelt on "companioning" -- to honor the spirit, not the intellect; to be curious, not an expert; to learn from, not teach, the bereaved; to walk alongside, not lead; to "discover the gift of sacred silence," not fill "every painful moment with words"; to "listen with the heart," not analyze the head; to bear "witness to the struggles of others," not direct those struggles; to be "present to another's pain," not "taking away the pain"; to respect "disorder and confusion," not impose "order and logic" -- and yet to help them organize day-to-day tasks and get them done. At the heart of grief counseling is "validation," according to Ken Doka: "reassurance that what they are experiencing is normal." And yet there are many different ways to grieve. Reading this helpful short guide for counselors will help regular people know how to be helpful instead of unhelpful! See also Companioning vs. Treating: Beyond the Medical Model of Bereavement Caregiving by Alan D. Wolfelt
• Helping a Friend Who Is Dying (Alan D. Wolfelt, Hospice)
• Helping dying patients offers Canadians life lessons (Carmen Chai,National Post, Canada 12-6-10)."Canadian hospice care workers say their daily experience caring for dying patients has changed their personal lives — but in a positive way, according to a new study that looks at how people are shaped by exposure to death....many of respondents in his study admitted to rearranging priorities in their lives after learning from their dying patients that they wished they had spent more time with family or focused on enjoying life instead of working."
• Helping Our Loved Ones Die Video 1 of a 12-part video series, by Stan Goldberg, author of Lessons for the Living: Stories of Forgiveness, Gratitude, and Courage at the End of Life
• Helping Yourself Live While You Are Dying (Alan D. Wolfelt, on Hospice.net)
• How to Be a Friend Until the End (Frank Ostaseski, Lion's Roar, Buddhist Wisdom for Our Time, 6-11-18) There’s no one right way, but practice helps, and so do basic guidelines. Among them: Embrace Impermanence. Be a Calm Presence. Acknowledge Suffering. James Baldwin once wrote, “Not everything that can be faced can be changed. But nothing can be changed that is not faced.”
• How to Conduct Compassionate Interviews at the Scene of a Tragedy & Dealing with Our Own Responses to What We See and Hear: A Guide for Journalists by Russell Friedman and John W. James (The Grief Recovery Institute Educational Foundation--a 28-page PDF file well worth downloading, whether or not you're a journalist. This may be helpful also if you aren't sure what's helpful in talking with a friend who is dying or grieving--because, of course, people who are dying are also grieving.)
• How to Comfort the Dying (wikiHow, a little crude, but a good basic checklist)
• How storytelling can aid in healing
• How to give death a good name (Elizabeth Grice, The Telegraph, 6-23-08). With society now obsessed by the desire to prolong life, Grice asks if we have lost the art of dying well and examines practical steps to change our attitudes
• How to Help a Grieving Friend (PDF, Fox Valley Hospice)
• How to Say Good-bye When Someone You Love Is Dying . Regrets and lessons from grieving survivors (Paula Spencer Scott, Caring.com)
• How to Talk to a Dying Friend (eHow)
• How to tell children a parent is dying
I Don't Know What to Say...: How to Help and Support Someone Who Is Dying by Robert Buckman. "One of the biggest problems faced by terminally ill patients is that people won't talk to them, and the feelings of isolation add a great deal to their burden." Buckman offers advice on how to talk to a dying person, how to relieve their and your own distress, fears, and guilt. See Jane Brody's piece on Art and Grace, When It’s Time to Say Goodbye (Personal Health, NY Times, 12-30-03). She writes, "Many people are more afraid of dying alone than they are of death itself. By knowing how to act and what to say when visiting a dying person, you can bring caring and comfort that eases the person's passage over this most momentous threshold. "
If someone you know has suffered a loss... (Bob Carnevali, Easing Grief). How to interact with someone who is grieving -- things to do and things not to do! (Here is his Grief Recovery journal/blog.
I Know You Love Me — Now Let Me Die (Louis M. Profeta, Next Avenue, 3-15-17) A physician laments the often-excessive care of older adults at the end of life
Intimate Death: How the Dying Teach Us How to Live by Marie de Hennezel. A bestseller in France, this book conveys well the power of effective palliative care--of being present for the dying, and helping them with unfinished business. She recommends playing John Rutter's Faure: Requiem and other choral music for someone who is dying. See Music to comfort the dying, below.
Jane Brody's Guide to the Great Beyond: A Practical Primer to Help You and Your Loved Ones Prepare Medically, Legally, and Emotionally for the End of Life -- a practical book, with explanations and to-do lists for everything from advance directives and why a living will is not enough to funeral plans, living with a bad prognosis and dealing with uncertainty, caregiving, hospice, communicating with doctors, assisted dying, organ donation, autopsy, and legacies. Offer to read up on these things for your friend, and/or to give her a copy of the book.
Just Because I’m Dying Doesn’t Mean I’m Any Less Capable of Being Your Friend (BJC Hospice -- an interview conducted with Courtney Strain weeks before she died). “Don’t be afraid to engage with someone who is dying. We’re afraid because that person reminds us of our mortality. Don’t be scared to do the wrong thing.”
Keeping a Promise When a Life Is Near Its End (Ellen D. Feld, MD, The New York Times, 11-10-08)
A Life Worth Ending (Michael Wolff, New York Magazine, 5-20-12). "The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A son’s plea to let his mother go." ("Part of the advance in life expectancy is that we have technologically inhibited the ultimate event." "The purpose of long-term-care insurance is to help finance some of the greatest misery and suffering human beings have yet devised.") Read the comments, too. And the Daily Mail has Emily Anne Epstein's piece about Wolff's message: 'The longer you live the longer it will take to die' : 'The healthier you are—through careful diet, diligent exercise, and attentive medical scrutiny—the harder it is to die.'
Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions by Karen Whitley Bell RN, who "she delivers a wealth of useful information on pain management, choosing a hospice and general day-to-day care giving in a powerful, hard-to-forget way. Straightforward and empathetic, with an easy-to-navigate style, Bell details what to expect in both physical and spiritual terms, including practical considerations as well as ways to find closure and cope with loss." (PW review)
The Long Goodbye: a memoir by Meghan O'Rourke, which Alice Gregory reviews for NPR in 'The Long Goodbye': A Syllabus For Modern Mourning. An excerpt: "In the days following my mother's death, I did not know what I was supposed to do, nor, it seemed, did my friends and colleagues, especially those who had never suffered a similar loss. Some sent flowers but did not call for weeks. One friend launched into fifteen minutes of small talk when she saw me, before asking how I was, as if we had to warm up before diving into the churning, dangerous waters of grief. Others sent worried e-mails a few weeks later, signing off: 'I hope you're doing well.' It was a kind sentiment, but it made me angry. I was not 'doing well.' And I found no relief in that worn-out refrain that at least my mother was 'no longer suffering.'"
Making Plans for the Last Chapter of Life (Talk of the Nation, 8-31-09--listen or read transcript). Sherwin Nuland and Ira Byock tell Neal Conan how they talk with patients who are facing the ends of their lives.
Marrow: A Love Story by Elizabeth Lesser. The memoir of two sisters who, in the face of a bone marrow transplant—one the donor and one the recipient—begin a quest for acceptance, authenticity, and most of all, love.
Movies about death and dying. (Sometimes all someone wants is to cuddle and watch a movie together. And these might work.)
Mister Lytle: An Essay (John Jeremiah Sullivan, Paris Review, Fall 2010) Wonderful long tribute to a dying 92-year-old difficult literary mentor, somewhat in the manner of the old South: "I found him exotic; it’s probably accurate to say that I found him beautiful. The manner in which I related to him was essentially anthropological. Taking offense, for instance, to his more or less daily outbursts of racism, chauvinism, anti-Semitism, class snobbery, and what I can only describe as medieval nostalgia, seemed as absurd as debating these things with a caveman. Shut up and ask him what the cave art means. The self-service and even cynicism of that reasoning are not hard to dissect at a distance of years, but I can’t pretend to regret it, or that I wish I had walked away."
In Barbara Cook’s Final Days, Her Friends Came to Sing at Her Bedside (Sopan Deb, NY Times, 8-11-17) 'In the days before Ms. Cook’s death on Tuesday, friends from her legendary career delivered a fitting farewell: More music. Vanessa Williams and Norm Lewis, who starred with Ms. Cook in the 2010 Broadway revue “Sondheim on Sondheim,” were among those who came by her Upper West Side apartment and sang to her. Josh Groban, Hugh Jackman, Audra McDonald, Kelli O’Hara and others sent audio and video recordings full of memories and melodies. Ms. Cook was in and out of consciousness, able to recognize voices and respond with a squeeze of the hand.'
• Threshold Choir One Choir, Many Voices. Singing gently at the thresholds of life in over 150 communities around the world.
• Companion Voices comfort dying people through song (Dying Matters, 4-16-16) Music is a solace in troubled times
Music for Funerals and Memorial Services. This is also a good page for finding music to sooth, cheer, or uplift -- and to help a dying person grieve the coming loss of life, and celebrate the life they lived.
"Goodnight, sweet prince/and flights of angels sing thee to thy rest"
~from Shakespeare's Hamlet
The Myth of the Stages of Dying, Death and Grief by Russell Friedman and John W. James (PDF, Grief.net). You will find many more articles by these authors here, about grief recovery and on people's reaction to loss and what to do about it.
The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter by David Kessler (writing about the need to be treated as a living human being, the need for hope, the need to express emotions, the need to participate in care, the need for honesty, the need for spirituality, and the need to be free of physical pain). Kessler also wrote Visions, Trips, and Crowded Rooms: Who and What You See Before You Die
One woman’s dying wish made another a mom (Ellen McCarthy, Wash Post, 6-24-15) Linda Rahal, an immigration lawyer, had been leading a perfectly happy single life -- filled with travels and Ironman competitions -- when a former client made a dying wish. After a lengthy international legal battle, Linda became a mother by adopting her client's daughter from Serbia
The Passing: What to Expect When Witnessing a Loved One's Death (Paula Spencer Scott, Caring.com). Relatives describe the death experience
Preparing for a Loved One to Die at Home (Susan Seliger, New Old Age, NY Times, 1-14-13) Twelve practical things to do to make dying at home comfortable and workable. A practical follow-up to Linda G. Beeler's piece, Turning a Home Into a Hospital (NY Times, 11-26-12)
POLST. What is a POLST and Do I Need One? (Angela Morrow, RN, About.com 3-1-10). A POLST is a “physician’s order for life sustaining treatment.” A relatively new document, the POLST is a way to translate a living will or an oral advance directive into physician's orders that must be followed by emergency personnel and health care providers. The POLST may state a patient's preferences for, against, and about CPR, medical interventions, antibiotics, and artificially administered nutrition and hydration.
The Pros and Cons of Living with a Terminal Illness (Ellen Diamond, Pulse, 5-9-14) "Life is a terminal illness, and we all are living with the knowledge of our certain deaths. Yet we get up in the morning and make breakfast as if there's no tomorrow. Are we all in denial? In a way, yes. But is that a bad thing?"
Providing comfort at the end of life (National Institute on Aging) When someone is at the end of life, providing comfort care may involve helping with their physical comfort, helping meet their mental and emotional needs, helping meet their spiritual needs (which includes helping them find meaning in their life and ending disagreements with others), and helping with practical tasks (including helping provide respite care for caregivers).
Recommended Reading, Viewing, and Listening (including children's books about death and loss)
The Rituals of Modern Death (Haider Javed Warraich, Opinionator, The End, NY Times 9-16-15) "I didn’t see the true face of death until I was the one filling out the death certificate....Much like the overarching experience of patienthood, the end of life has been sterilized....These days, instead of a shaman, patients are surrounded by strangers in scrubs. Death – one of the most complex events that can occur in a hospital – is usually handled by the youngest physicians....With time and experience I have learned that after a patient passes, my responsibility is to be more than just someone who checks off the boxes."
A Serious Illness Can Isolate a Family: Gestures of support help greatly, writes Louise Bonnett-Rampersaud, for the Washington Post (8-4-09). "What I've come to realize," she writes, "as I've watched my husband struggle for his life over the past four years [vascular Ehlers-Danlosis] that there are certain things people can say and do to make that wait more bearable, and there are words and actions that miss the mark, triggering even more distress. It boils down to what I have come to call 'terminal etiquette.' Families in this kind of crisis suffer with an "incredible sense of isolation." Child-life specialist Jeanne Higgins Bergin advises "that people should acknowledge the situation, be empathetic, reach out and offer specific ways to help the family." Offer, "for example, to cook, clean, do laundry, run errands, include our children in their family's activities, plant flowers, rake leaves and shovel our snow." Offer to drop off milk, bread, and bananas every Monday and Friday -- "creating a sense of routine and continuity in a family's life that has been turned upside down."
Share The Care: How to Organize a Group to Care for Someone Who Is Seriously Ill by Cappy Capossela, Sheila Warnock, and Sukie Miller
She Had Stage 4 Lung Cancer, and a Mountain to Climb ( Rebecca Byerly, NY Times, 5-22-19) Isabella de la Houssaye raised her five children on adventure. Then came a brutal diagnosis, and a burning desire for a final journey with each one. “So much of who I was was defined by my physical strength,” she said. “It’s definitely hard being sick and saying goodbye to the person you were before. You have to redefine yourself, and you don’t want to define yourself as a sick person. I’m learning that you have to find acceptance with the decline.”
Should terminally ill patients be able to choose when they die? (PBS, 10-14-14 ) After being diagnosed with terminal brain cancer, 29-year-old Brittany Maynard moved her family from California to Oregon to die on her own terms. Oregon law allows Maynard to take lethal prescription medication to end her life. Jeffrey Brown gets debate from Barbara Coombs Lee of Compassion & Choices and Dr. Ira Byock of Providence Institute for Human Caring.
Signs and Symptoms of Approaching Death (Hospice Patients Alliance)
Sitting Vigil at a Death Bed: A Checklist (Paula McCann, On the Way to Dying, 6-26-16). This is from a very helpful website, On the Way to Dying . Paula is an elder law attorney, estate planner, and litigator. As part of her practice, she often teaches and counsels her clients about death and dying, last wishes, arranging for care, and so forth. Among her posts based on practical experience and insight on dying in America are the following:
---Visiting a Sickbed or Deathbed: What do you bring, do or say?
---What to Read to a Person Who Is Dying?
---Is My Mom Dying?
---Stop Theft From Elders: A Checklist to Age-Proof a Home Aganst Theft
---How to Stop Thefts from Elders and the Dead. "Preventing thefts and recovering assets stolen from vulnerable adults, elders and the dead has been the focus of my elder law practice for the past decade."
---When Your Abuser or Abandoner Dies: How to Cope
---Anger Stops You from Visit to a Deathbed? Suggestions
6 Ways to Help When Someone Has Cancer (Jessie Gruman, a three-time cancer survivor, a Parade slide show). In brief: Acknowledge the situation; offer help only if you can deliver; guard patient's privacy (don't share news without permission); listen--really listen; remember that hope is a gift, not everyone feels (don't insist patient feel positive); ensure our dignity (make us feel valued--not just a cancer patient).
Spiritual Directors International (SDs accompany people on a spiritual journey) has excellent resources -- including spiritual directors, but also PDFs of articles from the journal Presence (download, for example, The Compassionate Observer by Jane E. Vennard). To learn more: What is spiritual direction?> (contains answers specific to various spiritual traditions).
The Symptoms of Dying (Sara Manning Peskin, MD, NY Times, 6-20-17) "While the weeks and days leading up to death can vary from person to person, the hours before death are similar across the vast majority of human afflictions. Some symptoms, like the death rattle, air hunger and terminal agitation, appear agonizing, but aren’t usually uncomfortable for the dying person....While few of us will experience all the symptoms of dying, most of us will have at least one, if not more. This is what to expect."
Talking with a Sick Person (excerpt from the helpful book Handbook for Mortals by Joanne Lynn and Joan Harrold. Read more excerpts here.
10 Signs Death Is Near (Paula Spencer Scott, Caring.com). What to expect and how to respond to the natural dying process
Things To Do When Time May Be Short (from Handbook for Mortals
Tips to How to Help a Grieving Loved One During the Holidays (PDF, Fox Valley Hospice)
Tom the cat comforts ailing veterans at Virginia hospital (NBC News) A former shelter cat offers love and affection to veterans at Salem VA Medical Center when they are seriously ill or close to death.
A united family can make all the difference when someone is dying ( Samuel Harrington, WaPo, 11-20-16) When a family elder wishes to die at home, it is important that the family have a plan--e.g., what to do and who to call first, when a medical crisis arises. Problems arise when family members compete to "prove who cares the most....This is frequently seen upon the arrival of an estranged family member at the deathbed, and it has been described in medical journals as “The Daughter From California Syndrome.” Classically, the syndrome unfolds as the guilt-ridden newcomer urges overly aggressive treatments....The fault lines in decision-making that result from any of these [sibling rivalry] scenarios will prolong some aspect of the dying process, usually to the detriment of patients like my father who have asked for a non-medicalized death at home."
What doctors know about death that the rest of us don’t (Danielle Teller, Quartz). "...doctors know...There’s nothing more noble about dying from cancer than from alcoholism. There isn’t a battle against death to be fought, just treatments to endure when the disease is treatable and symptoms to endure when the treatments are futile. Death has always been inevitable, but once their deaths are imminent, doctors just want to be comfortable and to spend the last days with family. It turns out that this is what most of us want, and we can have it if we can just bring ourselves to let go of narratives that don’t make sense and get more comfortable with the truth."
What Dying People Want: Practical Wisdom For The End Of Life, a book by David Kuhl
What people talk about before they die (Kerry Egan, hospice chaplain in Massachusetts and author of Fumbling: A Pilgrimage Tale of Love, Grief, and Spiritual Renewal on the Camino de Santiago
What the Dreams of the Dying Teach Us About Death (Emily Gurnon, Next Avenue, 10-26-15) Most end-of-life dreams and visions were comforting, researchers said.
What you can do when a friend (like me) faces the end of life (Courtney Strain for BJC Palliative Home Care and Hospice, PDF file)
When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses by Elise NeeDell Babcock. When someone you care about is diagnosed with cancer, what should you say? What should you not say? What are the best ways to offer help, or to help children understand what is happening?
When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions by Paula Span. What will you do when you get the call that a loved one has had a heart attack or a stroke? Or when you realize that a family member is too frail to live alone, but too healthy for a nursing home?
When The Time Comes: Tips For How To Visit The Dying (Rebecca Steinitz, Cognoscenti, WBUR, 4-29-16) "I will love some of those visitors forever. Others I wouldn’t mind never seeing again." What (and what not) to do.
When your dying friend needs help (what to say and do, and other frequently asked questions -- HospiceDirectory.org)
The Whole Family Gathered to Write Dad’s Obituary — Including Dad (Greg Marshall, Narratively, 7-25-17). As their father slowly succumbed to ALS, the family squabbled over and joked about which details to include in his obit. In two days he was going to unplug the device that kept him alive; friends came to say goodbye, and the family gathered in outspoken farewell.
• How not to say the wrong thing (Susan Silk and Barry Goldman, Los Angeles Times, 4-7-13). It works in all kinds of crises – medical, legal, even existential. It's the 'Ring Theory' of kvetching. Comfort those at the center (the patient, patient's family), kvetch to those further away from the center.
• How to Talk to a Friend With Cancer (Claudia Wallis, Time, 10-5-07). Wallis gets advice from Lori Hope, author of a book to help friends and families of those fighting cancer: Help Me Live: 20 Things People with Cancer Want You to Know. Advice on what cancer patients do and don't want to hear and what is useful or makes them feel better.
• But I Don't Know What to Say... (Fran Moreland Johns, Beliefnet, author of Dying
• Ideas for a Time When Someone You Love Is Dying by James E. Miller, author of One You Love Is Dying: 12 Thoughts to Guide You on the Journey
• Tips for Using Patient-Friendly Language (Katharine O'Moore-Klopf, ACES, 1-14-19)
• Five Important Things to Say to all our loved ones, regularly: Thank you; I love you; I'll never forget...; I'm sorry...; I forgive you. (St. Charles Church)
"We need, in love, to practice only this: letting each other go. For holding on comes easily; we do not need to learn it." ~ Rainer Maria Rilke
• The game that can give you 10 extra years of life . Game designer Jane McGonigal's TED talk about how, when she found herself bedridden and suicidal following a severe concussion, she figured out how to get better and feel happy again. (Video and/or transcript.) Her concrete suggestions are a good follow-up to The Top 5 Regrets of The Dying (Joe Martino. Collective Evolution, 4-27-13).
• What Not to Say at the Bedside (Judith Graham interviews Letty Cottin Pogrebin, who offers more advice in her book How to Be A Friend to a Friend Who’s Sick
• What do you (not) say to a dying friend (Janice Gaston, Scripps Howard News Service, San Diego Union)
• What to Say to a Dying Person (Myrrh Hector)
• How to Talk to a Dying Person (Lisa DeLuca, Caregiver Support). Advice from hospice social worker Margaret Bromberg.
• Words of Comfort for the Dying (Father Bill Haymaker, Big World Small Boat)
• What Does Someone Dying Need? (Rex Winsbury, on Hospice.net)
• The Etiquette of Illness: What to Say When You Can't Find the Words by Susan P. Halpern. How to be helpful or comforting, yet not intrusive (and how, if you're the patient, to ask for help). Above all, what not to say.
• Being there, How to Help a Friend Who Is Dying (PDF, Fox Valley Hospice)
• What Dad Wants Dad Gets (Joan Hitchens, Grief Reflections blog, 2-24-11)
• Youth Suicide: How You Can Help the Survivors (Florence Isaacs, author of My Deepest Sympathies...: Meaningful Sentiments for Condolence Notes and Conversations, Plus a Guide to Eulogies)
An Old Friend Calls in a Promise
by Bayla Kraft
You know those rare friendships that thrive even when you’ve been out of touch for months—even years? That’s how my friendship with Karen was and why, when she called with grim news, I went right to her apartment, though we hadn’t spoken in a year. We had become friends in our twenties, when we were both working for an Arlington radio station—jobs far removed from our eventual careers. Karen had sold radio time, I had done voiceovers and handled commercial traffic, and after work we regularly met downstairs for drinks in a restaurant called the Pawnshop. The friendship had a solid base in rebelliousness, vulnerability, and dark humor. We had both grown up locally, I in the District, Karen in Arlington. We had both left home as teenagers. We both had conflicted relationships with our families. One night, over several glasses of wine, after talking about our disease phobias—especially our fear of cancer—we made a pact. We promised to be there for each other if tragedy ever struck.
Then our lives took different directions. She went to Germany and to India for a while, and traveled the world. She worked for a record company and then developed a successful business as a headhunter. She lived alone with her cats and had a lot of friends. I returned to grad school, started a psychotherapy practice, got married, and had two sons. But we stayed in touch.
And now, 27 years after our radio days, on a cold day in December, Karen was telling me she had metastatic colon cancer. A healthy, active woman, she had gone for a physical in early November 2000 because she didn’t feel well—she just felt something was wrong. A blood workup later that month showed her liver enzymes to be off, so the doctor ordered a CAT scan, which revealed masses in her liver. At 46, she was too young for a routine colonoscopy, but the one she went for in late November revealed a tumor embedded on the side of her colon, which is why she had experienced no bleeding or discomfort. The colon cancer had already spread to her liver.
“Will you be there for me?” she asked. I would, indeed.
Karen was not in a relationship with a man when she was ill. She was never married and wanted to be; I think that was one of her deep regrets. But over the months I accompanied her through treatments and doctor visits, joyful outings and gut-wrenching conversations, I learned that Karen’s being single and childless did not, in the end, matter nearly as much as having good friends to make the journey with her.
I couldn’t have helped Karen through the next ten months had I not had had my own encounter with cancer. Three years earlier, when I was 47, I had returned from a vacation to learn, from a routine mammogram, of possible trouble. Two days later a biopsy confirmed stage-one breast cancer and the surgeon performed a lumpectomy, followed by six and a half weeks of radiation and five years of oral Tamoxifen, the drug of choice for a hormone-receptive tumor – and a great relief, because I feared chemotherapy.
I learned that once you have cancer, the world becomes cancer—there is nothing else. My radiation oncologist told me, “The hardest part is going to be getting on with your life, because cancer changes you forever.” You wait until it comes back or it doesn’t. You never lose that fear but you also become grateful for the things you have. You really learn what it means to take one day at a time.
My vision of myself had always been that if cancer struck I would totally fall apart, but once I actually got it, I felt surprisingly grounded. Exposed to cancer patients – people I sat with daily during radiation, whose cancer had often been detected at a later stage than mine – I saw the fear in their eyes, but also the courage and determination. I became less afraid, less phobic, less fragile. The fear didn’t go away but, after a lifetime of cancer phobia, I became a trouper. My bout with cancer prepared me to help Karen with hers.
Still, although my level of neurosis had dramatically lessened, we both knew that the only way I could help her was to have a CAT scan to confirm that nothing was going on there right now. After a lifetime of health phobias, I needed it so I could put aside concern about myself and focus on her.
Karen had surgery at Johns Hopkins in January. Afterward she radically reduced her headhunting business. The prognosis was not good, but Karen was taking things one day at a time. It was interesting to see how Karen’s friends reacted toward her illness and dying. Jean, her closest friend, worked full-time but was there every day after work; other friends came often; some friends came to see her just around the dying time; some suddenly stopped coming. Karen figured they were having a hard time dealing with what was happening. I had cut back on my therapy practice during my treatment for breast cancer and had more time to spend with her than I normally would.
People sometimes avoid going to see friends who are dying because they don’t know what to do or say. But some of my most powerful memories of these months with Karen were of just lying on the bed with her, holding her hand, watching television together, and saying, “This sucks.”
Karen was a people magnet. A lot of people liked her and she liked a lot of people but as she grew sicker and weaker and more involved in chemo, she backed away, wanting only a few people around her – those with whom she could feel or say anything. At times she would snap at us, then call later and apologize. We reassured her that she was entitled to be short-tempered. She knew that nothing was off limits. She could say horrible things about her mother, her sister, other people, the world—and it was all okay. It helped her to be able complain about ways people tried to help her that weren’t helpful. She was dealing with a lot of conflicting feelings.
People called from all over the world. Any given week she might get seventy messages and she checked her voicemail regularly. She became more open about her feelings and her thoughts, going from periods of weeping to periods of laughing to periods of saying, “Why are they calling to see how I am? What do you mean, ‘How am I?’ I’m dying – okay?”
Because she was too ill to run her business, she couldn’t afford her apartment anymore. Many of us offered to contribute to the rent but she felt that she was going to need help and didn’t want to be alone. And the truth was, she needed somebody to be there every day.
For a while she talked about moving to her mother’s house and putting her furniture in storage—so that if her health turned around she could get her own place again. Briefly, that made her happy, but a couple days later she said, “Who am I kidding? I’m not going to make it. I’m going to sell it all, and if something happens and I do make it, I’ll go out and buy new things.” Karen and her mother were both independent and strong-willed and Karen knew it wouldn’t work if her mother’s house was suddenly invaded by Karen’s beautiful furniture, so Karen put an ad in the paper and held a sale in her apartment, keeping only enough to furnish her room in her mother’s house.
Having hordes of people ask “How much is this?” about the things she loved was brutal. People wanted to know why she was selling everything and she wondered what to say. “Moving sale?” I suggested.
“Movin’ on up,” she said, and began singing the Jeffersons’ old song, “Movin’ on up to the East Side.”
Karen’s mother gave up her bedroom for Karen. We had it painted and arranged the familiar things she loved: her Buddha, a lovely chair, some spiritual bells she had bought in India. Many friends got together, packed her apartment up, and moved her to her mother’s house in late May.
Karen’s mother is at once strong and feisty, warm and cold, and they had not always been close. But her mother took her in when she was dying – which, believe me, not all mothers can do – took care of her the best she could and when she couldn’t would tell Karen to call one of us. It wasn’t easy for either of them because they were both used to being alone, but the arrangement gave Karen an opportunity to resolve old issues with her mother – normal adolescent stuff that they still fought about: that the mother was closer to Karen’s sister; that Karen, as the strong, successful one in the family, always had to fix everything; that Karen was there to help take care of her father when he died and her sister wasn’t. (Karen could always step up to the plate.)
Karen and I took her mother out to lunch for her eightieth birthday. “You’re a really good mom,” I said, and she said, “Well, it’s taken me a long time to learn.”
At Starbucks one day she admired a stuffed animal, a leftover Christmas bear, with wings, so I bought it. Louise, the chemo bear, came with us most days to the doctor’s office, bringing Karen comfort during chemo. On the way we often stopped at Wendy’s to buy a Frosty – the only thing the health-conscious Karen (who normally exercised four times a week) found palatable some days. Early in chemo she would drink the whole thing; toward the end she might manage one swallow.
Her whole chemo experience was horrid – they could never manage the nausea – but she never lost her sense of humor. After chemo or a doctor’s appointment we often went to get prescriptions filled. She was so weak one day that she asked me to get one of the Giant pharmacy’s mobile scooters and come back for her. I was doubtful but she insisted; she was too weak to walk. The manager helped me get it started, and BAAM! I drove right into the cereal display. I sat amidst scattered cereal boxes watching Karen, at the end of aisle 11, laughing. It felt good to see her laughing. When the boxes were cleared, I drove down the aisle and she got on the scooter, saying, “I’ll take over from here.”
Always there was the chemo and, for months, the hope that it would lick the cancer. One day Washington Radiology told her that one of the fifteen tumors in her liver had shrunk a little – not that these fourteen other tumors were going to kill her, but that one tumor had shrunk a little. You could see the joy on her face: Something is working here, and something working can mean it’s going to work more.
On some level she held out tremendous hope, and the hope never went away, and when she wasn’t hopeful, she was honest about her fear. But quietly the degree of hope changed and she became realistic. She was dying.
Being a nurturer was one way Karen had stayed in control of her life. Every day she asked how I was, how I slept, if I was scared, if this was going to be okay. I told her that for once in her life she had to learn to be taken care of. Now she learned to let love in. It was amazing to watch. I hope I can experience my death with as much integrity and dignity as Karen did, and can let people be there for me in the way that she did. It was a gift she gave her friends and caregivers as much as it was a gift they gave her.
I cried a lot – we all did – but they were tears of release. We would get them out and then get on with what we had to do. Somehow her phones kept breaking, for example. One day she declared, “I’m going to Best Buy with you.” She wasn’t well, so we got a wheelchair. Now, Karen was impossible to shop with in normal times. “Do you like this sweater or that one? Is this sweater too expensive? Maybe I can get this sweater on sale.” At Best Buy, she looked at every single phone. Even approaching death wouldn’t stop this woman from obsessing about whether to get the white or the black phone, the hold button or the speakerphone. Finally I asked her, “Karen, how long are you going to need this phone? Are you planning on taking it with you? You’ve been here for an hour and fifteen minutes. Pick out a damn phone.”
Laughing, she chose one, saying, “Yeah, really. How long am I going to have this phone? It’ll last me eight more weeks.”
At Karen’s request, in mid-July I had hosted a dinner party for the friends who had helped her move. She was already in enough pain that she didn’t know if she would make it but she did and seemed to enjoy herself. In mid-August, her friend Jean gave a birthday party for her. The party was forty minutes away so a few of us picked her up in a limousine. Both parties were a celebration of Karen and meant a lot to her but it took everything she had to get through them. Outings had become an ordeal and the party at Jean’s was her last one.
Three or four months before she died, her ankles and stomach swelled so much that it was hard for her to walk, her body seemed out of control, and it was clear that further chemo trials were just prolonging the inevitable. We went to Johns Hopkins to see her oncologist about an experimental drug, and he didn’t see any reason to take it or not take it, but he didn’t have anything else to offer her. She decided not to take it because she couldn’t bear the idea of even more nausea. Nothing they tried seemed to control it.
Gradually our concern changed from “Is Karen dying?” to “What’ll we do for this pain?”
She was housebound for a month and then, when they couldn’t give her the amounts of pain medication she needed at home, she finally went into the Hospice of Northern Virginia, a wonderfully caring organization. The hospice was overwhelmed – it was September 11, 2001 – but they sent a nurse and chaplain to pick her up. Despite enormous pain, she was upset by what she saw happening at the World Trade Center and the Pentagon. “Oh my God,” she kept saying, “all those people are dying!”
The hospice was in a converted elementary school. The room she died in had once been her classroom. She already knew some of the nurses because she had worked at the hospice as a volunteer. Her hospice work had been important to her, and helping people who were dying had helped reduce her own fear of dying. I was terrified the first time I visited—and haunted by the open mouths of the dying, struggling for breath. But as the days passed I was less aware of the look and smell of death and more aware of the patients’ dignity and the tender love family and staff showed for them. A physician had explained to me that he found the work both healing and spiritual. I could now see why.
Karen was in a ward with four other people. A private woman, she suddenly had no privacy. She talked at first about being out of control because people could come any time, day or night, without calling. But the hospice staff was wonderful with her. They have so much experience that they knew what to do to make her feel comfortable: bathing her, putting on a clean nightgown every day, washing her mouth out, trying to get some of the gunk off her teeth. Sometimes I turned my head away because it was so painful to realize that, try as we might to have control over our lives, we are ultimately helpless.
She stopped eating and lost even more weight. She was both skeletal and swollen and most of her hair had thinned and fallen out. She still put lipstick on but her nail polish was chipping off. All her life Karen had had “nail night,” staying home once a week to do her long, beautiful nails. She kept saying she wanted to make lists of things she wanted to give people, but she resisted doing it. “You’ve got to help me make that list tomorrow,” she would say, but she never got around to it. We talked about going wig shopping, but never did. “The hell with it,” she decided. “It’s not important.”
Once a week a harpist came and played right outside the ward door. One such evening, Karen, who had been sleeping, opened her eyes and held out her hand. “Am I in heaven yet?” she asked.
I said, “Not yet, honey. Not yet.”
Eventually she went into a medicated coma. The morning she died, the hospice staff called and said, “Don’t come this afternoon; come this morning,” She died that afternoon, October 3rd, 2001. After she stopped breathing, her heart kept beating another 45 minutes.
They say that we die the way we lived and that was certainly true for Karen. After feeling so scared all my life, helping Karen was at least as helpful to me as it was to her. I thanked her for her courage because it became my own. Being phobic and squeamish about illness had always felt self-centered, and when the people at hospice asked me to help someone with a tube and I did, I was amazed at myself. At hospice, the dying and their caregivers were in the same bind and they were all getting through it. Karen dying helped me learn that we would all get through it.
I’ve pretty much stopped being obsessed about whether my cancer is going to return. I’m frightened of it but I really don’t give it a lot of thought. I can’t afford to, because if I did I would be scared all the time. Not worrying about it is a different defense; I’m more realistic and I feel more adult about it. I yell less at my kids now and appreciate the world around me more. I especially appreciate my family of friends, and know we can be there for each other if I am ever in real need.
Copyright by Bayla Kraft. This story originally appeared in the Health Section of the Washington Post. For permission to reprint, please contact the owner of this website (www.comfortdying.com).