Horny Hospice

Sometimes ya just gotta laugh through it all.

“It’s not your grandparents hospice.”

You may be on life support, but your sex life doesn’t need to be.

The way we die will be considered unthinkable 50 years from now

How we treat dying people needs to change.

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Fifty years ago, a physician was admitted to the hospital with stomach cancer. He wrote down in his own medical chart that he did not want CPR or to be connected to a breathing machine. His wishes were disregarded — he underwent CPR numerous times and was connected to a breathing machine until he died. Back then, not only were people treated in ways they did not want, many patients were also arbitrarily denied potentially lifesaving therapies.

Doctors decided who deserved to live or not: In one New York hospital, doctors put purple stickers on the charts of patients they determined would not receive CPR or other similar measures without the patients’ or their families’ knowledge. Decisions about life and death were subjective and opaque.

End of life care has considerably improved since then. Patient preferences now help direct physicians and nurses about what type of care they would want to receive. But 50 years into the future, we will look back on today and conclude that medicine was sorely lacking when it came to how we handle death.

Many in medicine, as well as patients and caregivers, continue to equate more procedures, more chemotherapy, and more intensive care with better care. Studies in patients with cancer and heart disease, the two greatest killers of mankind, show that patients receiving palliative care, which is an approach that focuses on quality rather than quantity of life, can actually live longer. While the goal of palliative care is to help people with a serious illness live as well as possible — physically, emotionally and spiritually — rather than as long as possible, some people receiving palliative care might also live longer since they avoid the complications associated with procedures, medications, and hospitalization

In addition, while medical advances have moved forward at blinding pace, the ethical discourse surrounding many technologies has not kept up. Take, for example, cardiac devices such as pacemakers and mechanical pumps that can be placed in the heart. Many patients with terminal illnesses who want to deactivate these devices find resistance from the health system, since some continue to equate deactivating them with euthanasia. We need to continue to make sure that even as technological advances blossom, patients remain at the center, and physicians continue to honor their wishes.

And while the palliative care specialty has greatly improved end-of-life care, too often, palliative care has been used as a way to avoid the culture change needed by all medical specialties to better handle death. Despite its many benefits, many patients and physicians are scared of “palliative care” because of its strong association with the end of life. Some have been compelled to change the title of their practices to “supportive care.” To many patients, the very name “palliative” implies that they will be abandoned, making them very reluctant to accept their services. The fact is that palliative care can, and should, be delivered to patients with serious illness alongside conventional care.

But the issues go beyond the name — one recent study showed that palliative care-led meetings with families of patients in intensive care units led to an increase in post-traumatic stress disorder symptoms among family members. Palliative care specialists are often consulted in tense situations when patients are critically ill, and they often have no prior relationship with patients or their families, who might be unprepared to have serious discussions with them. That’s why most of these difficult conversations should be delivered by the doctors and surgeons primarily responsible for treating the patients. One study estimated that by 2030, the ratio between palliative care specialists and eligible patients will be 1 to 26,000. Palliative care specialists cannot be entirely responsible for end-of-life care by themselves.

To emerge on the right side of history, the entire culture of medicine needs to be turned around. End-of-life care is not just palliative care’s business. It is everyone’s business, from emergency room doctors to primary care physicians. Physicians need to abandon outdated ideas that their role as healers is incompatible with helping patients die comfortably and on their own terms. Helping patients die well is as important as helping them live to the fullest.

Complete Article HERE!

The myth of ‘no place like home’ when it comes to end of life

In a new study, MU researchers uncovered several themes that expose the challenges that are often not included in conversations about dying at home.

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She died at home, but it wasn’t the romantic scene found in movies, where the family held her hand and she simply closed her eyes. In reality, there was a night when she had diarrhea 12 times. In reality, every time she had to be moved she was in pain. This was how a caregiver described caring for her mother as she died at home to social scientists studying end-of-life decision-making.

In a new study, Jacquelyn Benson, assistant professor of human development and family science at the University of Missouri, found that home deaths can be physically and emotionally challenging, especially for caregivers.

“The realities of a home death experience present challenges for family members, especially those with limited resources and social support,” Benson said. “It is important that people understand that home death does not automatically equate a good death.”

In recent decades, there has been a groundswell of social movements championing the ideal of dying at home. According to the Centers for Disease Control and Prevention, home deaths in the U.S. increased nearly 30 percent from 2000 to 2014, while deaths in hospitals, nursing homes and long-term care communities dropped.

To study how home deaths might impact caregivers, Benson along with fellow MU researchers Benyamin Schwarz, Ruth Brent Tofle and Debra Parker Oliver, captured stories from caregivers to identify common themes surrounding the experiences of home deaths. Through the in-depth interviews, the researchers uncovered several themes that exposed the challenges that are often not included in conversations about dying at home. In some cases, challenges arose because there was uncertainty for the decision maker, and some caregivers were not prepared for making decisions regarding the end of a loved one’s life.

The researchers also found that financial resources and strong relationships can help in differentiating good deaths from bad ones. Researchers found that the “good” death experiences involved high levels of emotional support for the dying individuals and the caregivers, and that the place of death played less of a role.

“A few well-known sayings about home are relevant to our findings,” Benson said. “For instance, many people believe there is ‘no place like home,’ which suggests the physical space we call home is paramount when it comes to our comfort. However, another saying, ‘home is where the heart is’ suggests that the essence of home can be replicated in less familiar spaces. When making end-of-life decisions it is important to remember that death can be quite gruesome and that it might be easier on both the dying individual and the caregiver to make a plan that carries the concept of ‘home’ to wherever they might be.”

“The motivations and consequences of dying at home: family perspectives,” was published in a special issue of the Journal of Housing for the Elderly on Environments of Dying, Death, and Caregiving at End-of-Life. Benson served as guest editor for this special issue.

On Living and Dying: A Conversation with a 20-Year Hospice Nurse Veteran


Lori Carter is a nurse for Hospice Care of West Virginia. She’s been working in hospice for 20 years.

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In the next installment of our occasional series Windows into Health Care, health reporter Kara Lofton spoke with hospice nurse Lori Carter. Carter has been a hospice nurse for 20 years. She said for her and for many of the hospice nurses she knows, the work is a calling. She said some of what she does is straight-up nursing — managing pain, dressing wounds, and addressing symptoms of end-stage disease. But the most subtle part of the job is helping families navigate one of the most intimate and emotional times of their lives.

LOFTON: For you, when you think about hospice and the work that you do and being called to it, what does that mean exactly to you?

CARTER: Just being with the patient and the family in the most emotional time of their life. Helping them give each other that last act of love. I appreciate and I feel honored that I am with that patient and that family during that time.

LOFTON: So some people, and I’ve heard especially in Appalachia, can have preconceived notions about what hospice is and what you actually do exactly. Explain to me what you do. What happens when you go into a home for the first time and how does that relationship form?

CARTER: Well, depending on, you know, what is going on with the patient and how early or late in the disease trajectory that we get them, you introduce yourself and…you listen. The big thing is you listen…You can find out f there is struggle already between what is happening with the patient and how the family is dealing with that. Of course, you know, we treat any symptoms that the patient has. I mean, my job I feel is [to be] the patient advocate and just trying to palliate those symptoms that they have inside [so] that they are comfortable.

I find out, you know, is there any things that they want to do before they die? You know, what are they able to do? And I try to facilitate that in any way that I can. I have a bag of ramps in my car right now, [in] that a patient wanted some ramps. I knew that would be the last time he got to eat ramps, so I went and dug some up.

LOFTON: Some people think of hospice as giving up so, to speak. When you hear that what is your reaction to that?

CARTER: I think it’s very sad. You know, we all are going to die. We all are. And, you know, normally the patients that we get — they have already fought for a very long time. This is the last act of love that you can give and, you know, it’s going to happen whether hospice is there or not. And they are most certainly not giving up. I mean, they’re getting ready to go down a path that they’ve never been down either.

LOFTON: Has this work changed how you think about death?

CARTER: It most certainly has. My family was not the type that, you know, went to funerals all the time…I came into hospice blind, really. And I quickly learned that it is a special experience. You have to believe that quality of life is better than quantity.

And I tell you how I cope with things is I will walk into a home, and I will look…there’s always pictures on the walls of, you know, families. And I will look at those. I always do. And I can see what that patient looked like, and how robust they were, and how happy they were. And then I see the patient now, and that actually helps me know what I need to do and how I need to direct the family into what’s happening. You know where they are in this, this experience that they’re getting ready to have.

LOFTON: One of the things I think is interesting about hearing conversations around hospice, especially from providers in hospice, is that we hear a lot about a nursing shortage and yet, and like nursing turnover in hospitals. But hospice seems to have lower turnover rates. And people who become nurses in hospice tend to stay around despite being around death all the time, essentially. Why do you think that is?

CARTER: I think it is a calling. I think you do realize that it’s a special kind of nursing — you fall so much in love with what you do, and the families, and the patients. And I cannot imagine doing anything else. I don’t think it is for every nurse. I don’t. I think that you have a special belief and you want that special relationship with the patient and the family. I worked in the hospital and some nurses think that’s great, and that’s wonderful for them. But I didn’t feel, for me, that I could give the care — and the personal care, maybe I should say — that I wanted to. I just didn’t feel that I could do that. And with hospice, I can.

LOFTON: Does working with people at the end of life change how you live your life now?

CARTER: It does. You know, I have heard so many times from patients: ‘You know, I wish I would have done this or I wish I would have done that.’ I hear of their regrets. I see families and patients try to get over, you know, maybe they had been estranged, child had been estranged from a parent or, you know, a parent left and now they’re, they’re trying to make amends. I think …it’s taught me that I need to ask for forgiveness, not to have regrets, say what I need to say to my loved ones. So that when that time comes, you won’t have those regrets and those losses.

LOFTON: When you hear about things that people wish they had done, are there any themes that stand out to you that lots of people kind of have regrets with at the end of life?

CARTER: Oh, I think a lot of times it’s ‘I should have took that trip.’ ‘I shouldn’t have worked so much.’ ‘I should have spent more time with children or spouses.’ It’s those types of things that, you know, they wish they would have done. Things that may happen in life and you really don’t give it a second thought at the time. It seems to come back at the end of life, no matter how trivial it is — you, you remember, ‘I should have said this’ or ‘I should have done that.’ But hopefully for the most part, I think, you know, they may say those things. But again, it’s usually not big, huge things.

LOFTON: Over the last 20 years that you’ve been working in hospice, how has it changed?

CARTER: Well, when I first started, no one knew what it was. And now it is more mainstream. I think people are more, they understand more, what is happening. It — death — is not shunned like it used to be, you know. People talk about it more. Unfortunately with our drug problem, it has caused some problems for us. I have to count pills every time I go. I have to watch neighbors coming over to visit — we have to find a [secure] place to put the medicine. It used to be able to sit beside the bed, but it can’t do that anymore.

LOFTON: As more young people leave the state, are you seeing [a] smaller family group surrounding a patient at the end of life?

CARTER: I am. And I’m seeing, you know, a lot of times it’s the 90-year-old spouse trying to take care of the 90-year-old husband or wife. Family seems to live out of state a lot of times, and it has definitely caused some problems. Fortunately, we also have a long-term care team. And if the patient needs to be placed, they can still have hospice care. But there’s definitely a lot of family that are not local anymore…they’re looking to hire caregivers, [but] they might not be able to afford caregivers. In that case, we just try to ramp up our visits, and try to pull in anyone that we can possibly pull in to assist that family.

Complete Article HERE!

Woven coffins and affordable funerals as community-run funeral service breathes new life into the death trade

Funeral director Ashleigh Martin with woven casket available at Tender Funerals.

By Sarah Moss

Creative and emotionally healthy funerals are making waves in communities that value personal choices, resourcefulness and good old wholesome naturalness, but for reasons of expense they also appeal to blue collar workers.

A rejuvenated fire station in Port Kembla, cradled between the Illawarra region’s industrial centre and the sea, is home to Tender Funerals: the first not-for-profit funeral service in Australia.

Ashleigh Martin is a part-time director at the parlour.

“We’re about empowering families to make the choices they need to make to have a beautiful funeral,” she said.

“There’s definitely a need in our community for people to be able to have affordable funerals that are authentic.”

Since its inception in 2016, the community-run organisation has guided over 300 families and loved ones through their losses.

The parlour offers a multitude of services that assist people to have memorable personalised ceremonies, the latest trend in the industry is bio-degradable woven wicker coffins, handmade in the Byron Shire.

The funeral parlour in Port Kembla has up-cycled an old firestation turning it into a morgue and reception area, open to the public.

Dignity in death

The not-for-profit is changing the way communities look at death and dying, empowering families to make the choices they need to make, to have a beautiful funeral.

Founder Jenny Briscoe-Hough previously worked in the death industry for

Tender Funerals is the brainchild of director and general manager Jenny Briscoe-Hough.

many years and conceived a new business model by combining funerals with music and art.

The model looks at affordability and encourages people to “own” the experience, to take back their power in the face of death.

“We empower and guide people to have a meaningful, beautiful, send off,” Ms Martin said.

Malika Elizabeth is a local musician whose involvement with the establishment extends to directing and singing in the organisation’s community choir, and acting occasionally as a celebrant.

“She’s a visionary when it comes to community and bringing people together,” Ms Elizabeth said.

“She’s created a space for people just to be with each other, to be with their emotions, and to join together in commonality.”

The hand-woven willow coffins produced in the Byron region are, “sustainably raised from a renewable resource and then hand woven without glues or metals”.

Grassroots ethos

Unlike wooden or cardboard caskets, the woven caskets offered at Tender Funerals are perfect for hand-decorating with ribbons and other personalised items.

“They [clients] just want something unique and different that they can personalise as well by putting flowers on it or weaving through it,” Ms Martin said.

“We know if it is getting buried that it will break down quickly and won’t leach any harmful chemicals into the earth.”

After working in traditional for-profit homes, Ms Martin said that at Tender Funerals it is not about upselling to grieving families.

“It’s very much about thinking about what we can do differently and what we can do to give meaningful tokens back to our families,” she said.

Textile artist Ms Elliot works with cloth and thread assisting people experiencing grief to create vibrant engaging artefacts.

Art for health’s sake

The grassroots ethos is intertwined through every detail of the business, from the handmade and decorated wicker caskets to a fortnightly community sewing circle run by the group.

Tender’s artist-in-residence Michell Elliot illuminates the cyclical nature of life and death with those in grief using muslin and donated funeral flowers.

The colourful cloth she creates is then used as shrouds for bodies, encouraging creative expression to farewell loved ones.

“I think that if clients choose to shroud somebody with one of our tender cloths that it’s done with love, and I think that’s a really beautiful thing,” Ms Martin said.

Ms Elliot also assists in providing a safe space program at the parlour for people to come together, grieve, share stories and sew.

The parlour facilitates a safe meditative space created through the arts for people to connect with their emotions to heal.

“When people feel that maybe they don’t want to see their loved ones being prepared for burial, or they don’t know what to do, how to feel, just sitting and sewing quietly allows those feelings to come, to be processed and to shift and move,” Ms Elliot said.

Music, art and funerals naturally go together

The organisation is also home to an in-house choir.

On Thursday evenings at the old fire station, people come together to sing songs of life, songs of death and songs of love.

Tender Choir facilitators Malika Elizabeth and Jodi Phillis (pictured) believe that bringing sacred ceremony into funerals, that are not necessarily religious, is a good idea.

Choir directors Jodi Phillis and Malika Elizabeth have sung at grave sides, in memorial services and during intimate preparation times.

They said they feel honoured to be at every funeral they attend.

“These elements go together naturally with us because we are musical people, but I think in a community like Port Kembla, where people just aren’t aware that this stuff can actually be available to them, it might be something people just don’t think of,” Ms Phillis said.

“That they can have live music to celebrate the life of the loved one they lost.

According to Ms Phillis the business model adopted by Tender Funerals relies on two fundamental aspects.

“One, to bring the sacred power of music and art into the community, especially for people who aren’t religious but still want to celebrate the life of the deceased,” she said.

“The other really strong element is supporting the arts.”

Selecting the soundtrack for a particular event can be a collaborative experience.

“Generally, families will have an idea of what music will be best for their loved one, but sometimes we make suggestions,” Ms Phillis said.

“It’s kind of whatever works really.”

Malika Elizabeth in consultation with some of the choir members in rehearsal.

“We all have the feeling that music is a spiritual thing,” Ms Phillis said.

“It comes out of us, it’s linked with the heavens, it’s what fills in the gap in the air.

“If anything is going to reach our loved one, it’s going to be music.”

At this point in time Tender’s business model is focussed on the Port Kembla premises, but having survived two years of operations, their success indicates a community movement towards an organic, not-for-profit model, with plans to expand.

Complete Article HERE!

50 Must-Read Books for Tackling Fear of Death

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Sure, it’s morbid to dwell on the fear of dying. It’s also very human.

For those who’d rather read their way through this fear than ignore it (and I think those are equally valid strategies), here’s a list of suggested reading. This list has been compiled with the help of Jaime Herndon, Heather Bottoms, Dana Staves, and Liberty Hardy. Blurbs are adapted from Goodreads.

Novels About Death

Memento Mori by Muriel Spark

“In late 1950s London, something uncanny besets a group of elderly friends: an insinuating voice on the telephone informs each, “Remember you must die.” Their geriatric feathers are soon thoroughly ruffled by these seemingly supernatural phone calls, and in the resulting flurry many old secrets are dusted off.”

White Noise by Don DeLillo

“Winner of the 1985 National Book Award, White Noise tells the story of Jack Gladney, his fourth wife, Babette, and their four ultramodern offspring, as they navigate the rocky passages of family life to the background babble of brand-name consumerism.”

The Picture of Dorian Gray by Oscar Wilde

“Written in his distinctively dazzling manner, Oscar Wilde’s story of a fashionable young man who sells his soul for eternal youth and beauty is the author’s most popular work.”

A Long Way Down by Nick Hornby

“In four distinct and riveting first-person voices, Nick Hornby tells a story of four individuals confronting the limits of choice, circumstance, and their own mortality. This is a tale of connections made and missed, punishing regrets, and the grace of second chances.”

The Cure for Grief by Nellie Hermann

“This disarmingly intimate and candid novel follows Ruby through a coming-of-age marked by excruciating loss, one in which the thrills, confusion, and longing of adolescence are heightened by the devastating events that accompany them.”

The Caregiver by Samuel Park

A moving and profound story that asks us to investigate who we are—as children and parents, immigrants and citizens, and ultimately, humans looking for vital connectivity.”

If Cats Disappeared from the World by Genki Kawamura

“Our narrator’s days are numbered. Estranged from his family, living alone with only his cat Cabbage for company, he was unprepared for the doctor’s diagnosis that he has only months to live. But before he can set about tackling his bucket list, the Devil appears with a special offer: in exchange for making one thing in the world disappear, he can have one extra day of life. And so begins a very bizarre week…”

One Hundred Years of Solitude by Gabriel García Márquez

“The brilliant, bestselling, landmark novel that tells the story of the Buendia family, and chronicles the irreconcilable conflict between the desire for solitude and the need for love.”

The Heart by Maylis de Kerangal

The Heart takes place over the twenty-four hours surrounding a heart transplant, as life is taken from a young man and given to a woman close to death. In gorgeous, ruminative prose, it examines the deepest feelings of everyone involved as they navigate decisions of life and death.”

My Sister’s Keeper by Jodi Picoult

“A provocative novel that raises some important ethical issues, My Sister’s Keeper is the story of one family’s struggle for survival at all human costs and a stunning parable for all time.”

Two Old Women: An Alaskan Legend of Betrayal, Courage and Survival by Velma Wallis

“In simple but vivid detail, Velma Wallis depicts a landscape and way of life that are at once merciless and starkly beautiful. In her old women, she has created two heroines of steely determination.”

The Buried Giant by Kazuo Ishiguro

The Buried Giant begins as a couple set off across a troubled land of mist and rain in the hope of finding a son they have not seen in years.”

East of Eden by John Steinbeck

“Set in the rich farmland of California’s Salinas Valley, this sprawling and often brutal novel follows the intertwined destinies of two families—the Trasks and the Hamiltons—whose generations helplessly reenact the fall of Adam and Eve and the poisonous rivalry of Cain and Abel.”

Beloved by Toni Morrison

“Staring unflinchingly into the abyss of slavery, this spellbinding novel transforms history into a story as powerful as Exodus and as intimate as a lullaby.”

After Many a Summer Dies the Swan by Aldous Huxley

“A Hollywood millionaire with a terror of death, whose personal physician happens to be working on a theory of longevity-these are the elements of Aldous Huxley’s caustic and entertaining satire on man’s desire to live indefinitely.”

Cat’s Cradle by Kurt Vonnegut

“Told with deadpan humour and bitter irony, Kurt Vonnegut’s cult tale of global destruction preys on our deepest fears of witnessing Armageddon and, worse still, surviving it…”

The Road by Cormac McCarthy

The Road is the profoundly moving story of a journey. It boldly imagines a future in which no hope remains, but in which the father and his son, “each the other’s world entire,” are sustained by love.”

Family Matters by Rohinton Mistry

“At the age of seventy-nine, Nariman Vakeel, already suffering from Parkinson’s disease, breaks an ankle and finds himself wholly dependent on his family. His step-children, Coomy and Jal, have a spacious apartment (in the inaptly named Chateau Felicity), but are too squeamish and resentful to tend to his physical needs. Nariman must now turn to his younger daughter, Roxana, her husband, Yezad, and their two sons, who share a small, crowded home. Their decision will test not only their material resources but, in surprising ways, all their tolerance, compassion, integrity, and faith.” 

Plays About Death

Three Tall Women by Edward Albee

“As an imperious, acerbic old woman lies dying, she is tended by two other women and visited by a young man. Albee’s frank dialogue about everything from incontinence to infidelity portrays aging without sentimentality.”

No Exit by Jean-Paul Sartre

“The play is a depiction of the afterlife in which three deceased characters are punished by being locked into a room together for eternity.”

The Iceman Cometh by Eugene O’Neill

The Iceman Cometh focuses on a group of alcoholics who endlessly discuss but never act on their dreams, and Hickey, the traveling salesman determined to strip them of their pipe dreams.”

The Ferryman by Jez Butterwoth

“Armagh, 1981. The Carney farmhouse is a hive of activity with preparations for the annual harvest. A day of hard work on the land and a traditional night of feasting and celebrations lie ahead. But this year they will be interrupted by a visitor.”

Science and Medicine

Being Mortal: Medicine and What Matters in the End by Atul Gawande

“In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending.

The Emperor of All Maladies: A Biography of Cancer by Siddhartha Mukherjee

“A magnificent, profoundly humane “biography” of cancer—from its first documented appearances thousands of years ago through the epic battles in the twentieth century to cure, control, and conquer it to a radical new understanding of its essence.”

How to Change Your Mind: What the New Science of Psychedelics Teaches Us about Consciousness, Dying, Addiction, Depression, and Transcendence by Michael Pollan

“Could psychedelic drugs change our worldview? One of America’s most admired writers takes us on a mind-altering journey to the frontiers of human consciousness.”

How We Die: Reflections on Life’s Final Chapter by Sherwin B. Nuland

“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.”

Final Exam: A Surgeon’s Reflections on Mortality by Pauline W. Chen

“A brilliant young transplant surgeon brings moral intensity and narrative drama to the most powerful and vexing questions of medicine and the human condition.”

From Here to Eternity: Traveling the World to Find the Good Death by Caitlin Doughty

“Fascinated by our pervasive fear of dead bodies, mortician Caitlin Doughty embarks on a global expedition to discover how other cultures care for the dead.”

The Morbid Anatomy Anthology by Joanna Ebenstein and Colin Dickey

“Since 2008, the Morbid Anatomy Library of Brooklyn, New York, has hosted some of the best scholars, artists and writers working along the intersections of the history of anatomy and medicine, death and the macabre, religion and spectacle. The Morbid Anatomy Anthology collects some of the best of this work in 28 lavishly illustrated essays.”

How We Live and Why We Die: The Secret Lives of Cells by Lewis Wolpert

“Biologist Lewis Wolpert eloquently narrates the basics of human life through the lens of its smallest component—the cell.”

Body of Work: Meditations on Mortality from the Human Anatomy Lab by Christine Montross

“A hauntingly moving memoir of the relationship between a cadaver named Eve and the first-year medical student who cuts her open.”

Advice for Future Corpses (and Those Who Love Them): A Practical Perspective on Death by Sallie Tisdale

“A lyrical, thought-provoking yet practical perspective on death and dying in this frank, direct and compassionate meditation on the inevitable.

Memoirs About Death

Nothing to Be Frightened of by Julian Barnes

“A memoir on mortality that touches on faith and science and family as well as a rich array of exemplary figures who over the centuries have confronted the same questions he now poses about the most basic fact of life: its inevitable extinction.”

When Breath Becomes Air by Paul Kalanithi

“A profoundly moving, exquisitely observed memoir by a young neurosurgeon faced with a terminal cancer diagnosis who attempts to answer the question: What makes a life worth living?”

The Year of Magical Thinking by Joan Didion

“From one of America’s iconic writers, a stunning book of electric honesty and passion. Joan Didion explores an intensely personal yet universal experience: a portrait of a marriage–and a life, in good times and bad–that will speak to anyone who has ever loved a husband or wife or child.”

The Bright Hour: A Memoir of Living and Dying by Nina Riggs

“An exquisite memoir about how to live–and love–every day with “death in the room,” from poet Nina Riggs, mother of two young sons and the direct descendant of Ralph Waldo Emerson.”

Traveling with Pomegranates: A Mother and Daughter Journey to the Sacred Places of Greece, Turkey, and France by Sue Monk Kidd and Ann Kidd Taylor

“In this dual memoir, Sue Monk Kidd and her daughter, Ann, chronicle their travels together through Greece and France at a time when each was on a quest to redefine herself and rediscover each other.”

The Unwinding of the Miracle: A Memoir of Life, Death, and Everything That Comes After by Julie Yip-Williams

“As a young mother facing a terminal diagnosis, Julie Yip-Williams began to write her story, a story like no other. What began as the chronicle of an imminent and early death became something much more–a powerful exhortation to the living.”

Dying: A Memoir by Cory Taylor

“Written in the space of a few weeks, in a tremendous creative surge, this powerful and beautifully written book is a clear-eyed account of what dying has taught Cory.”

Everything Happens for a Reason: And Other Lies I’ve Loved by Kate Bowler

“A divinity professor and young mother with a Stage IV cancer diagnosis explores the pain and joy of living without certainty.”

The End of Your Life Book Club by Will Schwalbe

“The inspiring story of a son and his dying mother, who form a “book club” that brings them together as her life comes to a close.”

Driven: A White-Knuckled Ride to Heartbreak and Back by Melissa Stephenson

“A searing memoir about one woman’s road to hope following the death of her troubled brother, told through the series of cars that accompanied her.”

Religious

Quran

“The words of Muhammad who claimed to get them from the angel Gabriel.”

The Tibetan Book of the Dead

“It includes one of the most detailed and compelling descriptions of the after-death state in world literature, practices that can transform our experience of daily life, guidance on helping those who are dying, and an inspirational perspective on coping with bereavement.”

The Bhagavad Gita

The Bhagavad Gita is an intensely spiritual work that forms the cornerstone of the Hindu faith, and is also one of the masterpieces of Sanskrit poetry.”

Bible

Old Testament + New Testament

Children’s Books About Death

Ghosts by Raina Telgemeier

“As the time of year when ghosts reunite with their loved ones approaches, Cat must figure out how to put aside her fears for her sister’s sake – and her own.”

The Witches by Roald Dahl

“This is not a fairy-tale. This is about real witches.”

Fear of Missing Out by Kate McGovern

“When Astrid learns that her cancer has returned, she hears about a radical technology called cryopreservation that may allow her to have her body frozen until a future time when–and if–a cure is available.”

Tuck Everlasting by Natalie Babbitt

“Doomed to – or blessed with – eternal life after drinking from a magic spring, the Tuck family wanders about trying to live as inconspicuously and comfortably as they can. When ten-year-old Winnie Foster stumbles on their secret, the Tucks take her home and explain why living forever at one age is less a blessing that it might seem.”

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Mother grapples with grief in ‘Where Reasons End’

By Michael Magras

It’s not surprising that someone whose whole life revolves around words would turn to literature in a time of tragedy to make sense of her suffering. The paradox is that the person most likely to seek solace from words is also the most likely to realize their insufficiency.

One such person is the unnamed narrator of “Where Reasons End,” Yiyun Li’s new novel. The 44-year-old narrator is a writer of stories and a grieving mother. For reasons that are never explained, her 16-year-old son, whom she calls Nikolai, “a name he had given himself,” killed himself only a few months earlier — a painful parallel to real life, as Li’s own 16-year-old son committed suicide in 2017

The novel is a series of imagined conversations between mother and son. From the start, we learn that the mother is agonizingly self-aware, both of herself and of the possible futility of these conversations.

That and the parallel to Li’s life are what make the experience of reading this work so powerful: the knowledge that the narrator needs the comfort of words yet senses their limitations. “I was a generic parent grieving a generic child lost to an inexplicable tragedy,” she says in the opening chapter. She seeks specificity, the need to “meet in a world unspecified in time and space … a world made up by words, and words only.”

One of the most arresting aspects of this novel is the way in which Li subverts expectations. One might expect Nikolai to be a sweet boy offering relentless comfort to his grieving mother. He’s a charmer, all right, a precocious son who painted whimsical landscapes, played the oboe and liked classical music and showtunes. And he was a bad speller who labeled a folder of songs “Edith Pilaf.”

But he has a sardonic edge that keeps him from seeming too precious. When his writer mother tells him that so many people miss him, Nikolai says she’s succumbing to the lure of clichés and admonishes her with, “You promised that you would understand.” When he accuses her of wanting him to feel sad for himself, he adds, chillingly, “I’m not as sad as you think. Not anymore.”

The dialogues in “Where Reasons End” cover a wide range of topics. Mother and son discuss love and memory and whether those capacities really do keep people alive forever. They discuss the capriciousness of time. Nikolai chides her for her dislike of adjectives, which she defends by saying that nouns, not adjectives, preserve memories. Besides, “I oppose anything judgmental,” she says, “and adjectives are opinionated words.”

Much of this book is devoted to words, which is not surprising given that its narrator lives by them: “Words said to me. Words not meant for me but picked up by me in any case. Words in their written form. Words that make sense and words that make nonsense.” When one is in search of helpful words, poets are a good place to start, as their facility often crystallizes hard-to-express truths. Indeed, the narrator references many poets, including Marianne Moore, Elizabeth Bishop — the novel’s title comes from Bishop’s poem “Argument” — and Wallace Stevens.

Even poets, however, provide limited comfort, and the mother depicted here knows it. This realization compounds her grief as much as it ameliorates. “Words provided to me — loss, grief, sorrow, bereavement, trauma — never seemed to be able to speak precisely of what was plaguing me,” she says. “One can and must live with loss and grief and sorrow and bereavement.”

Later, she adds, “We feel at a loss for words when they can’t do fully what we want them to.” To which Nikolai offers as wise a defense of words as one is likely to find. “They never can,” he says, but, “Why not make do with the percentage they can achieve?”

The book gets repetitive after a while — much is made of the Latin derivations of words, and some of Nikolai’s dialogue is too stilted even for a sophisticated teen — yet its message is nonetheless a sobering one. Nothing can ever fill the hollows formed by tragedy, yet the desire to fill them is every bit as keen as the loss. If even a fraction of the emptiness is replaced, then the quest is worth the effort.

Late in the novel, the narrator quotes Stevens’s poem “This Solitude of Cataracts”: “He wanted the river to go on flowing the same way, To keep on flowing.” Anyone who has ever lost a loved one — that would be all of us — will relate. If only they were still here to keep the river of our lives flowing as it once had.

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