My grandmother died from metastatic breast cancer a little over a year ago. At nearly 93, her death was not a surprise, exactly, but I just never actually thought she would die, much less from the invasive cancer that she had overcome once before. Even her oncologist had told me at the beginning of her recurrence that the breast cancer wouldn’t kill her; old age or her heart disease would. We were wrong.
My grandmother was the last living grandparent I had. At the age of 38, I knew I was lucky to have any grandparents left. But when she died on January 30, 2019, I wasn’t prepared for the devastation that snuck in—gradually, and then very suddenly.
Grief can be decimating. But as everyone knows, time doesn’t stop for your pain. It doesn’t even slow down, no matter how much you want it to. The kid still needs to be washed and fed and taken to preschool, and you still have deadlines to meet, work to produce, and days to get through.
After my grandmother died (even a year later, those words just don’t look right; they can’t be right) it was hard to write non-work things, but one thing I was still able to do was read. I read and read and read. I read over 250 books in 2019. When my son went to bed for the night, I’d finish up any work from the day and then sit down with a book or three. On the page, I found escape. I found story and distraction.
When it had become clear that my grandmother was in her last weeks, I turned to Joan Didion, as I had in the past when other family members were dying. The Year of Magical Thinkingand Blue Nightswere familiar in their grief; in their measured examination of liminal spaces and how life changes in the ordinary instant.
In the past, being a medical/healthcare person and one who loves oncology, there’s a chance I would have dived into medical books. But this time, I just couldn’t. I had books come across my desk about hospice, a “good death,” and dying, and if I’m being honest, I would often really want to read these, but could rarely actually do it. A few months after my grandmother’s death, I read Edwidge Danticat’s slim volume of The Art of Death: Writing the Final Story. I wanted to know how to write about this—and this book was perfect. A mix of memoir, craft, and instruction, it was just the amount of each that I needed.
As time went on, I read some books about death and cancer. Sunita Puri’s book about becoming a palliative care physician, That Good Night: Life and Medicine in the Eleventh Hour, was a fascinating read. I approached it as research for a potential project, so I was able to read it with a bit of detachment. The Undying by Anne Boyer, a memoir about breast cancer, was a bit harder to read. The prose itself is brilliant and strong, and I often had to pause and think about what I had just read. But it also cut a bit close to the bone, and I took much longer to read this one than I normally would have. Once More We Saw Stars, by Jayson Greene, was a book that I gravitated to early on, but when the ARC arrived, I was consumed with ambivalence. It took weeks to get through the first 20 pages. As the mother of a toddler, as someone still reeling from the loss of a loved one—it may not have been the best choice of a read just then. But I was eventually able to steel myself and get through, and it was a deeply raw, haunting book that I still think about today. I found threads of connection in it and held on.
I was sent a copy of In the Time of the Butterflies, by Julia Alvarez when the 25th anniversary edition was released. I’d somehow never read Alvarez before. The story about living under a dictator, political tyranny, and rebellion felt especially necessary, and her prose is gorgeous, with the characters well-drawn and pulling you in. Every time I put this book down, I resented having to leave the pages and rejoin the outside world. It was a much-needed escape.
I read memoirs that turned the genre on its head like Ordinary Girls by Jaquira Diaz, How We Fight for Our Lives by Saeed Jones, and Girl on Film by Cecil Castellucci. I read genre-defying, beautiful books like PET by Akwaeke Emezi and quietly haunting novels like The Last True Poets of the Sea by Julia Drake. I would read and reread sentences and pages of these books because the prose was so precise and cutting, or because it was so inventive and tumbled off my tongue, creating whole worlds in my head as I moved through the stories. Life was packed onto every single page of so many books I read this year, and maybe there’s something to that when you’re dealing with grief—seeing pages that can barely contain the story of a life reminds you of how much living there’s still to be done.
Looking at my reading in 2019, I read many fantastic books—books that took me out of my comfort zone and made me think. But I also used books as escape and distraction. If I was reading, I couldn’t dwell on how much I missed my grandmother and wished she could see what my son was doing now. I couldn’t think about how much I missed going to dinner with her multiple times a week, or how many times I would go to call her and then realize it was useless. Does this diminish the books I read this year? I’m not sure. I think I’d be better focused now than I was last year, and I plan on rereading some of my favorites to see what I might have missed the first time around. But reading, as it always has been, was a balm. It helped me get through a difficult year. For that, for the stories I savored and the characters I met and things I learned, I am grateful.
In the difficult months after her husband Robert’s death, Joan Price found herself confronted with a veritable mountain of self-help books about grieving. None of them touched on the subject that would preoccupy her for the coming decade: What about sex?
Price is a sex educator, with an emphasis on older people, so perhaps she was primed for this question. But others have noticed this glaring absence in the literature of grieving, too. “The unspoken message, as I received it: keep your mouths shut about sex,” writes Alice Radosh in Modern Loss: Candid Conversations about Grief. “I turned to self-help books for widows, and found that there, too, discussions about sex were pretty much nonexistent.”
Price is used to older people’s sex lives being ignored. “I call it the ‘ick factor’ our society has,” she tells me, when I meet her near her Northern California home. “Eww: old people having sex, wrinkly sex!” she giggles to herself. Price says this ageist notion prevents older people from enjoying their sexuality, a vital part of being human, however old one is.
“We have internalized this ‘ick factor,’” she says. “We see ourselves as undesirable, as over the hill. We see ourselves as needing to say goodbye to sex when things don’t work the way they used to.” And therein lies Joan Price’s mission: to “talk out loud about senior sex,” even in life’s hardest moments. Her new book, Sex After Grief: Navigating Your Sexuality After Losing Your Beloved, seeks to fill the void in grieving literature.
A Life-Changing Love Affair
Seeing Price now, you’d have little external indication that she spent years struggling with the weight of bereavement. The first word I think of when I meet her is “spritely.” Just shy of five feet tall, Price has a twinkle of a laugh that frequently punctuates our conversation, and a playful, vibrant sense of fashion. Her fingernails are painted the purple of grape candy, and she’s wearing dangly earrings of bright, geometric shapes.
At 76, her calendar is filled with giving talks on sexuality, reviewing sex toys for her blog and teaching a bi-weekly line dancing class at a local fitness center.
It was at that line dancing class that a couple of decades ago, Price met the man who would become her husband, an artist named Robert Rice. “He walked in, and I forgot how to breathe,” she tells me. “As soon as he started moving his hips, I lost my place in the dance I was teaching. I just couldn’t take my eyes off this man.”
Price was in her late fifties at the time, already in her second career, having left a job teaching high school for one writing about fitness. The last thing she expected was a life-changing love affair. The blossoming of her romance with Robert nurtured yet another new area of work for her: writing about sex.
“It was an amazing revelation because sex was fantastic with him, but it was not the same as younger-age sex,” she says. “There was much slower arousal… It just took a lot of earnest effort on his part… It was very different. But I was feeling that sex at our age was better, that that wasn’t a defect.”
She wrote a first book, Better Than I Ever Expected: Straight Talk About Sex After Sixty, celebrating that discovery. A second book, Naked at Our Age, sought to answer the questions and resolve problems that older people were experiencing in their sex lives, from what position to use when pained by arthritic joints to a definition of sex that didn’t center orgasm as the only worthwhile goal.
It was when she was just starting to write that book, that Rice was diagnosed with cancer. “I put a hold on everything,” she says. When he died in 2008, Price was completely undone.
“I thought because I knew Robert was dying, that I was getting prepared for it,” she says. “You can’t prepare for that. You cannot know how that bludgeons your brain and your heart. It was all I could do to remember to brush my teeth.”
She would cry all day, pull herself together to drive to the health club, and teach her line-dancing class. Then she’d resume crying in the locker room, and weep all the way home.
A Difficult Subject to Discuss
For months, Price writes, her sexuality was dormant. That period of deep grief was followed by the fits and starts of trying to find her way into a new version of her romantic and sex life. This became the fodder for Sex After Grief. Price wanted to give other grievers a manual for navigating the tangle of experiences they might have.
“Some people feel frenetic sexual energy and yearn for a sexual outlet right away,” she writes. “Some start dating immediately, some gradually, some not ever. Some withdraw from sexual possibility. Some share their bodies but not their hearts. Many give themselves sexual release to the fantasy of their lost loved one.” All of these different responses are normal, Price insists. There isn’t one right way to move through it.
In keeping with the absence of sex in the literature of grief, there’s been very little scientific research into it, either. One of the few studies of “sexual bereavement,” as its authors term it, came out in 2017 in the journal Sexual and Reproductive Health Matters.
The study revealed that 72% of respondents (who were women age 55 and older) anticipated missing sex with their partner, and that 67% would want to initiate a discussion with a friend about it. But there was also a disconnect: 67% reported that it’d be difficult to discuss sex with a friend whose partner had died, attributing that difficulty to embarrassment.
Price addresses that embarrassment head-on in her new book. She dives into the thicket of myths and taboos of sexuality after loss — from questions of loyalty to one’s deceased partner to how long grieving should last — offering readers scripts for how to respond to advice that doesn’t resonate with their experience.
“Because in the moment, you know, you think, ‘Oh my gosh, am I supposed to take that on?’” she tells me. “’Am I supposed to be embarrassed? Am I supposed to be shamed? Am I doing the wrong thing? Am I doing grief wrong?’ You’re not doing grief wrong.”
The book delves into the practicalities of solo sex, as well as various approaches for dating and different relationship models for older people who may not want to follow a marriage with another long-term relationship, but still want to remain sexually active.
Price is an advocate for thinking about a trusted “friends-with-benefits” arrangement, and quotes a 2013 “Singles in America” study from Match.com that revealed 58% of single men and 50% of single women had had one, including one in three people in their 70s.
‘You’re Not Making Any Kind of Commitment You Can’t Reverse’
She writes about how she kept two journals: one to chronicle the difficulties of grieving and another to record treasured memories that kept her husband alive for her. She writes about feeling out her own personal timetable for when to start having sex again, and with whom.
Price had some false starts, which she found instructive. “If you don’t know if you’re ready to date, it’s okay to try it and then put dating on hold if it feels wrong,” she writes. “You’re not making any kind of commitment you can’t reverse. The same is true for sex. You can explore, then change your mind at any point.”
Price’s own story is one of persistence, of refusing to allow society’s derision of aging bodies to stop her from enjoying her own and of not allowing even the tremendous loss of her loving partner to stop her from engaging with her sexual self. The story, she says, is always continuing.
In the past couple of years, it’s had yet another twist. Price put up a profile on OKCupid, and, after more than a few disappointing dates, she met a retired anthropologist named Mac Marshall who lived nearby. Marshall had recently lost his long-term partner to illness. They shared their grief stories amidst a flurry of other information on their early dates, and in emails.
Price dedicates Sex After Grief both to her husband Robert, “who lives in my memory and in my heart,” and to Mac, “who shows me that joy is possible after grief.”
As Americans continue to age, hospices are exploring new ways to bring peace and calm to the often slow and painful process of end-of-life care. According to the CDC, in 2015, an estimated 1.4 million individuals on Medicare were patients in a hospice setting.
Quadrupling in size in the last twenty years, hospices are investing in creating a patient-centric approach that dismantles beliefs that hospices are cold, and unfeeling institutions. From massage to aromatherapy, some hospices are offering new additions to their programs including music and integrating family into meaningful experiences. While many hospices are focused on offering a thoughtful quality of care, many end-of-life-care specialists are also advocating for marijuana.
MorseLife recently unveiled a 2019 study focused on advances in hospice care and found changing attitudes on medical marijuana. They cited that, “87% of Americans support the use of medical marijuana as a treatment option for terminally ill patients, with nearly three in five Americans (58%) expressing strong support.”
“Marijuana is used in the hospice care setting to ease spiritual and existential suffering, with some studies showing an important therapeutic role for patients faced with the despair of a terminal illness, as well as the loss of function that accompanies it. A mild euphoria or sense of well-being can ease a patient’s mind, body and spirit as they come to terms with their fate.”
Stuck in political limbo
While some hospice programs are embracing medical cannabis, some are facing uncertainty about whether or not to allow medical marijuana, even when it’s legal inside their particular state. With an ever-expanding list of states that allow marijuana both medically and recreationally, hospices are taking an evidence-based, risk-management-forward approach to ensure they comply legally and ethically.
Changing attitudes are allowing for researchers to gain more insight and information regarding the role cannabis and CBD can both play in hospice and palliative care settings. Published in the Journal of Palliative Medicine, an October 2019 study focused on the responses of over 300 palliative care professionals from over 40 states on the use of medical cannabis. The study found “overwhelming support” for the use of medical cannabis in a hospice setting:
Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC (medical cannabis) is appropriate for hospice patients to have access to and use.
Citing barriers such as legal status, clinical safety, and societal influence, the study believes opportunities exist to better support hospice providers and patients with education, research and policies that elevate the use of medical cannabis.
With new patients entering hospice every day and both clinicians and doctors looking to supplement old pain medicines with newer more effective treatments, marijuana will remain a top topic for years to come.
After Robert Alexander died at 51 during heart surgery in June 2018, after he was taken from the hospital to the facility that would recover the tissue and bone he had donated, he was brought to his uncle’s farm in Hinton, Okla., where his six siblings, his mother and other family members and friends had gathered to give him a home funeral.
They laid him out on a sturdy folding banquet table and dressed him in well-worn bluejeans, a Harley Davidson bandanna, a long-sleeved Affliction T-shirt and his black leather vest painted with the American flag. On the wall behind him, they hung a blanket emblazoned with a flaming skull.
A mechanic, Mr. Alexander had loved motorcycles, though his health and finances had kept him from being a regular rider. After he was properly adorned, and “looking pretty badass,” as his sister Tawnya Musser said, his siblings and their mother gathered around him, and a brother-in-law took a family photo using his smartphone.
“We couldn’t think of a time when all of us had been together with Mom,” Ms. Musser, 34, said. “So we had the conversation. Did Mom want a photo with all seven of her children and was it morbid that one of them was dead?”
There ended up being several photographs. They are startling and beautiful. Mr. Alexander looks peaceful and regal. The siblings have shared them among themselves, but the images don’t live on social media, as many contemporary death photos do.
In a collision of technology and culture, of new habits and very old ones, we are beginning to photograph our dead again.
For families like Mr. Alexander’s who are choosing home funerals and following natural death practices — D.I.Y. affairs that eschew the services of conventional funeral parlors — photography is an extension and celebration of that choice.
Family members are sitting with kin in hospice, or taking them home from hospitals, and continuing to care for them after they die, often washing their bodies and then adorning them, as Mr. Alexander’s family did, with favorite clothes, flowers, cards, books and other totems. They are sending their dead off as their grandparents used to, and recording the event and its aftermath with their smartphones.
“You can die in a way that has beauty attached,” said Amy Cunningham, 64, a funeral director in Brooklyn who specializes in “green” burials, without embalming or metal coffins, and assists families who are caring for their dead at home.
“The photograph seals the emotion,” Ms. Cunningham said. “And with cellular phones ever-present, we’re going to be recording all kinds of things we never did previously. Death is just one of them. Though when you’re Facebook posting and the images are wedged between the latest Trump atrocity and cats who look like Hitler it can be jarring.”
So, too, is the now common experience of seeing emoji applied to tragic events. Do you choose the weeping smiley face or just hit “like”?
The End of the Timeline
When Louise Rafkin posted a photo of her mother, Rhoda Rafkin, on Facebook the night of her death at 98 in September with her golden retriever at her side, it rattled some family members and friends.
Ms. Rafkin, 61, an author and martial arts teacher in Oakland, Calif., who is also a contributor to The New York Times, described how she and others had carried Rhoda outside to the garden she had loved. They transported her on an improvised stretcher, a surfboard borrowed from neighbors, and with help from their college-age sons.
Rhoda was dressed in a blue caftan and strewn with sunflowers, roses and gladioli. They tucked her into a sheet, lit candles and sat with her until it was dark. It is a lovely image, shot at the magic hour, as filmmakers like to say of the time just before dusk, but it shocks nonetheless.
“I was crazy about my mom and I wasn’t fazed by her being dead,” Ms. Rafkin said, noting that Rhoda, an educator, had been in hospice for more than six months. “I’ve been through the AIDS epidemic. I’m used to death. There are ways you can make this meaningful. Although I’m not religious, I am a deep believer in ritual and how that can heal and provide context.”
The Facebook post was a way to announce Rhoda’s death, Ms. Rafkin said, adding, “I’m pretty sure my mother would have disapproved, and that’s a tad unsettling. ‘No folderol,’ she said about the whole process.”
Some family members had mixed reactions. “I think what she did in the garden was beautiful,” said Ashley Peterson, 31, of Ms. Rafkin, who is her aunt. “But I felt like posting the photos could make people uncomfortable and leave an image in their minds they did not want to see. ”
Susan Sontag wrote that photography has its own ethics: It tells us what we are allowed to see and what’s taboo. (In the age of TikTok, these rules have evolved beyond all imagining.) If we are more familiar with the deaths of strangers, their violent ends captured by photojournalists, maybe that’s because the deaths of our intimates have been at a remove for so long.
There have been exceptions, of course, like the harrowing images that emerged during the AIDS epidemic from photographers like Therese Frare and artists like David Wojnarowicz, whose tender portraits of his friend and mentor Peter Hujar are holy-seeming and sacramental.
“In one sense it’s surprising because we’ve been so disconnected from death in the last century or so,” said Bess Lovejoy, the author of “Rest in Pieces: The Curious Fates of Famous Corpses,” published in 2013, of the resurgence of home death photography. Ms. Lovejoy is also a member of the Order of the Good Death, an organization of funeral professionals, artists and scholars that prepare a culture generally in denial about death.
“But we are returning to the older ways,” she went on, “a movement backward that some say began in the ’70s, with the back-to-nature movement and midwifery and natural births. The natural death movement is part of that. And these photos are unsurprising, too, because we carry our smartphones all the time, and it’s almost like if there isn’t a photo it didn’t happen. Now everyone is a photographer.”
Modern photography was born in 1839, when Louis Daguerre refined a process for capturing an image on silver-plated copper. For decades, one of the most common uses of this new technology was the post-mortem photo: an artfully composed image, taken by a professional photographer, of dead family members in all manner of poses. Dead children in the laps of their parents, often with their eyes painted open; dead adults dressed in their finest clothes; even dead parents holding their living children; or entire families, wiped out by diseases like cholera, typhoid or diphtheria, nestled together in bed.
These were prized mementos, most often the only photograph that was ever taken of the subject, said Stanley B. Burns, 81, the quirky ophthalmologist behind the Burns Archive, a collection of post-mortem and medical photos, among other intriguing photographic genres, stored in a chockablock townhouse in Midtown Manhattan.
The photos in Dr. Burns’s “Sleeping Beauty” books (there are three) are both ghoulish and gorgeous. Dr. Burns pointed out that the subjects tended to look pretty good, because the plagues that felled them did so quickly.
The images have been inspiration and provided material for collectors and Victoriana enthusiasts like Joanna Ebenstein, 48, a writer and curator who was a founder of the idiosyncratic Morbid Anatomy Museum, now closed, in Brooklyn. “Post-mortem photographs can be seen as a Western form of ancestor veneration,” said Ms. Ebenstein, a practice that began to decline when death was outsourced to the clinical environments of hospitals and funeral homes, “and it became taboo to talk about.”
(In 1910, Ladies’ Home Journal rebranded the parlor, where Americans had been laying out their dead for nearly a century, as “the living room” and the nascent funeral industry took the word “parlor” for its activities.)
But what really curtailed post-mortem photography and the elaborate mourning rituals behind it, according to Dr. Burns, was World War I. “There was so much death,” he said. “If everyone is mourning, you lose your fighting spirit. It’s not patriotic.”
“What’s happening now is that people are taking back that process,” Dr. Burns continued. “But the impulse to photograph is the same as it was for the Victorians. They want to show they have seen their person through to the end. ‘I’ve done this work, I’ve loved her to the end.’ It’s your last bond, and you want to document that.”
As the funeral industry slowly evolves from Big Casket to include a cadre of overwhelmingly female and digitally native professionals with all manner of titles (end of life teachers, death doulas and others), they are displaying their work, with humor and photographs, on social media.
Their message: Get comfortable with death, it doesn’t have to be so scary, and here are photos to prove it.
They share images of the dead attended by family members in their beds, or shrouded in natural fabrics cinched with rope at a grave site. They perform death themselves, as Melissa Unfred, 41, a natural mortician based in Austin, Texas, sometimes does, lying in shallow graves strewn with flowers and turf. Ms. Unfred, who sells “Cremate the Patriarchy” T-shirts on Etsy, is the Mod Mortician of Twitter and Instagram, one of many evangelists for the so-called Death Positive movement.
Caitlin Doughty, 35, a funeral director who describes herself as a mortician activist and funeral industry rabble rouser, recently re-enacted a Victorian-style post-mortem photo shoot with a tintype photographer at the Merchant House Museum in Manhattan, and shared it on YouTube.
Ms. Doughty is the founder of the Order of the Good Death and the author of “Will My Cat Eat My Eyeballs?” published last September, “Smoke Gets in Your Eyes and Other Lessons from the Crematory” and other jauntily titled books designed to demystify death. With her Bettie Page crop, she is an avatar of the goth-inflected sub-tribe of death professionals.
“It’s not like no one never took a photo of Mom in the coffin,” Ms. Doughty said. “I have pictures of my grandparents in their caskets fully embalmed. But the sense of ownership has changed. It’s not, ‘Mom is handed to the funeral parlor and they do something behind the scenes and sell the body back to you.’ Sure, you could take photos but it’s like a statue in a museum. The product of someone else’s art. My sense of why we are seeing more and more photos of these natural bodies is because the families have prepared them themselves, they’ve done a job together and they are proud of their work.”
Ms. Doughty advises families on home death rituals and best practices, like how to keep the dead cool with packs of dry ice. “One family texted me photos as they worked, though not to say, ‘How are we doing?’ but, ‘Look how beautiful.’ I think people have this fear that Mom is going to be this otherworldly creepy thing, and then when that doesn’t happen, they want to capture it.”
Ms. Cunningham, the funeral director in Brooklyn, recalled addressing a group of Unitarians in Albany a few years ago, and saying that she wasn’t sure she would want to be viewed, post-mortem, by her friends and family. That she would prefer to be looking her best. A nonagenarian yelled out, quite sharply, as she remembered, “‘You’ll get over that!’”
“And that got me thinking,” Ms. Cunningham said. “Wouldn’t it be wonderful to die unfettered and free from worrying about how I look?”
Cancer patients and others with terminal illnesses have long used photos and videos to bear witness to their suffering and make visible that which is considered off limits — on blogs, Twitter and now TikTok — and have encouraged family members and friends to do so on their behalf when they are no longer able to, pushing visual and emotional boundaries well beyond what may be considered comfortable.
As in the Victorian era, post-mortem photographs of children have a terrible urgency and mission. Now I Lay Me Down to Sleep is an organization of volunteer photographers who make “remembrance portraits” of babies, often of the child in their parent’s arms, to assist in the grieving process.
Oliver Wasow, a photographer, recalled the agonizing images a friend shared last summer of her son’s death to cancer at age 8 on Instagram and Facebook, documenting her child’s devastating decline, and then her own grief.
It was shattering to see — “You couldn’t ‘like” the photos,” Mr. Wasow said — but he recognized the value it had for his friend. Some people, he noted, say the difference between analog photography and digital photography is that digital photography is a kind of activity, versus analog photographs, which are documents.
“When you throw in social media, it becomes a record of a process rather than a record of a person. Yet the purpose remains the same whether it’s the 19th century or the 21st,” Mr. Wasow said. “It’s about documenting the transition from a physical body to a memory.”
There are gentler ways to memorialize the process of dying than a portrait of a face with the life drained from it. Lashanna Williams, 40, a massage therapist and death doula in Seattle, has been making portraits of her dying clients, with their permission, to share with family members if they ask for them.
She captures the area between a forefinger and thumb, or the calluses of someone’s hands. Wrinkles, she likes to say, are containers for memories and lived experience. She may take a photo of the crepey skin on an arm, or a scar, and sometimes she layers those images with photo collages made from leaves or flowers. The images are both abstract and intimate.
The aesthetic and language of modern post-mortem photography is not all fabric shrouds and flower petals, however. Monica Torres, 42, is a desairologist (the term for hair and makeup stylists who work on the dead) and embalmer in Phoenix with a sassy Twitter handle, @Coldhandshosts. Her specialty is trauma, and she relies on conventional methods to make decedents look like themselves again.
“I cannot create a positive, lasting memory for families without the chemicals and tools that I use,” Ms. Torres said. The families of her clients often ask her to take photos, or gather at a coffin for a selfie, she added.
An educator, she also shares her work in vivid photos on her website. “Now that the death-positive movement is in full effect,” she said, “families are beginning to show interest, and documenting their journey through grief is a powerful tool to use toward acceptance. We want to empower families with education about what it is we actually do and how our dark art is valuable.”
Bam Truesdale, 37, a hair and makeup stylist in Charlotte, N.C., has been preparing decedents for funeral parlors for 10 years. When his mother, Cynthia Cummings, died at 61 in 2016, he worked on her, too. As is his habit with all the people he prepares, he put earphones in his mother’s ears, and played her gospel music, though he worked in silence.
After Mr. Truesdale had made his mother up and done her hair, pinning a white feather and rhinestone fascinator to her curls, he smoothed her dress, adjusted her stockings and picked her up, placing her gently in her coffin.
He captured the entire process with his Android phone, though when he paused to kiss her face all over, as he used to do when she was alive, the colleague he’d brought from work to help him if he faltered took the phone from him and snapped those photos herself. Afterward, he uploaded the images to a Google drive and did not look at them again until the last week of January.
“I started feeling emotional that day,” he said, “and something in my head told me, I think it was her, that I had never shared her like she asked me to.” When Ms. Cummings was dying, she made Mr. Truesdale promise that he would make sure no one would forget her. Mr. Truesdale said, “I was going back and forth, ‘Maybe I should? Maybe I shouldn’t? People are going to think I’m weird.'”
It was evening when Mr. Truesdale posted his dead mother’s photos on Facebook. He awoke the next morning to find his phone lit up with thousands of comments and notifications. Many people asked if he could make the post public, so he did. By the end of the day, 25,000 people had “liked” the post, and it had been shared more than 15,000 times.
Among the more than 4,000 comments, the most common were that Ms. Cummings looked beautiful, and that Mr. Truesdale had done a wonderful job caring for her. Strangers wrote that they wished they could have had a similar experience with their own family members.
His three siblings thanked him, too. “They didn’t know they wanted to see the pictures,” he said. “But they did.”
Roger Kellison had Parkinson’s disease that was quickly progressing. He was a private man who eventually moved into his daughter’s house when he was unable to take care of himself.
“He had not come to our house to live,” Daniel Wallace, his son-in-law, told me. “He had come to our house to die. The last thing he wanted to do was die at a hospital.”
Roger Kellison was part of a striking trend: For the first time since the early part of the 20th century, more Americans are dying at home than in the hospital or a nursing home. This finding, included in a recent study by me and co-author Sarah Cross, is encouraging because the vast majority of Americans say they prefer to die at home. So this reflects that many more people are being able to achieve that goal.
But as more people die at home, it also means that much more responsibility falls on the shoulders of patients and their caregivers. Caregiver burden is a growing problem in America. As a doctor tending patients with heart failure, I am keenly aware of how hard managing care can be for both patients and family members.
Taking care of an ailing loved one can be exhausting physically and emotionally, and frequently caregivers lose sight of themselves. My study co-author used to work as a social worker and has seen many families struggle with managing a loved one at home. “Caregivers need to prioritize their own care,” she told me. “It isn’t selfish to take breaks, make time with friends, ask for help, look into respite options.”
After Kellison moved in with his daughter, he stayed mostly in the upstairs guest room, and for the last five months rarely, if ever, came downstairs. That physical separation was important for everyone.
“It was helpful that we delineated the house and our lives. We still went out and we still had people over,” Daniel Wallace said. “Sometimes he was part of that and sometimes he wasn’t.”
Making shared living space work is just one issue. If dying at home is important to someone, that person and their caregivers should think about — and prepare for in advance, if possible — other factors:
Perhaps most importantly, the person nearing the end needs to make clear that they want to die at home. Family, friends and medical teams need to know that. Physicians and nurses will frequently ask patients how they would like their end to be, particularly what types of intensive treatments they might or might not want. They rarely ask people where they would like to die, however.
Once at home, there are certain physical considerations worth noting: Many people have strong feelings about where in the house they would like to spend their last days — in a dark, quiet room, or looking out a window, or away from too much hubbub. Nearness to a bathroom is key. Sometimes, light remodeling, such as installing handrails in bathrooms or ramps, is helpful.
A person at the end of life will probably have feelings about who they want to spend time with — or who they don’t want — so it is important to discuss in advance who will provide caregiving, along with who might provide occasional backup for regular caregivers.
There are often community resources available as well, such as end-of-life doulas trained to care for the physical, emotional and spiritual needs of a dying person. Adaire Petrichor is one such doula. She said she “helps with rituals, ceremonies, legacy work and advice on nonmedical comfort care.”
Perhaps the most critical resource available for those wanting to die at home is hospice care. Hospice is covered by Medicare (and most other insurance) for patients with an expected life expectancy of less than six months. It is designed to help caregivers take care of a dying loved one at home with 24-hour call-in numbers to answer urgent questions, visits from hospice nurses, social workers and other staff. But home hospice does not provide full hands-on service, and caregivers still carry the bulk of the responsibility. While in many cases the care of the patient can be tougher than loved ones expect, most people find hospice guidance and support invaluable.
Wallace said hospice was key for taking care of his wife’s father after he moved in with them to die.
“Hospice was a way to bring a quality of life that he didn’t have before, because he couldn’t take care of himself and we couldn’t take care of him without hospice,” Wallace said. “If you need a wheelchair, they have that. If you need Haldol [an antipsychotic drug to treat end-stage delirium and agitation], morphine, they have it, and you can have it the next day.”
While the vast majority of hospice services are delivered at home, hospice care can also be provided in nursing facilities for dying patients who require more intensive medical care or don’t have other social supports.
Hospice is the primary reason more Americans are able to die at home today. Yet, only half of Americans who die receive hospice help. One reason may be that some people don’t ask for it because they think it is sending a depressing message to their ailing loved one or admitting what they may not want to acknowledge — that the person is in their last days.
“The obvious misconception is that it’s a death sentence,” Wallace said. But “it really is a quality-of-life sentence.”
Outside remote regions, most areas have multiple hospice agencies from which to choose.
Agencies can differ in how often nurses visit, what they might offer in crises and what equipment they provide, including hospital bed, oxygen tanks, wheelchairs. It is worth having a discussion about the support they’ll provide and other options before committing to a particular hospice provider.
With advances in public health, medicine and longevity, people now live longer with disabilities. Death is not just the terminal event in our mortal lives, but the final word of a story that can often take years to unfold.
Intermixed with periods of relative stability can be moments of terror as someone hits their final days. Physicians and other health-care providers need to prepare patients and families for these health shocks, such as worsening breathing for a patient with heart or lung disease or a pain crisis for someone with cancer.
Calling 911 when an end-of-life crisis hits initiates a cascade that can often lead to the hospital. This might be necessary if a patient has symptoms that caregivers at home feel unable to manage. For that reason, Cross said, “I recommend not making promises to a loved one such as ‘I promise I’ll always take care of you at home.’ When it becomes too much to manage at home, I’ve seen many caregivers racked with guilt for having ‘broken a promise.’ ”
Some endings can take a much more erratic course, common for those with heart or lung disease. This might be one reason our study showed that patients with cancer are more likely to be able to die at home than those with heart or lung disease.
One morning, a year after his father-in-law had moved in, Wallace went upstairs to check on him and unexpectedly found he had died.
“He did not present himself as dying when it happened,” he said. “We weren’t on death watch or anything like that.”
Some caregivers I have talked to feel uncomfortable with the idea of their loved one dying at home. Even though death has occurred at home for eons, the 20th century interrupted that historical legacy, and for many, it is a novel concept.
But for many, fulfilling a loved one’s wish to die at home provides a fitting and natural end to the story of that person’s life.
When I asked Wallace whether he viewed his house differently after his father-in-law died in it, he said: “It deepens my experience of being alive, to be in a house where someone has died. It’s a remarkable thing.”
It may seem paradoxical, but dying can be a deeply creative process.
Public figures, authors, artists and journalists have long written about their experience of dying. But why do they do it and what do we gain?
Many stories of dying are written to bring an issue or disease to public attention.
For instance, English editor and journalist Ruth Picardie’s description of terminal breast cancer, so poignantly described in Before I say Goodbye, drew attention to the impact of medical negligence, and particularly misdiagnosis, on patients and their families.
American tennis player and social activist Arthur Ashe wrote about his heart disease and subsequent diagnosis and death from AIDS in Days of Grace: A Memoir.
His autobiographical account brought public and political attention to the risks of blood transfusion (he acquired HIV from an infected blood transfusion following heart bypass surgery).
Other accounts of terminal illness lay bare how people navigate uncertainty and healthcare systems, as surgeon Paul Kalanithi did so beautifully in When Breath Becomes Air, his account of dying from lung cancer.
American writer and illustrator Maurice Sendak drew people he loved as they were dying; founder of psychoanalysis Sigmund Freud, while in great pain, refused pain medication so he could be lucid enough to think clearly about his dying; and author Christopher Hitchens wrote about dying from oesophageal cancer despite increasing symptoms:
I want to stare death in the eye.
Faced with terminal cancer, renowned neurologist Oliver Sacks wrote, if possible, more prolifically than before.
And Australian author Clive James found dying a mine of new material:
Few people read
Poetry any more but I still wish
To write its seedlings down, if only for the lull
Of gathering: no less a harvest season
For being the last time.
Research shows what dying artists have told us for centuries – creative self-expression is core to their sense of self. So, creativity has therapeutic and existential benefits for the dying and their grieving families.
Creativity provides a buffer against anxiety and negative emotions about death.
Creativity may give voice to our experiences and provide some resilience as we face disintegration. It may also provide agency (an ability to act independently and make our own choices), and a sense of normality.
French doctor Benoit Burucoa wrote art in palliative care allows people to feel physical and emotional relief from dying, and:
[…] to be looked at again and again like someone alive (without which one feels dead before having disappeared).
A way of communicating to loved ones and the public
When someone who is dying creates a work of art or writes a story, this can open up otherwise difficult conversations with people close to them.
But where these works become public, this conversation is also with those they do not know, whose only contact is through that person’s writing, poetry or art.
This public discourse is a means of living while dying, making connections with others, and ultimately, increasing the public’s “death literacy”.
Some people read narratives of dying to gain insight into this mysterious experience, and empathy for those amidst it. Some read it to rehearse their own journeys to come.
But these purpose-oriented explanations miss what is perhaps the most important and unique feature of literature – its delicate, multifaceted capacity to help us become what philosopher Martha Nussbaumdescribed as:
Not everyone, however, has the opportunity for creative self-expression at the end of life. In part, this is because increasingly we die in hospices, hospitals or nursing homes. These are often far removed from the resources, people and spaces that may inspire creative expression.
And in part it is because many people cannot communicate after a stroke or dementia diagnosis, or are delirious, so are incapable of “last words” when they die.
Perhaps most obviously, it is also because most of us are not artists, musicians, writers, poets or philosophers. We will not come up with elegant prose in our final days and weeks, and lack the skill to paint inspiring or intensely beautiful pictures.
But this does not mean we cannot tell a story, using whatever genre we wish, that captures or at least provides a glimpse of our experience of dying – our fears, goals, hopes and preferences.
[…] there will still be epic poems, because every human life contains one. It comes out of nowhere and goes somewhere on its way to everywhere – which is nowhere all over again, but leaves a trail of memories. There won’t be many future poets who don’t dip their spoons into all that, even if nobody buys the book.
Mary was dying. As her children gathered at her bedside, she began to cradle a nonexistent baby. She cooed and cuddled it in her arms, showing a happiness that was at odds with her physical suffering. Her children turned to the doctor, concerned that their mother was hallucinating. But he encouraged them to let her act out a scene that only made sense to her.
Later, they learned that Mary had delivered a stillborn baby years before she had her other children. What had seemed like a bizarre hallucination actually seemed to help address a trauma she had held inside for years. She died peacefully soon after.
Christopher Kerr, the hospice doctor who witnessed Mary’s actions, credits her with helping change his view on death.
Kerr has interviewed thousands of dying patients about their visions and dreams, which often include dead family members or pets or which recreate past scenes from which patients extract meaning or healing. Patients describe seeing dead family members in the room, feeling a comforting presence nearby, or tying up unfinished emotional business relating to past slights and traumas.
The book is a challenge to doctors, whom Kerr encourages to honor and listen to the dying.
“We need to bring doctors back to the bedside, to their roots as comforters of the dying rather than as mere technicians trying to extend life at all costs,” he writes.
But it beckons to readers, too, encouraging them to open up to how dying patients make meaning of their own lives. By listening to patients, says Kerr, “dying becomes less about death than about life’s resilience.”