Dance Me to the End of Time

— South African film on death is a powerful celebration of life

Activist and theatre director Nancy Diuguid, left, with partner and film-maker Melanie Chait.

In her 2021 documentary Dance Me to the End of Time, South African film-maker and educator Melanie Chait has produced a truly great film. Not only for the breadth of themes it broaches – from cancer to green activism, from lesbian love to arts therapy – but also for the intensity with which she deals with these themes.

One of the hallmarks of a great film is its ability to transport audiences; to hold their undivided attention and evoke deep emotions in them. The documentary does this, as it pieces together four years of home movie footage filmed by Chait.

This very personal, award-winning film chronicles the final years and death of Chait’s life partner, London theatre director Nancy Diuguid. Diuguid died from breast cancer. The film is, of course, more than just about the death of Diuguid. It is also about the triumph of lesbian love in the face of death as well as the ecological and feminist politics of Chait and Diuguid.

In the process it elevates itself above death and disease to become a veritable celebration of life and love. Powerfully original, it is also likely to change the way people think about the food they eat and how it is produced. This is particularly important given the ever increasing prevalence of cancers.

The art of death

Dance Me to the End of Time has been enjoying a successful festival run after premiering at the Encounters documentary festival in South Africa and has won several international awards.

The documentary fits into a genre of film-making which focuses on disease, dying and death. This genre was popularised in the early 1990s by films which documented the death of people living with AIDS. These are films such as Silverlake Life by US director Tom Joslin and Modesty and Shame by French writer and photographer Hervé Guibert. I argue in an article on this genre that there is something more to such films than just the representation of diseased bodies and slow deaths.

Dance Me to the End of Time shows how two women face the presence and reality of death. Diuguid thinks through how, although she was losing control of her body, she still wanted to be “present in the process of dying”. Chait contends with the idea of losing her loved one. She expresses her helplessness in offering the comfort that her dying lover required:

It felt like I was playing God: deciding what to do, when. Nancy was so unlike the Nancy I had known. I only wished I could do better with the process of knowing how to comfort and help ease her anguish.

Despite the difficult conversations they have about death and the meaning of loneliness, it’s fascinating how the film eloquently demonstrates that even in the face of death, the couple was able to experience happiness. In many instances, Diuguid is filmed swimming in the ocean or dancing with their adopted son, Desmond. This film is a beautiful ode to lesbian love, an elegy of two women loving one another through sickness and health.

Ecological and feminist politics

Chait also weaves into this personal story the important feminist and ecological work that the couple did to expose the health dangers of pesticides. When diagnosed with cancer, Diuguid decided to adopt a holistic, integrated medical approach combining traditional medicine and natural methods.

The story of US scientist and ecologist Rachel Carson is woven into that of Chait and Diuguid. From as far back as the early 1960s, Carson had exposed the health hazards of pesticides, especially DDT, used to spray farm crops. Diuguid grew up on a farm in Kentucky and experienced how small wildlife would be killed days after the spraying of their farm.

A black and white photo of a woman in a collared shirt, smiling. — Rachel Carson.

Diuguid and Carson both died of cancer. By drawing parallels between their lives, the film highlights the politics of what and who is responsible for causing cancer. In its focus on the gruesomeness of the effects on cancer, Dance Me to the End of Time is itself political in dealing with ecological questions and the impact of pesticides.

The film also shows how, when Diuguid was diagnosed, she was able to use the creative arts and her lesbian identity as tools to campaign for justice and to heal others. Through an initiative called VOICES, she used expressive arts to help women and children deal with trauma in the townships of Johannesburg. In addition to the historical trauma of apartheid, townships in South Africa have had to do contend with high levels of intimate forms of violence.

Vulnerability and dignity

A film poster featuring two women, one lying in bed.

Even in chronicling Diuguid’s dying, the film does not rob her of her dignity and humanity.

In fact, the film celebrates her life and her important work in expressive arts therapy.

In its personal and deeply emotional texture, Dance Me to The End of Time offers a sincere depiction of how to face death and more importantly how to live life to its fullest.

Complete Article ↪HERE↩!

March 7, 2023March 7, 2023

What being a hospice volunteer taught me about death and life

— When Anna Tims volunteered at a hospice, she learned, by helping patients in their final days, not to fear illness and death. Here, she writes movingly on her experience – and explains why dying matters

‘I live in wonder at the power of a held hand.’

By Anna Tims

My introduction to death came in a traffic jam. I turned on the radio and heard a woman describe her father’s final days in a hospice. His end, she said, was a strangely warming memory because of the hospice volunteers who entered the pain of strangers and held their hands as they faced the unknown. In her grief, she explained, she’d encountered humanity at its best. I forgot my frustration at the static traffic as I listened. The prospect of a missed train and crowding deadlines was unimportant, seen through the lens of loss. It was an instant realisation that I wanted to be where life matters most, which is when it is ending. I wanted to be one of those hospice volunteers.

My experience of death had been at a distance. I’d lost grandparents and cats. As a clergyman’s wife, I’d attended funerals of parishioners, tidied tombstones in the churchyard and contemplated my mortality from the pews during Lent. I had never seen a body. I’m frightened of the raw grief of others and I’m squeamish about blood. My volunteering roles have always been with children. I’m used to beginnings, not endings.

I ignored my deadlines that morning. Instead, I Googled hospices. A hospice in the next county was seeking a volunteer to write the life stories of patients in its day centre. This felt reassuringly familiar ground. I applied. Within a month, I was listening to strangers recounting their loves and their losses. Their trust took my breath away. So did the intimacy of hearing memories that had never been shared and regrets that had never been expressed.

Each interview would start the same way: with an apology. The patients apologised for having led boring lives that were not worth recording. Then, as they rewound the years, I realised they were discovering for the first time that they were a pivotal part of a story; that they had made an imprint on the world. A life recounted can make sense in a way that life lived does not. I heard the anguish of a Second World War pilot haunted by the bombs he’d dropped on Germany. I recorded the childhood of a German woman who had grown up beneath those bombs. An ex-convict confided his years of alcohol addiction in the hope that his story of redemption might be shared to help others. I accompanied octogenarians through the hopes of their youth to the resignation of their ending, and, when each story was printed and handed over, those strangers felt almost as familiar to me as family.

Writer Anna Tims in a green tunic and jeans at the Cottage Hospice in East Sussex. — ‘I saw people differently’: writer Anna Tims volunteering at the Cottage Hospice in East Sussex.

People were admitted to the day centre if they had less than two years to live. It was a cheerful space full of light, cake and chatter. There was time for friendships to form and flourish. Death felt remote. Occasionally I’d be summoned to the ward of rooms where patients were in their final weeks. It felt a hallowed place. Mysteries beyond my comprehension were unfolding behind the closed doors. Ashamed of my own health, I hovered at bedsides and marvelled as people wrested their remaining shreds of energy to share their lives. One woman could barely speak and her memories were scrambled by a brain tumour. I suggested she rest. “Let’s crack on!” she whispered. Her memoir was for her young children. Through her story, she hoped to live on. We only met the once. She died before she could get past her childhood, but that childhood lives with me as vividly as my own.

I began to see life differently. Chores and routines I’d thought tedious have a sanctity on a deathbed. Everything I took for granted – the school run, the weekly shop, an unexpected soaking in a rainstorm – seemed a gift to those no longer able to experience it. The details the patients recalled of their past were so small, but so precious. I saw people differently, too. Instead of anonymous faces of strangers in the street, I saw protagonists of untold stories; the quiet heroism of ordinary life.

The day centre closed temporarily when Covid struck and most volunteers were stood down. I agonised over all the tales that would never be told. In spring 2021, an SOS came from the Cottage Hospice in East Sussex. They needed volunteers to work shifts with nursing staff. This was not familiar ground; it combined my fears of wounds and body fluids and unleashed emotion. I was uncertain that I could cope with the death of people I had tended. Then I realised that I will one day have to cope with the death of people I have loved. Perhaps to immerse yourself fully in life, you have to confront mortality. So, in fear, I signed up.

The Cottage Hospice is offered free to families and paid for by fundraising. It was established by Hospice in the Weald in 2019 to be a home-from-home rather than a hospital, for those who don’t want to be parted by visiting hours and ward rules. Relatives move in with the patients and care for them with the support, if they want it, of nursing staff and visiting doctors. There are en suite bedrooms with sofas and private verandas, a family kitchen stocked with food, guest rooms for visitors or carers who need a break and stylish lounge areas. Patients can personalise their rooms, which overlook hills and meadows, and host guests in a free café. Some of them bring their pets. The idea is to remove some of the pressure on families so they can make the most of the time they have left.

“Celebrating life, dignifying death” is the philosophy. It feels more like a boutique hotel, and what struck me the first time I entered, was the pervading peace. Not silence, although there is a great quiet, but a tranquillity. It baffled me. Anguish beyond my imagining is endured in those rooms. Some patients were leading active lives until a recent diagnosis and arrive in shock. Some have suffered long illness and are resigned. Family caregivers know that when they leave, they will go home alone.

Over the months, I think I’ve started to understand. The cottage is a pause, a bubble, and in that pause families, in coming to terms with death, can make sense of their life together before the agonising step into the future.

In the outside world, death is hidden, unmentionable. In the hospice, it’s what unites all those there, and, in being acknowledged, it is dignified. It can be a relief for relatives to talk openly about their fears and grief. It is an honour for staff and volunteers to be there to listen. “I feel this place has wrapped its arms round me,” a young wife told me after terrifying weeks of waiting in hospitals.

Instead of collecting memories, I found myself bathing patients, feeding them, talking to families and, occasionally, helping the staff performing last offices for those who had died. To my surprise, I found death in the abstract more frightening than death personified in individuals who can squeeze your hand and share a joke and who, while losing their life, radiate their humanity.

It takes a special grace to accept dependence. In the outside world, we feel humbled by the status and success of others. In a hospice, I’m humbled by figures in the beds, trustingly accepting the ministrations of a stranger and whispering, even when barely conscious, a thank you. Dignity is not what I thought it was. I was hot with embarrassment when I washed my first patient, until I saw she was smiling at me. In her acceptance, she had dignity. In my fumbling confusion, I did not.

Drugs manage the physical pain and some of the mental torment. They can’t remove the dread of loss and the fear of the unknown, but most of those I met have arrived at the same acceptance. Dignity of spirit overcomes the indignity of helplessness. Small gestures – a wiped face, a plumped pillow – feel like tributes. They are all I can offer as they face what I can’t fathom.

My fears were dissolved by the calm of the nursing assistants. Many are young, but have learned more of life in that building than I have done in twice their years. Formal staging posts to friendship are bypassed and staff, volunteers and families are plunged straight into a relational deep end. Some patients and carers want the release of a laugh. Some want to confess fears, share memories or talk of anything but sickness. Some require silence. You have to try to intuit what they need without blundering. I live in terror of an ill-judged word and in wonder at the power of a held hand.

It’s in the kitchen that the hospice’s vision is enacted most powerfully. Caregivers from different families mingle at the table, preparing meals or making tea. We may never have met before, but sometimes the chatter is so lively, the vibe so domestic, that I feel we’re in a house share. A patient’s husband reminded me how to use the microwave each time I forgot and we joked at my culinary incompetence. A pair of young siblings concocted a banquet for their dying father. They’d bought his favourite foods and a bottle of champagne. They decorated the trays with flowers and had hired a band he’d admired. He’d loved to party, they said.

At quieter times, that intimate domestic setting is where relatives let their guard down, confide their struggles and invite a hug. There’s a connectedness in shared crisis that can make you feel more human. Life seems more real sometimes inside the hospice than it does back in the world of deadlines and small talk.

You’re supposed to leave their pain at the door when you clock off from a shift, but some people’s pain comes home with you. The hard part is the absences when you clock on a week later. Families you grew close to are suddenly not there any more and you never got to say goodbye.

Six months after I’d started at the Cottage Hospice, my father was taken ill. He died 10 days later. His sickness was sudden, but the hospice had prepared me. I dread loss more keenly, perhaps, than I ever did, having witnessed families watch their lives fall apart, but death itself has seemed less frightening since I confronted it there.

It was my encounters with patients and relatives that enabled me to accept my father’s diagnosis without terror and to face his body on the bed. My hospice shifts haven’t made my grief any less, but they’ve made it seem less isolating. Loss is the one certainty we all face, but, in the outside world, it tends to be borne out of sight and earshot. Accompanying relatives on part of that agonising journey has helped me come to terms with my own emotions and to root my personal bereavement in the wider human story.

Hospice volunteering has changed my understanding of life and death. There are no happy endings in the conventional sense. The patients won’t get better. One has to accept one can’t save them. There is no counsel or comfort one can offer strangers facing the inevitable. That’s been hard to learn. I like to fix things; I’m prone to impose advice. I’m discovering that it’s essential to recognise that we can’t control life in the way we assume. The existence we take for granted is as frail as dreams and it can dissolve in a heartbeat.

Sharing with families the most private moments at a deathbed is an inexpressible privilege. Social barriers break down. In that limbo, away from daily schedules, relationships are prioritised.

In my head these days is a procession of faces of those I briefly knew. So many of them had craved more time. Now, when a new day breaks, I try to see it from their perspective and cherish the humdrum as a gift. And when I finish a hospice shift, I want to take back into the outside world that sense of life stripped back to its essentials, where what ultimately matters is love.

Complete Article ↪HERE↩!

February 21, 2023February 20, 2023

What Happens When You Die?

— Hospice Workers Share Conversations With Patients as They Near the End of Their Life

By Lyssa Goldberg

Talking about mortality can definitely be a frightening subject. But for some people, like those who work in hospice, discussing what happens when you die may feel like a more natural conversation to have.

So, what does it feel like to be days from death? And what happens to you when you die? While some of these questions may never be answered, we spoke to several hospice care professionals across the U.S. to find out what they’ve learned from their patients in their final days as they prepared to make a transition from life to death.

“Very few people are afraid of death. They’re afraid of dying, the process leading to death,” says Travis Overbeck, National Director of Patient Experience for Seasons Hospice.

Of course, no one truly knows what comes next, but some patients have a very clear idea of what they believe should happen once they die, says Overbeck. Hospice workers like himself get to explore their patients’ belief systems and ask them what they’d like their death to look like.

For instance, in the Buddhist tradition, there’s an expectation of silence at the time of death, according to Overbeck, and there should not be any wailing or grieving at the individual’s bedside so they can make their way peacefully into the next life.

“I’ve seen so many patients at the time of death. Most often, there’s this sense of peace and calm, and it’s really beautiful,” Overbeck says. “That’s why I do what I do. It’s all about bringing that peace and comfort to our patients at end of life.”

Here are some of the most common themes that have emerged from end-of-life conversations with hospice workers.

“Would you mind praying for me?”

Overbeck, a chaplain who sees patients of all faiths and backgrounds but practices Christianity himself, remembers his final conversations with a Jewish patient in her last days of life. She said, “I know you’re Christian, and I know I’m Jewish, but would you mind praying for me?”

“What would you like me to pray for?” Overbeck replied.

“I pray that when I die, it will be peaceful, and I will be comforted,” was the patient’s request.

After some conversation, they prayed together and the two hit it off. When Overbeck returned to the hospital the next day, the patient’s friend found him in the hallway. She told Overbeck that the patient had become unresponsive—but before she stopped speaking, the patient asked her friend to have Overbeck pray for her again if he returned.

Overbeck entered the patient’s room and, knowing that hearing is typically the last sense to go, he reintroduced himself and said, “I’m going to go ahead and pray for you.” He prayed again for peace and a comfortable transition. And at the end of his prayers, suddenly the patient began to talk.

“I’m going on a journey to a place I’ve never been before,” she started, “and everybody is sparkling, and everybody is smiling at me.” The patient died about 45 minutes later.

“I don’t care what belief system you are or aren’t. At the end of the day, that’s real. That was her experience,” Overbeck says.

Bringing life closure

Much of Overbeck’s work is dedicated to tying up loose ends and bringing his patients’ life to closure, whether that’s reuniting family members that have become estranged or ensuring the patient’s legacy is preserved. “There’s a process in dying,” Overbeck says. “It’s the opportunities to say, ‘I love you,’ opportunities to say, ‘I forgive you,’ opportunities to ask for forgiveness, opportunities to say, ‘Goodbye.’”

Overbeck recalls another conversation with a patient who was the CEO of a very large, well-known company. “Travis, I had it all,” the CEO told Overbeck. “I had the vacation homes. I was able to send my kids to the finest schools. We traveled the world. But at some point, I lost my focus. I began to value my job and my money more than anything else.”

Along the way, it cost him not only his marriage but his relationship with his kids. In fact, the patient had a grandchild he’d never even meet. Overbeck asked the patient for permission to reach out to his family. A few phone calls later, they were flying into town to visit the hospital.

Overbeck helped facilitate conversations between the patient and his family members, and while he acknowledges it wasn’t easy, he was ultimately able to bring them a feeling of closure. Most importantly, the patient was able to meet his grandchild for the first time. The patient died later that day.

“The biggest realization that I’ve had is that we all have a finite amount of time—it’s about how you’re going to live with that time,” Overbeck says.

Cultivating gratitude

Carolyn Gartner, licensed clinical social worker with Visiting Nurse Service of New York Hospice and Palliative Care, began practicing meditation and studying Buddhism around the same time she started pursuing social work.

Working in hospice care, she’s found her patients hold a perspective of gratitude and acceptance that parallels what she’s been taught through her meditation practice. “I feel my older patients really understand the idea of letting go, and not letting small things bother you,” Gartner says. “We get so caught up in the day-to-day, and I see my older patients are a good role model for how those things pass.”

Gartner works with a diverse array of patients throughout Brooklyn, from celebrities to patients in public housing. Recently, she and a chaplain from VNSNY Hospice went to visit a Jamaican patient who loves Bob Marley music.

The patient’s daughter told them that her mother had experienced a severe explosion of pain the day before, so Gartner prepared to handle the situation sensitively, thinking perhaps the patient wouldn’t want to listen to music that day.

When they walked in the door, however, the patient was wearing a big smile on her face and said: “Okay, ladies, when are you starting the Bob Marley?’”

“I do think that this work, almost every day, reinforces to me: We are energy. We are light. There is a spirit,” Gartner says.

At end-of-life, people like to reflect on their life story, Gartner says. Patients will take out old photos and share stories of joy and pain all in one session. Having studied screenwriting as an undergrad at New York University, Gartner uses these same storytelling techniques with her patients to learn and listen to their stories.

“My observation is that people will often die the way they live, so it’s really interesting to see how people process what they’ve gone through,” she says.

While the patients may seem ready to accept what comes next, Gartner says it’s the families who often need help coming to terms with it. VNSNY Hospice assists with the pre-bereavement process for family caregivers so they can see beyond the grief and enjoy the time they have left with the patient.

“Patients almost always know what’s going on in their body. It’s the family who doesn’t,” she says.

Seeing lost loved ones

Over the years, Kalah Walker, patient care administrator for VITAS Healthcare, has seen numerous hospice cases where the patients will call out to their loved ones who’ve passed, as if they’re seeing someone that everyone else cannot.

Often, they look out into the distance, and the hospice worker knows it’s the name of a family member who’s no longer with us. Generally, this happens within the last days of their life, Walker notes.

“You know what they’re seeing when they’re looking off into the distance…,” she said. “Once they do that, they’re able to let go.”

Sometimes, the patients will ask their hospice worker if they can see the family member too. Walker says it’s important to be there in the moment with them, agree, and allow the moment to happen as the patient is experiencing it. “There’s a nurse who gets to be there to bring life into this world, and we get to stand there and hold a patient’s hands or their family’s hands as a life leaves this world,” she says.

Walker says the real work with end-of-life care comes after the patient passes, however. “Hospice isn’t just about death and dying. It’s about learning about what’s really important in life and keeping those memories alive,” Walker said.

VITAS’ staff supports families who’ve experienced loss with programs like gifting them memory bears as reminders of their loved ones or butterfly release ceremonies. At the butterfly release ceremony, families will open a package and release butterflies into the sky, giving them a chance to reflect and experience a feeling of release themselves. “I’ve seen the butterflies sit there in the moment. You notice they kind of hover around, and it’s almost as if that butterfly is the loved one,” Walker says.

Sources

Travis Overbeck, National Director of Patient Experience for Seasons Hospice
Carolyn Gartner, licensed clinical social worker with Visiting Nurse Service of New York Hospice and Palliative Care
Kalah Walker, patient care administrator for VITAS Healthcare

Complete Article ↪HERE↩!

January 31, 2023January 31, 2023

More and More, I Talk to the Dead

By Margaret Renkl

After my mother died so suddenly — laughing at a rerun of “JAG” at 10 p.m., dying of a hemorrhagic stroke by dawn — I dreamed about her night after night. In every dream she was willfully, outrageously alive, unaware of the grief her death had caused. In every dream relief poured through me like a flash flood. Oh, thank God!

Then I would wake into keening grief all over again.

Years earlier, when my father learned he had advanced esophageal cancer, his doctor told him he had perhaps six months to live. He lived far longer than that, though I never thought of it as “living” once I learned how little time he really had. For six months my father was dying, and then he kept dying for two years more. I was still working and raising a family, but running beneath the thin soil of my own life was a river of death. My father’s dying governed my days.

After he died, I wept and kept weeping, but I rarely dreamed about my father the way I would dream about my mother nearly a decade later. Even in the midst of calamitous grief, I understood the difference: My father’s long illness had given me time to work death into the daily patterns of my life. My mother’s sudden death had obliterated any illusion that daily patterns are trustworthy.

Years have passed now, and it’s the ordinariness of grief itself that governs my days. The very air around me thrums with absence. I grieve the beloved high-school teacher I lost the summer after graduation and the beloved college professor who was my friend for more than two decades. I grieve the father I lost nearly 20 years ago and the father-in-law I lost during the pandemic. I grieve the great-grandmother who died my junior year of college and the grandmother who lived until I was deep into my 40s.

Some of those I grieve are people I didn’t even know. How can John Prine be gone? I hear his haunting last song, “I Remember Everything,” and I still can’t quite believe that John Prine is gone. Can it properly be called grieving if the person who died is someone I never met? Probably not. But when I remember that John Prine will never write another song, it feels exactly like grief.

In any life, loss piles on loss in all its manifestations, and I find myself thinking often of the last lines of “Elegy for Jane,” Theodore Roethke’s poem about a student killed when she was thrown from a horse: “Over this damp grave I speak the words of my love: / I, with no rights in this matter, / Neither father nor lover.”

Why, when we grieve, can it feel so urgent to make others understand the depth of our loss, even when we have no rights in the matter? I think it must be because people so often fail to honor grief at all. We talk of “processing” loss, of reckoning with it and moving on, as though bright life could not possibly include an unvanquishable darkness. Our culture persists in treating mourning as an unpleasant process we are obliged to endure while waiting for real life to restore itself.

But God help anyone who appears to move on too quickly, or too slowly, for the grief police will be coming for them. They may be accused of giving their late spouse’s clothes away too soon, or of mourning excessively a relationship that seems too far down the grief ladder to justify such a response. People have opinions about how others should manage loss.

Just before my mother died, I heard her say to a stranger, “My husband died nine years ago, and every night I tell God I’m ready to see him again.” Four days later, she got her wish.

I’m in no hurry to join my beloved dead, but like my mother before me, I am spending more and more of my days in their company. As my father was dying, and taking so long to die, I feared that the memories of his brutal last years would overwhelm four decades of happy times. I worried that the father who followed me into my own old age would be the fretful, pain-wracked old man and not the loving optimist who had always been my surest source of strength in an indifferent world.

It didn’t turn out that way. Next month he will have been gone for 20 years, but he is as real to me today as he was on any day of the 41 years we shared on this side of the veil.

I read a newspaper article reporting that NASA will be dismantling the Saturn rocket that rises above the Alabama welcome center on I-65 South, and I remember the model Saturn rocket, taller than my 10-year-old self, that Dad and I built together from chicken wire and papier-mâché. I hear a Cole Porter song on the radio, and I remember my parents dancing in the living room. I see a blue jay perched in the pine tree just outside our family room, and I recall how often I was told that “blue jay” is the first bird I learned to call by name. There were so many blue jays in so many pine trees back in those days when I was still a cherished late-born child, and my parents were still explaining the world to me.

It’s the same with all my lost beloveds. Reminders take every possible form — the feel of pine needles underfoot, the scent of a passing woman’s perfume, the tail end of a song on a coffee shop radio, a letter tumbling out of a long-unopened book, the taste of boiled peanuts, salty and warm. The reminders loop between past and present, between one lost loved one and another, a buzzing sweep of sensations and memories and time. I keep searching for the right metaphor to convey what I mean. Is it like a braid? A web? A shroud?

Finally the word comes to me: It’s a conversation. Every day, all day long, everyone I’ve ever loved is gathered around the same table, talking.

Ten years on, I rarely dream about my mother anymore, but in the dreams where she does appear, it’s the same as before — the ordinariness of life, the rush of relief I feel, her blithe unawareness of my suffering. I walk in the door, and there she is, there they all are, no happier to see me than they would be if I’d only walked in from another room in the same house. In my dreams, as in my waking life, the dead are still here, still talking to me.

Complete Article ↪HERE↩!

January 30, 2023January 29, 2023

If you could, would you want to know when you will die?

By Steven Petrow

Would you want to know when you’re going to die? I’ve thought about this question quite a bit recently.

>Several months ago, I picked up a new novel titled “The Measure” by Nikki Erlick, which opens with quite the plot twist. One morning, everybody on the planet (ages 22 and up) wakes up to a surprise at their front door: a small wooden box, personally engraved, with the words: “The measure of your life lies within.” Each box contains a string whose length determines the length of the recipient’s life.

The characters now face a gut-wrenching decision. Do they open the box and find out how long they will live? If yes, what will they do with that knowledge? If not, which means they’re choosing not to know, will they live any differently?

The question is not entirely a hypothetical one. A few months ago, out of a morbid curiosity, I visited Death Clock, a website that labels itself the “Internet’s friendly reminder that life is slipping away … second by second.”

I entered the month, day and year of my birth, my gender, mood (from pessimistic to optimistic), whether I smoked tobacco, and my height and weight. I hit the submit button, and a second later came my answer: “Your personal day of death is Wednesday, April 23, 2031.”

If true, I had nine years to live; I’d be a few months short of my 74th birthday.

About the same time, my sister, who is 60 and being treated for advanced ovarian cancer, was told by her oncologist that time may be running short. Of course, it was only a doctor’s guess and her current chemo regimen has significantly improved her tumor markers. Regardless, she’d be considered a “short stringer,” one of those who will die before their time, in “The Measure.”

I’ve wanted to be a “long-stringer,” ever since I had cancer in my 20s, but thanks to Erlick’s book and now my sister’s illness, I’ve recognized that focusing on exactly when my time is up is unknowable and probably not particularly good psychically. So I’ve decided instead to focus on how I want to spend those years, not just the number of them.

In any case, longevity doesn’t come with a guarantee of good health, and those “bonus years” may hold less value if confined to home or suffering from debilitating conditions.

As the characters in “The Measure” discover, a long string (meaning many years of life) does not equal happiness. And while the characters who get short strings initially feel as though they’ve come up, well, short. gradually, they find greater meaning and richness in their comparatively fewer days. Their newfound knowledge alters their perspective on what matters.

One of the novel’s characters, Nina, who is married to one of the short stringers, says: “It’s easy to look at our time together and think that we were so unlucky. But isn’t it better to spend ten years really loving someone, rather than forty years growing bored or weary or bitter?”

After her partner, Maura, dies — indeed early — Nina explains that their relationship “felt deep, and it felt whole, despite its length. It was an entire, wonderful tale in and of itself.”

All this brings me back to my little sister, Julie, and the deep angst I feel at what may turn out to be a premature death. I want her to live forever. (Maybe not forever, but, please, longer than me!)

To help me with these stomach-wrenching feelings, I’ve turned to friends, my therapist, a higher-dose antidepressant, meditation, ketamine and Elisabeth Kübler-Ross’s work on the five stages of death and dying. All of which work — some.

Oddly enough, “The Measure” has provided me with a greater sense of peace and acceptance than I’ve found anywhere else. Don’t get me wrong, I still hate that Julie is likely to live fewer years than her older brother. But I’ve watched and learned as Julie has lived as big a life as anyone could imagine. This proved true before her diagnosis but even more so in recent years.

Soon after her diagnosis, Julie emailed me to say that she’d already had a full life, even if it’s cut short. Since then, she has focused on what matters to her — seeing her daughters graduate from college, celebrating 35 years with her wife, going away on trips with the whole family, visiting with close friends.

In other words, Julie has fine-tuned those relationships that mean the most to her and not dwelled on those that she may miss out on in the future.

I remember thinking at our recent Christmas dinner about a quote attributed to Ralph Waldo Emerson: “It is not the length of life, but the depth of life” that matters. And then I thought about what Nina, in the novel, tells us: “When we think about the greatest love stories ever written, we aren’t judging them by their length … . [A]nd even though I’ve been given more chapters than Maura, her pages were the ones you couldn’t put down. The ones that I’ll keep rereading, over and over, for the rest of my life. Our decade together, our story, was a gift.”

Amen.

It’s not about how many chapters we’ve lived but how rich and exciting those chapters are. Or, as the late poet Mary Oliver wrote, “Tell me, what is it you plan to do with your one wild and precious life?”

For starters, I’m not going to listen to the Death Clock. I don’t want to know when I’m going to die — but I do want to live each day as though it could be my last.

Complete Article ↪HERE↩!

January 27, 2023January 26, 2023

I Helped My Mother To Live and Later Die

— After begging her mother to live longer, this author later honors her mother’s wishes for how she wanted to be treated at the end of her life

Kathleen and her mother, less than two years before Mary Elizabeth’s death

By Kathleen M. Rehl

“Please don’t die now, Mom! I can’t handle two funerals back-to-back.”

In a panic, I squeezed my mother’s hand as I sat beside her bed. The hallway’s stark white light streamed through her doorway. Announcements crackled over an intercom as an equipment cart clattered past her room. Mom’s roommate moaned in her sleep before returning to rhythmic snoring.

Then, finally, a sweet-faced nurse’s aide said I could stay beyond regular visiting hours. Staring intently before she spoke, Mom said, “Your father came to me in a dream last night and told me it was time to let go and be with him again.”

Mom Loved Her New Life

Flashback to Dad’s death from colon cancer, a few days after his 80th birthday. After he passed, Mom moved over 1,000 miles from her house on a dusty, isolated road to live near me and my husband, Tom, in Florida.

She blossomed like the red roses she cared for near her apartment.

Leaving sadness and grief behind, she chose a sunny independent living apartment in a continuing care retirement community (CCRC). There she blossomed like the red roses she cared for near her apartment.

Mom made new friends fast, joined afternoon card games, shelved books at the community library, tended a meditation garden, participated in church activities, baked yummy chocolate chip cookies to share, traveled to visit a few relatives across the country, and enjoyed an occasional happy hour glass of sangria with girlfriends.

In addition, Tom and I included Mom in many local activities. “I love my new life here,” she often said. Mom’s newfound happiness lasted almost two years.

Life Changed

A serious fall interrupted Mom’s joyful journey. After spending Thanksgiving with Tom and me, my mother fell in her apartment, shattering her femur. Mom’s next-door neighbor’s frantic phone call brought the ambulance.

At the hospital, we authorized emergency orthopedic surgery. A few days later, she transferred to her CCRC’s skilled nursing care wing, with weeks of physical therapy scheduled. Her spirit was crushed.

I was devastated, of course, but the knockdown punch to the gut hit in early December. That’s when my husband visited his doctor, feeling unusually tired, with jaundiced skin and abdominal pain. He called me at work later, saying he’d been admitted to the hospital for specialized testing.

I bolted from my desk and didn’t return to it for many weeks. Meetings and phone calls with a medical staff filled our coming days. By week’s end, we knew his diagnosis was a callous killer — late-stage inoperable and untreatable liver cancer.

His prognosis was death within a few months. My 72-year-old husband chose home hospice care rather than a war he couldn’t win.

Mom Rallied

“All right! I won’t die now,” Mom said from her nursing home bed when she understood Tom’s death sentence. And that’s just what she did.

Mom mustered her petite body’s life force, willing her health to improve.

She completed prescribed physical therapy, navigated with her fractured leg plus a walker, and moved back into her apartment with daily assistance from an aide and friends.

I boomeranged between caring for my mother and my husband. Then, Tom’s progressive downward spiral gathered speed while Mom’s condition stabilized. He died in my arms on February 12, 2022 with my brother beside us both.

A packed church celebrated my husband’s life. Mom sat near me as I stood in the funeral’s receiving line, both brokenhearted.

Years Before, We Talked About Care Preferences

“I don’t want you kids to have to pull the plug on me someday,” Mom said over a decade before.

Several years before Dad’s death, our family discussed health care preferences if we experienced a severe illness. My mother had once carried the burden of being the one who authorized disconnecting her aunt and mother from life support after each suffered debilitating strokes.

“I didn’t know what they would have wanted because we never talked about topics like that back then.”

“I didn’t know what they would have wanted, because we never talked about topics like that back then,” she said. Mom felt she “killed Aunt Frances and your grandmother.”

Dad, Mom, Tom, and I completed the Five Wishes advance care planning document years before we updated our estate plans. It’s easy to understand, covering one’s personal, spiritual, medical, and legal wishes at the end of life.

In addition, it identifies the person designated to make care decisions when you can’t do it yourself. After my father passed, Mom revised her plans, naming me the primary health care agent.

The Beginning of Mom’s Ending

After my mother told me about her dream of Dad, she didn’t speak of that vision again until Tom died. Then her health plummeted within a month. Complications put her in the hospital again.

Two older adults getting off a bus. Next Avenue, caregiving for mom — Mom and Tom in St. Petersburg

That’s when she repeated that Dad was preparing to welcome her. She wanted to go. Tearfully hugging my mother, I told her it was OK. I understood. I wouldn’t hold her back.

They requested my mother’s advance health care documents when she was admitted to the hospital. I gave them a copy of her Five Wishes form, verifying she didn’t want life support treatment to keep her body alive when she was close to death.

Even though this paperwork was accepted and filed, Mom’s plans were almost upset when she went into immediate cardiac arrest in the middle of the night. Finally, exhausted, I left her hospital room to go home for a shower and a few hours of sleep. But a hospital nurse called after midnight, saying they were taking Mom to the intensive care unit (ICU) for life support.

“No! That’s not what she wants! Read her advance care directives!” I yelled over the phone. “I’ll be there as fast as I can. Please don’t move Mom!”

I pulled on my jeans and raced for the car, driving in the dark over the speed limit. I ran to her room with a copy of Mom’s Five Wishes form. Assistants started rolling her bed into the hall on the way to the elevator and the ICU.

Committed to Her Wishes

The nurse said she needed to get the doctor. He looked over the forms, stepped away for a few minutes, and returned to ask what I wanted. “Plain palliative care, please!” I answered.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care.

Fast forward. That’s precisely what happened, with my mother moved into a private hospice care room. My brother and I were allowed to camp with her in that room for the remaining three days of her life.

We facilitated a few short phone calls with her family, sang to her, read her favorite scriptures, and monitored her morphine. Then, before slipping into her final slumber, she told us of a clear new vision, where she saw relatives waving from across a bridge and preparing for a party.

“They have to wait for me to cross over that bridge before starting the festivities,” she said. Tom and my Dad were in that welcoming crowd, along with her mother and aunt. She finally said, “Awesome!” as she crossed her bright bridge.

Most Don’t Have End-of-Life Conversations

In June 2020, the National Poll on Healthy Aging was conducted for the University of Michigan’s Institute for Healthcare Policy and Innovation. A sample of U.S. adults aged 50–80 was asked about their advanced care planning.

Nearly two in five adults aged 50–80 had not discussed their health care preferences if they experienced a severe illness. More than two in three hadn’t completed an advance directive and durable power of attorney documents.

More than half of the folks who had not talked about their care preferences with others or completed related legal documents said it was because they needed to take the time to do this.

I encourage you to avoid heartache and upset as you consider what you want and do not want for your end-of-life care. I hope my story encourages conversations with you and your loved ones. It’s a precious gift you can give them.

Complete Article ↪HERE↩!

January 15, 2023January 14, 2023

Preparing Jewish bodies for burial, an artist finds inspiration

‘I could have painted landscapes,’ says Karen Benioff Friedman. Instead, she’s portraying the rituals around death.

Angels of Mercy Embrace the Dead, 2023, oil on canvasboard.© 2023 Karen Benioff Friedman.

By Stewart Ain

When a Berkeley rabbi in 2004 announced that he wanted to form a chevra kadisha, Hebrew for a group that cares for the dead before burial, an artist in his congregation signed herself up.

Karen Benioff Friedman had a mostly secular upbringing, and hadn’t known much about Jewish burial societies, but she knew she wanted to be a part of one.

“What I found compelling is the idea that we never leave the dead alone,” she said.

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Thresholds: Jewish Rituals of Death and Mourning – Placing the Metah into the Casket, 2019, oil on canvas. © 2023 Karen Benioff Friedman.

Ten years later, while Friedman was studying human anatomy and classical realism at an Oakland art school, she learned of 18th century paintings of Prague’s chevra kadisha. They depicted tahara, the rituals of the burial society.

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Thresholds – Jewish Rituals of Death and Mourning – Tying the Avnet, 2023, oil on canvas. © 2023 Karen Benioff Friedman.

As part of these rituals, bodies are placed in a white shroud before they are lowered into a casket. Coincidentally, Friedman had been painting images of shrouded figures. Seeing the Prague paintings made her think that tahara could be her subject too.

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Tahara, 2021, graphite on paper. © 2023 Karen Benioff Friedman.

“I could have painted landscapes or pets, but this is what really moved me,” said Friedman.

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Taharah: Pouring the Second Bucket, 2017, oil on canvas. © 2023 Karen Benioff Friedman.

Since then, Friedman, now 59, has drawn, painted and etched more than 150 images of tahara, each a window into a ritual so private that many Jews have little idea what it looks like. Those who perform tahara wash the body, and sit by it through the night, reciting prayers and psalms.

In her paintings, gauzy figures, some enveloped in light, attend lovingly to the dead, cradling their heads and pouring water over their bodies. The mood is somber, despite the daubs of bright blue she often uses for the aprons of the women of the chevra kadisha.

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Thresholds, Attending Grandmother’s Passing, 2020, charcoal on paper. © 2023 Karen Benioff Friedman.

Tahara calls for men to care for men and women for women, so Friedman’s subjects are mostly female, because, she said, that is what she knows from her own participation.

Respecting tahara, which means “purification,” Friedman would never try to draw or take photographs of the deceased. But she didn’t work solely from memory either. She hired models to impersonate both the living and the dead. One model did a “pretend tahara while another pretended to be a body that was dressed in a shroud,” she said. She worked from the photographs she took of them.

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Angels of Mercy Embrace The Dead, 2019, charcoal on paper. © 2023 Karen Benioff Friedman.

Friedman paints in oils and makes monotypes, a form of printmaking. All her drawings are in charcoal.

Many of her works depict angels. “One of the main pieces of liturgy we talk about is the one about the angels of mercy who embrace the metah — the female body,” Friedman said. “Angels come up a lot, including standing outside the gates of heaven. I love the concept of the angels.”

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Angel of Death Holding an Infant, 2022, monotype on silk. © 2023 Karen Benioff Friedman.

Ultimately, she said, she wants her works to teach about the mostly hidden work of the chevra kadisha, and its commitment to respect the dead, no matter who has died.