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‘Pain renewed her resolve’

— How my mum tried to die on her own terms

Marianne Brooker’s mother in 2016.

Writer Marianne Brooker reflects on the onset of her mother’s multiple sclerosis , the ‘broad-shouldered, red-eyed’ work of caring – and, after doctors and politicians had failed to help, her mother’s decision to hasten her death

By Marianne Brooker

In the early 1990s, a year or so after I was born, my mum and I swapped my grandparents’ spare room for a council flat on the other side of town. Our new neighbourhood was tucked away in the looming shadow of a Procter & Gamble factory, the air around us thick with soap. I remember the flat being palatial, maybe because I was small or because memory can render pleasure in square metres, expanding the space with the strength of feeling. In a photo taken there when I was four or so, I’m crouched on the patch of grass outside, hair in a ponytail and smiling straight at the camera. Ahead of my time, I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.

Growing up there, I had a small circle of imaginary friends, some of my own making and some borrowed from the world (David Bowie chief among them). Each evening, I’d find two plates laid out for my dinner: one for me and one for Louis-Lou, my favourite made-up friend. My mum would wait for me to finish and go to bed before eating the second, untouched plate herself. I don’t remember this, but she often told the story, proud of her generosity and fortitude. As adults we’d joke: “How hungry are you, and how about Louis-Lou?”

Once, we wrote a letter to ET, another of my imaginary friends. To my surprise, soon after, I found a reply waiting on the doorstep. I’d only just learned how to read and knew instantly that his language of bright pink shapes and symbols wasn’t mine. Curious, we took the letter to our neighbour, the only person we knew with an alien translation machine – or so my mum claimed. I watched as she summoned the message up on its screen, the hard drive gently whirring as it translated the otherworldly Wingdings into words. I lost the letter many years ago and don’t remember what it said, but I still wonder at it: the sheer invention, the shared belief.

Play like this engenders a politics of alliance, not transcending our material conditions (impossible), but transforming them, plate by plate, letter by letter, dream by dream. We carried our determined fantasies into adulthood. Growing older, we welcomed in all that was strange and pushed at the world’s limits, always summoning some secret power.

Marianne Brooker as a child.
Marianne Brooker as a child. ‘I’m wearing a black T-shirt, black jeans and tiny, flowery Dr Martens – unquestionably my mother’s daughter.’

In 2009, when I was 17 and my mum was on the cusp of 40, she started to stumble and slur. Despite her protestations, the GP was sure it was “just vertigo”. One day, she came home from the hospital with an MRI scan in a large brown envelope and a diagnosis: “I reviewed this lady today,” the letter from her neurologist to her GP begins, before adopting an unfamiliar language: “The oligoclonal bands are positive in the CSF and I explained to her that she has the primary progressive form of multiple sclerosis. Naturally this is distressing for her.” Naturally. About 7,000 people are newly diagnosed with MS each year in the UK. About 10% of those are primary progressive: symptoms can be varied but deterioration is persistent, with no remission and – at the time of my mum’s diagnosis – no cure (new treatments are now becoming available).

In the years that followed, my mum felt the sharp edge of disability under austerity and still rose to meet life with more fight, ingenuity and generosity than I can properly grasp. Busying herself with baking cakes to raise money for the MS Society and abseiling from the Forth Bridge, she made a mission of her disease. Her sense of agency and community ran deep. She didn’t just fight for rights but for means: making and supporting friends through online forums; picketing outside her local benefits assessments centre; lobbying members of parliament for greater support.

Her determination to live a good life was only matched by her determination to die a good death. In 2014, we visited our MP in a canteen in Westminster. She met his posturing with rigour, fanning out pages of research across the table and forcing him to confront what life was like for so many disabled and dying people. I watched her describe what her life was becoming – trapped, fearful – and what it would be like for her to die: painful, slow. Outside, her fellow demonstrators rallied on Parliament Square, demanding a change in the law to allow terminally ill people the right to an assisted death. But the laws didn’t change.

Before you can understand how my mum died, you have to understand how she lived. Sick and poor, she made a workshop of herself. When her hair fell out, she learned about wig-making and tracked down cheaper versions of her favourite styles from foreign wholesalers. When her teeth fell out, she learned how to mould dentures from a bright white and pink polymer. She duct-taped her feet to a tricycle so that she could feel the wind in her hair. She made an eye patch from an old bra. Necessity, they say, is the mother of invention. But there’s something else in this mix – a defiant kind of self-love: each act a refusal, each invention a gift. These inventions were a means of survival, in material terms and in more personal, psychological, even spiritual terms; they gave her a sense of vocation, pleasure, creation and repair.

When she couldn’t afford her first electric wheelchair, her friends and I clubbed together to buy one on eBay. One friend made a seat cushion and armrests from a cosmic blue fabric, emblazoned with gold stars. We stuck a transfer to the wheelchair’s old, heavy battery that read powered by witchcraft. I have a photo of her whizzing up the hill by her cottage, a shooting star with her dog trotting beside her, her new wig shining in the evening sun. She couldn’t be contained or curtailed; she was a woman drawn to the DIY and the don’t fuck with me. More than symptom management, she created a pattern for a whole other way of life: world-making against the world; surviving within and against the material conditions of scarcity.

Eventually, denied a livable life and a legal right to die, my mum made a choice within and between the lines of law. A decade after her diagnosis, when she was 49 and I was 26, she decided to stop eating and drinking to end her suffering and her life. This process is referred to as VSED: voluntarily stopping eating and drinking.

I discovered her plan by accident, through something offhand she’d said to a friend. Shocked, I listened and protested, clutching at every straw: more care, better care; more money, more time. There had to be another way. She resisted: her quality of life felt too thin, the pain too intense, the threat of losing the capacity to communicate her wishes too great. I looked for clues, catalysts, the last straw: why now? I’m not proud of my first feelings. Shock gave way to hurt: is such a thing even possible, does our love for each other mean nothing? Disbelief gave way to suspicion: is it that bad, are you that sick? I turned her decision into a mirror: am I that bad? We’d talked often about her wishes, but never about stopping eating and drinking. It felt cruel, unimaginable.

We negotiated a pause, time to think and – I hoped – avoid so stark an ending. I insisted she speak with her MS nurse and her GP. The strange prospect of VSED tore me in two, cleaving my head from my heart. I wanted my mum, for her own sake, to be allowed to die; but I wanted her, for all the world, to never be dead. The first felt abstract, fodder for debating societies and newspaper articles; the second lived in my guts and on the surface of my skin. For my mum, of course, the reverse seemed true. Being dead was no great fear of hers, but being compelled to live was killing her.

Marianne Brooker’s mother in 2016
Marianne Brooker’s mother in 2016: ‘I have a photo of her whizzing up the hill by her cottage, a shooting star with her dog trotting beside her, her new wig shining in the evening sun.’

Searching online, I learned that although assisted dying is illegal in the UK, voluntarily withdrawing from life-sustaining treatment, food and water is not. Doctors are obliged to support patients in the usual way as new symptoms resulting from dehydration emerge and dying quickens. By this method, no one could intervene to hasten her death and no one could intervene to save her life. VSED might allow her the ritual of dying in a time and place of her choosing, with all its bedside tenderness; we wouldn’t break the law, even if the law did little for us.

My discovery knotted in my chest, I started making arrangements to move back home indefinitely. I had three jobs to extricate myself from and excuses to make. For my favourite of the three, I cycled to a nearby neighbourhood to lead a reading group. That week, we started Maggie Nelson’s The Argonauts. In it, she describes going into labour, interspersing accounts of her experience with passages written by her partner Harry as he cared for his dying mother: birth maps on to death, each year of our lives like a palimpsest. It was the first time I’d read a narrative account of watching one’s mother die. Marking it up to teach, I underlined reminders for myself: “put a pillow under her knees”, tell her “that I loved her so much… you are surrounded in love”. Curious and selfish, I hoped that the book would reveal some great secret to me. Harry’s mother was “sick and broke and terrified”, not unlike my own. She chose her suburban condo in place of a Medicaid facility; “who could blame her?” She wanted to die where she had lived and to be crowded in by her familiar knick-knacks. Books like this enact their own quiet form of assistance; rallying around me like shields, windows and crutches.

I returned home in December, following some shorter weekend visits. Our pause had already stretched into months and I was sure we could stretch it further still. My mum’s cottage was piled with clutter. She lived in a time capsule of 70s melamine, torn lino and frayed net curtains. But she brightened it, filling every room with handmade treasures and trinkets. She expanded to fill each of its nooks and crannies, nurtured a sincere affection for its quirks and didn’t give an inch if anyone dare suggest she move somewhere on the ground floor, somewhere more accessible, more modern. “They’ll have to wheel me out of here,” she’d said for years. Insecure housing had chipped away at her sense of belonging, but this cottage was different; this home became hers, if only in her mind – and that’s no mean feat.

I loved it too: conversations at her dining table, deep into the night; the smell of freshly baked bread in the morning; the flower boxes lining the entrance ramp that a friend had built. The shade is well-known locally, marking buildings that are owned by one wealthy family. Every day, my mum’s green door insisted that her home did not belong to her. Every day, her ramp countered: in spirit, in belief, in every daily ritual of waking up and getting by – this was where she belonged, this house would hold her.

I remember one meal in particular, her almost-last. My mum took the lead, lighting the moment with the slow glow of mutual appreciation. Too often, I’d cooked for rather than with her, an admission that catches in my throat – what a rookie error. This time, I followed her instructions attentively: waiting to be guided by her, letting go of the things I’d do a little differently. We made a vegan quiche with chickpea flour, smoked vegan cheddar, onions, peppers, and what we affectionately called “fanny flakes” – nutritional yeast high in vitamin B12.

Care is broad-shouldered, red-eyed work: labouring against bedsores and cramps, lifting, cleaning, feeding. Like all things, care can break. In 2018, a survey conducted by the trade union Unison found that one in five surveyed care workers weren’t given the time to help their clients to the toilet. A similar number did not have time to prepare food or drinks. Nearly half said that they did not have time to support people “with dignity and compassion”. My mum wasn’t making her choice in a vacuum: there was no world in which she could grow older and sicker without struggle.

Portrait head and shoulders photograph of Marianne Brooker.
Marianne Brooker.

I was surprised to learn that hospices are only funded in part by the NHS – 30-40% in 2023. For years, their statutory income has been cut or frozen. For the rest they are reliant on donations, sponsorship, lotteries, legacies, grant fundraising and, of course, charity shops. Countless hospices advertise “sponsor a nurse” programmes, with small regular donations funding the cost of a shift or a palliative medicine. There’s a strange arithmetic to charity like this: your donation might help one or five or 10 patients in their final days of life. My mum was facing her voluntary death, watched over – in part – by volunteer “night sitters”, nursed by people whose work is funded through voluntary donations. The care we received was faultless (I say we, because I felt cared for too, by these people who listened, without judgment). But it could only alleviate so much.

Our last Christmas was slower and quieter. Pain clamped around her stomach and the lower part of her back or shot through her legs in sharp spasms. I associate that word with shuddering movement, but her spasms weren’t visible in that way. The movement happened below the surface, like an extreme cramp that often brought her to tears.

On Christmas Eve, she lay on the living room floor, making herself incredibly small. I’d seen pain crease and curl in her body before – winces, frowns, sharp inhalations of breath. But I’d not heard it like this, wailing out. I just sat there, my arm across her back. I got as close to this feeling as I could but couldn’t stop it, couldn’t even soften it. She took the heaviest pain relief she could and it knocked her straight out. She woke up the next afternoon, just in time for me to scoop out the fluffy middles of roast potatoes so that she could eat them.

Empathy teaches us that we can feel as one another – one’s own skin shakes, head aches and eyes water. But this attenuated feeling announces a distance between the person in pain and the person feeling its ripple. There’s a space between the person whose pain is intrinsic, from the nerves outwards, and the person whose pain is relational, from the world inwards. I wasn’t gripped by pain in the way that my mum was, but I chose to sit with it, with her. I couldn’t learn her pain from books; I couldn’t catch it from touch. But still it moved me and moved in this way, I could begin to accept her choice.

Pain renewed her resolve. For 20 days, we were suspended in an interval, a middle space between living and dying. At this temporary remove, my mum stopped eating and drinking and I found my way around a new type of work: navigating and advocating; lifting and bathing; checking dosages and picking up prescriptions; paying two lots of rent – hers and mine – as we transformed her home into a hospice. This interval was secret and particular – something between us – but common, too, an exception that exposed a fundamental condition of being a human in the world: we are interdependent, both separate from and reliant upon others.

Complete Article ↪HERE↩!

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Demystifying death

– A palliative care specialist’s practical guide to life’s end

Even people who are comfortable discussing death – including the inevitable prospect of their own – might understand little about how it actually tends to unfold unless they’ve experienced it firsthand alongside a loved one. In this brief animation, author Kathryn Mannix, who worked as a palliative care physician for 20 years, offers viewers a sensitive, honest and practical guide to how death tends to progress under normal, or perhaps ideal, circumstances. Pairing her narration with gentle, flowing animations, the UK filmmaker Emily Downe’s short makes a powerful case that there’s deep value in discussing and understanding death well before it touches us.

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Tell-Tale Signs A Person Is In Pain At The End Of Life

Pain is a chief concern frequently voiced among patients nearing the end of life, according to a 2020 study published in BMC Palliative Care. Depending on a person’s health status, some people may be more susceptible to pain during the dying process than others. Such may be the case if a person is dying of a particular illness or disease, such as cancer. Research has shown that 64% of advanced-cancer patients report being affected by pain. Health issues related to cognition, however, such as dementia, have been linked with lower rates of reported physical pain.

Pain experienced specifically within the months prior to one’s passing has also been the subject of scientific research. Findings of the 2020 study found that fewer than 1 in 5 people in Canada experience severe pain during their last month of life. Conversely, an alternate 2010 study published in Annals of Internal Medicine found that 60% of patients with arthritis experienced pain within the month before their passing. These findings further demonstrate the influence of health conditions on pain toward the end of life.

Unlike a wound or a scar, pain isn’t something we can see with our own eyes. Therefore, we must rely on other indicators that can help us determine whether a dying person may be experiencing physical discomfort and how we may help ease that pain.

Pay attention to a dying person’s body language

In some cases, a dying person may be able to vocalize that they’re experiencing pain. If not, take note of their body language. If the person grimaces, moans, stiffens, tightens their fists, or clenches their teeth — particularly if this occurs while you’re attempting to shift or reposition them — then these are indications the person may be in pain, according to experts at the Hospice Foundation of America. Additional non-verbal signs may include frowning, fidgeting, deep breathing, crying, sighing, or a facial expression that communicates fear, per Hospice Red River Valley.

In addition to (or instead of) physical pain, a person may also be in mental or emotional pain towards the end of their life. Such pain may present in the form of nightmares, nervous laughter, irritability, crying episodes, anger, boredom, anxiety, or more. For verbal patients, these kinds of emotions may be indirectly expressed with statements like “nobody cares” or other sentiments of doubt, cynicism, apathy, or distrust, amongst other feelings.

Pain relief methods for people who are dying

When tending to a dying person’s physical pain, setting up a system of communication can help caregivers better understand what means of pain management or treatment the person may be in need of. The more specific the terms, the better. Pain descriptors such as sharp, dull, throbbing, burning, constant, or shooting are effective examples, states Hospice Red River Valley. Verbal patients may wish to use these words themselves, or caregivers may offer these words as prompts for patients who communicate non-verbally. Using terms such as these that provide insight into the duration or severity of the pain can also help caregivers track pain progression or improvement.

End-of-life pain treatment methods often involve medication. Depending on the cause and severity of pain, patients may be given over-the-counter (OTC) medications such as acetaminophen or NSAIDs, or may alternatively be given opioid analgesics under careful monitoring by a medical professional, according to 2023 research published in StatPearls. Mental health counseling, spiritual counseling, or acupuncture may also prove helpful. Caregivers can also help prevent the development of pain during the end of life by regularly repositioning individuals who are bed-bound as well as maintaining proper patient dental care.

Complete Article ↪HERE↩!

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Preparing to Meet Your Maker, Plus Cake

— The Life of a Death Cafe

Can the “death positive” movement help fix our dysfunctional relationship with the inevitability of human demise?

by Steffie Nelson

An early and pivotal scene in Greta Gerwig’s “Barbie” finds a rager underway at the Dreamhouse. Dressed in sequins and spangles, Margot Robbie leads the Barbies in a choreographed routine to Dua Lipa’s “Dance the Night.” After they throw their synchronized hands in the air, certain that tomorrow will be “the best day ever,” Robbie pauses, an ecstatic perma-grin on her face, and blurts out, “Do you guys ever think about dying?” Screeeech. The dancing stops; Barbie’s grin falls away. “I don’t know why I just said that,” she stammers. “I’m just dying…to dance!” Everyone cheers, the music resumes and all is right once again in Barbieland.

Minus the disco dancing, the scene is a fairly accurate depiction of how conversations around death tend to go in our society. But there are signs that this may be changing, thanks to a growing “death positive” movement that seeks to normalize the recognition and embrace of the ultimate elephant in the room. The movement’s advance can be measured by the growing popularity of Death Cafes such as the one I joined on a recent Thursday afternoon in the L.A. neighborhood of Los Feliz.

Around 20 of us had gathered for the monthly meeting inside a sanctuary hung with silk Buddha tapestries on the second floor of the Philosophical Research Society. Ranging in age from mid-20s to mid-70s, we knew little about each other beyond our common interest in talking about death and dying. As per Death Café tradition, tea, coffee and cake were served. First-timers quickly learned that the meetups were not grief or bereavement groups by another name.

It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death.

“It is really just giving people the opportunity to talk about death from whatever perspective they feel is important to them at the moment,” said the event’s founder and facilitator, a 72-year-old artist, transformational psychologist and scholar of comparative religions named Elizabeth Gill Lui.

It was during the pandemic that Lui began to explore how Western culture related — and failed to relate — to death. “You’d think we would find common ground,” she recalled. “Instead, it’s politicized. Because I’m closer to my own death, I felt that I should have been more informed about the issues surrounding death and dying.” Lui took a course on Zoom to become certified as a death doula, or an end-of-life caretaker who provides non-medical assistance and guidance to the dying and those close to them. In September of 2022, she organized her first Death Café at the Philosophical Research Society, a spiritual and cultural center she considers her “intellectual home.” It has met on the third Thursday of the month ever since.

The first-ever Death Café was hosted by Jon Underwood in his London basement in 2011. According to his original guidelines, the meetings must always be not-for-profit and remain fundamentally unstructured. Inviting a guest speaker, selecting a book to discuss, choosing a theme — any such activity disqualifies the event from using the Death Cafe name. The host is obliged only to serve tea, coffee and cake, and open up a conversation.

Because death is not an easy subject to broach, the freeform meetings are designed to help participants find their own way. “If you get people talking about it, they start to find the language,” said Lui. “Everyone has something they can think about and share that needs to be heard.” In this moment in history, when overdoses, suicides, school shootings, climate crises and war are part of the daily discourse, a death discussion might also address societal and environmental devastation.

Caitlin Doughty founded The Order of the Good Death in 2011.

Every meeting brings together newbies and regulars, many of whom are relieved to discover a meaningful social outing devoid of small talk. “From the moment we start talking, it’s authentic,” said Lui. “It gives people the opportunity to touch something that’s at the core of who they are. It’s not about the weather or traffic, or ‘What did you do today?’ I think people are hungry for that.”

On the afternoon I attended, Lui opened the conversation by asking what brought us here. The responses varied from the loss and illness of friends or family members, to the dawning awareness of death by people in their 70s, some of whom were beginning to educate themselves about the right-to-die movement and eco-friendly burial alternatives. Several were end-of-life or grief counselors. A few people admitted they were simply afraid of dying. Whatever our motivations, Lui encouraged us to “befriend death.” When a companion is as constant as death, it is preferable that it be a friend rather than an enemy.

When my turn came, I explained that the death of my beloved dog earlier that year had been part of a personal reckoning around mortality — my own and that of everyone I loved. I admitted that I found the subject difficult to discuss even with close friends. And yet here I was, opening up with a group of strangers. Over the course of two hours, the conversation touched upon the effects of the hallucinogen DMT, Anderson Cooper’s grief podcast, an episode of “Black Mirror” that explored the digital afterlife, and a Getty Villa exhibition about the “Egyptian Book of the Dead.”

Lui’s is just one of a number of Death Cafés that meet in and around Los Angeles. Through the organization’s website you can find information for similar gatherings in San Diego, Santa Barbara and Palm Springs. To date, Death Cafes have been held in 87 countries, from Afghanistan to Zimbabwe, but Lui’s is the only one where you might be served her legendary carrot cake.

Death Cafes are part of what has come to be known as the “death positive” movement. The term can be traced to the work of an L.A. mortician named Caitlin Doughty, who in 2011 founded The Order of the Good Death, an organization that advocates for funeral industry reform and a more openness around death and dying. The pandemic acted as an accelerant for “death positivity,” as millions of people found themselves forced to confront illness and mortality in previously unimaginable ways. Since 2019, membership in the U.S.’s National End of Life Doula Alliance has more than quadrupled, with new training programs being offered across the country to meet demand.

The growing field of end-of-life care is increasingly reflected in popular culture. The title character of Mikki Brammer’s 2023 novel, “The Collected Regrets of Clover,” for example, is a death doula in New York City who attends Death Cafes at the public library and drinks cocktails on the Lower East Side. “The secret to a beautiful death is to live a beautiful life,” Clover’s 87-year-old neighbor Leo tells her as he breathes his last, and more and more resources are consciously intertwining the two. The Brooklyn-based Morbid Anatomy has grown from a blog into an online platform, library and brick-and-mortar space where one can take classes, participate in a “Death Meditation,” and pick up objects like Victorian memento mori and Dia de Los Muertos-related folk art. There’s even a #DeathTok hashtag on TikTok featuring posts with billions of views.

This November, dozens of speakers on subjects such as psychedelic therapy and assisted suicide addressed 600 attendees from the death-and-dying field at the the sixth End Well Symposium in Los Angeles. Professional hospice care has been available for over 50 years — Elizabeth Kübler-Ross’s 1969 book “On Death and Dying,” which introduced the idea of the five stages of death, is a venerated classic — but with the death-positive movement, death is being embraced as a vital part of life, not just the end of it.

The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief.

Things were different as recently as 2018, when Departing Dearly founder Wendy Mullin found herself researching end-of-life services for her mother. “I realized during the process that there were a lot of things that didn’t make sense,” recalled Mullin, a designer of clothing and interiors. “Why are we putting these lacquered boxes in the ground and embalming people?” she wondered. For the creator of the fashion brand Built by Wendy, known for its rock ‘n’ roll tailoring and coveted guitar straps, the presentation of information was its own form of stylistic hell. “Everything was either religious or ugly. I felt like I was looking at the Zales Jewelers of death information.”

Finding no website that spoke to her aesthetically, Mullin began thinking about the need for something new. “Goop — but for death. Instead of lifestyle, what about deathstyle?” she said with a chuckle. In 2019, Mullin started developing a deck and talking to people about the project. When COVID hit, the idea of monetizing a site lost its appeal, and she turned down a couple of potential investors before deciding to build the site as a public offering in her own “punk rock” style.

The main image on the Departing Dearly homepage is a person stage diving into a crowd. It’s an analogy for “the process of dying,” said Mullin. “It’s like jumping into the unknown. You’re hoping someone is gonna catch you. You’re trusting other people to help you.”

The site is a wealth of practical resources and information on death preparedness, end-of-life care, funerals and grief. It also explores how death shows up in art and pop culture, from a classic film like 1965’s “The Loved One” to a virtual reality near-death experience called Virtual Awakening. Recent posts on the Departing Dearly Instagram account feature the show “Succession,” the climate activist group Extinction Rebellion, and the 97-year-old artist Betye Saar, whose large-scale commissioned work “Drifting Toward Twilight” recently opened at The Huntington in Pasadena.

Like Lui, Mullin became certified as a death doula during the pandemic as a way to deepen her relationship with death and dying. The training helped her initiate meaningful conversations with older relatives and allowed her to get more comfortable with her own mortality. Fundamental to her understanding was Ernest Becker’s 1973 book, “Denial of Death,” which posits that our society’s competitive drives toward status and success are elaborate distractions, as Mullin described it, “so we don’t have to stop and look at the fact that we’re gonna die.” (She also links our phone addictions to “death anxiety.”)

“I think it’s literally being ‘woke,’” she said of the decision to face death. “We’re waking up to our own lives.”

Last month, I found myself at the Philosophical Research Society again, this time for a Living Funeral Ceremony. Essentially a guided mortality meditation, this ritual was created and led by Emily Cross, a musician and death doula who runs the Steady Waves Center for Contemplation, an end-of-life space in Dorset, England. Cross had traveled to the U.S. to host several ceremonies on the West Coast; this one was organized with the group Floating, which facilitates events related to music and healing.Although ceremonies at Cross’s center can involve lying in a woven willow coffin, for this one we sat and lay on yoga mats.

I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.

Cross created the Living Funeral Ceremony after hearing about the South Korean tradition of mock funerals, which were developed to curb the country’s high suicide rates. “The purpose of this ceremony,” she said, while moving softly through the room as we contemplated our own image, “is to enrich your life by bringing death into immediate and clear view.” There were some tears shed as we were guided to say goodbye to everything we knew and loved. Before each mat was placed a clipboard with a single sheet of paper, on which we were to write our last words. Then, Cross began a deep, guided visualization of letting go of our physical bodies as we covered ourselves with a funereal shroud. After some time inhabiting this fugue-like state, we were guided back by her voice.

I will admit that my own “final” words included regrets and unresolved emotions. I am not one of those people who could die happily tomorrow, satisfied that my purpose has been fulfilled. Yet I was surprised to discover that, when contemplating what I might “leave behind” after death, the idea of worldly accomplishments barely registered. My mind wasn’t trained on legacy or immortality, but on love and energy. I found unexpected solace in the idea that my spirit could exist as a ray of light or the sound of a bell, struck just once but reverberating through eternity.

After we came back to “life” and shared our experiences, I felt grateful and glad to get to live another day — and to have time to work on those regrets. When the time does arrive, I hope to have cultivated Lui’s fearlessness. “I want to experience death,” she told us with a smile. “I’m convinced it’s going to be interesting.”

Complete Article ↪HERE↩!

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My dad’s funeral in the Philippines showed me it’s OK to party the pain away

— When my father died suddenly of a heart attack, I was thrust into an unfamiliar world of grieving

Jim Agapito, left, and his father, Simeon Agapito, being mall rats in 2017.

by Jim Agapito

After his father’s sudden death while on vacation in the Philippines, Jim Agapito rushed to his funeral. But when he arrived from Canada, he was thrown into an unfamiliar world where his sombre understanding of mourning was replaced by superstition and festivities.

It took three days to get to my dad’s funeral in the Philippines because of a chaotic string of flights and cancellations: Winnipeg to Vancouver, Vancouver to Tokyo and Tokyo to Manila. When I landed, it took another four-hour drive to my mom’s home in a small, rural area called Jaen, Nueva Ecija.

I was tired and devastated. When I saw the coffin, all I wanted to do was burst into tears. But I couldn’t.

Crying on the coffin is bad luck, I heard in my mind. It’s what I had been told again and again by my Filipino family, who were all intent on observing Filipino customs and superstitions for my dad’s journey from the living to the afterlife

Imagine that. You rush halfway around the world to grieve your father’s death but don’t cry on the coffin because it could curse both of you.

I thought, Rest his soul, Dad is already dead. Who would be getting the bad luck?

I felt torn standing before his coffin, surrounded by family and friends who seemed to be keeping it together. On the inside, I was a wreck, and I just wanted to grieve for my father the only way I knew how. I wanted to cry. I wanted to be sad. I wanted to be alone with my mom and my brother.

But in the Philippines, there’s an unwritten but important rule: No one grieves alone, and it’s the family’s duty to create a happy atmosphere for grieving loved ones. Even if that means karaoke.

A smiling man with shoulder-length hair puts his arms around a smiling woman and a smiling bald man. They’re all standing in a mall.
Agapito, centre, with his mom Yolanda Agapito, left, and dad Simeon Agapito, right, grabbing coffee in 2018 in Winnipeg.

Fulfilling my father’s dream

This push and pull of how to grieve was a shock because it had been 34 years since I’d been to the Philippines. I was born in Canada and visited my parents’ homeland only once when I was nine.

After they retired, my parents split their time each year between the Philippines and Winnipeg. Dad was in the Philippines for Christmas when he suddenly died of a heart attack.

It was my dad’s wish that my older brother and I would explore this country he loved so much. And there I was, fulfilling his dream under the worst circumstances imaginable.

I’ve been exploring my Filipino culture through a podcast I host called Recovering Filipino. I delve into everything from why we as a community love basketball so much to what’s the obsession with sweet spaghetti.

But all of that exploration and learning didn’t quite prepare me for this deep dive into Filipino customs surrounding death.

A different way of grieving

Funeral parlours are expensive in the Philippines and there is no refrigeration for the body.

Instead, my dad’s coffin was placed in the living room of my family’s home. A home that consisted of my entire extended family — Lola (grandma,) three aunts, three uncles, five cousins and their children.

The house is big, but it’s also in a rural environment and a farm. As a city-slicker living in Winnipeg, It wasn’t like any of the Manitoban farms I went to on school trips in grade school. Our family home in the Philippines was an open door. It felt like every cat and dog in the neighbourhood roamed in the house, and goats and chickens roamed the yard. My family had to rearrange their living space based on burial tradition and superstition to accommodate the funeral. People argued about the proper procedures for mourning and how the donation box should be presented (one aunt said it has to be covered in a certain way or it’s bad luck).

Two men dressed in formal wear stand next to a woman. An older woman in a wheelchair is next to the trio. The group is standing next to an open coffin surrounded by white flowers.
Agapito, centre back, with his mother Yolanda, Lola (Epifania Bulaong) and brother Mark Agapito grieving by Simeon’s casket at Yolanda’s home in Jaen, Nueva Ecija, Philippines.

When my extended family gave their condolences and tried to talk to me, it would go in one ear and out the other. It felt like there were too many people surrounding me, and there was an expectation to entertain the guests who came for the funeral. It was a nightmare.

Dad’s funeral also coincided with Christmas. Christmas to Filipinos is like the Super Bowl of holidays. It’s the absolute biggest event of the year. Everyone is celebrating.

I was unprepared for this highly superstitious, party-the-pain-away take on mourning.

After the funeral service, we had a party to celebrate my dad’s life. Filipinos don’t believe the family should be alone and sad; it’s the job of the guests to make sure the family will be OK.

The party atmosphere was hard for me to stomach. I felt guilty for having fun after my dad died. I thought about locking myself in a room and just crying. In fact, I did try doing that at first but it’s something my family wouldn’t let me do.

Instead, they took me to shopping malls, public markets and to eat all the sugar and fried chicken my body could inhale. There was dancing, there was karaoke singing, and they even took me to ride ATVs and hold snakes at an agriculture and off-road park.

Initially, it was uncomfortable and strange to mourn like this, but I soon realized that being surrounded by family in this way actually made the initial grieving process easier.

A man holds a large brown snake around his shoulders and in his arms.
Agapito holds a Burmese python while visiting the Philippines for his dad’s funeral in December 2023.

Even the dead aren’t left alone.

Filipinos believe the body must have company so that the person can go to heaven peacefully. They believe mourners must stay with the body for at least three days so the person’s soul knows they’re dead but they have family to support them on their journey to the afterlife. It’s called the Lamay or wake.

Although many people I met in the Philippines for the funeral were strangers to me, they showed me that my dad always made people feel like they were not alone.

“You’re probably unaware, but your dad was why I could attend college,” one of my cousins told me. He helped pay for that cousin’s tuition for several years.

I heard so many stories like this.

Dad’s body wasn’t cremated with the casket. Initially, this made me angry. It felt like he was being cheated somehow. But then my mom told me, “We didn’t burn the coffin so it could be donated to a family. People here are poor. It’s something your dad would have wanted.”

Several adults and children pose for a group photo in a park. One of the women in the group is holding balloons that say “70.”
Once called a ‘bad Filipino’ by his lola (grandma), Agapito, second from left with the rest of his family, has been on a cultural recovery mission to learn more about his roots.

A different type of loss

I see now that my dad was a guy who loved living life. He liked to have a good time, so celebrating his life with laughter, singing and dancing made sense.

But how do I reconcile that with my understanding of mourning?

Back home in Canada, I often think about the time with my family in the Philippines. They helped me get through a lot of difficult times when the crushing weight of my dad’s death left me paralyzed and speechless. They taught me it’s OK to let loose and have fun.

It’s been hard being back in Canada. I feel so alone. I don’t have the warm and fuzzy security blanket of the family to grab me when I feel sad. But my mom reminds me that all of them, including her, are just a video message away.

Complete Article ↪HERE↩!

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Grieving the death of a pet

— Here’s how to help kids cope, according to experts

Involving your children in your pet’s death helps them grieve.

For many kids, the death of a pet is their first experience with grief. Here’s how to help them get through it, according to experts.

By

Many parents aren’t sure how to talk about the death of a pet with their kids. Children often have not experienced death and loss before, and many do not have an understanding of permanency yet. Thankfully, there are some experts in pet loss — and a slew of helpful books — that can help families cope with the death of a beloved pet.

As a veterinarian and mom of four, Dr. Stephanie Nelson has had a lot of experience with losing pets — and with how to talk to kids about it. Her kids, who range in age from 2 to 11 years, are used to having several dogs at a time, and many of those dogs joined their family as adults. “My kids have experienced losing many pets. My kids very much understand that dogs don’t live forever, and we are very open in discussion about the fact that they will see all of their pets die at some point,” says Nelson.

While a pet’s death will always be painful, there are some strategies and tips that can help children navigate their feelings. Here, Nelson and others share how to help kids cope with the loss of a pet, including how to talk about their grief and what to do to help them work through those painful and confusing feelings.

Whether you’re preparing kids to say goodbye to a beloved pet or sharing an unexpected loss, there are a few things to keep in mind as you explain the situation.

Be honest about what’s happening

Some of the language adults use to soften the blow of pet death can be confusing for kids, says Cōlleen O’Brien, a licensed social worker and the founder of BLUE dog Counseling. Phrases like “put to sleep” or “cross the rainbow bridge” make sense to adults because we are used to hearing them. To kids, those phrases are confusing and often scary, says O’Brien.

“Start with fewer details. You can always work up from there based on their questions. Young people are great investigative reporters.”
— Cōlleen O’Brien, licensed social worker

“We say they died or they will die, and that means that they won’t ever be awake or their body won’t be working. And they won’t be here with us,” she offers instead. She says to keep it as simple as possible. “Start with fewer details. You can always work up from there based on their questions,” she adds. “Young people are great investigative reporters.”

Help kids understand the process

Jana DeCristofaro, the community response program coordinator at The Dougy Center: The National Grief Center for Children and Families, says that pet euthanasia in particular may be hard for children to understand. “It’s different than when we talk to kids about a human in our life dying. As adults, you’re often making a decision in collaboration with a vet to help end a pet’s life, and we don’t really do that with humans yet.”

There’s a few simple scripts DeCristofaro says are helpful for parents to use:

  • “When our pet can’t get better and is suffering, we need to help end their suffering.”
  • “The doctor will give Franklin a medicine, just for animals, and that medicine will let them die peacefully and painlessly.”

DeCristofaro also recommends The Dougy Center’s guide to helping children cope with pet death, created in conjunction with Debra Lee, the veterinary wellbeing director at the DoveLewis Emergency Animal Hospital.

Offer reassurance

Letting children know that euthanasia is a choice due to suffering helps them process the deliberate act of ending a pet’s life. Clarifying that the medication is only for animals can ease fears. It’s important to reiterate that the pet will not feel anything when they pass away.

Helping kids cope with the death of a pet

While some children experience the loss of a human loved one devastatingly early in life, for most children, a pet’s death is their first experience with grief and loss. The skills they use to navigate the loss of the family dog are part of a foundation that will help them handle other losses throughout their lifetime — think of it as a chance to add to their emotional toolkit.

Viewing pet death as a form of grief is actually a relatively new way to look at it, says O’Brien. “Pet loss only started to be acknowledged in the 80s,” she says. “They were going like, ‘Hey, folks, we’ve missed lots of forms of grief.’” The death of a pet can affect kids — and grown-ups — in the same way that losing a human family member can, so it is important to acknowledge how big this may feel to your kids. Here are some expert suggestions to help them work through it.

1. Make room for complex emotions

It’s important to recognize that kids process grief differently at various ages, says O’Brien. “The question I get a lot is, ‘My little one is totally upset, and then the next minute they’re playing with their dolls. Is there something wrong with them that they’re not registering this properly?’” That compartmentalizing of grief is actually very common for young kids, she says. They may grieve for short periods of time and then appear unfazed.

For older kids, tweens and beyond, parents may see more classic signs of grief. “They’re conscious enough to know death is permanent,” says O’Brien, “but they haven’t had a lot of experience with permanency, so they’re grappling with that.” She says tweens and older kids are the age group that often becomes very quiet or even explosively angry at times while grieving.

2. Let kids take the lead

When kids are dealing with grief and loss, all the experts say it’s better to let them take the lead on processing their feelings. Offer basic information and answer follow-up questions. “As a parent you’ve got your kids in front of you, and your biggest priority is their well-being,” says DeCristofaro. “Our biggest instinct is to protect our kids from pain.” That instinct, though, can also prevent them from getting to say goodbye and feel what it means to grieve. If your pet’s death is not sudden and there’s a chance to say goodbye, offer it to your kids. If they say no, do not push.

“I think that it is good to have rituals with kids when they lose a pet. We scatter some of the ashes in that dog’s favorite place.”
— Dr. Stephanie Nelson, veterinarian

3. Create a goodbye ritual to help ease the pain

When one of their dogs is showing signs of aging or a terminal illness, Nelson says they use truthful language to explain what is happening. If they know when the death will happen, they prepare the kids and follow the same rituals each time.

“We spoil the dog beforehand. Every one of our dogs gets a whole Happy Meal that the kids get to feed to them,” she says. They let the kids say goodbye, but do not let them witness euthanasia. The family also keeps photos of beloved dogs on shelves in their house. The kids often stop by to look at them and share a memory or two, which Nelson thinks is helpful for them. “I think that it is good to have rituals with kids when they lose a pet. We scatter some of the ashes in that dog’s favorite place,” she says.

4. Consider censoring certain parts of your pet’s death

Some kids may ask if they can see the pet be euthanized or see them after they die. “Most people do not bring younger kids to a euthanasia and instead choose to say goodbye at home,” says Nelson of young children. Some tweens and teens do ask to come along, and she advises being honest about what they will see. “Some children do not want the last visual of their pet being after it has passed away; it is often easier on them to remember only the pet alive and at home,” she says.

As for viewing ashes or other remains, that is another decision to let the child make once you’ve provided them with all the information. Explain that their pet will not look like they remember — ashes will look like a small pile of bone shards and dust, and a deceased intact pet will be cold and stiff. O’Brien says it is better to wait until the child asks, rather than to offer.

5. Practice bibliotherapy

All of the experts love bibliotherapy, or the art of using books to process emotions. They recommend the following books to help kids deal with the death of a pet:

Nelson adds that for older kids and teens, any book on grief is helpful, even if it’s not pet-specific — kids are able to make those mental connections as they age.

When to get a new pet after a loss

As to when to get a new pet? That’s another great place to let children lead, though it is important to make sure the whole family is on board with adding another animal. Some families find getting a new pet quickly helps kids shift their focus from the loss, while others need more time to feel ready. Both options are normal and acceptable.

Many kids worry their deceased pet will resent a new pet. “We ask, ‘What would your pet think if you gave another pet a loving home and cared for them?’” says O’Brien. “Most kids say, ‘Well, they would want me to do that.’”

The bottom line

Losing a pet is one of the most difficult experiences a family can go through. But, with the right preparation and openness to discuss big feelings, it can also be a foundational moment in a child’s life where they learn how to navigate grief and loss. As you navigate a loss, don’t forget to talk to your veterinarian, too. Many are experienced in helping families navigate pet death and can be a great source of support.

Complete Article ↪HERE↩!

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Tips for caring for loved ones at the end of their life

— Palliative-care experts on how to comfort a dying person and prepare yourself for the supportive role

By Caitlin Stall-Paquet

Though it’s a natural part of life, death is a tough topic for many of us — even in a country where palliative care is becoming the norm. According to a recent survey, 54.5 per cent of Canadians are dying at home or in community settings, such as hospices, rather than in hospitals. Given the country’s aging population, that number will increase dramatically in the coming years.

It can be overwhelming to care for a loved one who’s dying, to say the least, so we spoke to three experts — who deal with death every day — to get their advice.

Being honest about what’s ahead

Palliative care co-ordinator Shelley Tysick said it’s important for both the dying person and the caregiver to understand what’s ahead. “Preparing somebody, it alleviates a lot of stress,” said Tysick, a palliative-care co-ordinator at Victoria-based Island Health. “And any new experience, if we don’t really know what to expect, it’s hard to know what’s normal.”

Naturally, it can be hard to broach discussions about intimate caregiving, but it can help to do it at the right time. Tysick said creating a care plan early, when there may be less stress or overwhelm, is wise. “Part of that dying process does mean depending more … on others to care for you,” she said. “That includes your personal care, your toileting, your mouth care, your eating, all of that is part of that process. And so having a plan in place and how that could be supported early on, I think is really helpful.”

Anne-Sophie Schlader, executive director of Nova Home Care in Montreal, knows just how challenging this time can be and, on top of that, what it takes to do this type of work. She emphasized that caregivers need to bring a lot of themselves to this work. “Being respectful and compassionate, not passing judgment, being sensitive and dedicated — I would say those are all very important qualities,” she said. Schlader recommended that anyone thinking of being a caregiver assess their capacity honestly and respect their personal limits to avoid causing themselves undue emotional distress or trauma.

And don’t view it as a failure if you can’t be a caregiver. “If you’re not able to do this work, it’s not because you don’t love the person,” Schlader said. “It’s a question of personal boundaries. You will show your love for them in other ways. It’s important that you don’t define this role as either ‘I love you’ or ‘I don’t love you.'”

Deferring to the medical team — and the patient

As a caregiver, it can be useful to consider yourself an extension of the medical team (while, of course, never performing tasks reserved for professionals). Your proximity to the dying person can be a huge asset — changes you see in the patient could inform their treatment.

For instance, if you notice your loved one isn’t eating as much, it can be a sign of advanced illness or a gastrointestinal issue, the experts said. But caregivers might have a hard time letting the dying person take control of their diet, and try to push them to eat even if they don’t want to. This response is common, according to Tysick and Schlader, since keeping someone nourished can feel key to caring for them. However, rather than force the dying person to eat, the advice is to share this change in appetite with the palliative-care team as soon as possible.

Also, Tysick said it can be hard for people to take a step back and make space for our loved one’s wants. “I think we often sort of want to move in to fix things,” she said. “We … identify what looks to be the problem and/or what we think would be best … with a good intention to help — but not recognizing that that’s what we would want for ourselves, but not necessarily what that person may want for themselves, or what might be most meaningful.”

What someone wants at the end of their life is influenced by their social, spiritual and emotional needs and is an individual experience, Tysick said. “There is no one way [to die],” she said. “There’s no best way — there’s no right way.”

Offering comfort

This doesn’t mean there aren’t plenty of things you can do to care for your loved one and make them more comfortable, while keeping the stakes low. “Dying people need to be touched — gently, because sometimes they’re in pain,” Schlader said. “But even if it’s just placing a hand on them, they feel it, and it’s very comforting.” She said it can also help to play calm music, wash their hair, rub moisturizer on their back, change their pillow for a fresh one, and if appropriate, place a warm compress on any sore spots.

Meeting the needs of the dying person can get expensive, however, if you need to buy equipment, like a hospital bed. Kayla Moryoussef, a death doula based in Toronto, suggested shopping for these items second-hand in stores or online marketplaces, then reselling them or giving them away when you no longer need them.

Also remember that grieving together with your loved one can be healthy and a way to show you care. “The dying person has the right to grieve their own death, and that’s often overlooked,” Moryoussef said.

In fact, the experts we talked to said it’s essential that end-of-life caregivers make space for what their loved ones need to say. “With the dying person, it’s mostly about listening,” Moryoussef said. “It’s not about what I have to say — it’s mostly about what they need to talk about.” Part of her job includes helping her clients think through what’s important for them to do before they die, like writing goodbye letters and figuring out their last wishes.

Taking care of yourself as well

Devoting a considerable amount of time and energy to someone who’s nearing the end of their life is no small feat, and Schlader said caregivers should acknowledge the intense emotions that come with the effort. “Guilt is normal, and most caregivers are going to feel guilty if they take a break,” she said.

But, she added, you have to take care of yourself if you want to be helpful to your loved one. “You’re not failing that person,” she said. “You are recharging your battery.”

Complete Article ↪HERE↩!