‘Pain renewed her resolve’

— How my mum tried to die on her own terms

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. ‘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.

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↩!

February 7, 2024February 6, 2024

Alzheimer’s: Watch for signs it’s time to start hospice care

By DANA TERRITO

When is someone with dementia ready for hospice care?

Considered to be the model of quality and compassionate care for individuals facing a serious or life-limited illness or injury, the concept of hospice care began in England in the 1950s.

A pioneering physician named Dame Cicely Saunders created the first modern hospice there in 1967. Hospice care focuses on caring, not curing, and in most cases, care is provided in the individual’s own home. Hospice care is also provided by self-supporting hospice centers, hospitals and nursing homes and other long-term care settings.

Hospice services are available to individuals of any age, religion, race or illness and is covered under Medicare, Medicaid and most private insurance plans, HMOs, and other managed care organizations.

The characteristics of dementia and Alzheimer’s disease are that they are life-altering and eventually fatal conditions for which curative therapies are not available. When someone reaches the stage of Alzheimer’s disease or other dementias in which everyday activities become too difficult for family caregivers to manage, and the symptoms become dramatically more pronounced, a doctor can refer the patient to a hospice provider for end-of-life care.

Some of the characteristics the affected individual may be exhibiting include the lack of ability to ambulate without assistance, incontinence of bowel and bladder, inability to dress and bathe properly, and speech limited to approximately a half dozen or fewer intelligible and different words. There are also intercurrent illnesses associated with advanced dementia in which hospice services would be a benefit. These include aspiration pneumonia, urinary tract infection, septicemia and impaired nutritional status. Hospice care is also available when co-morbid conditions significantly impair the affected individual’s health. These include congestive heart failure or cardiovascular disease, COPD, diabetes, renal insufficiency or malignancy.

Hospice services provide exceptional benefits for those with Alzheimer’s disease or other dementias. Each affected individual receives an individualized care plan, considering the individual’s condition and specific symptoms to determine what services are needed. Hospice provides durable medical equipment and medical supplies to assist family caregivers in managing the symptoms of their loved ones’ disease.

Additionally, hospice care workers can offer families recommendations for creating routines that help the individual feel more comfortable. A multidisciplinary team, including a medical director, oversees the individual’s care.

To begin hospice care, the family caregiver needs to obtain a physician referral. Hospice care is intended for individuals with a life expectancy of six months or less, so individuals with advanced dementia or Alzheimer’s must meet the criteria to qualify for care and receives a doctor’s referral. It can be difficult to assess when the end-of-life will occur since the disease progresses at different rates for everyone, so families need to begin the conversation with a doctor when the individual enters the later stages of the disease.

Most people use hospice care far too late. For more information about hospice care, reach out to the Hospice Foundation of America at hospicefoundation.org; the National Hospice and Palliative Care Organization at https://www.nhpco.org, or the Alzheimer’s Association at www.alz.org.

Complete Article ↪HERE↩!

February 6, 2024February 5, 2024

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.

February 5, 2024February 4, 2024

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↩!

February 5, 2024February 4, 2024

I Was Looking The Other Way When Death Surprised Me

— I didn’t see him coming.

By Christine Schoenwald

I’d heard about Pattie before I’d ever met hershe was a psychic.

My friend Lissa had done a one-woman show and had talked about her psychic. Since Lissa was the owner of a theater, soon, everyone was going to see Pattie, who wasn’t only a psychic but an empath.

I had to check out Pattie’s skills for myself and made an appointment. Pattie lived in the same town as me but on a cul de sac further up in the hills. It was remote enough that deer came into her garden and ate her flowers, but not so far that she didn’t get trick-or-treaters.

Walking into Pattie’s house as she requested, I felt strange, and I always knocked and called out when I entered. She usually had four or five cats sleeping in boxes scattered throughout her living room.

Pattie was seated at a table in a little room with a cat in her lap and a tumbler full of iced tea at her side. She was a large woman with vivid blue eyes and a warm smile.

She enjoyed her work and loved people, and she didn’t fear the spirit world as she often communicated with them.

My mother has been dying for months; I have a cat with a brain tumor and another cat who is getting up there in years. When any of them die, it won’t be a surprise. I’ll be as ready as one can be.

What I wasn’t ready for was the death of someone outside of those three.

But Death is a trickster and hates to be predictable. He refuses to operate on anyone else’s timetable and does what he pleases.

I found out as I was waiting for my mother to die that Death came along and took my friend, Pattie, to the hereafter.

When I heard from a mutual friend that Pattie was in the hospital — it didn’t sound especially serious.

She was in her seventies, had Multiple Sclerosis (MS), and had some health issues this past year, but Pattie was also the most positive person I know, and she was resilient. She’d gone into the hospital on a Thursday, and I fully expected her to be out by Monday, laughing about the experience.

After my initial consultation, I saw Pattie regularly for a few years.

I’d crack the both of us up with my opening questions, “What do you hear?”

What were the spirits telling her that I needed to know?

Besides her psychic abilities, Pattie could read people, and much of the time, it felt like she was reading me more than she was getting info from the great beyond.

I also encouraged her to use the tarot cards with me as I felt the cards gave structure to our sessions and gave the proceedings a gravitas. The tarot cards made me feel she was being guided, not making things up on the spot.

Eventually, I couldn’t rationalize paying a bunch of money to an unlicensed therapist, but we stayed friends.

We went to a couple of dinner theater productions, and out to eat (which was challenging after she had weight-loss surgery,) talked on the phone, and sent texts and cards.

She was immensely proud and supportive of my writing, and I shared my favorite stories with her. She was one of my supplemental mothers who loved me unconditionally and always remembered my birthday.

I said before that she was an upbeat person — someone who made the best out of a tough situation.

One time, Pattie fell down the escalator at Target. Rather than being embarrassed, she befriended the paramedics, asking their names, finding out their stories, and making them laugh as they loaded her onto a stretcher and into the ambulance.

I thought this time in the hospital would be another event, but it turned into a funny anecdote about how Pattie had charmed even the snottiest surgeon or caused all the nurses to fall in love with her.

“I don’t know if this is the right thing to do or say,” my friend Poppy said, “but Pattie is dead. She died in her sleep.”

Yes, Pattie died how I wanted my mother to go — peacefully and in her sleep.

Death had gotten his wires crossed, or maybe it was deliberate on his part.

Why now?

Pattie loved Christmas and would often decorate her house to maximum Christmasness. I sent her a Christmas card last week and wished her a happy and healthy New Year.

I’m not ready to mourn her — my grief has already been parceled out. I’m at full capacity, and yet, I do grieve because not grieving is the same as not being grateful for knowing her and having someone as kind and good as she was in my life.

How often have Lissa, Poppy, and I discussed arranging a group lunch date with Pattie? We always put it off for when we weren’t so busy or for other silly reasons.

We thought there’d be plenty of time to get together — we didn’t know Death was lurking nearby.

Pattie may be gone, but I’m not ready to say goodbye.

Complete Article ↪HERE↩!

February 4, 2024February 3, 2024

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.”

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February 3, 2024February 2, 2024

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.

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