‘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 muchyou 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!

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!

Studying how Americans die may improve end-of-life care

By Chrissy Sexton

Researchers from Rutgers Health have analyzed millions of Medicare records, uncovering vital insights into the end-of-life care trajectories of older Americans.

“Older adults may require help managing their chronic conditions, taking medications, or performing personal care activities, such as eating, bathing, and dressing,” wrote the study authors.

“The ability of patients, caregivers, and communities to support aging in place is impacted by advanced illness and the presence of multiple chronic conditions, including Alzheimer’s disease and other dementias.”

Improving end-of-life care

The study presents a novel approach to improving end-of-life care by mapping out the distinct paths followed by individuals in their final years.

“Identifying which paths people actually take is a necessary precursor to identifying which factors send different people down different paths and designing interventions that send more people down whatever path is right for them,” said study co-author Olga Jarrín.

Focus of the study

The research team evaluated the final three years of clinical records from a randomly selected group of Medicare beneficiaries who died in 2018.

The analysis focused on the amount and location of personal care each patient received, leading to the identification of three major care clusters: home, skilled home care, and institutional care.

Key findings

The researchers found that 59 percent of patients predominantly spent their last three years at home, relying on assistance from friends and family for daily tasks, with professional care being minimal until their final year.

Another 27 percent of patients were part of the “skilled home care” cluster, where nurses and other skilled professionals supplemented the care provided by family and friends within the patient’s home.

The remaining 14 percent fell into the “institutional care” cluster, spending most of their last years in hospitals or nursing homes, where they received comprehensive professional care.

Additional insights

The researchers used a group-based trajectory modeling approach to correlate these care trajectories with sociodemographic and health-related metrics. They found notable differences among the clusters, with patients in the skilled home care and institutional care clusters more likely to be female, enrolled in Medicaid, or suffering from dementia.

Geographic variations were also evident, with extensive use of skilled home care more prevalent in Southern states and institutional care more common in the Midwest.

Broader implications

Haiqun Lin, lead author of the study and a professor of Biostatistics at Rutgers, highlighted the broader implications of the findings.

“Our study not only identifies different patterns of care but also sheds light on the clinical and policy factors that dictate where and when patients receive care,” said Lin.

“Understanding these patterns is crucial for advance care planning, and ultimately, for achieving the triple aim of improving care experiences, reducing care costs, and improving care quality.”

Supportive interventions

The research lays the foundation for future studies aimed at identifying key factors that influence individual end-of-life care paths and developing interventions to support people in following their preferred trajectory.

“Most people want to stay at home with minimal professional help,” said Jarrín. “However, the goal for a significant minority of people is to avoid being a burden to family and friends, and such people tend to want professional care.”

“Our goal isn’t forcing people toward any particular type of care. It’s helping them to plan for and get the care that’s right for them.”

The study is published in the journal BMC Geriatrics.

Complete Article HERE!

‘My life will be short. So on the days I can, I really live’

— 30 dying people explain what really matters

Mari Isdale: ‘The laundry pile will wait.’

Facing death, these people found a clarity about how to live

By

‘I don’t sweat the small stuff any more’

Mari Isdale, 40, Greater Manchester, England

In 2015, Isdale, then 31, was diagnosed with stage four bowel cancer and given 18 months to live. Despite a period of remission and 170 rounds of chemotherapy, the disease has since spread to her lymph nodes.

I always thought, “I’ll get my career sorted, then we’ll get married, have children, go travelling.” And then cancer happened. You grieve for your future self. Your imagined children and your career. If I died tomorrow, what I’d be saying on my deathbed is I regret not spending enough time with my family. So that’s what I focus on.

I have a “Yolo list” of things I want to experience in life and my husband and family work very hard to ensure we do as many of them as possible together. They’ve taken me snorkelling in the Maldives, hot-air ballooning over Cappadocia and snowmobiling in Iceland. We’ve stayed in a cave hotel, seen the pyramids, the Colosseum, and flown in a helicopter over New York. We’ve hand-fed tigers, taken the Rocky Mountaineer train, been paragliding and seen the tulip fields of Holland.

My life is most likely going to be short, so on my good days, when I’m well enough, I really live. I go out and do anything I want: for a nice meal, to the theatre, cinema or an escape room.

My illness has changed the way I prioritise things. Although I loved my career as a doctor, it often meant long hours, missing out on Christmases and birthdays, exams, stress. Giving that up is a big sacrifice, but it’s one I’m willing to make to gain more time with my loved ones. It is ironic that it took being told I was dying before I really started living.

Anything that doesn’t make my heart sing is less important to me these days. I don’t sweat the small stuff any more. Life is too short for cleaning. The laundry pile will wait. And if I want to eat a piece of cake, I damn well do.


‘Don’t waste energy fighting’

Michèle Bowley, 57, Basel-Stadt, Switzerland

After Bowley found a lump in her armpit in summer 2020, a biopsy revealed breast cancer. The disease spread to her lungs, liver and bones, and in late 2021 she was given a prognosis of three to six months.

Accept yourself and your situation. Don’t waste energy fighting. The most important things in life are other people. Pay attention to your needs and do what makes you happy. Do something creative, learn something new, get involved in something that matters to you. Enjoy your life to the last breath.

I have no regrets. I’ve always done what was important to me and have reached my full potential regardless of what others expected or thought of me. I’ve had a fulfilled life; I’m ready to go.


‘Having a sense of purpose brings joy’

Mark Edmondson, 41, Sussex, England

Mark Edmondson, who is living with cancer, sitting on a sofa with one son; the other son and a dog on the floor in front of them
Mark Edmondson: ‘I’ve never been happier.’

In 2017, Edmondson was diagnosed with colon cancer. After doctors also discovered more than 30 tumours in his liver, he was given a year to live. He has since undergone more than 140 rounds of chemotherapy and over 30 operations.

Prior to getting cancer, I had ambitions of becoming a managing director or CEO; I wanted to achieve something in my career. Within hours of the diagnosis, that disappeared. I don’t care for work any more, but I believe strongly in having a sense of purpose, something to motivate and distract you, and bring joy and satisfaction. I get that from the business I started: a support service for anyone facing adversity. If someone had said, two years into my treatment, “Do you feel able to support other people through their diagnosis?”, I would have said no way. But as time has passed I do, and I’ve spoken to more than 100 people. I love coaching and mentoring. I’ve never been happier.

I lead every session with this quote and loop back to it at the end: “It’s not what happens to us, but how we react that defines who we are.” So how do you want to be defined? Cancer or no cancer, that question should dictate how you live.

I’m a big believer in being as honest and open as possible. Men are notoriously bad at sharing our feelings, but I want to change that for my boys.

We get pushed along in this world by consumerism, but it doesn’t matter what car or house we have, as long as we’re comfortable. What really matters is love, relationships, kindness, caring for people, being around people. I want to create the best relationships I can, and live the happiest life I can, because I no longer know what my timeframe is.


‘It’s not about the quantity of time I’ve got, it’s the quality’

Chris Johnson, 44, Tyne and Wear, England

In 2019, Johnson was diagnosed with a rare gastrointestinal cancer. In 2020, hundreds of small tumours found on his liver led to a prognosis of two to five years.

I’ve got limited time, so I’d rather be doing things with family and friends, and having a positive impact on the world around me. I’m not in the office wearing a shirt and tie any more. In 2021 I was running marathons, and last year I completed the National Three Peaks Challenge.

Fundraising has been the main driver but exercise also helps with the side-effects of my treatment, though as that progresses, it’s becoming harder to do long distances.

I still care about politics, the climate and my football team, but I don’t get stressed about them any more. It’s not about the quantity of time I’ve got it, it’s the quality.

People talk about beating cancer or winning. I’m never going to beat cancer, it’s not an option. At some point it will kill me. But until then, how I live my life is my version of winning.


‘Cancer sorts out what really matters’

Siobhan O’Sullivan, 49, New South Wales, Australia

After feeling unwell for two weeks, O’Sullivan was diagnosed with ovarian cancer in August 2020. It had already spread beyond her ovaries, and did not respond to chemotherapy.

I have a lot of colleagues and friends around the world, and people have mailed me gifts from every corner of the globe. An English friend flew out to see me for three days; he spent longer in the air than with me. This is the kind of generosity of spirit that people have shown me and it’s been very moving.

Cancer has been extremely effective in sorting out what really matters and what doesn’t. I was always a very busy person, and if I was meeting someone for lunch at 1pm and they strolled in at 1.20, I might have been irritated. Now I’ve realised none of that matters. I would love to have had this insight and these connections without having to go through this cancer bullshit. But I don’t think there’s a shortcut to it.

Siobhan O’Sullivan died on 17 June 2023.


‘Sharing your feelings helps’

Harry Soko, 59, Salima, Malawi

Harry Soko, who is living with cancer, sitting on a wooden bench in front of bushes, in Salima, Malawi
Harry Soko: ‘When I’m alone, I wonder why I got it.’

In July 2020 Soko noticed a pain in his right thigh. A year later he was diagnosed with skin cancer, which will significantly shorten his life: a 2014 study at the care centre where he is being treated found only 5% of patients with the condition live more than five years.

Normally we say, “If you are suffering from cancer, the immediate result is death.” So my family accepted it. The community accepted it. When I’m alone or sleeping, it comes to me: “Why am I suffering from cancer? How did I get it?” It takes time to accept. But if you share your feelings with others, you become free. You have no worries.


‘My illness stripped me of my fears’

Juan Reyes, 56, Texas, US

Reyes was diagnosed with ALS in 2015; he’d had symptoms for two years, and the average survival time is three. In the next six months he became a wheelchair user; he has since lost the use of his hands.

I’m very much an introvert, quiet and reserved, and afraid of public speaking. Having to live with ALS has stripped me of many of my fears. I’ve always had a very silly streak with close friends and family, and now I use that as a power, to entertain and educate through comedy.

The first time I did standup was in October 2019, at a fundraiser for ALS I’d organised at a local comedy club. I didn’t intend to do it, but as I was opening the evening, I took a chance. Afterwards I felt incredibly alive.

I also went skydiving six months after diagnosis. The first step out of the aircraft took my breath away. The rush of air was deafening, then I was suspended above the landscape. The serene silence, interrupted by the rustling of the canopy, was life-altering. I’m so glad I experienced this. I’m dying, so what is there to fear?


‘Stop worrying about having a good job or needing a big house’

Caroline Richards, 44, Bridgend, Wales

Her son was 16 months old when, in 2014, a swelling in Richards’s stomach was diagnosed as bowel cancer. She was told that, with successful chemotherapy, she would probably live for two years.

These past nine years have been really good, probably better than if I hadn’t had cancer. Different things became a priority: spending time together rather than worrying about having a good job or thinking you need a big house.

In a way I feel lucky – I could have died when my son was three or four. I feel as if I’m living on borrowed time. But he knows me. He’ll remember me.


‘Find gratitude’

Tyra Wilkinson, 50, Ontario, Canada

A family history of breast cancer meant that when Wilkinson was diagnosed with the disease in 2015, she had already made plans for a mastectomy. Seven years later, the cancer had returned and spread to her spine, making it incurable.

My husband and I had plans for when our kids were grown. We have always said we’d be the most fit grandparents, playing with our grandkids on the ground. Even if I’m alive I won’t be able to be that grandparent, because I’m just not capable of doing that stuff now.

Find the gratitude for what you have because it can always – and will always – get worse. Be grateful for all the things that are going your way right now.


‘Go to the parties. Stay out late’

Amanda Nicole Tam, 23, Quebec, Canada

Head shot of Amanda Tam, who is living with cancer, on pink sofa
Amanda Tam: ‘Don’t hold back.’

After noticing symptoms in January 2021, Tam was diagnosed with amyotrophic lateral sclerosis (ALS) that October five days before her 21st birthday.

I wish I had gone out more with my friends. I wish I had gone to parties and stayed out late. Living life free-spirited is something I feel I missed out on, and I regret that I didn’t take advantage of that when I was younger. Life is short and you should live it how you want, regardless of what people think. Don’t hold back. Say what you want to say and do what you want to do.


‘Have a goal. Don’t accept defeat’

Mark Hughes, 62, Essex, England

More than 20 years ago, pneumonia led to the discovery of a tumour in Hughes’s lung. Surgery was successful, but the cancer had spread to his lymph nodes. In 2010, a rare form of the disease, which is now terminal, was found in his bones.

It’s about having a goal, a purpose, setting your sights somewhere. I won’t be beaten down or accept defeat. The only way is forward, and there’s always a finishing post I’m aiming for. If you get knocked down, get back up, brush yourself down and go again. That’s what keeps me going.


‘You are enough; you make a difference’

Chanel Hobbs, 53, Virginia, US

At 37, Hobbs found herself unable to run without falling; she was diagnosed with ALS and given a life expectancy of up to five years. She is now dependent on a ventilator and feeding tube.

Before my diagnosis, I was very independent. I prided myself on doing things on my own. But I’ve learned that others really want to assist, and it brings them joy knowing they can make a difference, however small.

I always used to plan every single facet of my life. I wish I had been more spontaneous and done things when they crossed my mind. For example, looking out the window and wanting to go for a walk, but doing housework instead. How I yearn for a walk today. Now I give myself grace. I have learned not to compare myself with others. Find what makes you feel meaningful. Remember: you are enough, you are human, and you make a difference.


‘No matter how you feel, get up, get dressed and get out’

Simon Penwright, 52, Buckinghamshire, England

In the early hours of 24 January 2023, Penwright was woken by an unpleasant taste and smell. Doctors discovered three brain tumours, one covering half of his brain. He was diagnosed with an aggressive form of glioblastoma and given less than 12 months to live.

It would be so easy to wake up in the morning and just lie in bed. I’m not a gym person, but when I’ve done a bit of exercise, I feel fantastic. No matter how you feel, get up, get dressed and get out.

If you’re OK one minute, then have a cardiac arrest and you’re gone the next, your options are taken away. So I guess I’m grateful that I can get organised and make the most of my relationships. I’d take this route every time.


‘I’ve stopped caring what others think’

Sukhy Bahia, 39, London, England

Sukhy Bahia, who is living with cancer, sitting on a bed, in yellow top
Sukhy Bahia: ‘I want my kids to know milestones are bullshit.’

Diagnosed with primary breast cancer in 2019, Bahia was given the all-clear by her oncologist in March 2022. Five months later, she discovered the disease had spread to her bones and her liver.

I’m a single mum. It’s heartbreaking because you think you’ll be around for your kids for a really long time. My daughter is nine and my son is six, and I’m completely transparent with them about my health. I’m hoping to leave things for when I’m not here – birthday, graduation, wedding, new home, new baby cards, and a cookbook of all their favourite recipes. I’m also planning video blogs, giving advice on things they may not be comfortable asking anyone else, like consent and puberty.

I want them to know that they never have to impress anyone or try to fit in, and that milestones are bullshit. Nothing needs to be done by a certain age or time; you can always change what you want to do in life.

I’ve stopped caring what other people think of me. From my teens, I always wanted a full sleeve tattoo. Last year I decided to start one with the birth flowers of my children, to show how much they mean to me.

My kids love them; my parents aren’t over the moon, but they accept there are worse things I could be doing with my life.


‘Never create a new regret’

Kevin Webber, 58, Surrey, England

On holiday in 2014, Webber noticed he was visiting the bathroom a lot. Soon after he was diagnosed with prostate cancer and given four years to live.

I don’t have many regrets. Maybe I wish I’d taken my kids to school more. When they grow up, you realise that meeting you had at work, you could have probably moved it back an hour.

In that moment, when you know it’s over, I don’t want to look back with any remorse. You can’t change yesterday. Never creating a new regret is an important way to live your life.

I have three missions every day. Enjoy myself, but never at the expense of someone else. Try to do some good – and that doesn’t have to be raising 10 grand for charity; it can be smiling or giving someone a seat on the bus. And make the best memories, not just for you on your deathbed, so you can lie there and go, “Oh, that was great when I did that”, but for everyone else.


‘I realised what I really wanted to do’

Sophie Umhofer, 42, Warwickshire, England

In 2018, after 10 months of tests for conditions such as IBS and Crohn’s disease, Umhofer was diagnosed with bowel cancer, which had spread to other parts of her body. She was told she could live for three more years.

Initially I felt as if I had to cram the rest of my life into the couple of years I’d been given. I’ve written birthday cards and letters for my kids until they’re 21, preparing them for me not being here.

Obviously I wish it hadn’t been cancer that caused this, but I’ve changed so many things about myself. Before my diagnosis I would get very stressed out. I had this perfectionism when my kids were young that they had to have routines. I spent so much time being worried about things I didn’t need to do. And once I became a mum, I sort of gave up what I wanted to do.

I regret that I didn’t take action for myself a bit more. But this diagnosis meant that all of a sudden, I realised what I really wanted to do. When I was going through chemo I was trying to find things I could do to keep myself entertained, and I started watching motorsport. When I got a bit better I actually entered a competition and got through to the finals. I ended up getting a job in motorsport and now work full-time looking after a team. I wish everybody could see how much better life can be if we change the way we think.


‘Leave the damn house’

Arabella Proffer, 45, Ohio, US

Arabella Proffer, who is living with cancer, sitting in ana orange chair in front of a bookshelf and a wall full of portraits
Arabella Proffer: ‘You never know what’s going to happen.’

In 2010, Proffer was diagnosed with myxoid sarcoma. Ten years later, the rare form of cancer was found to have spread to her spine, lungs, kidney and abdomen. Told to get her affairs in order, she now plans her life two months at a time.

A year before I was first diagnosed, my husband had joked, “Hey, why don’t we cash out our retirement and follow Motörhead and the Damned on tour through Europe?” When I got the diagnosis, I thought, “We should have done that.”

My mantra is to leave the damn house, because you never know what’s going to happen if you do. No interesting story ever started with, “I went to bed at 9pm on a Tuesday.”


‘Just buy it. Do it. Go and get it’

James Smith, 39, Hampshire, England

In 2019, Smith noticed a twitch, then a weakness in his left arm. Two years later he was diagnosed with motor neurone disease (MND).

When I was told I’ve probably got only a few years to live, my wife was pregnant with our youngest. In the back of your mind you’re thinking, “Am I going to see them get married? Have kids?”

I did turn to alcohol, but it wasn’t doing me any favours; I was using it to block out what I didn’t want to think about, so I nipped it in the bud. Now I’ve come to terms with what I’ve got and I just take every day as it comes. I focus on what I can do, not what I can’t do. I had to give up my career as a barber, but I’ve found a new passion in creating my podcast, which shares my story and those of others to raise awareness of MND. Talking to others and relating to people going through the same situations as me is like therapy.

It’s horrible to say it takes a terminal illness to actually live life, but when I hear people going, “I’d love to do that”, I realise getting diagnosed has put a different perspective on life. I used to think, “I won’t buy that because I don’t know what’s around the corner.” Now it’s just buy it, just do it. If you want something and can afford it, go and get it. If you want to do something and you’ve got the means, go and do it.


‘I soon realised what I liked about life’

Ali Travis, 34, London, England

At 32, Travis began experiencing severe headaches. After an MRI revealed a mass the size of an orange on his brain, he was told he had a glioblastoma and his life expectancy was 12 to 14 months.

Last year was the best year I’ve had because in a very, very short space of time, I realised what I liked about life. It’s the closeness of relationships, old friendships. And, for me, being a geek.

If I’d been hit by a bus, I’d have been a stressed guy with a load of problems who couldn’t see past the end of his nose. So, despite all the surgeries, the constant chemotherapy, the radiotherapy, I would choose this route.


‘Look after yourself first’

Sonja Crosby, 55, Ontario, Canada

Sonja Crosby, who is living with cancer, sitting in a garden in Ottawa, Canada
Sonja Crosby: ‘Cancer focused me.’

In 2012, doctors discovered a tumour on Crosby’s left kidney. She was diagnosed with a rare form of cancer, and most organs were removed from her left side. In 2017 she was given six months to live.

Cancer focused me more precisely than anything else I can think of. When my doctor told me I had a few months left, I said, “Can we put that off another six months? I have this big project at work I want to finish.” He said, “No, you have to be your priority now, not work.”

You can’t manage all aspects of your life. I’ve realised it’s not selfish to look after yourself first, that your friends and family will do a lot more if they know you’re open to receiving help.


‘My favourite saying is: it is what it is’

Rob Jones, 69, Merseyside, England

In October 2012, Jones was told he had bowel cancer that had spread to his liver. He had 27 rounds of chemotherapy.

I’m not a bucket list person; I don’t go through life saying, “I wish I’d done that.” My wife says I’m one of the worst people in the world to buy anything for, because if I want it, I get it. It’s the same in life, if we can afford it. But I’ve never had dreams of doing a world cruise or a flight to America. I’m a home bird really.

I read once that cancer victims are lucky in life, because they generally have a timeframe of when they’re going to die. They can put their life in order, say goodbye to loved ones, ignore all the people they’ve tolerated to be polite. Whereas people who have a massive heart attack and die on the spot, they don’t have that opportunity. I sort of get that now. But I’m not allowed to talk as if the end of the world is nigh, because everybody thinks I’m invincible. Of course, none of us are.

My favourite saying is: it is what it is. If we had the choice, we’d all live a long, happy life. But when would we choose to die? There isn’t a convenient time.

Rob Jones died on 28 July 2023.


‘What’s the point of earning, earning, earning, if there’s no joy in your life?’

Jules Fielder, 39, East Sussex, England

In November 2021, Fielder was diagnosed with double lung cancer, then shortly after told the disease had spread to her spine and both sides of her pelvis.

You get caught up in that world of work: pay your bills, eat dinner, sleep, repeat. But now I truly feel very different about money. What’s the point of earning, earning, earning if there’s no joy in your life? When I watch really power-driven people who want more and more, I want to tell them it’s the small things in life that are beautiful. We live in quite a toxic world, but it’s your choice what you expose yourself to. Iget up, I walk my dog, I listen to every single bird that chirps. I’m grateful for that.


‘Be authentically you’

Mike Sumner, 40, Yorkshire, England

Head shot. of Mike Sumner, who is living with cancer, in white shirt, sitting on a sofa
Mike Sumner: ‘There are always positives.’

While on TV show First Dates in March 2020, Sumner noticed a loss of movement in his foot. Eight months later he was diagnosed with motor neurone disease. He has since married his date, Zoe.

I don’t waste time now. Life is too short to be doing any shit you don’t want to. Concentrate on making the memories you want and never say no, never make excuses. Do things you’ve always wanted to do. We went to Los Angeles to see the Back to the Future set at Universal Studios. I’ve been meaning to go for years. It was our little pilgrimage.

In the short term I keep positive by thinking about weekends, because we often go away and do something fun – next weekend we are going to a classic car show. In the longer term, I look forward to our next holiday – we always go to Orlando. When I feel the warm air on my skin, and hear the crickets of an evening, it lifts me emotionally.

Day-to-day I look forward to Zoe coming home from work so I can give her a cuddle. I look at my model car collection and think about the happy memories I have of driving. When I feel a bit low, I treat myself to something nice to eat – pizza, a burger or a battered haddock – while I can still enjoy food.

You have to be authentically you. But try not to moan because there’s always someone worse off than you. Focus on the positives; there are always some. For example, I’m married to Zoe.


‘Keep things simple’

Alec Steele, 82, Angus, Scotland

In 2020, while in hospital for a routine checkup, Steele collapsed. Tests revealed idiopathic pulmonary fibrosis – which causes scarring on the lungs and leads to difficulty breathing – and he was given a prognosis of one to five years. He now requires a 24-hour oxygen supply.

The first six months after diagnosis were dreadful. I was trying to get all my affairs in order, and I told my medical team I was determined to have one last game of cricket. The physiotherapist and I worked as hard as we could, and in late April 2021 I got my game, wicketkeeping with oxygen strapped to my back. A photographer took a photo and put it on the internet. It is now displayed at the Oval, next to Ben Stokes’s photo. Last year I had 16 games, which has just been wonderful.

I’ve realised I have to keep things as simple as possible. I soon learned that negative thoughts were destructive and I trained my mind to work out those you can do something about and those you can’t. If it’s the latter, discard them. If you can do something, work out what and get started to tackle the problem.


‘Switch every negative to a positive’

Kate Enell, 31, Merseyside, England

In July 2021, less than a month after finding a lump in her breast, Enell, then 28, was diagnosed with stage four breast cancer. It had spread to her liver and bones, and has since moved to her brain.

For two days after being diagnosed I locked myself in the bedroom; I didn’t see or speak to anyone. But on the third day I thought, “Wait – if I’ve only got a short timescale, do I really want my little boy to see me miserable?” Now I just try to do as much as I can while I’m here. I’m quite good at switching my brain now. Say I get upset about not being able to have more children, I switch it round and think, “Well, I am a mum.” Whenever there’s a negative, I try to switch it and keep positive.

I feel like I’ve had some of my best times in the first few years of my diagnosis, because it makes you home in on what’s important. Everybody around me has made more of an effort, we’ve done lots of family events. It’s made us realise that what’s important is spending quality time together.


‘Success, status, reputation – they are not important’

Ian Flatt, 58, Yorkshire, England

Ian Flatt, who is living with cancer, in his off-road wheelchair in a field
Ian Flatt: ‘What’s important is to find joy every day.’

Flatt had always led a very active life, but in April 2018 he began struggling with severe fatigue. By the following March he had been diagnosed with MND and he has since lost the use of his legs.

I can categorically say that the things I valued and felt were important are not important. Success, status, reputation – they pay the mortgage, but I think I lost myself a little bit in all that. I’m much more emotional and empathic now. I’ve always been a reasonably popular guy, I have friends that go back 30-odd years, but I’ve never had the depth of friendship that I have now. Or maybe I had it and didn’t appreciate it.

What’s important now, every day, is to find some joy. I look out at the birds, the trees – I’ve a favourite one I can see out of my bedroom window. Through being a bit reckless, I lost the use of my legs sooner than I would have. I remember accepting that and thinking, “OK, I’m not going to walk, so let’s go out in the tangerine dream machine [his off-road wheelchair].” We went out, had a pint of Guinness, and now my memory of that day is a joyful one.


‘Your energy is valuable’

Daniel Nicewonger, 55, Pennsylvania, US

In May 2016, after he started struggling to take a full breath, Nicewonger was told he had colon cancer that had spread to his liver. The prognosis was two years.

It took this to clarify what’s really important. You get very good at saying, “No, I choose not to invest energy and time in this, because my energy and my time is just that much more valuable.” If I could have understood that at 30, I’d have moved through life in a totally different way. But that’s unrealistic. Wisdom is wasted on the young.


‘Don’t mess around. Be direct’

Angus Pratt, 65, British Columbia, Canada

Angus Pratt, who is living with cancer, sitting on a rock
Angus Pratt: ‘I discovered self-confidence.’

A lump on Pratt’s chest in 2018 led to the discovery of breast and lung cancer. He was given a 5% chance of living to 2023.

I had my diagnosis in May, my wife was diagnosed with pancreatic cancer at the start of October, and by the middle of November she was dead. I had to ask myself the big question: am I leaving behind what I want to leave behind?

I’ve taken on writing assignments, helping scientists translate research into patient-friendly language. Recently I was asked to contribute a painting to an auction, and I was surprised people would pay for my art. One of my joys is a local poetry group that meets in the park. Sometimes we have an open mic. I guess I’m trying to say I’m a poet, too.

I’ve discovered self-confidence. I really don’t care what people think about me any more; it’s not important because I’m going to die. I don’t have time to mess around, so I’m going to be direct. That’s stood me in good stead.


‘I should have trusted myself more’

Henriette van den Broek, 63, Gelderland, the Netherlands

When Van den Brook was diagnosed with breast cancer in 2008, the disease had already spread to her lymph nodes. She was well for a number of years, but in 2020 she discovered that the cancer had spread to her stomach and was terminal.

Every day when I work as a nurse, it feels like a party for me. I realise how meaningful I can still be to other sick people. I enjoy the little things more, dare to have the difficult conversations.

It’s a pity I’m only finding that out now. I feel like I need to catch up on this in a hurry and get the most out of life. I’m discovering the things I’m good at, but I’d have liked to discover them sooner. I should have trusted myself a lot more and been less insecure. I only have the guts now.


‘Treat every smile like it’s your last’

Ricky Marques, 42, St Helier, Jersey

In summer 2022, Marques began to lose weight. In November, a CT scan led to a diagnosis of lung cancer. The disease, which has spread to his bones and lymph nodes, was so advanced that he was given a prognosis of weeks or months.

When I was younger I had a son, and when he was eight, he died in a car accident. My life collapsed and I thought, “How am I going to recover?” When I was diagnosed with terminal cancer I thought, “What else am I going to get? Didn’t I already have my share of bad luck? Don’t I deserve to live?”

The lesson I’ve learned is every time someone smiles at you – a little touch, a little gesture – look at it like it’s the last one because, guess what? Maybe it is.

Complete Article HERE!

Psychedelics gave terminal patients relief from their intense anxiety

— End-of-life cancer patients in a therapy group in Canada used psilocybin to reduce their fears. It helped some find peace.

Valorie Masuda, left, Gail Peekeekoot, center, and Barb Fehlau participate in a grounding ceremony for staff members at Roots to Thrive, a wellness center in Nanaimo, British Columbia, in August.

By Meryl Davids Landau

When Brian Meyer received a Stage 4 prostate cancer diagnosis three years ago at age 62, he was determined to make the most of his remaining years. He immediately retired from a decades-long career in the grocery business and took every opportunity to hike, camp and — his all-time favorite — fish for salmon. Brian and his wife, Cheryl, regularly visited their two grown children and three grandsons and spent time with their many friends.

But it was sometimes hard to keep his mind off his pain and the reality that life was nearing an end. “It tugs at the heart all the time,” Meyer, from Vancouver Island, British Columbia, said in August. A calm person by nature, he found his anxiety skyrocketing.

By November, though, despite a new, highly aggressive liver cancer that shrank his prognosis to months or weeks, Meyer felt calm much of the time. The prime reason: a 25-milligram dose of the psychedelic drug psilocybin he had taken several months earlier, due to a Canadian program being watched elsewhere for the emotional benefits it may offer people nearing death.

In mid-August, Meyer and nine other people with terminal cancers had gathered in two rooms, and there, lying on plush floor mats with blankets covering their bodies, their eyes covered by sleeping masks and music piped in over headphones, they swallowed the psilocybin capsules. The consciousness-altering drug, administered by the nonprofit Vancouver Island wellness center Roots to Thrive, set Meyer and the others on a six-hour journey of fantastical images and thoughts. The hope was that this “trip” would lead to lasting improvements in mood and lessen their angst around death. It was accompanied by weeks of Zoom group therapy sessions before and after, along with an in-person gathering the evening before for a medical clearance and the opportunity for participants and their spouses to meet in person.

Canadian health-care providers have been able to offer this otherwise illegal drug since 2022 when the country’s national health-care system began a special access program for certain patients with serious or life-threatening diseases. To date, 168 Canadians have been authorized to receive the drug under the program. Similar access is not available in the United States, because a terminal patient’s right to try experimental therapies excludes psychedelics, which are banned by the Controlled Substances Act. Oregon and Colorado are in the early stages of allowing psilocybin-assisted psychotherapy due to ballot initiatives passed in the states, but people who receive the drug there could be charged with a crime under the federal law.

Clinical trials assessing psychedelics for various mental health concerns tend to administer them to patients individually. But Roots to Thrive prefers to do it in groups. “The group process in psychedelic-assisted therapy allows for a shared experience that helps people realize they are not alone in experiencing difficult emotions, symptoms or challenging life circumstances,” said Pam Kryskow, the center’s medical director.

By the time Meyer swallowed the psilocybin capsule, he felt comfortable with his cohort. Some, like Christine “Cat” Parlee, 53, who has Stage 4 melanoma that has spread to her lungs and throat, had become friends. At a restaurant where Parlee, her husband, Cory, and Cheryl gathered before the in-person meeting, Brian and Cat shared their hope that the drug experience would be joyful and that it would subsequently enhance their peace of mind.

The day after taking the psychedelic, however, sprawled on a couch in the resort room Brian and Cheryl had rented for the week, Meyer couldn’t conceal his disappointment. Although he didn’t have a negative trip, two of the other participants were overwhelmed by the drug’s intense effects and spent the hours yelling for it to stop. This repeatedly pulled Meyer away from the intriguing images filling his mind, including sword-fighting in a medieval castle yard and cooking elaborate meals of lobster and lamb in a massive industrial kitchen.

His mental journey was also interrupted by having to urinate regularly, a symptom of his prostate cancer, although he was struck by the intense spiritual connection he felt with one of the facilitators, registered nurse Gail Peekeekoot, as she touched his hands to guide him to the restroom. “It was like she was me, I was her. We were one together,” he marveled.

Psychedelic journeys don’t always proceed as people anticipate, leaving some feeling dissatisfied immediately after, said Barb Fehlau, a palliative care practitioner on Vancouver Island and the medical facilitator in the room, who herself has pancreatic cancer. Regardless of the experience while the drug is active, though, psychological healing often follows, she said.

That was the case for Meyer. In addition to his enhanced calmness, he remarked in November that taking the drug seemed to have deepened the connection he felt toward the friends and family who had streamed into his and Cheryl’s home following his worsened prognosis. “I have a way more sensitive outlook. I feel more love toward people,” Brian relayed at the time. Three weeks later, in a hospital surrounded by more than a dozen family members, Brian died. “He remained calm, peaceful and joyful” to the end, Cheryl said.

Should psychedelics ever be legalized as medicine — the first, methylenedioxy-methamphetamine, or MDMA, to treat post-traumatic stress disorder was submitted to the U.S. Food and Drug Administration in December by the MAPS Public Benefit Corporation (now called Lykos Therapeutics) — people who might benefit most are those who have a terminal diagnosis, said Anthony Bossis, a clinical assistant professor of psychiatry at New York University.

Psychedelics do not alter the course of the person’s disease, but they can help make the remaining time more meaningful, Bossis said. He is co-author of a 2016 study of 29 cancer patients that found that a single dose of psilocybin significantly reduced depression and anxiety and “led to decreases in cancer-related demoralization and hopelessness, improved spiritual wellbeing, and increased quality of life,” the study reported.

Feeling a sense of connection to something larger than themselves, akin to what Meyer experienced with Peekeekoot, may be especially important, the study found. “After this experience, people often say, ‘I realized I’m not just my cancer. I’m not just this body. I’m something more enduring.’ This is a real gift,” Bossis said.

How psychedelics might change a person’s outlook is under investigation. One study with mice this past summer by Johns Hopkins University researchers found that the drugs reopen “critical learning periods” in the brain for months after their use. Mice studies don’t translate exactly to humans, but this finding suggests that psychedelics may cause people to be especially receptive to new ideas and ways of being.

Still, the research on psilocybin for those at the end of their lives is in the early stage, and whether the drug might prove harmful for some isn’t yet known. Roots to Thrive’s unpublished research surveying 20 people from its prior three psilocybin group sessions found many felt more positive, peaceful, lighter and less stressed. But four felt little to no change.

Cat Parlee, who participated with Meyer in the August session, had taken psilocybin two prior times at Roots to Thrive in the previous 18 months. While some people experience lasting transformation after taking the drug once, Parlee found that after six months her fears and anxiety would return.

Reclining on a comfortable hammock chair on their home’s back patio the day after Parlee’s August session, her husband, Cory, says the two have come to view the psyche as if it were a cookie with pieces bitten off around the edges. “The psychedelics help Cat find the missing pieces that make her more whole,” Cory reflected. “Psychedelics help you answer questions you may not know or give yourself permission to ask.”

Cat Parlee agreed. “Every time I’ve walked out of psychedelic medicine session, I feel like I’ve left weight behind — weight I’ve consciously decided I’m not going to carry anymore,” she said. This included the negative emotions she had felt toward her deceased mother and the people who badgered her to try the cancer “cures” they read about online. “A lot of energy was wasted on a lot of anger, a lot of sadness and a lot of guilt. I realized I don’t have time to waste on that anymore,” she said.

While many people might benefit from addressing psychological issues that impede their lives, the urge to confront such demons often intensifies when a person is given a few months or years to live, according to Shannon Dames, the founder of Roots to Thrive. Most of us operate under the illusion that we have time to change these things, Dames said. “When you’re at a place when you don’t have that perception of time, there’s a calling that’s really potent.”

About a month before his death, Meyer credited the psychedelic with reducing the discomfort he felt about dying. “I don’t want to say I’m excited, but I am very curious now,” he said. He realized the mushrooms had taken him to an unknown, altered world; death would do the same.

In Parlee’s case, her fear “was that there is nothing — just emptiness — after you’re dead.” During her second psilocybin trip, she watched herself swim in brightly lit, vivid waters amid an intense feeling of love. She was soothed by the sense that experience may be similar to the afterlife.

Since her August session, Parlee has also increasingly found pleasure in standing up for her needs, rather than always worrying about other people as she had previously done. “There’s one thing I want to do before I leave this world: It’s to know that I spent my last few years happy. One thing I can say right now is I don’t have any real regrets,” she said.

Then she took a deep breath and smiled. “I don’t know if I would have ever gotten to that place without this psilocybin journey.”

Complete Article HERE!

‘Financial Ruin Is Baked Into the System’

— Readers on the Costs of Long-Term Care

Readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for systematically depleting the financial resources of older people.

Thousands of people shared their experiences and related to the financial drain on families portrayed in the Dying Broke series.

By Jordan Rau and Reed Abelson

Thousands of readers reacted to the articles in the Dying Broke series about the financial burden of long-term care in the United States. They offered their assessments for the government and market failures that have drained the lifetime savings of so many American families. And some offered possible solutions.

In more than 4,200 comments, readers of all ages shared their struggles in caring for spouses, older parents and grandparents. They expressed their own anxieties about getting older and needing help to stay at home or in institutions like nursing homes or assisted-living facilities.

Many suggested changes to U.S. policy, like expanding the government’s payments for care and allowing more immigrants to stay in the country to help meet the demand for workers. Some even said they would rather end their lives than become a financial burden to their children.

Many readers blamed the predominantly for-profit nature of American medicine and the long-term care industry for depleting the financial resources of older people, leaving the federal-state Medicaid programs to take care of them once they were destitute.

“It is incorrect to say the money isn’t there to pay for elder care,” Jim Castrone, 72, a retired financial controller from Placitas, N.M., commented. “It’s there, in the form of profits that accrue to the owners of these facilities.”

“It is a system of wealth transference from the middle class and the poor to the owners of for-profit medical care, including hospitals and the long-term care facilities outlined in this article, underwritten by the government,” he added.

But other readers pointed to insurance policies that, despite limitations, had helped them pay for services. And some relayed their concerns that Americans were not saving enough and were unprepared to take care of themselves as they aged.

“It was a long, lonely job, a sad job, an uphill climb.”
Marsha Moyer

What other nations provide

Other countries’ treatment of their older citizens was repeatedly mentioned. Readers contrasted the care they observed older people receiving in foreign countries with the treatment in the United States, which spends less on long-term care as a portion of its gross domestic product than do most wealthy nations.

Marsha Moyer, 75, a retired teaching assistant from Memphis, said she spent 12 years as a caregiver for her parents in San Diego County and another six for her husband. While they had advantages many don’t, Ms. Moyer said, “it was a long, lonely job, a sad job, an uphill climb.”

In contrast, her sister-in-law’s mother lived to 103 in a “fully funded, lovely elder care home” in Denmark during her last five years. “My sister-in-law didn’t have to choose between her own life, her career and helping her healthy but very old mother,” Ms. Moyer said. “She could have both. I had to choose.”

Birgit Rosenberg, 58, a software developer from Southampton, Pa., said her mother had end-stage dementia and had been in a nursing home in Germany for more than two years. “The cost for her absolutely excellent care in a cheerful, clean facility is her pittance of Social Security, about $180 a month,” she said. “A friend recently had to put her mother into a nursing home here in the U.S. Twice, when visiting, she has found her mother on the floor in her room, where she had been for who knows how long.”

A portrait of Birgit Rosenberg, who wears a knit red sweater and sits on a chair facing the camera and looking directly at the viewer, with bushes and trees outside the window behind her.
Birgit Rosenberg, 58, of Southampton, Pa.

Brad and Carol Burns moved from Fort Worth, Texas, in 2019 to Chapala, Jalisco, in Mexico, dumping their $650 a month long-term care policy because care is so much more affordable south of the border. Mr. Burns, 63, a retired pharmaceutical researcher, said his mother lived just a few miles away in a memory care facility that costs $2,050 a month, which she can afford with her Social Security payments and an annuity. She is receiving “amazing” care, he said.

“As a reminder, most people in Mexico cannot afford the care we find affordable and that makes me sad,” he said. “But their care for us is amazing, all health care, here, actually. At her home, my mom, they address her as Mom or Barbarita, little Barbara.”

Insurance policies debated

Many, many readers said they could relate to problems with long-term care insurance policies, and their soaring costs. Some who hold such policies said they provided comfort for a possible worst-case scenario while others castigated insurers for making it difficult to access benefits.

“They really make you work for the money, and you’d better have someone available who can call them and work on the endless and ever-changing paperwork,” said Janet Blanding, 62, a technical writer from Fancy Gap, Va.

Derek Sippel, 47, a registered nurse from Naples, Fla., cited the $11,000 monthly cost of his mother’s nursing home care for dementia as the reason he bought a policy. He said he pays about $195 a month with a lifetime benefit of $350,000. “I may never need to use the benefit(s), but it makes me feel better knowing that I have it if I need it,” he wrote. He said he could not make that kind of money by investing on his own.

“It’s the risk you take with any kind of insurance,” he said. “I don’t want to be a burden on anyone.”

Pleas for more immigrant workers

One solution that readers proposed was to increase the number of immigrants allowed into the country to help address the chronic shortage of long-term care workers. Larry Cretan, 73, a retired bank executive from Woodside, Calif., said that over time, his parents had six caretakers who were immigrants. “There is no magic bullet,” he said, “but one obvious step — hello people — we need more immigrants! Who do you think does most of this work?”

Victoria Raab, 67, a retired copy editor from New York, said that many older Americans must use paid help because their grown children live far away. Her parents and some of their peers rely on immigrants from the Philippines and Eritrea, she said, “working loosely within the margins of labor regulations.”

“These exemplary populations should be able to fill caretaker roles transparently in exchange for citizenship because they are an obvious and invaluable asset to a difficult profession that lacks American workers of their skill and positive cultural attitudes toward the elderly,” Ms. Raab said.

“For too many, the answer is, ‘How can we hide assets and make the government pay?’”
Mark Dennen

Federal fixes sought

Others called for the federal government to create a comprehensive national long-term care system, as some other countries have. In the United States, federal and state programs that finance long-term care are mainly available only to the very poor. For middle-class families, sustained subsidies for home care, for example, are fairly nonexistent.

“I am a geriatric nurse practitioner in New York and have seen this story time and time again,” Sarah Romanelli, 31, said. “My patients are shocked when we review the options and its costs. Medicaid can’t be the only option to pay for long-term care. Congress needs to act to establish a better system for middle-class Americans to finance long-term care,” she said.

John Reeder, 76, a retired federal economist from Arlington, Va., called for a federal single-payer system “from birth to senior care in which we all pay and profit-making removed.”

A portrait of John Reeder, who gazes out a window he sits by in his home, wearing a blue sweater.
John Reeder, 76, at home in Arlington, Va.

Mark Dennen, 69, from West Harwich, Mass., said people should save more rather than expect taxpayers to bail them out. “For too many, the answer is, ‘How can we hide assets and make the government pay?’ That is just another way of saying, ‘How can I make somebody else pay my bills?’” he said, adding: “We don’t need the latest phone/car/clothes, but we will need long-term care. Choices.”
<h2″>Questioning life-prolonging procedures

A number of readers condemned the country’s medical culture for pushing expensive surgeries and other procedures that do little to improve the quality of people’s few remaining years.

Dr. Thomas Thuene, 60, a consultant in Roslindale, Mass., described how a friend’s mother who had heart failure was repeatedly sent from the elder care facility where she lived to the hospital and back, via ambulance. “There was no arguing with the care facility,” he said. “However, the moment all her money was gone, the facility gently nudged my friend to think of end-of-life care for his mother. It seems the financial ruin is baked into the system.”

Joan Chambers, 69, an architectural draftsperson from Southold, N.Y., said that during a hospitalization on a cardiac unit she observed many fellow patients “bedridden with empty eyes,” awaiting implants of stents and pacemakers.

“I don’t want to be a burden on anyone.”
Derek Sippel

“I realized then and there that we are not patients, we are commodities,” she said. “Most of us will die from heart failure. It will take courage for a family member to refuse a ‘simple’ procedure that will keep a loved one’s heart beating for a few more years but we have to stop this cruelty.

“We have to remember that even though we are grateful to our health care professionals, they are not our friends, they are our employees and we can say no.”

One physician, Dr. James D. Sullivan, 64, from Cataumet, Mass., said he planned to refuse hospitalization and other extraordinary measures if he suffered from dementia. “We spend billions of dollars, and a lot of heartache, treating demented people for pneumonia, urinary tract infections, cancers, things that are going to kill them sooner or later, for no meaningful benefit,” Dr. Sullivan said. “I would not want my son to spend his good years, and money, helping to maintain me alive if I don’t even know what’s going on,” he said.

Thoughts on assisted dying

Others went further, declaring they would rather arrange for their own deaths rather than suffer in greatly diminished capacity. “My long-term care plan is simple,” said Karen D. Clodfelter, 65, a library assistant from St. Louis. “When the money runs out I will take myself out of the picture.” Ms. Clodfelter said she helped care for her mother until her death at 101. “I’ve seen extreme old age,” she said, “and I’m not interested in going there.”

Some suggested that assisted dying should be a more widely available option in a country that takes such poor care of its elderly. Meridee Wendell, 76, from Sunnyvale, Calif., said: “If we can’t manage to provide assisted living to our fellow Americans, could we at least offer assisted dying? At least some of us would see it as a desirable solution.”

Complete Article HERE!

End-of-life doulas are changing conversation around death in Central Oregon

By Genevieve Reaume

We’re all going to die. While we don’t know when or how, the sun will set on each of our lives.

American culture struggles with this, in turn making the inevitable insufferable. This is where end-of-life doulas are breaking new ground.

Cheryl Adcox has been working as an end-of-life doula in Central Oregon since 2018. That’s when the registered nurse opened Hand-in-Hand End of Life Doula Services. For her, death is “sacred and it’s magical and it’s part of the mystery of life.”

It’s a view that few people understand. It’s one these death doulas understand intimately.

“Part of this is about normalizing conversations around death, dying, loss, grief,” Elizabeth Johnson, the Executive Director of the non-profit Peaceful Presence, said.

Johnson opened Peaceful Presence, which offers end-of-life doula care, in 2019. It was founded just before COVID-19 shut down the world, but thrived as the world began to see death more regularly through the pandemic.

What are end-0f-life doulas?

End-of-life doulas are caregivers who help people find peace with the circle of life. Most often, they work with people who are dying, along with their families. But they also help healthy people come to terms with life’s inevitable end.

Erin Walker is one of those people who was deeply impacted by death during the pandemic. Before this, she hadn’t had any real life-changing relationship with death.

“I hadn’t had anybody close to me die,” Walker explained.

When her husband, Hans, became gravely ill in 2021, shortly after the two welcomed their first daughter, Harper, she had to handle death head-on.

“He didn’t care about what people thought, in the best way,” Walker said, describing her husband.

Erin Walker
Erin Walker

Hans was diagnosed with stage-four liver cancer in the middle of a pandemic. An already challenging time was made nearly unbearable.

The two decided an end-of-life doula could help them navigate this foreign path. The decided to work with Peaceful Presence.

“An end-of-life doula is a non-medical companion to someone,” Johnson explained. “We do a lot of legacy work, life review work.

Doulas treat the family, not just the patient

For Johnson, the goal of a doula is to help families like Walker’s deal with death and all the logistics that come with dying. They treat the whole family unit, not just the patient, in a way that compliments medical care received in the hospital and hospice.

Walker said Hans was afraid of being alone as he got closer to death. Walker had to balance both being a wife and mom. Sometimes she couldn’t do it all, having to leave her husband in the hospital or hospice to take care of their daughter.

With Peaceful Presence, Hans didn’t have to be alone during these moments. As Walker explained, the doulas were “there to just be there, to just be that person in the room for when and if Hans woke up, to be present with him.”

Walker also got essential support.

“They’re there to hold your hand. They’re there to hug you when you’re crying. They’re there to get you tea,” Walker explained. “It was having people to call — not the friend, not the sister, not the people with baggage or their own relationships with Hans.”

In September of last year, Hans died. Memories of him sit on shelves and side tables throughout their Sisters home. His urn is below a pair of paintings the couple did together. His death still isn’t easy to talk about, but through the experience, she found a greater understanding of life.

“It can be a traumatic experience to have someone die, or it can be something that you can talk about and that you can share with others and that you can connect with them on,” Walker said.

That connection is catching on in Central Oregon.

“We actually have a lot of hospice and palliative care professionals who come and say, ‘I was in medical school. I learned a lot, but I didn’t learn, you know, some of these ways of just being with somebody during this end-of-life window,’” Johnson explained.

Johnson said when she joined the National End-of-Life Doula Alliance board pre-pandemic, they had about 250 members. She says that’s grown to more than 1,500. International End-of-Life Doula Association says it had a 36% increase in learners between 2021 and 2022.

Adcox has found, since starting Hand-in-Hand back in 2018, that people are more willing to have these death conversations.

“People are much more receptive to it now than when I first started,” Adcox explained.

Cheryl Adcox
Cheryl Adcox

Death Cafés come to Central Oregon

In 2018, in addition to starting the doula service, she began hosting Death Cafés. The practice, which originated in Europe, offers free, public meet-ups just to dish about death.

“We have people in their late seventies, early eighties. We have people in their early twenties,” Adcox said of the cafes. “It’s so beautiful that we can all sit in a circle and share this one commonality that we all have as human beings.”

The meet-ups happen about once a month, except during the summer when they are paused. They’re also now sponsored by Deschutes Public Library. Plus, with their popularity, Adcox has expanded the cafes beyond Bend to Redmond.  The next Death Café is on January 30. Adcox says this work is a part of a growing “death-positive movement.”

It’s a mission Peaceful Presence is also on. One way they help people of all ages and health do this is through their guidebook End Notes.

“What are all the life logistical things I might wanna have in place if I were to die tomorrow? What do people need to know about my life, right?” Johnson said, explaining End Notes. “Are there letters that you want to write? Are there things you want to communicate? Are there places where you need to ask forgiveness?”

Johnson also notes that the work is expanding across Oregon. Thanks to funding from three different foundations, Peaceful Presence is going to rural Oregon communities, not necessarily to establish more end-of-life doulas there but to embed the doula training into existing professions, helping people better handle death.

Elizabeth Johnson
Elizabeth Johnson

By May, Johnson says they’ll have trained 60 people in rural Oregon communities.

The death doulas, cafes and guidebooks — all changing the conversation around death in Central Oregon. Helping people, like Walker, change their perspective on dying.

“Do you feel like having worked with a doula that your perspective on death has changed?” I asked Walker.

“Yeah. I have a lot less fear, which I didn’t even know I was holding before,” Walker responded.

Complete Article HERE!