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.

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!

Preparing to Meet Your Maker, Plus Cake

— The Life of a Death Cafe

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

by Steffie Nelson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Complete Article HERE!

How To Die Well

– Meet The Death Positive (Or Accepting) Practitioners

Have we lost the ability to die ‘well’?

By Tessa Dunthorne

Dead Uncertain: Why We’re Disconnected From Death

‘I was lucky, in a way,’ considers Dr Emma Clare. ‘I was brought up by my grandparents, so I always had that awareness that they were closer to the end of life than most people’s parental figures. We were also very immersed in nature, my grandad always outdoors in the Peak District, and bringing home dead wildlife to look at and appreciate. We especially liked birdwatching, and sometimes he’d find [dead] birds, like hawks, that you don’t often get to see up close – he’d call me outside, we’d have a look, and we’d be like, “wow, isn’t life amazing”.’

Emma is an end of life doula and has a PhD in death competency from the University of Derby. Not dissimilar to the doulas who stand alongside midwives for new mothers, she is one of the palliative and post-life care workers who step up in difficult times to hear the wishes of the dying, facilitate conversations for newly bereaved families, and provide a strand of support that the medical system cannot give. In short, she – and her peers – are the people who make death a bit more human – because, essentially, we’ve lost the ability to die well. And it’s come in no small part from our increasing disconnection from nature. 

In a recent episode of environmental journalist Rachel Donald’s podcast Planet: Critical, agroecologist Nikki Yoxall bemoans how we’ve begun to think of death in nature as a waste – as something we should try to fix. She argues that we’re increasingly ‘cleansed from decay’, a cycle within which all living things exist; that the invention of plastic itself can be credited with this alienation, as a material that defies that natural cycle with its foreverness.

dead tree
We’re experiencing a nature deficit, and this is impacting our ability to connect with natural cycles

We’re also experiencing a wholesale nature deficit. Rewilding Britain suggests that 90 percent of our time is now spent indoors; we’re less food and nature literate, too The biggest indicator of this is how we’re living beyond the limits of nature, having transgressed six of the nine planetary boundaries set out by climate scientists. But it’s also cropped up in an unexpected way: how we interact with and experience the inevitability of death. 

Like plastic, we’re now approaching a technological crux in history where we can (to an extent) deny the natural cycle of life and death (just look at the tech bros in Silicon Valley dropping millions in the search for everlasting life). Human beings have also, of course, made strides in medicine that have almost doubled our lifespans. But by doing so, argues Emma, we have also medicalised our experience of death.

‘Medical advancement is obviously a good thing,’ says Emma, ‘but it makes us feel like we’re aside from nature – that we can conquer death. And we think we know how to avoid it, when actually we don’t – we only know how to prolong the dying process.’

Dr Kathryn Mannix, the palliative care doctor behind With The End In Mind (William Collins, £9.99), argues that medicalisation has radically altered our experience of death. Or, rather, ended our experience of death. ‘Instead of dying in a dear and familiar room with people we love around us,’ she states, ‘we now die in ambulances and emergency rooms and intensive care units, our loved ones separated from us by the machinery of life preservation.’

Emma agrees. ‘One of the reasons that this discomfort starts in society is that a lot of our deaths are now behind closed doors, whereas even a hundred years ago, most people died at home with kids around.’

University of Exeter’s Dr Laura Sangha, a specialist in early modern death cultures, points out that frequent observance of dying in the past didn’t affect the gravitas of loss. ‘Seeing death more, particularly among young children, didn’t mean you grieved less,’ she says, ‘evidence points to parents and children having strong bonds, and parents experiencing heartbreaking suffering when they lost their offspring. But the fact that it was more likely to happen would have meant that you developed strategies to emotionally prepare.’

Other cultures still retain this emotional preparedness, suggests mortician-cum-YouTuber Caitlin Doughty in her book From Here To Eternity (Orion, £8.99). It sees her go around the world following different practises of mourning and burial. She found that Westernised society has shed holding space for the bereaved to grieve openly and without judgement.

In contrast, she found that the Toraja people, from South Sulawesi, Indonesia, embalm the bodies of loved ones and maintain them for years after a person dies, until their burial (after which they are often exhumed on special occasions). In Belize, families bring bodies home from the hospital for a full-day wake and pre-burial preparation, rubbing loved ones in rum to help release rigour mortis-seized limbs more quickly. Closer to home, in Ireland, wakes are held to display the body and queues of people come to pay their respects. In these examples, seeing is believing or at minimum the rituals enhance our understand of our place in the cycle; and it encourages a sense of purpose to help us grieve in meaningful ways.

‘Doulas want to bring death back into the community,’ says Emma, ‘we want to get to a point where people have basic knowledge around death.’

Community seems ultimately the key to unlocking our peace with the end. There is a hunger for open spaces for process and grief – you need only to look at the success of Death Café, which, since starting in an East London basement in 2011, has seen 10,000 events take place in 85 countries. 

‘My late son, John, had the idea of Death Café because of his spiritual beliefs,’ says Susan Barsky Reid, his mother and co-founder. ‘He was a devout Buddhist, and so examined death and dying daily. I think he thought it would be helpful for people because there is so much death denial around.’

Indeed, From Here To Eternity concludes that the key to a calmer approach to the end comes as a collective. ‘Death avoidance,’ Caitlin explains, ‘is not an individual failing, but rather a cultural one. Facing death is not for the faint-hearted; it is far too challenging to expect that each citizen will do so on his or her own.’ And Susan points to joy in this shared challenge. ‘My first experience of a death café was life affirming; people laughed a lot and it was very fun. There was such a feeling of intimacy that one got from being with a group of strangers for an hour and a half.’

And then there’s that final link: nature. ‘One of the reasons I’ve been set up to be comfortable with death is because of nature,’ says Emma, ‘because all of nature is constant life and death, and in fact the things we think are most beautiful in nature ultimately tend to be death – like the autumn leaves falling from trees. All of the things we appreciate in nature are only possible because of that cycle from life to death, and I think the more time you spend being really present in nature, the more you feel like part of it, and that normalises being part of the cycle.’

What To Do Next

  • Read… Dr Kathryn Mannix’s palliative care memoir, With the End In Mind.
  • Attend… A local death café – they take place all over the country (deathcafe.com).
  • Consider…  How you might like to be buried – and talk about it with loved ones – even if you think it’s a while off!

Complete Article HERE!

What Do I Say to A Dying Person?

— (Part 1- Friends & Family)

By Ryvyn

Recently I was asked this question at a recent death cafe. This young professional had found himself at a loss for words at the bedside of his friend who was dying an early death due to a chronic illness. This is actually a very common conundrum for most people but especially men who have been taught that revealing their emotion and being openly vulnerable is not only not masculine or professional. This affects us all because its now often socially unacceptable to acknowledge death is inevitable to a dying person.

A 2020 article on Psychology Today by Jade Wu PH.D, she states there are multiple reasons why we fear death. These reasons range from our personal physical health, age and religious devotion. I strongly recommend this article as some of the study results are not what you would expect. Our inability to relate to someone who is dying is directly related to how we relate to death ourselves.

Religious beliefs referred to being raised from the dead in a perfect body at the return of Christ can actually embed the thought that being dead is a less than perfect state. Others believe that if you profess your belief at least once on your deathbed, no matter what your life was like, you will be accepted into the pearly gates. While others don’t even believe in the existence of the soul and that when we die we rot like a log, the end.

There is no irrefutable evidence that can prove a part of us will continue to exist after death. Yet there are near death experiences, past life experiences, paranormal evidence and a long history of metaphysical experiences which support the continued existence of self-awareness; which when viewed as a body of work, has convinced me personally. I personally have investigated a good number of hauntings to feel completely comfortable stating that disembodied spirits (and entities) are absolutely real and interact with us often.

I have had multiple experiences of being with people as they pass. The practice of working with dying people, like most exposure therapy eases the fear of the unknown realm of the Dead. This too changes a person’s perspective. The only way to help others with death is to choose to wrestle with that shadow yourself. As I’ve stated probably in EVERY article, tomorrow is not promised; therefore, by not preparing yourself for these situations you may loose a valuable opportunity.

Trigger warning: I think one of the biggest fears, is not that of death directly, but that by acknowledging death can be imminent, it may cause a person to lose the will to live. This can be internalized by grieving individuals as having accidentally caused someone’s death and actually they are beating themselves up as having inspired a suicide. Suicide is a whole Pandora’s box which I previously wrote an article on The Right to Die and Death With Dignity (physician assisted suicide) movement.

Allow me to state that a person who is having serious health issues is not the same as a person who is actively dying, particularly in elderly patients. The phrase “active dying” refers to the fact that the doctors have done all they can and death is imminent in hours to weeks.

This is not the same as a Hospice level diagnosis. Technically one can qualify for Hospice if the doctor’s diagnoses is that death is likely to occur within 6 months. However, I often see in my local area, that by the time someone is given that diagnosis, they are actually only weeks away from death. This can be particularly confusing for me personally because I know they dont want to offer hospice services for people who may go on living for years. Part A of Medicare pays for hospice care at first for six months. After that six months an unlimited number of 60-day periods becomes available, if you are still considered terminally ill. In other words, hospice care is available in increments of 60 days for an indefinite period of time.

Let us consider several possible scenarios and options of action:

What if the dying person is at home and on hospice? These are really wonderful situations that are the most comfortable. Often the patient has some clarity and is aware. Depending on medication levels, there is a good chance you can have a nearly normal ability to converse, even with the elephant in the room.

What can you do?

  • First and foremost, treat your friend as you always have. Joke with them and chat about your usual things, just be comfortable. Nothing is worse than making the situation about you and your inability to deal with the situation. Focus on your friend/loved one.
  • Let’s address the elephant in the room! Gauge the awareness of your friend by inquiring what they know about their diagnosis and what the expected outcome may be.
  • Ask how they feel about that diagnosis and the likely outcome.
  • Ask if they feel prepared to face that and how you could help them feel more at peace with it.
  • This is often where people will be flippant and dismissive. This is where they are trying to be polite and allow you (and themselves) an out rather than go where things can be intensely emotional. All you need to do is to communicate that you are there to support them and that you can LISTEN. No one is expecting you to fix it or have answers.
  • Address the situation as if they are going on a trip; it is actually the ultimate trip. This can even involve into an easy way to communicate and give structure to the unknown aspects of leaving.
  • Details are important. Talk about your favorite memories with them. Skinny dipping, coffee in the morning, that trip to Vegas. Go for laughter!
  • It doesn’t have to profound. Be sure to tell them how important they are to you and what you garnered from having them in your life. Even if its that they made the best pancakes in the world, that is important!
  • Words can fail, but your actions will express all that needs to be said. Don’t be afraid to show your tears… this is pain leaving the body. The harder you push emotional pain away the more painful it feels and the harder and longer your grief will be. It’s ok to break down, sob and hug them. YOU both will get more out of that than you can imagine! BE VULNERABLE. Can you imagine how valuable you are making that person feel. And it allows them the opportunity to comfort you! WHAT A GIFT!

Perhaps you’ve come to visit with a person is in and out of consciousness or clarity. People in a facility/hospital setting are often on a great deal of pain medication or dementia and it can be a struggle to have a conversation or they may completely unable to communicate.

What you can do:

  • Hold their hand and touch them gently. Remember that scents, and touches may be intensified so be gentle, but please do it. Loving, gentle touch is often missing from the end-of-life because its all medically centered. You can also brush their hair, wash their face, arms, hands or feet. Apply lotion and lip balm. (I’ve never understood why cosmetic cleanliness seems to take a backseat to medical care when dying. If I’m dying, please brush my hair, wash my face, and (Scout) please do a bit of light makeup! I need to feel presentable to receive guests and address such a momentous occasion.)
  • Don’t be afraid to lie next to them or cradle them in your arms.
  • Talk out loud to them, they can hear you. Hearing is the last sense that is lost. Your voice may be like part of a dream in their experience, so be aware of what you are putting into their mind.
  • Be honest with them. If you are their heath care agent/proxy, their closest living relative, or the acting death doula, please tell them they are dying. Tell them the diagnosis and what is happening to them.
  • Tell them where they are and who is in the room. Tell the who the aid/nurse is and what procedure they are doing. People are not packages and nursing staff can get caught up in doing an job. Even doctors no longer speak to those who are unconscious. They are still alive and likely aware!
  • Don’t talk about the will, the funeral or the burial! This is business and in reality, it only affects the living… not the dying person! Be aware and considerate of what is important to the dying person.
  • Everything listed above still applies.
  • Consider talking about their closest loved ones who have already died. I am a firm believer that the dead come to greet/gather up those who are dying. Sometimes they will tell you who is coming to gather them. Ask the nurses if they have noticed her talking about anyone that might be passed; this will not be a strange question to them, trust me. Its likely whomever they loved the most during their life, often its a parent, spouse, sibling or best friend. You can help them reconnect with them by assuring them that “Uncle John is here to be with you.”

Take time to think about these things before you go into their room. You can have a set of favorite memories ready as well as a possible discussion about who has already passed that will be there to greet them. Don’t be afraid to look like a fool, to be emotional or to be out of control. Death is the ultimate revealer of what is actually important.

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!

How Planning My Death at 52 Helped Me Learn More About How I Wanted to Live

— As my health is markedly declining, I’ve made a list: places to see/go, things to do, things to no longer do

“I’m thinking more about living for the first time in…well, at least four years”

By S.C. Beckner

At the end of every year in the past, I anxiously waited to crack open my new daily planner for the coming new year so I could jot down resolutions. I like a clean slate.

Every year those resolutions tumbled to the bottom of my to-list before I’d finished humming “Auld Lang Syne.” Things like, be more disciplined/stop procrastinating, tackle my TBR stack/try a digital sabbatical, and cut out sugar/lose ten pounds/no more than one dessert a day, topped the list year after year.

This year, I’m Googling phrases like “Is an advance directive the same as a living will?” “Where is assisted suicide legal?” “What drugs are used in assisted suicides?” When I type the last question into Google, the first thing that comes up is the number “988” and encouragement for me to reach out for support.

My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had.

I don’t have a solid diagnosis yet. Instead, I have a plethora of odds and ends symptoms, disorders, dysregulation, immunodeficiencies and viruses after I contracted a nasty respiratory illness that lasted for seven weeks at the end of 2019 after a return trip to the Midwest to visit family for the holidays.

The Downward Spiral

The downward spiral started with an episode of super ventricular tachycardia a week or so after I was “on the mend.” My resting heart rate hit 150 plus beats per minute which began a series of trips to the local emergency room, tests and procedures. That illness triggered a marked decline of my health and was likely the beginning of this chosen end that I’m facing now. 

But then, last March, three years after that first trip to the ER, I noticed weakness in my right forearm while I was working from home one afternoon. My arm felt heavy, the muscles rippled beneath the skin and my finger strokes on the keyboard weren’t landing as efficiently as they once had. Words were missing letters…Knoledge. Languge. Mariage. Muscles spasmed.

The next few months brought resting tremors, and trouble swallowing. My speech became sluggish in the evenings when I was most fatigued. I started to struggle with short-term memory, mixed up words in conversation, and it felt like words I used frequently had been stowed on shelves in my brain and I could no longer reach them.

I’m doing things like leaving the kitchen with the faucet running, burners on, and recently, I put a container of yogurt in the drawer with my Pyrex lids.

‘Maybe ALS’

In August, my rheumatologist referred me to a neurologist — my life inundated with ologists. Immunologist. Gastroenterologist. Rheumatologist. Neurologist. He suspected that rather than an autoimmune disease, a neuromuscular disorder was the root cause of many of my symptoms including the weakness, tremors and autonomic dysregulation which caused functions like heart rate, blood pressure and temperature to become unpredictable, and sometimes dangerous.

Now, after most physical exertions, like taking a mildly warm shower, my body temperature spikes to 102-104 degrees, my heart races to 130-150 plus beats per minute.

“Maybe ALS,” the rheumatologist said. Amyotrophic Lateral Sclerosis. A terminal diagnosis.

Thus far, ALS can’t be ruled out with certainty as a diagnosis, but it also hasn’t been confidently diagnosed at this point in the MRIs, EMGs and blood draws. I’m being referred to another neurologist for further evaluation. According to the ALS Therapy Development Institute, some patients initially receive a “suspected, possible, probable, or definite ALS” diagnosis as other disorders and diseases are ruled out.

I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.

On paper, ALS is the worst-case scenario in terms of outcome with a life expectancy of two to five years depending on the progression of each individual patient. Best-case scenario, this myriad of symptoms, this failure of my fifty-two-year-old body, is that my faulty, gone-rogue immune system that has already attacked my other organs — lungs, liver and spleen — has started its assault on my brain causing inflammation and/or deterioration.

A Decision Made

This brain that I’ve filled with ten years of study in higher education, ideas for essays, books yet to be written, language, memories of my children, their children, my parents when we were all much younger — has been damaged. There is no way to know if there’s any hope of recovering what’s been lost. But now, I think in terms of quality of life, and regardless of which of those diagnoses the doctors land on, my decision to end my physical, cognitive and emotional suffering remains the same.

I haven’t officially told my family, many of those relationships are estranged/strained, and, even as a child, I oft communicated in writing. As a child, I asked my mother if she was mad at me on lined steno pages left on the kitchen table, asked her to check yes or no.

I’ve written letter after letter to my husband throughout our nearly-twenty-year marriage — in the beginning, letters of love and wanting, more recently, letters of request and reflection. I’m sorry you ended up with a sick wife.

I have expressed my frustration and fatigue with being sick for so long to some members of my family, said things like “This isn’t sustainable,” or “I’m not sure how much longer I can do this.” But they are of the mindset that I need to get out more, that I can somehow right the ship of my sick and fledgling body with positivity. Even my husband has talked to me about the power of “mind over matter.” Those are all different conversations.

On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls.

Now, I have to try to take a short walk or do some sort of activity after every meal to help my stomach empty itself of its contents, lest the gastroparesis cause the food to stagnate and form a solid mass in my gut. On my worst days, I’m frequently utilizing my newly-purchased rollator after being humbled by several trips and a few falls. Some days, I struggle to feed myself and swallow food and drink, regardless of consistency.

While my brain and my body continue to weaken, I think about the trivial, everyday things like not being able to make and pour my own coffee, think about how my hands are no longer strong enough to hold one of my beloved coffee mugs that I’ve collected over the years from my children or from pottery-making friends.

I can no longer stand in the kitchen for extended periods while I make doughs and roll them into glazed and streusel-ed pastries or stir a pan of homemade hot fudge that I gift to friends and neighbors. I worry that my arms won’t hold my new granddaughter expected in the spring.

Leaning Into End-of-Life Plans

On a grander, more humiliating scale, I’ve wet myself more than once trying to maneuver my faltering, quivering body out of bed in the morning. As my speech slurs with fatigue and my word recall is failing, I think about the joy I’ve always found in oral communication — it’s how I connect with the world around me. I’m a storyteller, a teacher, a talker. The idea of losing these things that make me me is unbearable, as it is for anyone diagnosed with a debilitating and potentially terminal disease.

See a meteor shower. I checked this one off the list.

I am leaning into these end-of-life plans, engaging both the creative and Type A aspects of who I am. I am taking online art classes, learning to sketch, to paint, trying to teach myself to knit while simultaneously writing my care plan, getting my “final wishes” down on paper. “Final Wishes” is such an odd statement. I imagine genies seduced from bottles and how you can’t “put the genie back” once it’s freed and am reminded of the permanence of my decision.

Making Lists

I don’t like the term “bucket list,” but I’ve been making one —well, part bucket list, part to-do list. In my mind, I’ve divided this into three parts: places to see/go, things to do, things to no longer do. The list has things like:

Places to see/go:
1. See the northern lights in Maine, hike while I’m there.
2. See fall foliage somewhere in the northeast. One more time.
3. Visit another country. I’ve settled on Algonquin Park in Canada’s Ontario province. Stargaze, see the northern lights from there too.

Things to do:
1. Go camping. Sleep connected to the earth.
2. See a meteor shower. I checked this one off the list.
3. Plant a garden.
4. Collect and compile recipes for my kids, make care packages for each one with sentimental items.
5. Finish/sell my book.
6. Write letters to loved ones. See loved ones.

Things to no longer do:
1. No more offering myself up to those who aren’t interested in genuine loving/considerate relationships.
2. No more hating myself for the past. I want to love the life I lived, flawed as it was in many ways.
3. No more finishing books that I don’t like.

It’s been four years now, counting that lengthy viral illness. I’m tired. I reached the decision to end my suffering after much thought and consideration. I don’t know exactly when, but I’m close to settling on an assisted end-of-life plan.

But now, instead of wondering how my disease/s and decompensation will progress, worrying about the logistics of needing a greater level of care, I’m thinking more about living for the first time in…well, at least four years, maybe more. I’m seeking joy, love and kindness and looking for everyday opportunities to pour those things back out into the world around me.

Some days, I’m successful and other days, I’m not. I’m not a gracious sick person. But in all of this, I’m grateful that in planning for my death, I’ve finally learned what’s important to me…finally learned how to live.

Complete Article HERE!