There is beauty and joy at the end of life, too

By Sarah Gray

What people don’t understand is the beauty and joy to be found at the end of life. When I tell people I work at a hospice, they often say “that must be so hard.” But my favourite thing is hearing people’s stories, their experiences, their successes, their failures – the things that life has taught them. I love helping them share these stories with their family members. It helps the family members keep their loved one alive in their memories after he or she dies.

I had a husband of a resident come in six months after she had died to say that he received a Christmas card from her, written to him while in hospice. He was tearful, but so incredibly grateful for this gift. He said the card helped keep her alive for one last Christmas.

Hospice workers encourage conversations about things that want to be said and heard. We create time for families to connect, laugh and cry together. Mostly, we help create a legacy of the resident that will remain with their family.

We have helped someone write letters to each of her children. We have sung favourite songs, played favourite games. We have celebrated birthdays, births, marriages, vow renewals. We have rolled people in their beds out onto the patio to sit in the sun. Often, this is their first time outside the four walls of a hospital or bedroom in months. How amazing it is to have such a thoughtfully designed building that can make this possible – feeling the warmth of the sun directly on their skin, hearing the birds chirping from the nearby feeder and breathing in the fresh air. I see how it provides the resident and their family with a sense of normalcy. This is where the best conversations happen. Families can forget, for a moment, about what is to come, and just enjoy the present.

Hospice is a place that collects nurses and personal support workers such as me. The emotionally challenging work we do weans out the people who think it’s just a job. You do not just show up for a shift, put in the time, and clock in and out. You are responsible for providing this human being, who has lived a whole life, with the care and dignity they deserve as they finish it. We help ensure that all loose ends are tied. Sometimes, these things are big, such as arranging a visit from a miniature pony that one of our residents used to show. Sometimes they are small, such as staff sitting at the bedside of a resident who doesn’t have any family, holding their hand, so they don’t die alone.

I have spent time working in hospitals, in long-term care and in the community as I searched for a place where the work that I did matched my beliefs of patient-centred care and individuality. After my first day at the hospice, I knew I had finally found my match. The loss of the residents we care for like family does not take a big piece of us with them but, rather, fills us with purpose and joy. The work we do gives us so much back that the word “rewarding” doesn’t even scrape the surface.

I began working at the hospice in May, 2017. As much as I love the work and what we accomplish, I could never have imagined needing it myself. Shortly after I started, my father was diagnosed with cancer. Soon we were faced with the decision I have seen so many other families struggle with: Do we settle for adequate care in the comfort of our home or do we move to the hospice where we will receive excellent care but in an unfamiliar location? The decision was easy for me, but not so much for my mom. She was afraid that moving him to hospice meant she was giving up her ability to care for her husband. But my mom was relieved to discover that she could still conduct much of the care, even in our facility. She did not have to sacrifice one for the other. With the 24/7 nursing and physician support, Dad – after eight months of suffering from his illness – finally had some peace.

During this time of comfort, he was able to give back to us something we will carry with us forever. He called us all in, on his last good day, told us all how much he loved us and reassured us that he never suffered. He was able to leave me with a recording, telling me what our relationship meant to him and that he would be with me through all of the big life events that he would now miss.

The hospice isn’t a place where people come to die. It is where they come to live – to live well for the little time they have left. It is a place of celebration, connection, comfort and support. It is a place of safety for the dying and the grieving. Experiencing such care with my father has only fuelled my passion to ensure that as many people as possible can have a similar experience.

Complete Article HERE!

To Die Is Different From What Anyone Supposed

Art, philosophy and mortality.

By Joseph Kugelmass

At an overlooked moment in his Essays, Michel de Montaigne writes that “life itself is neither a good nor an evil; life is where good or evil find a place, depending on how you make it for them.” Yet it’s hard for anyone to reckon, before the point is moot, how much good and evil one life shelters in its span. No matter what we do while we’re alive, there’s plenty that we leave unfinished, or that we gape at while it goes awry. There are mistakes that we still might have enough time to mend. Hamlet got it backwards: it’s not death, but life, that “puzzles the will” with its ironies and uncertainty.

Every now and then, however, people manage to outlive themselves. Convicts serving life sentences do, for example, which is why “Folsom Prison Blues” is such a savage, luminous song. Mortally ill people sometimes end up in an equally uncanny position. Leo Tolstoy’s character Ivan Ilych, on his deathbed, glimpses the ugly truth of his life: “It occurred to him that what had formerly appeared completely impossible to him, that he had not lived his life as he should have, might be true. It occurred to him that those barely noticeable impulses he had felt to fight against what highly placed people considered good, barely noticeable impulses which he had immediately driven away—that they might have been the real thing, and all the rest might have been not right.”

Russian literature is full of people like Ivan. Prince Myshkin (in Fyodor Dostoevsky’s novel The Idiot) eventually realizes that “for a long time now, he had not been talking about what he needed to talk about, and had not been doing what he needed to do.” The horror of this realization breaks his spirit, and he succumbs to seizures and catalepsy, dead to the world. A quieter storm breaks over Lambert Strether’s head in The Ambassadors, by Henry James: “I’m too old…What one loses one loses; make no mistake about that. Still, we have the illusion of freedom; therefore don’t, like me to-day, be without the memory of that illusion.”

Outcries of regret like these carry an emotional charge for us, the audience, that can be hard to explain. Is the finality of death, prison, or old age really profound just because—to quote Michel Houellebecq—the goal of life’s been missed? Critics have spent their whole lives on the works of Henry James only to conclude that “the idea of ‘too late’” was some kind of regrettable obsession on James’s part (see, e.g., Berthold 1983). After all, the curtain does have to fall, sooner or later.

Fortunately, these epiphanies that reach us from death’s farther shore aren’t really bemoaning lost opportunities. Instead, they are bits of fire carried down from those Olympian peaks where life appears as it really is: a frenzied circus of petty motives, bootless efforts, and misunderstandings. Death is the greatest moral agent in all of life. It boils each individual down to her most generous acts; nothing else survives. We are the sum of our gifts to the people who will outlive us. Thus it does matter what a dying man decides to regret. His regrets, useless to him, are the bitter correctives that we survivors may choose to adopt.

Literature’s stuffy cousin, philosophy, is always playing a game of death. The philosopher tries to abstract truths about life from human experiences, impartially, as if she hadn’t lived them herself. Baruch Spinoza famously wrote that philosophy should consider the world sub specie aeternatis, “from the perspective of eternity.” Erasmus, in The Praise of Folly, paints a vivid picture of Menippus (who, supposedly, lived on the moon) doing just that: 

“If a man like Menippus could look down from the moon and behold those innumerable rufflings of mankind, he would think he saw a swarm of flies and gnats quarreling among themselves, fighting, laying traps for one another, snatching, playing, wantoning, growing up, falling, and dying. Nor is it to be believed what stir, what broils, this little creature raises, and yet in how short a time it comes to nothing itself; while sometimes war, other times pestilence, sweeps off many thousands of them together.”

It’s a comical picture, but there’s a great deal of forgiveness in it as well. When it’s our turn to die, there’s no longer any reason to stay angry at people who loved us, or cheated us, or whom we envied. Recrimination and bitterness lose their impetus. The facts of life don’t alter just because we die; if we lived forever, we’d still behave like idiots from time to time. But the fact of death, seen clearly and steadily, drags many other things with it into the light. At the moment of his death, when he’s murdered, Lester Burnham (in American Beauty) “can’t feel anything but gratitude for every moment of my stupid little life.”

Philosophy as we know it began when Plato sat down and tried to make sense of the murder of Socrates; the vicious Athenians who killed him to preserve their monopoly on morals become, in The Republic, simple cave-dwellers frightened of sunlight. Their cruelty is pardonable blindness; in order to write about the death of Socrates, in a fashion that honored his greatness, Plato had to make peace with his teacher’s executioners.

We tend to think of “objectivity” as a cold, rational perspective that doesn’t take sides on questions of morality. We associate it with empirical observation and scientific testing. That’s a tremendous misunderstanding. To be objective is to grasp something as a whole. It lays bare the threads that connect a senseless murder in Reno with a “fancy dining car” on a passing Folsom train. It’s realizing, as Plato did, that Socrates couldn’t have become so widely known and admired in a city less dangerous to him than Athens. It means remembering, like Ivan Ilych, the impulses towards something better that one felt, repressed, ignored, all for the sake of a life not worth living in the first place.

Walt Whitman wrote, in his “Song of Myself,” “to die is different from what anyone supposed, and luckier.” For, as he says in the preceding line, “All goes onward and outward, nothing collapses.” To see that, instead of just divining and proclaiming it, is the work of philosophers: those few who teach themselves to die with eyes open.

Complete Article HERE!

Vancouver photographer offers solace to those dealing with death

Grief Narratives website allows users to reflect on the end of days

Josh Neufeld documented his father’s death through a series of photographs called “Meeting Mortality.”

By John Kurucz

Josh Neufeld has a special affinity for turkey necks.

It’s not that they taste particularly good, nor were they a staple on his plate since childhood.

Neufeld’s late father Dietmar loved the neck. It was his go-to whenever turkey was served at a holiday meal.

Dietmar died in September 2015 after a brief battle with cancer.

Thanksgiving dinner that year was the first family gathering after Dietmar’s death.

“I sat in his spot and in his honour, I ate the whole neck and blubbered like a buffoon because it was like ‘OK, this is our life now,’” Josh recalled. “It’s four Christmases later, but still that feeling doesn’t change. It sucks.”

Outside of the culinary nod, Neufeld continues to pay tribute to his father in a manner that’s profoundly personal, yet completely universal.

Neufeld’s website Grief Narratives invites people the world over to share their photos, thoughts, feelings and emotions as they experience death in their own unique way.

The online platform has garnered interest across Europe and as far away as South Africa.

The site was born partly out of Neufeld’s experience photographing the end of his dad’s life, a project called Meeting Mortality.

Across roughly 30 photos, Neufeld documented the final 19 days of his father’s life in hospital.

“My dad never did see the photos, which really messes with my head,” said Neufeld, a professional photographer by trade.

Neufeld hatched the idea in the spring of 2015 upon visiting a dying relative in California. His uncle was simultaneously battling Parkinson’s disease and cancer and sat the roughly 50 family members down to prepare them for the end.

“You walk away from a conversation like that and you’re like, OK, that really realigns priorities and shifts perspective and helps you look at life a little differently,” Neufeld said.

Volunteering at a hospice was to be Neufeld’s next step but Dietmar fell ill before his son could find a volunteer placement.

Dietmar was diagnosed with pancreatic cancer on July 13 and died Sept. 9. He was 66. He was the department head of classical, near eastern and religious studies at UBC, an avid cyclist and loved taking the piss.

“Him and I would spend hours out by the fire chatting,” Neufeld recalled. “He could go deep about anything religious and he taught ancient Greek language. But then he could also sit there and shoot the shit about the most meaningless, stupid stuff.”

Documenting the end was done so with his Dietmar’s blessing. He also came up with the name “Meeting Mortality.” Neufeld discussed the idea with his mom and three sisters and got buy-in, though not totally.

“My oldest sister doesn’t really like to look at those photos,” Neufeld said. “But I think they just understood where it was coming from.”

Neufeld has since gone on to photograph the end of days for other families. Last year, he interviewed 22 people about their experiences confronting mortality, taking photos as they spoke.

He hopes to expand Grief Narratives into a multi-media platform where users can pay tribute to loved ones via text, photos, video and other media.

It’s a project not necessarily intended to normalize death, but to give community and a space to reflect for those who need it.

“I hope it becomes something people use and find value in,” he said. “I’m trying to show people that it’s an option. It’s not going to be for everyone.”

Neufeld’s work can be seen online at and

Complete Article HERE!

The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article HERE!

‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

Complete Article HERE!

Thoughts for the living from one of the dying

Metaphorical lightning strikes everyone, but this bolt struck me. I’m not quite the hero about it, and don’t ask me to be.

By Eddie Ryshavy

Pancreatic cancer comes out of nowhere and changes your life in one sentence from your doc. In my case, he called me at home and said, “The CT scan showed a three-millimeter mass on your pancreas.”

Stunned, I felt like the judge had just pronounced a death sentence and my earthly status was unalterably changed.

With such news, you realize quickly that you are now different from everyone around you. You have no future. Your worldview changes dramatically.

Humans are the only creatures who can recognize and appreciate the end-of-life process. I’m not 100% sure at this point that it is such a great capability.

I know I can’t speak for everyone. But after talking to some others occupying a seat in the same boat, I thought some comments for the living from the afflicted might be useful:

I find that I crave normalcy. Even though you are sorry, you are not nearly as sorry as the person dying. Make it quick and get on with behaving normally.

Hardest thing — telling people, especially those who want to explore every cancer cell with you. In the past I enjoyed discussing all my age-related maladies as much as anyone. But once they put on the terminal tag it tends to dampen the fun a bit.

Please, please don’t tell me about this friend of a distant cousin who had exactly what I do and died of a lightning strike on the last mile of a marathon at 103.

If you are one of those folks generally known as a crêpe hanger, who gets their jollies by contacting everyone with even a vague acquaintance with the impending decedent, please limit your background information search to nonfamily members.

If you are a close relative or spouse, you should be aware that the soon-to-be departed will have some days when he or she is having a hard time playing the hero.

Oh, I know how to do it. I’ve watched most of John Wayne’s movies. But he died often and had directors coaching him. I’m just on my own and only have this one shot at it.

I can tell you playing the part occasionally gets tiresome.

I know you feel bad for me. I feel bad for me, too. But know I didn’t do this just to ruin your day. Don’t make me spend the next 20 minutes helping you feel good because I understand you don’t feel good about my situation.

Some feel compelled to make sure they have done everything they can to ease the journey into eternity. They sit down, hold both my hands, lock eyes, assume the countenance of a longtime hemorrhoid sufferer and grill me about their version of redemption. They then use their close association with the Almighty to broker a good plea bargain on my behalf.

I know they mean well. But so do I when I say: Please don’t.

We just finished “the meeting” with our kids. My wife is plagued by a penchant to organize anything and everything around her. She had prepared a working outline that dealt with everything from our current and projected financial situation to plans for her living situation after my approaching exit. Thankfully, the kids picked up on my need for normal human contact, and while the initial information we needed to impart evoked some tears as it highlighted the finality of my situation, we got through it fairly quickly and returned to what I considered an enjoyable lunch.

We are paid-up members of the Cremation Society, and my wife has pledged to place me in a cupboard drawer along with the envelope containing the remains of our beloved pooch, Cinder, until the day all three of us will share my eternal parking spot.

Having been a sympathy-giver in the past doesn’t make receiving it any easier. It’s hard not to be envious that everybody you know has a future and you don’t. It makes you feel isolated, and frankly irritated. It has always been difficult for me to receive favors from others. I suppose it’s the downside of being in control.

The impending loss of control and accompanying dependence on others is another difficult part of this pilgrimage. If I should not properly show my appreciation, please know that I do appreciate your kindness — and you — very much.

And then of course there is the matter of the wig. One feature of my final journey I have vowed to resist is the humiliation of complete baldness. I know it’s in style and that many guys look good that way. I also know I wouldn’t be one of them.

We purchased a wig the other day which, after the initial shock, takes about 50 years off my appearance. My coiffeur assured me that after the hair stylist she recommends finishes trimming down the wig, it will be more age-appropriate. Even so, everyone I know will be well-aware I have on a wig.

Who knows — maybe I’ll set a trend, or at least provide a few laughs.

Once your downward spiral toward eternity has been medically confirmed, you realize that this trip must be taken alone. Hard as it is to leave the kids, all parents are aware, and generally accept, that we will eventually precede them. I can find no fitting expression to describe the anguish at the thought of leaving my life partner, a bond in my case that has officially endured 62 years but unofficially since high school.

Heart-wrenching doesn’t come close, but it’s the best I can do.

All I can ask in the interim is that you please join me in making my interaction with you as enjoyable as possible.

Complete Article HERE!

How Friendship Changes at the End of Life

“People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker.”


Julie Beck talks with two women who met through the nontheistic religion of Ethical Culture and have spent a significant amount of time ministering to aging and dying members of their congregation. They discuss how friendship changes at the end of life, and how they work to foster connection and community for members of all ages.

The Friends:

Anne Klaeysen, 68, a recently retired clergy leader for the New York Society for Ethical Culture and a humanist chaplain at New York University. She lives in Brooklyn.
Liz Singer, 71, a geriatric-care manager and the president of the New York Society for Ethical Culture. She lives in Fort Lee, New Jersey.

This interview has been edited and condensed for clarity.

Julie Beck: How did you two meet and begin ministering to the dying together?

Anne Klaeysen: Liz became a member of the New York society maybe seven years ago. I am always at the monthly newcomer reception, so we met there. She just dove right in, and shortly became the president of the board. I have to confess, Liz, I get a little worried when people dive in so quickly. I’m thinking, Oh dear, is she going to drown? Liz did not drown; she’s a strong swimmer. Liz came at a time when we really needed strong leadership. And she wasn’t afraid to take on a couple of the old boys. So I think there was certainly a feminist bond there. [We became] partners in crime, or [rather] partners in good works.strong>Liz Singer: We have a strong aging population. I think 30 percent of our members are probably over 70. And we started to see things like dementia. As Anne and I developed our friendship, we began having conversations on the very delicate process of aging and navigating our roles with the members.

Anne: Liz is a geriatric-care manager. Her expertise in this field was invaluable, but I was a little concerned because I didn’t want to take advantage of her. Members don’t mean to take advantage, but sometimes they do.

Also, our members are humanists. We’re a nontheistic religion of ethics. So most of our members don’t believe in a supernatural deity, nor in an afterlife. And they’re fiercely independent. One of our challenges has been to get them to tell us when they’re going through something. Very often we find out about things after they’re in the hospital. It’s not that they don’t trust us; they have a real fear of losing their dignity.

Another society member, Barbara Simpson, runs something called the Death Café. That’s an opportunity for folks to come and really speak about living. We know that we are mortal, and the gift of that is we can live life more completely and in connection with each other. It’s really a joyful experience for [our members]. Barbara has said that very often people are comfortable talking about [mortality], but their children aren’t. [They’ll say], “No, Mom, you’re never going to die; you’re not going to die yet.” People may have their life in order, their papers in order, but their children are in denial.

Anne Klaeysen (left) and Liz Singer (right) sharing a meal together.

Beck: Was there a turning point where you went from having a collegial relationship to more of a friendship?

Liz: The turning point was probably our first serious case, five or six years ago. There was a woman who was estranged from her daughter. Very stubborn. We were trying to bring the daughter back into the picture and make that relationship communicative. Because it was so difficult, Anne and I had to talk about it all the time. The trick was for Anne and I to work together very closely. Anne was having lunch with [the older woman], and gaining her trust. And I was trying to bring in oversight without activating her stubbornness.

Anne: [The woman] left the society for a while because she didn’t get along with people. People didn’t quite come up to her standards. When she came back I was thinking, How can we help her to fit in? How can we help her not be so judgmental? One really good connection was with the children [in our congregation]. I suggested that she come meet with the children, and tell them about her experience. She was a Holocaust survivor; she was on the kindertransport train from Germany to England. I wanted her to be connected with the children, because she was estranged from her own daughter. And she was kind of prickly around some of the adults. The children were so appreciative, and so affectionate with her. They wrote to her when she wasn’t well. They drew her pictures. That’s another thing that a community can do when it’s intergenerational: connect at all ages of one’s life.

Beck: Being with people at the end of life is very intense work. You are regularly seeing a part of life that a lot of people don’t see, or see very rarely. How do you feel that affects your relationships generally and your friendship specifically?

Anne: Generally I have a great appreciation for what the elderly are going through. A big challenge with one of our members was the lack of understanding among hospice and health-care staff for people who are humanists, who don’t believe in God, and don’t believe in an afterlife. It was really difficult for this person when others around her were saying, “Oh, don’t be afraid. God loves you.”

I’ve been on different panels to try to train people not to assume that they are caring for God-fearing people. Just listen to these people. Even when they have dementia. They may not know where they are, they may not remember things, but you’ve got to listen.

Liz: How does it affect my personal life? Number one, it [gives me] an appreciation for life. Number two, I have a reputation when I go to dinner parties. Don’t bring up any questions about aging or I’ll get on a soapbox.

Beck: You mentioned that sometimes you are ministering to people who are your friends, which I imagine is very special, but at the same time could make the balance harder.

Anne: It does. Keeping our work separate from [our personal lives] is a challenge. Where do you draw the line for someone who’s a friend and someone that you’re pastoring to in a professional capacity? But there’s a part of me that wants my life to be integrated. You don’t want to compartmentalize, but you also don’t want to become so involved that you lose perspective. One thing Liz and I do in our friendship is try to help each other keep that balance.

Beck: Is there anything that you’ve observed about how friendship changes at the end of life?

Liz: People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker. Once people get past that fear of what’s going on, they can be friends again.

Anne: Partly, [what changes is] a sense of loss. My dad died at 101. He was hale and hearty up until the end, and very sound of mind. I remember him saying that all of his friends had died on him. But because he was hard of hearing, it was difficult for him to make new friends. I think a lot of the infirmities that are experienced in advanced age make it difficult to make new friends. Often at the New York society, I see people who become a member after a spouse has died. They’re grateful to have a group of people with whom they can socialize.

I don’t want to sound stereotypical here, but women have been raised to develop those social skills. Men have very often relied on women to do that for them. What we find is that, in the aging population, women are able to cope better. Men who have relied on a spouse or a girlfriend lack those skills. They prefer to have a woman in their lives who can do that for them. That’s the way they were raised. It’s really difficult for them.

Beck: Because of this work, are there things you’re able to talk about with each other that are harder to talk about with your other friends?

Liz: [Anne and I have] skills around dealing with very deep conversations, where a lot of people don’t want to go.

Anne: Of course we’ve also had a lot of challenges in this political atmosphere of, How do you hear somebody with whom you profoundly disagree? We’ve seen that with members who may not be on speaking terms with family or friends. A lot of the work that we do is about—no matter what age somebody is—having respect for human worth, and seeing the other person as a full person.

Liz, you and I had a little rocky time when we weren’t really understanding each other.

Liz: It had to do with some organizational issues at the society. It was very political.

Anne: I thought, I’m going to assume that this is a misunderstanding. We just really need to go back and listen more carefully. What I really appreciated about Liz was that she not only listened to me but she also checked in with other Ethical Culture clergy. I really appreciated not only the deep listening, but also her checking to see, What’s the bigger story here? I think that comes back to being a religion of ethics. Friendships take work. And a lot of people aren’t willing to do that.

Complete Article HERE!