How to Die

As a psychotherapist, Irvin Yalom has helped others grapple with their mortality. Now he is preparing for his own end.

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One morning in May, the existential psychotherapist Irvin Yalom was recuperating in a sunny room on the first floor of a Palo Alto convalescent hospital. He was dressed in white pants and a green sweater, not a hospital gown, and was quick to point out that he is not normally confined to a medical facility. “I don’t want [this article] to scare my patients,” he said, laughing. Until a knee surgery the previous month, he had been seeing two or three patients a day, some at his office in San Francisco and others in Palo Alto, where he lives. Following the procedure, however, he felt dizzy and had difficulty concentrating. “They think it’s a brain issue, but they don’t know exactly what it is,” he told me in a soft, gravelly voice. He was nonetheless hopeful that he would soon head home; he would be turning 86 in June and was looking forward to the release of his memoir, Becoming Myself, in October.

Issues of The Times Literary Supplement and The New York Times Book Review sat on the bed, alongside an iPad. Yalom had been spending his stay watching Woody Allen movies and reading novels by the Canadian writer Robertson Davies. For someone who helped introduce to American psychological circles the idea that a person’s conflicts can result from unresolvable dilemmas of human existence, among them the dread of dying, he spoke easily about his own mortality.

“I haven’t been overwhelmed by fear,” he said of his unfolding health scare. Another of Yalom’s signature ideas, expressed in books such as Staring at the Sun and Creatures of a Day, is that we can lessen our fear of dying by living a regret-free life, meditating on our effect on subsequent generations, and confiding in loved ones about our death anxiety. When I asked whether his lifelong preoccupation with death eases the prospect that he might pass away soon, he replied, “I think it probably makes things easier.”

The hope that our existential fears can be diminished inspires people around the world to email Yalom daily. In a Gmail folder labeled “Fans,” he had saved 4,197 messages from admirers in places ranging from Iran to Croatia to South Korea, which he invited me to look at. Some were simply thank-you notes, expressions of gratitude for the insights delivered by his books. In addition to textbooks and other works of nonfiction, he has written several novels and story collections. Some, such as Love’s Executioner & Other Tales of Psychotherapy and When Nietzsche Wept, have been best sellers.

As I scrolled through the emails, Yalom used his cane to tap a button that alerted the nurses’ station. A voice came through the intercom, and he explained that he needed some ice for his knee. It was the third time he’d called; he told me his pain was making it difficult to concentrate on anything else, though he was trying. Throughout his stay, his wife of more than 60 years, Marilyn, had been stopping by regularly to refresh his reading material. The day before, he’d had a visit from Georgia May, the widow of the existential psychotherapist Rollo May, who was a colleague and friend of Yalom’s. When he runs out of other things to do, he plays on his iPad or his computer, using them with the dexterity of someone half his age.

Many of Yalom’s fan letters are searing meditations on death. Some correspondents hope he will offer relief from deep-seated problems. Most of the time he suggests that they find a local therapist, but if one isn’t available and the issue seems solvable in a swift period—at this point in his career, he won’t work with patients for longer than a year—he may take someone on remotely. He is currently working with people in Turkey, South Africa, and Australia via the internet. Obvious cultural distinctions aside, he says his foreign patients are not that different from the patients he treats in person. “If we live a life full of regret, full of things we haven’t done, if we’ve lived an unfulfilled life,” he says, “when death comes along, it’s a lot worse. I think it’s true for all of us.”

Becoming Myself is clearly the memoir of a psychiatrist. “I awake from my dream at 3 a.m., weeping into my pillow,” reads the opening line. Yalom’s nightmare involves a childhood incident in which he insulted a girl. Much of the book is about the influence that his youth—particularly his relationship with his mother—has had on his life. He writes, quoting Charles Dickens, “For, as I draw closer and closer to the end, I travel in the circle, nearer and nearer to the beginning.”

Yalom first gained fame among psychotherapists for The Theory and Practice of Group Psychotherapy. The book, published in 1970, argues that the dynamic in group therapy is a microcosm of everyday life, and that addressing relationships within a therapy group could have profound therapeutic benefits outside of it. “I’ll do the sixth revision next year,” he told me, as nurses came in and out of the room. He was sitting in a chair by the window, fidgeting. Without his signature panama hat, his sideburns, which skate away from his ears, looked especially long.

Although he gave up teaching years ago, Yalom says that until he is no longer capable, he’ll continue seeing patients in the cottage in his backyard. It is a shrink’s version of a man cave, lined with books by Friedrich Nietzsche and the Stoic philosophers. The garden outside features Japanese bonsai trees; deer, rabbits, and foxes make occasional appearances nearby. “When I feel restless, I step outside and putter over the bonsai, pruning, watering, and admiring their graceful shapes,” he writes in Becoming Myself.

Yalom sees each problem encountered in therapy as something of a puzzle, one he and his patient must work together to solve. He described this dynamic in Love’s Executioner, which consists of 10 stories of patients undergoing therapy—true tales from Yalom’s work, with names changed but few other details altered. The stories concentrate not only on Yalom’s suffering patients but also on his own feelings and thoughts as a therapist. “I wanted to rehumanize therapy, to show the therapist as a real person,” he told me.

That might not sound like the stuff of potboilers, but the book, which came out in 1989, was a commercial hit, and continues to sell briskly today. In 2003, the critic Laura Miller credited it with inaugurating a new genre. Love’s Executioner, she wrote in The New York Times, had shown “that the psychological case study could give readers what the short fiction of the time increasingly refused to deliver: the pursuit of secrets, intrigue, big emotions, plot.”

Today, the people around the world who email Yalom know him mostly from his writing, which has been translated into dozens of languages. Like David Hasselhoff, he may well be more of a star outside the United States than at home. This likely reflects American readers’ religiosity and insistence on happy endings. Mondays with Yalom are not Tuesdays With Morrie. Yalom can be morbid, and he doesn’t believe in an afterlife; he says his anxiety about death is soothed somewhat by the belief that what follows life will be the same as what preceded it. Not surprisingly, he told me, highly religious readers don’t tend to gravitate toward his books.

Yalom is candid, both in his memoir and in person, about the difficulties of aging. When two of his close friends died recently, he realized that his cherished memory of their friendship is all that remains. “It dawned on me that that reality doesn’t exist anymore,” he said sadly. “When I die, it will be gone.” The thought of leaving Marilyn behind is agonizing. But he also dreads further physical deterioration. He now uses a walker with tennis balls on the bottoms of the legs, and he has recently lost weight. He coughed frequently during our meeting; when I emailed him a month later, he was feeling better, but said of his health scare, “I consider those few weeks as among the very worst of my life.” He can no longer play tennis or go scuba diving, and he fears he might have to stop bicycling. “Getting old,” he writes in ​Becoming Myself, “is giving up one damn thing after another.”

In his books, Yalom emphasizes that love can reduce death anxiety, both by providing a space for people to share their fears and by contributing to a well-lived life. Marilyn, an accomplished feminist literary scholar with whom he has a close intellectual partnership, inspires him to keep living every bit as much as she makes the idea of dying excruciating. “My wife matches me book for book,” he told me at one point. But although Yalom’s email account has a folder titled “Ideas for Writing,” he said he may finally be out of book ideas. Meanwhile, Marilyn told me that she had recently helped a friend, a Stanford professor’s wife, write an obituary for her own husband.* “This is the reality of where we are in life,” she said.

Early in Yalom’s existential-psychotherapy practice, he was struck by how much comfort people derived from exploring their existential fears. “Dying,” he wrote in Staring at the Sun, “is lonely, the loneliest event of life.” Yet empathy and connectedness can go a long way toward reducing our anxieties about mortality. When, in the 1970s, Yalom began working with patients diagnosed with untreatable cancer, he found they were sometimes heartened by the idea that, by dying with dignity, they could be an example to others.

Death terror can occur in anyone at any time, and can have life-changing effects, both negative and positive. “Even for those with a deeply ingrained block against openness—those who have always avoided deep friendships—the idea of death may be an awakening experience, catalyzing an enormous shift in their desire for intimacy,” Yalom has written. Those who haven’t yet lived the life they wanted to can still shift their priorities late in life. “The same thing was true with Ebenezer Scrooge,” he told me, as a nurse brought him three pills.

For all the morbidity of existential psychotherapy, it is deeply life-affirming. Change is always possible. Intimacy can be freeing. Existence is precious. “I hate the idea of leaving this world, this wonderful life,” Yalom said, praising a metaphor devised by the scientist Richard Dawkins to illustrate the fleeting nature of existence. Imagine that the present moment is a spotlight moving its way across a ruler that shows the billions of years the universe has been around. Everything to the left of the area lit by the spotlight is over; to the right is the uncertain future. The chances of us being in the spotlight at this particular moment—of being alive—are minuscule. And yet here we are.

Yalom’s apprehension about death is allayed by his sense that he has lived well. “As I look back at my life, I have been an overachiever, and I have few regrets,” he said quietly. Still, he continued, people have “an inbuilt impulse to want to survive, to live.” He paused. “I hate to see life go.”

Complete Article HERE!

‘Money, work, family, friends: the same things keep coming up’

– Irish nurse on the regrets of people on their deathbed

Night nurses provide crucial support in the final hours of a patient’s life at home. The job is challenging but enriching.

Night nurse Mary Kavanagh: “We fall into the routine of the patient”

By Tanya Sweeney

To the uninitiated, Caroline Webb’s job may feel like a hugely difficult, almost unpleasant one. And even to Meath-based Caroline herself, the idea of returning to work as a night nurse, after years of working in other sectors, gave her slight pause for thought initially.

Caroline qualified as a nurse originally in 1991, but explored different career paths before a friend working in hospice care told her three years ago of a night nurse job available through the Irish Cancer Society.

“I first thought, ‘not a hope, I couldn’t go back into nursing again’,” she admits. “But since I got the job, I haven’t looked back. I can barely tell you how important, and how rewarding, this work is.”

In fact, speak to any of the night nurses who work alongside the Irish Cancer Society, and they are unanimous on one thing. Despite working in various outposts of nursing and care, this work is among the most profound and enriching jobs they have ever had.

That’s not to say that the work is easy. Night nurses tend to work an 11pm-7am shift in the home of a patient requiring end-of-life care. Everyone in the country, irrespective of location or financial circumstance, is entitled to 10 nights of care via the Irish Cancer Society (the service is accessed through the patient’s palliative home care team, or GP). The night nurse then feeds information back to the palliative care team to ensure continuity in care.

Chief among the nurses’ duties is to address the needs of the patient, from pain management and symptom control, and, where possible, ensure a pain-free and dignified death.

Often, the nurse on duty can end up talking with the patient on their deathbed in the quiet of nighttime.

“Usually, the same regrets keep coming up,” explains Webb. “They regret not keeping up contact with family and friends, not living life in the moment, and being worried about money when they have no need to worry about money.

“Sometimes a patient will ask us if they are going to die,” she adds. “We have to be quite truthful with people if they ask us. Often we say, ‘what do you think yourself?’ How do you feel?’

“In a lot of cases, they’re either testing us, or they realise that something is going to happen. We have to say to the family too, if the person isn’t already aware that they are going to die, and they ask us about it, we have to answer truthfully.”

As one of the most emotionally heightened and sensitive outposts of the nursing profession, plenty of compassion, emotional intelligence and tact is required for the job at hand. Life experience – and often, prior experience with loss – might also put a nurse at an advantage.

“I honestly don’t think really young people would be able for this,” observes Webb. “I don’t think someone in their twenties could walk into this situation and know what to say, or more importantly, what not to say.

“I’ve experienced the death of my own mam, and you know that people are so shocked when death finally does happen. You can relate to them and somehow tell them, without really saying it outright, that you’ve been though this yourself and can understand completely.”

Night nurses are there to provide support, reassurance and guidance to family members in their darkest moments.

“It’s an holistic, multi-faceted approach that we use,” says Lucan-based Mary Kavanagh, who has been a night nurse for a year.

“If you go into a home, it’s not like, ‘Superwoman or Superman is here’. We are doing things their way, and while a patient in hospital might need to fall into the routine of the ward, we fall into the routine of the patient. What I hope I achieve is to take the fear of dying and death away from the family and the patient.”

Though family members are only too happy to carry out the final wish of their loved one to die at home, looking after a dying patient outside of a hospital setting is daunting, and often harder than anyone could have anticipated.

“Most people want to be at home for their final days,” says Kavanagh. “After all, where is our favourite place to be, only with our own family and our own animals? Still, it’s a huge decision for a family, and what we offer is, they say, an invaluable service.”

When Sylvia Coyle spent her final days in the family home in Kildare surrounded by loved ones, the family benefited greatly from the Irish Cancer Society Night Nurse service.

“It was mum’s wish to stay at home with us and the Irish Cancer Society’s Night Nurse enabled her to do that,” says Sylvia’s daughter, Alison.

“As well as caring for her, our night nurse Geraldine talked to mum about her worries, which was a great comfort to her. Geraldine looked after the whole family – guiding us through a very difficult situation. She was invaluable to us. This is a vital service for any cancer patient who wants to be at home during their final days – we simply couldn’t have managed without it.”

Only when the nurses pass the threshold of the house do they know how the shift will unfold. Sometimes, the house can be packed with extended family and neighbours. Other times, the patient might have been in discomfort for many hours.

“Very often, you’ll see the sheer relief on a family member’s face when you get to the door,” says Louth-based Carol Adams, who has worked in nursing for 25 years. “They’re just so happy that someone can care for their loved one, and they might be able to get the rest needed to function for the next few days. The families we work with are so resilient and strong for their loved one. The love of a family in this situation is truly amazing to witness. It’s very special.”

Many people hope for, and often expect, a peaceful death for their loved one. Unfortunately, reality can get in the way, and a person’s final days can often be fraught with shock and unexpected upset. It can lead to challenging moments for everyone involved.

“One very distressing thing that can happen is what we call ‘terminal agitation’,” explains Webb. “It can happen with very young people when they don’t want to die and they fight with everything they can. They won’t settle and often have to be sedated. It can be very upsetting.”

Maynooth-based night nurse Emer McGearty says that trying to encourage a peaceful and relaxing environment in the home can help with the unexpected agitation of patients.

“It can be very shocking for a family to witness that,” she agrees. “You don’t want their last memories to be of their loved one being so unsettled. You want their memories of them being relaxed and at ease.”

“The other thing that can be challenging is when family members may not be on the same wavelength as we would be about things like medication,” notes Webb.

“You might also be dealing with family dynamics and it can create a bit of tension. In this case, as a nurse, you can’t take part and you can’t take sides.”

McGearty says that a good night nurse will need to be in the right frame of mind heading into a shift.

“You have to leave personal or family issues at the door and make yourself totally available for the family and the patient,” she says. “Likewise, you need to be able to switch off after a shift and to not bring it home with you.”

Yet naturally, some patients linger on in the memory.

“Every case is sad, but it’s particularly sad if it’s a young person, or a young person with young children,” notes McGearty. “One or two people really stick in my mind – there was one young man in his twenties who had a toddler, and another lady my age with breast cancer, who had children the same ages as my own.

“You also hear a lot of people who were in good health their whole lives, and maybe put off having a holiday or travelling until retirement, but were diagnosed with cancer soon after they retired. It does put everything into perspective, and make you really appreciate what you have.”

The service is funded almost entirely by public donations to the Irish Cancer Society. Boots Ireland and the Irish Cancer Society have recently launched their annual ‘5K Walks for Night Nurses’, taking place in Dublin and Cork on August 17.

To date, Boots employees and customers have raised over €1.3m to fund the service, which adds up to over 3,715 nights of nursing care for families around the country.

In 2016, the initiative introduced Honour Tags, which are on sale in Boots stores for €2. Customers can purchase a tag in honour of someone who has passed away from or survived cancer. “The service really isn’t there without the help of the public,” says Kavanagh. “At the time my father passed away, I didn’t know the service was available, and I really wish we had.”

Complete Article HERE!

What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

On death and dying: Do Jews have a choice?

by Martin J. Raffel

There is an old saying, attributed to Benjamin Franklin, that “in this world nothing can be said to be certain, except death and taxes.” Though loathe to get into discussion of the latter, said founding father was obviously correct about the former. At some point, all of us will face an end-of-life situation, and for those of us in New Jersey, the state might soon give us some degree of control over when and how we choose to die.

I refer to the Aid in Dying for the Terminally Ill Act, which is currently pending in the New Jersey state legislature. This legislation would allow physicians to provide life-ending medication to mentally competent patients who are at least 18 and have a terminal illness with a prognosis of, at most, six months to live. The patients must be able to self-administer the medication. Similar measures have passed in California, Montana, Vermont, Colorado, Hawaii, Washington State, and Washington, D.C. — all modeled on Oregon’s Death With Dignity Act enacted in 1997, the first of its kind.

“This option has brought sound public policy and improvements in end-of-life care to the states where it is permitted medical practice, and the time is now to bring the same quality of care to the people of New Jersey,” said Corinne Carey, N.J. campaign director of Compassion and Choices of New Jersey, Inc., the nonprofit, educational organization leading advocacy efforts. Sixty-three percent of the state’s residents support the measure, according to Carey.

I wondered whether there was a Jewish approach to what is sometimes referred to as physician-aided suicide. Not surprisingly, it depends on whom you ask.

I spoke with David Glicksman, an Orthodox rabbi with long-time pulpit and chaplaincy experience who currently serves on the Joint Chaplaincy Commission of the Jewish Federation of Greater MetroWest NJ. While he empathizes with the suffering of families, Glicksman said that because halacha (Jewish law) — which sees human life as sacred, clearly forbids suicide or assisting in suicide— he would oppose the pending legislation.

That said, “passive euthanasia,” the withholding of life-extending measures, as opposed to taking affirmative steps to end a life, is not necessarily a halachic violation. For example, he said, while actively removing a feeding tube or respirator would be unacceptable, one might not be required to replace a tube once it is removed.

But “if a patient asked me whether Jewish law permitted him or her to intentionally starve to death to end their suffering, I would have to answer in the negative.” Still, Glicksman said, he would “without judgment…comfort that patient as part of my pastoral responsibilities.”

On the other hand, Richard Address, a Reform rabbi and the director of Sacred Jewish Aging — a forum that promotes discussion about the revolution in longevity for baby boomers and their families — supports the legislation. “As a non-Orthodox rabbi, I view halacha as an evolutionary process, not rooted in an act of divine revelation,” he said. “Its genius is that it is a product of the social, political, economic, and religious context of the day.”

Address understands the portion of the verse in Deuteronomy 30:19 which states, “You shall choose life, so that you and your offspring will live,” to mean that “the ultimate decision of when to end life rests with me.” This is not a spur-of-the-moment decision, he said. “It’s a product of a lifetime and is driven by three factors: autonomy, the relationship with self; the impact of life-extending medical technology on quality of life; and one’s own spiritual beliefs.”

I speculated, and Address agreed, that it’s the baby boomer generation driving the momentum behind more liberal aid-in-dying laws. This is the generation that brought American society the sexual revolution and women’s liberation. Now that our parents’ generation is rapidly passing into history, we boomers have reached the ‘on deck’ circle and we’re aiming to change the culture on death and dying.

Rabbi Marc Kline of Monmouth Reform Temple — citing the 14th-century Catalonian Talmud scholar Rabbeinu Nissim, and Jewish bioethicist J. David Bleich — said, like Glicksman, that Jewish law prohibits taking active steps to hasten death. But their teachings, Kline said, support the option of praying for death as relief from an unbearable situation.

Stephanie Dickstein, speaking from experience — the Highland Park resident and Conservative rabbi works with older adults and end-of-life and bereavement issues — said, “It is not routine for families to be given emotional or practical preparation for the realities of caring for a loved one whose illness is reaching a terminal stage far enough in advance.” She does not believe the only choice is either using medical technology to extend life at all costs or allowing doctors to end life. “We can have policies and practices which make it the norm to support quality of life and comfort in the final chapter of life, rather than actively involving physicians in prescribing substances to end life.”

I also spoke with Jeff Feldman, advocacy coordinator of the North Brunswick-based New Jersey chapter of the National Association of Social Workers. His organization endorses the legislation, he told me, because “as a profession, social workers believe strongly in the value of self-determination for our clients. An individual with a terminal illness should be able to choose the time and method of their passing, rather than being placed at the mercy of their illness.” Social workers, he explained, often are the professionals with clients and their families during emotional end-of-life situations. “Hospice and palliative-care social workers…are called upon to non-judgmentally lay out for the client all of the available options,” and from his perspective, the more options available to the client, the better.

Just where do I stand? I’m with Address and the social workers in support of the pending legislation. Obviously, I agree with Dickstein that we should have a more effective palliative care system. But at the same time, not seeing myself as bound by a strict interpretation of halacha, I want a greater variety of end-of-life choices. That’s on a personal level.

On a societal level, I don’t think those whose religious or ethical beliefs regard the ending of life as immoral regardless of the circumstances should dictate our public policy.

No one likes to have these discussions, but, inevitably, such difficult medical and ethical decisions still have to be made. Whether you support or oppose this legislation, we all would be well served to thoroughly explore these issues not only with our loved ones, but in appropriate communal forums, as well.

Complete Article HERE!

What the Living Can Learn by Looking Death Straight in the Eye

By Parul Sehgal

“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”

Book reviewers, I’m afraid, have played their part.

The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”

Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?

Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.

But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”

Sallie Tisdale

It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.

This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).

To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”

“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.

Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”

Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”

Complete Article HERE!

‘Living While Dying,’ Cathy Zheutlin’s film explores end of life

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Filmmaker Cathy Zheutlin, right, with her mother, Jonnie Zheutlin. Cathy Zheutlin was inspired to make the film ‘Living While Dying,’ when her mother’s partner was diagnosed with terminal cancer.

“It wasn’t loss that triggered this, it was curiosity,” says filmmaker Cathy Zheutlin of her new documentary, “Living While Dying,” a short film whose subtitle reads: “A story of life. A story of death. Finding joy in the journey.” Zheutlin, who stumbled upon the good fortune of having two parents alive in their 90s, became fascinated with the idea of mortality, an inevitability we all face, despite it being hidden from view — and polite conversation, for that matter. Her exploration of the topic extends an invitation to viewers, one that hinges on conversation as the most necessary component surrounding mortality and the end-of-life choices that arise as a result. After having made its debut in Ashland and Portland, Oregon, where the filmmaker and her mother reside, Zheutlin’s film is making the rounds in the northeast; it will be screened Wednesday, June 6, at 7:30 p.m. at Kimball Farms Life Care in Lenox.

The inspiration for Zheutlin’s film came when her mother’s partner, Clair, learned he had terminal cancer. “We had a dying man in the living room,” she recalls in the film’s trailer. “I am a filmmaker so I asked Clair if I could film him; he said ‘yes,’” continues Zheutlin. This impetus, coupled with what she calls a desire to push the envelope of consciousness, led Zheutlin and her husband, Edis Jurcys, a brilliant photographer, to embark on the telling of these stories. Their exploration took them to Australia where they met a death walker, and to Bali where they saw a mass cremation. When the pair learned that dear friend Don was dying back at home, Zheutlin took “a deep dive into reflecting on death and grappling with the meaning of life.” The result is “Living While Dying.”

“This is territory that we cannot avoid,” said Zheutlin, whose work stemmed from a simple observation on her part: “So many people have so much to say [and yet] the conversation is mostly not happening.” The documentary project, a full five years in the making, catapulted her back into the world of professional filmmaking after a 32-year hiatus. She decided to pick up her camera and film four friends with terminal illnesses who chose to live out their days in hospice care at home. What ensues is a bold discussion of the inevitable, and one filmmaker’s attempt to remove the pall from a subject that, if considered from a different perspective, is but the final developmental stage in life — one to be revered and celebrated in much the same way as all those that precede it.

Jonnie Zheutlin’s partner, Clair Killen, near the end of his life.

“You can’t destroy energy, that became really clear to me,” recalls Jonnie Zheutlin of her own experience walking through end of life with her partner of 12 years, Clair. “I don’t actually fear dying,” is the elder Zheutlin’s stance on the subject. Jonnie took an OLLI class in Oregon called “Talking About Dying as If It Could Happen to You,” which she found to be both fascinating and on target — not to mention independent of her daughter’s project. This, coupled with Clair’s death, urged her on to further explore the subject. She recounts the first time Clair showed up, shortly after he died; she was looking out the window and, from the trees, this tape kept coming out. At first Jonnie thinks it’s a kite; she wonders what’s going on and then she has a realization: “The way it moved, it moved the way Clair danced — it was so clear, but I was frantic, I wanted someone to validate it,” she explains. From these experiences, a conversation between the mother-daughter pair has ensued.

“The advantage of having conversations when we are healthy is that, when we are in crisis, it’s not the time to begin thinking about all the various choices. And there are a zillion choices,” says Zheutlin. It’s the pre-thinking to support us along the way that Zheutlin hopes will inspire others to embark on a dialogue that, for many, is not welcome. In the documentary, Jonnie and her daughter model a conversation (Zheutlin is the film’s narrator) while Jonnie sits in a coffin. Zheutlin was conscious of her choice to model the conversation with her mother — who is very comfortable talking about her own EOL choices — in the presence of an image that was not terribly stereotypical. She felt the iconic images of individuals contemplating death while meandering through a cemetery to be too cliché. “That step of taking something scary and foreign and only associated with grief” proved liberating in her portrayal. She goes on to clarify: “I don’t think we should ever disassociate grief and death — it’s just that it’s not the only part [to be emphasized] because it’s natural. We somehow need to integrate it,” Zheutlin explains.

The film arises out of a grassroots movement — with titles running the gamut — that revolves around reclaiming death in much the same way baby boomers reclaimed birth. “They said, ‘let’s have our babies at home, [as] birth is not a medical event.’” Well, death isn’t necessarily a medical event, either. “Death is a natural thing that happens at the end of every single life. It’s 100 percent going to happen,” Zheutlin reminds her audience. But we don’t get to see the images of nonmedicalized death; this is where Zheutlin comes in. “Living While Dying” offers viewers a glimpse of what death looks like when one goes the nonmedical route and chooses hospice at home. “My experience is not prescriptive or comprehensive; everybody’s experience is going to be unique and important and worthy of being uplifted,” Zheutlin said. “I’m not promoting an ideology, I’m promoting a conversation,” she says of her intensely personal approach. One thing is certain: Death is somehow less scary after viewing this film. “It’s not articulated, but it’s felt,” Zheutlin explains. As for Jonnie Zheutlin’s last word on the topic? “I used to have cement in my mouth,” she says, borrowing a term she once heard a child use in her days as a therapist. “I am learning to verbalize; it’s taken me almost 90 years to learn to use my voice,” she jokes, adding “Thank God I’ve lived long enough to do that!”

Zheutlin’s film has been hailed as a brave and honest immersion in a difficult topic. In her director’s statement, she cuts straight to the chase: “Death is a teacher. Many of us are scared of death. We feel unprepared both for our own deaths and the deaths of people (and animals!) we love. Our associations with death are morbid, dark, cold, depressing, and laden with grief and pain. So we do not talk much about death. In modern times, we have medicalized the end of life, and disconnected it from nature. In trying to prolong life by any means necessary, we only succeed in keeping death shrouded in darkness. By keeping our distance from death, cloaking it, hiding our eyes from it, we actually lose touch with a sacred phase of life. Because, as we all know, death is a part of life — for all of us.”

Director-producer Zheutlin has been principal cinematographer on award-winning PBS documentaries including “The Life and Times of Rosie the Riveter,” “The Other Philadelphia Story” and the 1982 Academy Award nominee “See What I Say.” Her 1986 documentary “Just One Step: The Great Peace March” led to a co-production with Soviet TV about the first Soviet-American peace walk. In short, she has spent her career making films that explore consciousness and encourage progressive change. Her documentary “Living While Dying” was an official selection for the THIRD ACTion Film Festival, which celebrates aging and older adults while helping to create an age-positive culture shift. For more information, visit www.livingwhiledying.org.

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My Father’s Face

One of my clearest childhood memories is of my father washing his face. Forty-five years later, I would be washing him.

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[O]ne of my clearest childhood memories is of my father washing his face. He did so in a most particular way, with a vigor and thoroughness that made me feel somehow cleaner for simply having watched him. In the mornings, while he got ready for the workday, I’d sit on the toilet seat brushing my teeth as he went through the various stages of his ablutions. This was in the early nineteen-seventies, when we lived in a low-end red brick rental complex near the Sound in New Rochelle. Our second-floor apartment was a small two-bedroom with a living-dining area and a worn galley kitchen. It had one cramped bathroom, its dulled chrome fixtures speckled with rust and the tiles coming loose in spots, but even my mother wasn’t fretting too much. We were just a couple of years landed in the country, and this was as suitable a place as any. My kid sister and I loved the playground and grassy field that the apartment overlooked—you could check who was out there and sprint down in a breath—and my mother appreciated the southeast-facing windows, as drafty as they were, for the brightness they let in. My father was settling into his first doctoring position, as a staff psychiatrist at the Bronx V.A. hospital, and although extra money was scarce, our family was moving up in the world.

My father would turn on the taps until the water ran warm and then liberally splash himself as he bent over the basin, sprays of water dotting me. Like seemingly all Korean men back then, he wore a ribbed tank top beneath his dress shirts, and the shoulder straps would get a little damp as he wet his face and ears and neck. He built up a load of soapy lather and got to work, roughly polishing the sides of his nose and his cheeks in a circular motion and radiating outward to his ears, using his index fingers and thumbs to scrape the nooks and whorls. Making a rake of his fingers, he scoured behind his ears, then shifted to the back of his neck, tilting his head slightly to each side to bare it for forceful soaping. Next, he rotated the bar of Ivory in his hands to replenish the lather, which he needed for cleaning the rest of his face—his eyelids and his temples and his angling, broad forehead, unwrinkled then, going foamy and white. Sometimes he liked to frighten me by turning quickly and opening his eyes wide and flaring his lips, this snowy beast, and then smile when I began to whimper, and although my heart detonated each time, I liked it, too, for the way it was him and not him and him again, in the span of a gasp.

He’d wash away the suds with great handfuls of water, dousing himself while briskly rubbing his skin once more, and you would wonder why he didn’t just take a shower instead. Maybe it was because he was a refugee during the war and grew up in the harsh times afterward, but bathing every day was a habit neither he nor my mother had yet developed. I can imagine them both waiting in line for their brief turn at a cold-water spigot, poised to clean themselves as swiftly and as fully as they could.

On the weekends, I often showered with my father, and he showed me how to rub tiny dark rolls of grime from my forearms and from the scallops of my heels, and then scrubbed my shampooed scalp so hard it would tingle long afterward. My favorite part was when he dried my hair, his method not to blot and rub, as you normally would, but to hold each end of the smallish towel and whip the middle back and forth against my head to flick away the dampness. No plush bath towels for us.

Forty-five years later, I would be washing him, Parkinson’s having rendered his body stiff and frail, his mind loitering elsewhere. With both hands he held the shower bar as I sponged his flanks and hosed him off with the sprayer. I washed his face, too, but with my hands, if more gently than he probably wanted. I tried not to get soap in his eyes. When he was dying, I was far away and couldn’t get to him in time. The hospital morgue staff let me see him. He lay on a gurney with a sheet drawn up to his chin. There was his mouth, in a slight pinch. His sunken cheeks. His forehead was cold wood against my lips. He smelled sterile, almost clean. It wasn’t him. ♦

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