Advice for the Dying (and Those Who Love Them)

A Practical Perspective on Death

Sallie Tisdale

• Publisher: Allen & Unwin
• Year: 2018
• Print ISBN:
  9781760632717
• eBook ISBN:
  9781760639891
• Topic: Theology & Religion
• Subtopic: Buddhism

Award-winning writer and nurse Sallie Tisdale offers a lyrical, thought-provoking yet practical perspective on death and dying in this frank, direct and compassionate meditation on the inevitable.
_______________________________________ From the sublime (the faint sound of Mozart as you take your last breath) to the ridiculous (lessons on how to close the sagging jaw of a corpse), Tisdale leads the reader through the peaks and troughs of death with a calm, wise and humorous hand. More than a how-to manual or a spiritual bible, this is a graceful compilation of honest and intimate anecdotes based on the deaths Tisdale has witnessed in her work and life, as well as stories from cultures, traditions and literature around the world. Tisdale explores all the heartbreaking, beautiful, terrifying, confusing, absurd and even joyful experiences that accompany the work of dying, including: A good death: What does it mean to die 'a good death'? Can there be more than one kind? What can I do to make my death, or the deaths of my loved ones, good? Communication: What to say and not to say, what to ask and when, from the dying, loved ones, doctors and more. Last months, weeks, days and hours: What you might expect, physically and emotionally, including the limitations, freedoms, pains and joys of this unique time. Bodies: What happens to a body after death? What options are available to me after my death, and how do I choose - and make sure my wishes are followed? Grief: 'Grief is a story that must be told, over and over... Grief is the breath after the last one.' Beautifully written and compulsively readable, Advice for the Dying offers the resources and reassurance that we all need for planning the ends of our lives. It is essential reading for all of us.

1

Dangerous Situation

Right now: imagine dying. Make it what you want. You could be in your bedroom, on a lonesome hill, or in a beautiful hotel. Whatever you want. What is the season? What time of day is it? Perhaps you want to lie in sweet summer grass and watch the sun rise over the ocean. Imagine that. Perhaps you want to be cuddled in a soft bed, listening to Mozart—or Beyoncé. Do you want to be alone? Is there a particular hand you want to hold? Do you smell the faint scent of baking bread—or Chanel No. 19? Close your eyes. Feel the grass. The silk sheets. The skin of the loving hand. Hear the long-held note. Dance a little. Smell the bread. Imagine that.

I have never died, so this entire book is a fool’s advice. Birth and death are the only human acts we cannot practice. We love our murder mysteries, and how we love our video games, but death looms ahead as a kind of theory. In Victorian times, children were kept away from anything regarding sex or birth, but they sat at deathbeds, witnessed deaths, and helped with the care of the body. Now children may watch the birth of a sibling and never see a dead body. But neither do most adults; many people reach the end of their own lives having never seen a dying person.

One day when I was seven, my mother sat at the dining table and cried all afternoon, even though it was almost Christmas. My father told me that my grandfather had died. I wasn’t sure what that meant. I liked Grandpa, who laughed a lot and took his dentures out at the dinner table to make the kids scream. My mother started packing a suitcase. She was going to the funeral, he said. I didn’t know that word, but if my mother was going out of town alone, it had to be something special. “Can I go, too?” I asked. “No,” he said, sharply. I was not allowed. Funerals were not for children. No one explained, and I never saw Grandpa again.

As an adult, I’ve tried to see death as clearly as I can. This was less a deliberate choice than the natural path my life took. Perhaps the long-ago echoing mystery of my grandfather’s disappearance had something to do with it. Several paths have woven around each other to form my life, and, seen as a braid—as a whole life, and not pieces—I see the similarities, the shared focus. As a writer, I have to be willing to investigate myself and the world without flinching. As a nurse and an end-of-life educator, I must be willing to step inside the personal world of others, to step inside secrets, hold another’s pain. I’m a Buddhist practitioner and teacher, and lead workshops about preparing for death from a Buddhist perspective. This practice requires a ruthless self-examination and a deep study of how I create my world. Together, these strands have given me a measure of equanimity about the inevitable sea of change that is a human life. They have fed each other and taught me to tolerate ambiguity, discomfort of many kinds, and intimacy—which is sometimes the most uncomfortable thing of all. In thinking about death in all its ramifications, these lessons are a great help, and death is a help in deepening all these lessons. I know what to do at the bedside of a dying person, and I know a lot of practical information about what works when we are preparing to die or to lose someone we love. The most important experience I’ve had is one most of us share: the deaths of people I love. I know grief.

I can depend on these varied skills to meet a new situation the way an electrician can read wiring in a house he’s entering for the first time. But even though death is not unfamiliar to me, I don’t want to sound as though dying and death are ordinary. What all these things have taught me is that dying and death will always be extraordinary.

When he was dying, the contemporary Buddhist teacher Dainin Katagiri wrote a remarkable and dense book called Returning to Silence. Life, he wrote, “is a dangerous situation.” It is the frailty of life that makes it precious; his words are suffused with the blunt fact of his own life passing away. “The china bowl is beautiful because sooner or later it will break. . . . The life of the bowl is always existing in a dangerous situation.” Such is our struggle: this precarious beauty. This inevitable wound. We forget—how easily we forget—that love and loss are intimate companions, that we love the real flower so much more than the plastic one, love the evanescence of autumn’s brilliant colors, the cast of twilight across a mountainside lasting only a moment. It is this very fragility that opens our hearts.

Funerals are not for children. We learn by details, by the tiniest word or grimace. I grew up in a ranching and logging community, and my father was a firefighter. People died in the mills; people died in fires. People died on the rivers and in the mountains and on their ranches. Accidents happened. When I was growing up, we had a primitive cabin in the forest where my family would spend weeks each summer. I learned to fish for my breakfast and eat trout whole, the head and tail in my hands, and examined the little dead animals I would find here and there. From a young age I was drawn to an inquiry of bodies, of living things, which inevitably meant a study of predation and decay. I kept all kinds of pets: lizards and snakes I caught in the hills, chameleons and praying mantises I sent for in the mail, and once a baby alligator I was given. I had to feed my pets, and most preferred live food, so I fed them crickets, mealworms, grasshoppers. I liked grasshoppers and even kept them as pets sometimes, but I happily fed them to my mantises. The chameleons always died; the mantises always died. Their seasons are short. The alligator died quickly; I had no idea what it really needed. I tried to embalm it, with limited success—just good enough for a memorable presentation at show-and-tell. When one of my turtles died, my brother and I buried it in my mother’s rose bed to see if we could get an empty turtle shell, because we knew this would be quite a good thing to have. But when we dug it up a few weeks later, there was almost nothing left. The shell that had seemed so solid and permanent turned out to be another kind of flesh, and its decay left me with a strange, disturbed feeling. The earth had proved to be fiercer than I had guessed. Grandpa died. Our dog died. I saw my first dead body at the age of fourteen when I attended the funeral of a classmate, the first of several peers to die over the next few years. Funerals are not for children, I was told, but that didn’t have anything to do with my exposure to death.

In my sophomore year in college, I took Anatomy and Physiology. It was a yearlong course intended to fulfill the requirements for premed. In the lab, we worked with four cadavers that had been dissected in different ways by senior students. The faces were always covered. Dr. Welton, a tall, bald, solemn man with a photographic memory, tolerated no jokes. Our hours in the laboratory were quiet and serious. We carried our worksheets from one table to the other, tracing lines, lifting tags, examining the exquisite textures, the lovely complications of bodies. I was seventeen, fascinated by biology, and I found anatomy to be a great wonder. Each of these bodies was more or less the same in every detail, so similar that detailed maps to the tiniest structures could be made. Yet each of these bodies was unique as well. And all this complex machinery worked. Or had worked, which was part of the lesson.

I made myself a nuisance in the A & P lab, and then in Dr. Welton’s office, showering him with questions until he gave me extra work just to shut me up. In the second term, I was allowed to do dissection. This meant letting myself into the locked cadaver laboratory after classes. The room was always cool and quiet, scented with formaldehyde and the faint leathery smell of the bodies. The lower windows were covered in paper to keep out prying eyes, and the room was lit with the dissipated sunshine of late afternoon. Dr. Welton assigned me to the newest body, where dissection had just begun, and specifically to the left hand. He wanted tendons and ligaments exposed. Day after day, I took my tools and sat alone beside the table and carefully opened the hand, following diagrams in a thick book. I did a good job. I gradually came to understand that hand, and all hands, in a way that remains with me now. But I came to understand something else as well. One day, I had almost finished exposing the tendons. I found that by pulling on them gently, I could move the fingers one by one. I had never been uneasy in that room, but that day I looked up the length of the body, naked except for the covered face, and all at once I was covered in goose bumps.

Dissection is more a psychological experience than an intellectual one for many people. I found it to be both. I remember more about how it felt to be with the dead, to touch and open a body, to see what happens to bodies, than any details about the insertion of the latissimus dorsi muscle. (I learned that, too, in a way I could never have learned from books.) Working with cadavers makes it clear what death is. A subject becomes an object. A person becomes a body. And, miraculously, turns back: this body, this firm, immobile object, is, was, a person, a warm, breathing person. A body is not an ordinary object—can never be an ordinary object. This particular object had once been awake.

With a jolt, I realized that what I was cutting apart had been a living hand, just like mine; that it had been pliant and animated. It had held a pen, shoveled dirt, bathed a child, stroked someone’s hair. That it was like my precious hands, which until that moment had simply been part of me. Alive. I realized, This man is like me. I already knew that this body was like my body; I could label its parts. But suddenly I knew that this man was like me. And that I would be like this man.

We share a grand social agreement about mortality. We choose not to notice, if we can. I was born in the United States in 1957, the largest cohort of baby boomers. We’ve been a most fortunate generation, and also one of the most delusional. We are energetically trying not to be as old as we are, to not look old, feel old, and, most of all, to not be perceived as old. The worship of an ideal, youthful immortality is nothing new: the Greeks were obsessed with it, and perhaps all humans are, to some extent. But my generation seems both more protected from the fact of aging and less resigned to it. We spin our mornings and evenings away, concentrating on the body, our body, my body, without actually looking very deeply at body and all it means. We pretend that what we absolutely know to be true somehow isn’t true. But the nasty surprises can’t really be avoided: the midget varicosities, the bald spots, the speckling, the softening—in Emerson’s words, “Nature is so insulting in her hints & notices.” I am sometimes confounded by this generation of my peers that seems to have surrendered to a marketplace of diets, remedies, visualizations, trademarked mindfulness for every trouble, medication for every mood, as though . . . what? What do we think will happen instead?

I feel lucky to have had early encounters with the dead, even though I sought them out for my own inchoate reasons. A few years after the cadaver lab, the bodies at rest became living bodies again when I started working as an aide in a large nursing home. Many of the people in my family have lived long lives, well into their nineties. Perhaps because I had grown up knowing one set of great-grandparents, all my grandparents, and many elderly aunts and uncles, I had not learned to be afraid of the old. Their slumping, softening bodies with white hair, matronly bosoms, and grizzled chins were familiar to me. They just were what they were: different from me, very different, but not bad. Not wrong and not hidden, just different.

I watch nurse’s aides now and don’t know how they do it; the labor is hard and long and pays a fraction of what you think an enlightened society would pay for such important work. I loved that job: I had a uniform, my first paycheck; I was in love and filled with boundless energy. Part of what I was learning was the culture of a profession, the vocabulary and belief system. At first I was learning the particular skills of caring for fragile people: the rituals of the infirm. There is a right way to make a bed around a person, to bathe a person who cannot help you, to move a person in and out of a wheelchair when she can’t stand. I watched a person die for the first time in that job and helped to wash her body, and learned there is a right way to do that. I don’t remember any moment of clarity in those years, of starkly knowing that this old man, that tiny, wrinkled woman, had once been like me. I didn’t wonder whether I would one day be like them any more than I thought I might be like my Aunt Lois. I was smooth-skinned and full of stamina, and I liked the work, and didn’t think much beyond that.

When I knew that I was going to be a writer, I knew I wanted a regular job to support myself, one that had nothing to do with writing. Nursing made sense. The hours were flexible, the pay was good, and I could work part-time. The surprise wasn’t how much harder the training and job turned out to be than I expected: such is the amateur’s lesson in any profession. The surprise that snuck up on me without warning was how taking care of people’s bodies and minds in such a concrete way would inevitably seep into how I myself lived in the world. I was too young to know that the work I did would color the way I saw my own life and my own body at least as much as the cadavers did. I was too young to realize how young I was.

Thirty-odd years later, I work a few days a week in a palliative care program with people who have serious chronic illnesses. I see hardy old people who are doing well and fragile people younger than me. About a fifth of our clients die every year. My clients live all over the city, in apartments and trailers, in memory care units, in sprawling assisted-living complexes, and in adult foster homes, part of the state’s extensive network. People like my clients are everywhere in the world; how could they not be? I forget that this part of life is so hidden, because when I go to work, that’s where I am: in that memory care unit where, really, anything could happen; in that small home where five very old women are cared for by several younger women; in that assisted-living building where every apartment is a microcosm of a long life.

But for many years, I forgot that I was like the man whose hand I had opened like a rose. We do forget such things when we are young, if we are lucky enough to learn them at all. I forgot that I would get old and lose the power that seemed entirely part of me, the power that allowed me to be busy and productive, rear three children, write books in the evening, and still get up and go to work. When I thought about death in those years, I didn’t quite believe in it. Of course patients sometimes died. People I didn’t know died—people on the news, people in the hospital, people on the street. My old relatives began to die, one after the other. But they were, after all, really old.

When I was in my early twenties, just finishing nursing school, I started practicing Soto Zen Buddhism. This is not a book about a Buddhist approach to dying. But my life is deeply informed by Buddhism, and I will return to its vocabulary and guidance throughout. The first story Buddhists learn—the root story—is that of the historical Buddha, Siddhartha. He was a pampered prince who grew up carefully protected from any painful sights. When he grew restless and slipped away from his bodyguards, he saw several things he had never seen before: a sick person, an old person, and then a corpse. His retainer told him that this was inevitable, that such things happen to everyone. What a shock for the young prince. Everyone? Me? Then he saw an ascetic, a religious practitioner who had withdrawn from the world in order to seek knowledge. The prince then knew his life’s task was to understand the meaning of the inevitability of change. (In some versions of the story, these terrible sights are sent by the gods in order to goad him into seeking enlightenment.)

Buddhist practice requires one to confront the blunt facts of life: that we are constantly changing, that we are dissatisfied more or less all the time, that we try desperately to hang on to what we have. That we are mortal, suffering beings. We will change and everything and everyone we love will change. An old Buddhist meditation is simply this: I am of the nature to grow old. I am of the nature to be sick. I am of the nature to die. All that is dear to me and everyone I love are of the nature to change. There is no way to escape being separated from them. The historical Buddha’s story has resonated so deeply with millions of us over thousands of years because it is our own. Sooner or later we each have such an epiphany: sickness, aging, death. Perhaps the sick person gets well and the old person is a stranger and the corpse is carefully made up and lying in an expensive casket in a church, but still. At some point you think, Me? Me too? And you either turn from that thought or start looking for an explanation. Either way, the epiphany has a way of returning.

One of the central ideas of our lives is that there will be a tomorrow. Tomorrow may be when I get the laundry done. Tomorrow may come after I retire. Tomorrow I start summer vacation. But if we are aware of our dangerous situation, there is no tomorrow. No next year. Only this. Of course we plan anyway; there’s no other way to live than to plant seeds and wait for the fruit, whether it’s the laundry or retirement or next summer’s vacation. The trick comes in planning next summer’s vacation while knowing that next summer is not promised to anyone. This impermanence is the key to our pain and our joy. What a radical acceptance of things as they are! “Why should we treat ourselves in a special way?” asked Shunryu Suzuki. “When you understand birth and death as the birth and death of everything—plants, animals and trees—it is not a problem anymore. A problem for everything is not a problem anymore.” A table is a table because of its shape and how we use it, and because there is a chair, and because we call it a table. We can take a table apart, and at some point it is no longer a table. Even if all the parts are there, the table is gone, because no table exists apart from how it fits together. I am like this; you are like this. Everything is like this. Such knowledge can give us a vast space in which to live our lives, a freedom within life. A problem for everyone is no longer a problem. We will break, as all things will; how beautiful, how sweet. How hard.

People have been wondering about the nature of death for all the eons we have been able to wonder. The modern literature of death never allows us to forget Cicero, who is otherwise rarely mentioned in conversation: “To philosophize is to get ready to die.” The impulse is to lean on history a little, add context, make a bigger picture. But do we really need to add weight to this conversation? I will do it, too, now and then—depend on another’s words. Perhaps I’m just reminding myself that all of our questions have been asked before. In the workshops I lead, the same questions come up every time: pain, dignity, fear. Old, old questions. How do we prepare for something so mysterious, so unseen? How do we make decisions about the unknown? How can we prepare for the inevitable when we aren’t sure we even believe in it?

We talk about death as a remote idea, imagine what we would like our dying to be like, and do this casually over a few beers, on a summer evening when the air is sweet and our healthy child hums quietly at our feet. We talk about dying when to die seems like a complete impossibility, and so can be considered.

Look around the room—right now. Wherever you are: the office, the subway, your living room. Look around, all around, at everything you can see. You are going to die in one minute. That’s it. There’s no time to find the sweet summer grass or your favorite Adele song. No hand to hold. No time to make a call or write a not...

Table of contents

• Cover
• Title
• Copyright
• Contents
• 1. Dangerous Situation
• 2. Resistance
• 3. A Good Death
• 4. Communication
• 5. Last Months
• 6. Where?
• 7. Last Weeks
• 8. Last Days
• 9. That Moment
• 10. Bodies
• 11. Grieving
• 12. Joy
• Appendix 1: Preparing a Death Plan
• Appendix 2: Advance Directives
• Appendix 3: Organ and Tissue Donation
• Appendix 4: Assisted Death
• UK Resources
• Acknowledgments
• About the Author