Tag: Death Meditation

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‘The Bitter Comes With The Sweet’

— Without Death, There Is No Life

By Mara Buchbinder

In the early days of the pandemic, my days were bookended by stories of death. I woke up each day hours before dawn to work on my book manuscript, happy to have a passion project to soothe my anxious energy. My book chronicles how Vermont patients, caregivers and health care providers navigated medical aid-in-dying, in the aftermath of legalization. In the morning, I combed through my notes, writing feverishly about dying, and in the evening, I absorbed the news of bodies accumulating around the world more quickly than they could be buried.

I have never been more acutely aware of my own mortality. I offered my husband detailed instructions about how to tend to my unfinished manuscript, should the need arise. We joked, with gallows humor, about how my death would make an ironic capstone to the book; he, of course, agreed to pen the afterword for the posthumous publication.

Studying medical aid-in-dying, and now living through the greatest pandemic in 100 years, has forced me to reckon with mortality. Over the five years that I’ve collected stories about death and dying, people have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but. Humbling and grounding, yes, and at times terribly sad, but never depressing.

An avid reader since childhood, I have always taken great comfort in stories. When the pandemic began, I realized that immersing myself in stories about death had actually helped me. Thinking about my own inevitable death is sad, but it doesn’t terrify me anymore. At 40, I hope I have a great many years left, but I’m also more or less at peace with my finitude.

Yet last spring, when I picked up Natalie Babbitt’s novel “Tuck Everlasting” to read to my 7-year-old son, I realized it was this book that first made me address my mortality, some 30 years ago.

If the concept of mortality was terrifying to me, the idea of immortality was even more so.

Published in 1975, “Tuck Everlasting” takes place in the 19th century, 87 years after the Tuck family unwittingly drinks from a magical spring that renders them immortal. The story is set in motion when a 10-year-old girl, Winnie Foster, accidentally discovers their secret. They bring her to their woodland cottage to persuade her to keep quiet, warning her of the catastrophe that would ensue if news of the spring were to become public.

The novel quickly charmed educators and parents, winning numerous literary awards. While it captivates young readers with its lyrical prose, its matter-of-fact philosophizing on life and death set it apart. In a key scene, Angus, the patriarch of the Tuck family, explains to Winnie that dying is an unavoidable part of the “wheel of life.” The bitter comes with the sweet. It is the difference between having a life and merely being alive. You can’t have living without dying.

The Tucks haunted my childhood. To my 10-year-old self, it seemed clear that the only thing scarier than dying was not dying. How awful it would be to outlive nearly everyone that you love! How bleak it would feel to be resigned to a life of complete social isolation. If the concept of mortality was terrifying to me, the idea of immortality was even more so.

This is precisely what the author had in mind. Babbitt wrote the book to tame the worries of her daughter Lucy, who was then 4-years-old. Babbitt wanted to help Lucy understand that dying was a natural part of the wheel of life, that not dying is much less desirable than it may seem.

Flipping cultural scripts on fears about death: this is the power of stories.

As a non-fiction author, I write for reasons not so different from Babbitt’s. I use real people’s stories to examine cultural fears about death — in my case, about lack of control over dying. Medical aid-in-dying offers what is, for many, a seductive vision of personal control over dying, and the promise of a peaceful, sanitized death. Yet such control often proves illusory, both because access to assisted death is much more complicated than it may seem, and because death, itself, is wily.

People have often questioned how I could study such a morbid topic. Isn’t it depressing? The answer is, anything but.

I think about a woman in her mid-60s I’ll call Candace, who developed metastatic cancer. Once it was clear that she was not going to get better, Candace decided to die on her own terms, with medical assistance. She procured the lethal prescription, which was no easy feat, because many physicians are reluctant to participate in the process. By the time she was ready to die, however, she was no longer able to ingest the medication.

The pandemic has made me even more sure that, like Candace, we are not in control of our destinies. But the Tucks weren’t in control, either. They waited passively, resigned to let the oppressive unfurling of time wash over them. In this sense, immortality’s promise of control over death is also illusory. It is poignant that the Tucks look forward to the day, every 10 years, when their sons return to the family cottage. During the pandemic’s eternal spring, when days bled into weeks and then months, I identified with this feeling, marking my days with UPS deliveries, as time moved ever so slowly.

During the pandemic, I have been in the fortunate position of being able to forestall illness and death with the appropriate precautions, such as staying at home. These measures should permit me to avoid the wrong sort of death. (There is universal agreement at this point that dying from COVID-19 is the wrong sort of death.) But I cannot avoid death altogether, nor (I think) would I want to

Now, 10 months into this crisis, my book is complete. The wheel spins on. The end of the pandemic no longer feels as far off and impossible as it did last spring. And still, I wonder what kind of story I am in. I marvel at that wonder.

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‘Dear Life’ explores the beauty of end-of-life experiences

By Terri Schlichenmeyer

Before the doctor opened her mouth, you knew this wasn’t going to be good.

And it wasn’t, although you can barely remember what happened a minute after you heard the diagnosis. All you could wrap your head around were monitors and tubes and machines and death, when what you needed was “Dear Life” by Rachel Clarke, and a reminder that it wasn’t time for that yet.

When she was a little girl, Rachel Clarke was in awe of her father, a doctor who loved music and nature and who shared his sense of curiosity with his children. As a teen, Clarke toyed with the idea of following in his footsteps, but she chose a career in television instead. And then one day, after experiencing a couple of close brushes with death, she decided to go back to school to become a doctor, specializing in palliative medicine.

“I learned that dying, up close, is not what you imagine,” she says. “It is the essence of living… that really matters…”

About death, there are two main things: unlike our ancestors, we aren’t used to it; and we can’t know what it’ll be like. These are what Clarke helps her patients and their families deal with, and while she can’t answer the latter question, she promises them that the days and hours before the end are as full of life as possible.

Sometimes, that means meeting fears head-on, and discussing death matter-of-factly. Sometimes, it’s asking questions of a patient because no one else has done so. Caring for someone who’s dying may mean literally opening a window to sunshine or birdsong, holding a hand, letting “a wife curl up in a hospital bed beside her dying husband,” or encouraging a visit from a pet or a beloved grandchild. And sometimes, a doctor just needs to remember that “There is always a spark of beauty or significance…in the life you have left,” even when the person dying is someone the doctor loves.

This year, no doubt, you’ve seen enough death to last several lifetimes, and you’re not sure you can withstand a book about it right now.

But hold on, because “Dear Life” lives up to its title.

Beautiful, thoughtful, and loving, this book is absolutely brimming with life as author Rachel Clarke describes the end-of-life care offered at the hospice where she works and some of the most memorable patients to whom she ministered care.

If that sounds like an anti-life book, well, it’s not. It’s true that people die in this book, and they do it often but Clarke’s accounts of their days prior to death are quiet and serene, with no fear, no pain, and the minimum of loose ends left. Her workplace is not a sterile, clinical home where people go to die; rather, it’s a place where people die but first, happiness sneaks in sometimes.

And for that, curiously, this book on death-and-life may be the balm your COVID-bruised mind needs now. Indeed, calm, truthful, and not too gory, “Dear Life” is good.

Another book to look for is “Grief: The Biography of a Holocaust Photograph” by David Shneer. It’s the story of a photo taken toward the end of World War II, and the emotion inside it. Part meditation, part history, this book is perfect for the historian, too.

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Near the end of life, my hospice patient had a ghostly visitor who altered his view of the world

By Scott Janssen

For months, as I’ve visited Evan as his hospice social worker, he has been praying to die. In his early 90s, he has been dealing with colorectal cancer for more than four years, and he is flat tired out. As he sees it, the long days of illness have turned his life into a tedious, meaningless dirge with nothing to look forward to other than its end. He’s done, finished. He often talks about killing himself.

On this visit, though, his depression seems to have lifted. He’s engaged and upbeat — and this sudden about-face arouses my suspicions: Has he decided to do it? Is he planning a way out?

“You seem to feel differently today than on other visits,” I say casually. “What’s going on?”

He looks at me cryptically.

“Do you believe in ghosts?” he asks.

It’s not the first time a patient has asked me this. People can have unusual experiences when they reach the end of life: near-death or out-of-body experiences, visitations from spiritual beings, messages delivered in dreams, synchronicities or strange behaviors by animals, birds, even insects.

“There are all kinds of ghosts,” I respond seriously. “What kind are you talking about?”

“You remember me telling you about the war?” he asks

How could I forget? He’d traced his long-standing depression to his time as a supply officer for a World War II combat hospital. The war, he’d said, had soured him on the idea that anything good could come from humans and left him feeling unsafe and alone.

“I remember.”

“There’s something I left out,” he says. “Something I can’t explain.” He goes on to describe one horrific, ice-cold autumn day: Casualties were coming in nonstop. He and others scrambled to transport blood-soaked men on stretchers from rail cars to triage, where those with a chance were separated from those who were goners.

“I’d been hustling all day. By the time the last train arrived, my back felt broken, and my hands were numb from the cold.”

He grimaces and swallows hard.

“What happened when the last train got there?” I ask softly.

“We were hauling one guy, and my grip on the stretcher slipped.” Tears roll down his face. “When he hit the ground, his intestines oozed out. Steam rose up from them as he died.”

Evan rubs his hands as though they were still cold.

“Later that night I was on my cot crying. Couldn’t stop crying about that poor guy, and all the others I’d seen die. My cot was creaking, I was shaking so hard. I even started getting scared that I was going insane with the pain.”

I nod, waiting for him to continue.

“Then I looked up,” he says. “Saw a guy sitting on the end of my cot. He was wearing a World War I uniform, with one of those funny helmets. He was covered in light, like he was glowing in the dark.”

“What was he doing?” I ask.

Evan starts crying and laughing at the same time. “He was looking at me with love. I could feel it. I’d never felt that kind of love before.”

“What was it like to feel that kind of love?”

“I can’t put it in words.” He pauses. “I guess I just felt like I was worth something, like all the pain and cruelty wasn’t what was real.”

“What was real?”

“Knowing that no matter how screwed-up and cruel the world looks, on some level, somehow, we are all loved. We are all connected.”

This turned out to be the first of several paranormal visits. Each time the specter arrived, he’d wordlessly express love and leave Evan with a sense of peace and calm.

“After the war, the visits stopped,” he says. “Years later, I was cleaning out Mom’s stuff after she died, and I found an old photograph. It was the same guy. I looked on the back, and Mom had written the words ‘Uncle Calvin, killed during World War I, 1918.’ ”

We talk some more, then I ask, “What does this have to do with your being in a better mood?”

“He’s back,” he whispers, staring out the window. “Saw him last night on the foot of my bed. He spoke this time.”

“What’d he say?”

“He told me he was here with me. He’s going to help me over the hill when it’s time to go.”

As I’m formulating more questions, Evan surprises me by asking one of his own.

“You ever have something strange happen? Something that tells you that no matter how bad it looks, you’re connected with something bigger, and it’s going to be okay?”

A memory flashes into my mind. It was 35 years ago. It was after midnight, and I was asleep in a graduate-student apartment at Syracuse University. A siren’s blare woke me, so loud it sounded like it was inside the room. Adrenaline pumping, heart pounding like a hammer, I sat up and wondered what had happened. Was it a dream?

From outside, I distinctly heard what sounded like a two-man stretcher crew talking.

“Bring it here quick,” one guy told the other. I heard a gurney being rolled across asphalt.

I went to the window and pulled back the curtain, certain there was trouble outside.

The night was silent. Nothing was stirring in the parking lot. No one was there.

Just before daybreak, Dad called to tell me that just a few hours earlier, my uncle Eddie had been killed in an automobile collision.

That was a tough day. As night fell once more, questions filled my head: Why did this happen? What was he experiencing when it ended? Was he scared?

On the kitchen table sat a beat-up radio; some kind of malfunction occasionally caused it to turn off or on for no apparent reason. As my questions swirled, the radio turned on, and I heard the opening chords of the Beatles’ song “Let It Be.”

Not being a fan, I’d never listened closely to the song before — but this time, I did. The music and words filled me with an almost otherworldly sense of peace and comfort. The song ended. Shortly after, the radio cut off.

For years, I tried to explain away those events. It must have been a dream, I told myself. Or some kind of fabricated “memory” to fool myself into thinking that uncle Eddie and I were connected in that moment. As for the radio, it was nothing but a random coincidence. Any other conclusion is just wishful thinking.

Inside, though, a part of me knew it was real.

After nearly 30 years as a hospice social worker, I’m certain of it. And I have patients like Evan to thank: dying patients who have convinced me that the world we inhabit is lovingly mysterious and eager to support us, especially during times of disorientation and crisis. It even sends messages of love and reassurance now and then when we’re in pain.

I return to the present. Evan is looking at me, waiting for an answer. I feel grateful that he’s pulled up these memories. Outside, a flock of crows takes off in unison from the branches of an ancient oak.

“Yeah,” I say with a nod. “I guess I have.”

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What Is Death?

How the pandemic is changing our understanding of mortality.

By BJ Miller

This year has awakened us to the fact that we die. We’ve always known it to be true in a technical sense, but a pandemic demands that we internalize this understanding. It’s one thing to acknowledge the deaths of others, and another to accept our own. It’s not just emotionally taxing; it is difficult even to conceive. To do this means to imagine it, reckon with it and, most important, personalize it. Your life. Your death.

Covid-19’s daily death and hospitalization tallies read like ticker tape or the weather report. This week, the death toll passed 300,000 in the United States. Worldwide, it’s more than 1.6 million. The cumulative effect is shock fatigue or numbness, but instead of turning away, we need to fold death into our lives. We really have only two choices: to share life with death or to be robbed by death.

Fight, flight or freeze. This is how we animals are wired to respond to anything that threatens our existence. We haven’t evolved — morally or socially — to deal with a health care system with technological powers that verge on godly. Dying is no longer so intuitive as it once was, nor is death necessarily the great equalizer. Modern medicine can subvert nature’s course in many ways, at least for a while. But you have to have access to health care for health care to work. And eventually, whether because of this virus or something else, whether you’re young or old, rich or poor, death still comes.

What is death? I’ve thought a lot about the question, though it took me many years of practicing medicine even to realize that I needed to ask it. Like almost anyone, I figured death was a simple fact, a singular event. A noun. Obnoxious, but clearer in its borders than just about anything else. The End. In fact, no matter how many times I’ve sidled up to it, or how many words I’ve tried on, I still can’t say what it is.

If we strip away the poetry and appliqué our culture uses to try to make sense of death — all the sanctity and style we impose on the wild, holy trip of a life that begins, rises and falls apart — we are left with a husk of a body. No pulse, no brain waves, no inspiration, no explanation. Death is defined by what it lacks.

According to the Uniform Determination of Death Act of 1981 (model legislation endorsed by both the American Medical Association and the American Bar Association, meant to guide state laws on the question of death), you are dead if you have sustained “either irreversible cessation of circulatory and respiratory functions” or “irreversible cessation of all functions of the entire brain, including the brain stem” — in other words, no heartbeat and no breathing, which is obvious enough, or no brain function, which requires an electroencephalogram.

These are the words we use to describe one of the most profound events in human experience. Most states have adopted them as the legal definition of death. They may be uninspired, and they surely are incomplete. Either way, a doctor or nurse needs to pronounce you dead for it to be official. Until then, you are legally alive.

If we stay focused on the body, the most concrete thing about us, it becomes difficult to say whether death exists at all.

From the time you are born, your body is turning over. Cells are dying and growing all day, every day. The life span of your red blood cells, for example, is about 115 days. At your healthiest, living is a process of dying. A vital tension holds you together until the truce is broken.

But your death is not the end of your body. The chemical bonds that held you together at the molecular level continue to break in the minutes and months after you die. Tissues oxidize and decay, like a banana ripening. The energy that once animated the body doesn’t stop: It transforms. Decay from one angle, growth from another.

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Unfettered, the decay process continues until all that was your body becomes something else, living on in others — in the grass and trees that grow from where you might come to rest, and from the critters who eat there. Your very genes, little packets of stuff, will live indefinitely as long as they found someone new to host them. Even after interment or cremation, your atoms remain intact and scatter to become other things, just as they pre-existed you and became you.

For revelation of the mysteries of an afterlife, or of the forces that kicked off this wondrous circus in the first place, we might look to religion. What is described above is plainly observable science. Yet science doesn’t do the question justice. It won’t tell us why, or what’s behind its laws. The body houses more than we can express; you are more than your body. Becoming a blade of grass is a sweetness that doesn’t compensate for all the heartache death connotes.

Of course, we’re sad and afraid of losing ourselves and people we love, but for many of us a fear of death as the Great Unknown has been overtaken by our fears of what we know — or think we know — about dying.

Nowadays, being dead sounds like a lullaby compared with the process of dying. Given a steadily awful diet of stories about breathing machines and already-disenfranchised people dying alone, we’re told to imagine the worst, before cutting to commercial. Our choices seem to be either to picture a kind of hell — that could be mom or me, breathless and alone — or to distance ourselves from the people living those stories, not just in body but in every way, to de-identify with our fellow human beings.

But this is how we make hard things harder. Maybe our fear of death has more to do with our perceptions of reality than with reality itself, and that is good news. Even if we can’t change what we’re looking at, we can change how we look at it.

We do have fuller ways of knowing. Who doubts that imagination and intuition and love hold power and capacity beyond what language can describe? You are a person with consciousness and emotions and ties. You live on in those you’ve touched, in hearts and minds. You affect people. Just remember those who’ve died before you. There’s your immortality. There, in you, they live. Maybe this force wanes over time, but it is never nothing.

And then there’s consciousness — spirit, if you like — and of this, who can say? You may have your own answer to this question, but we do not get to fall back on empiricism. Whatever this mystery is, it blurs all the lines that seem at first glance to separate death from life. And if death isn’t so concrete, or separate, maybe it isn’t so frightening.

The pandemic is a personal and global disaster, but it is also a moment to look at the big picture of life. Earlier this week I had a patient lean into her computer’s camera and whisper to me that she appreciates what the pandemic is doing for her: She has been living through the final stages of cancer for a while, only now her friends are more able to relate to her uncertainties, and that empathy is a balm. I’ve heard many, in hushed tones, say that these times are shaking them into clarity. That clarity may show up as unmitigated sorrow or discomfort, but that is honest and real, and it is itself a powerful sign of life.

So, again, what is death? Talking about and around it may be the best we can do, and doing so out loud is finally welcome. Facts alone won’t get you there. We’re always left with the next biggest question, one that is answerable and more useful anyway: What is death to you? When do you know you’re done? What are you living for in the meantime?

For some of us, death is reached when all other loved ones have perished, or when we can no longer think straight, or go to the bathroom by ourselves, or have some kind of sex; when we can no longer read a book, or eat pizza; when our body can no longer live without the assistance of a machine; when there is absolutely nothing left to try. Maybe the most useful answer I ever came across was the brilliant professor who instructed his daughter that death was what happened when he could no longer take in a Red Sox game.

If I had to answer the question today I would say that, for me, death is when I can no longer engage with the world around me. When I can no longer take anything in and, therefore, can no longer connect. At times, social distancing has me wondering if I’m there already, but that’s just me missing touching the people I care about. There are still ways to connect with others, including the bittersweet act of missing them. And besides, I get to touch the planet all day long.

These are helpful questions to consider as you weigh serious medical treatment options, or any time you have to choose whether to mobilize your finite energy to push, or use it to let go. Our answers may be different, but they are always actionable; they are ends around which we and our inner circles and our doctors can make critical decisions.

They also have a way of illuminating character. They are an expression of self, the self who will one day do the dying and so gets to say. What is it you hold dear? Who are you, or who do you wish to be? You can see how death is better framed by what you care about than by the absence of a pulse or a brain wave.

Beyond fear and isolation, maybe this is what the pandemic holds for us: the understanding that living in the face of death can set off a cascade of realization and appreciation. Death is the force that shows you what you love and urges you to revel in that love while the clock ticks. Reveling in love is one sure way to see through and beyond yourself to the wider world, where immortality lives. A pretty brilliant system, really, showing you who you are (limited) and all that you’re a part of (vast). As a connecting force, love makes a person much more resistant to obliteration.

You might have to loosen your need to know what lies ahead. Rather than spend so much energy keeping pain at bay, you might want to suspend your judgment and let your body do what a body does. If the past, present and future come together, as we sense they must, then death is a process of becoming.

So, once more, what is death? If you’re reading this, you still have time to respond. Since there’s no known right answer, you can’t get it wrong. You can even make your life the answer to the question.

BJ Miller is a hospice and palliative medicine physician, author of “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” and founder of Mettle Heath, which provides consultations for patients and caregivers navigating serious illness.

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Rethinking Black Friday to include end-of-life conversations

By L.S. Dugdale

With more than 250,000 Americans killed by Covid-19, it’s time to think about reimagining Black Friday.

Police officers in Philadelphia gave the Friday after Thanksgiving its dark name in 1966 as zealous shoppers mobbed streets and sidewalks. But it quickly came to mean a day when business owners could expect their accounts to be in the black, as opposed to in the red.

If Black Friday celebrates American consumers spending in order to live well, we could also adopt it as a day to consider what it means to die well. As the ancient Greek philosopher Epicurus ostensibly put it, “The art of living well and the art of dying well are one.”

As a physician, I’ve met countless patients who were ill-prepared for death. The “trajectories of decline” described by geriatrician Joann Lynn make it easy not to prepare. Some people live for years with chronic illnesses but feel no need to ponder their mortality. Hospital tune-ups enable them to live seemingly forever. Others enjoy relative health until being caught off guard by a deadly illness. Still others live good long lives only to succumb to dementia, which robs them of their ability to plan.

We are habituated to living with hope for intervention or cure. To accept the impossibility of treatment is to admit defeat, which most people are loathe to do.

How and where we die underscores how unprepared we are. Most Americans have never had end-of-life conversations or formalized their wishes for medical treatments at the end of life. Despite existing in some form since the 1970s, only 37% of Americans report having formalized their wishes through an advance directive. What’s more, most Americans say they want to die at home, yet roughly 60 percent die in hospitals, nursing homes, and hospices. There’s no question that institutional care can be a lifesaver for families not equipped to care for their loved ones at home.

If we are to realize the ideal of death at home surrounded by family, we’ve got work to do. Making a home death possible requires difficult decisions — in end-of-life conversations with family members and health care professionals — about which treatments and hospitalizations to forgo, whether homes can accommodate hospital beds, and who will do the hard work of caring for the dying.

That’s where taking a new approach to Black Friday comes in. On that day, families could pivot from giving thanks to giving thought to ending well. A simple prompt for starting end-of-life conversations might be, “Mom, Dad, if you become so sick that you can’t speak for yourself, who would you want to make medical decisions on your behalf?” And the natural follow-up would be, “Help me know how to advocate for you. Let’s talk about the benefits and burdens of particular medical interventions.” Conversation can then move to broader community-based issues such as funeral, burial, and religious or existential concerns.

It’s not the easiest conversation to have, but the payoff can be worth the effort. And since Black Friday comes every year, it’s a discussion that can build on itself over time.

A reimagined Black Friday could help Americans formalize their wishes for care at the end of life. Advance care planning documents allow people to identify health care proxies to make medical decisions if they lose decision-making capacity. Living wills specify an individual’s choice to have — or not have — cardiac resuscitation, mechanical ventilation, and other invasive procedures.

To be fair, there are good reasons why some people don’t want to prepare for death. Many of my patients fear that talk of death might “jinx” them. Some are reluctant to put their wishes in writing because they worry that doctors will give up on them. Others are concerned they’ll change their minds down the road but be too sick to say so. These concerns are real, but the potential exists for much greater harm by ignoring finitude entirely.

Reflecting on death has the potential to bring into relief that which matters most, and it can empower us to change how we live for the better. Ask anyone who is fully engaged in the process of dying. When our days are numbered, we value our relationships differently. We spend our time and money differently. We ponder life’s mysteries.

In ordinary times, we fool ourselves into thinking that the preparation for death can wait. But these are not ordinary times. When I was caring for hospitalized Covid patients this past Spring in New York City, they were frequently astonished that they had become so sick. They had not understood, as did Epicurus, that the art of dying is wrapped up in the art of living. But the pandemic has taught us that sickness and death do not happen only to other people. All of us must live with a view to our finitude.

This Black Friday, after the feasting has subsided and before the shopping begins, take a few minutes to talk with those you love about how to die well. Be frank about end-of-life wishes. Complete and sign documents.

At the same time, it also makes sense to talk about living. If Epicurus is right, to die well one must live well. And attending to what it means to live well — in light of the precarity of life — can make all the difference.

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Living With Ghosts

By Mary O’Connor

“What’s your name?”
“Mary.”
“Mary what?
“O’Connor.”
“From where?”
“From here.”
“No, you’re not.”
“I’m your daughter.”
“No, you’re not. What’s your name? . . .”
“We should get him a tape recorder.”
“He’s human. He needs a human voice.”
“But his is almost gone.”
“That doesn’t matter.”

Staring into the face of an undead ghost in a green tweed jacket and flat-cap over toast and cornflakes is unnerving at the best of times; and traumatic at the worst. Especially when that ghost is your father. And the cornflakes have gone soggy.

But unlike gothic novels or films where ghosts happily offer themselves up as symbols of repressed memories, traces of crimes against innocents, and (usually) murderous pasts, this ghost has never crossed over into the realm of the metaphorical. Inconveniently, it decides to remain very, very human. Actually, that depends on your definition of human.

Even more inconvenient is the fact that this ghost refuses to follow the script and disintegrate with the morning light. Instead, it prefers to haunt the modern comforts of an electric armchair; swapping dreary castles for daytime television and crumbling dungeons for motorised beds.

And that’s just the start of my day living with a living ghost. Or Alzheimer’s as it’s otherwise known. Or, more correctly, my father’s Alzheimer’s.

Living with Alzheimer’s, both as a carer and sufferer, is a growing phenomenon in the UK. Often confused with dementia, Alzheimer’s refers to a physical disease which affects the brain while dementia is simply a term for a number of symptoms associated with the progressive decline of brain function. These symptoms can include memory loss, difficulty with thinking and problem solving, and challenges with language and perception. There are over 400 types of dementia—with Alzheimer’s and vascular dementia as the most common forms. According to the Alzheimer’s Society of the UK, dementia is now the leading cause of death in the UK with someone developing it every three minutes. Alzheimer’s is classified as a “life-limiting” illness according to the NHS, but sufferers can live for many years after the initial diagnosis, depending on the progression of the disease. Divided into three stages, early, middle, and late, the symptoms of Alzheimer’s gradually become more severe as the disease progresses and more parts of the brain are affected.

In the early stages, having Alzheimer’s as a companion wasn’t too unpleasant; the emptiness hadn’t fully taken over and I had more human than spectre to talk to. I could still pretend to have a normal(ish) life with only the minor inconvenience of a (mostly) present parent, despite the occasional wandering through doors unexpectedly and lunatic outbursts. The human part kept his smiling eyes, watching the world orbit around the sweat-stained tea-pot and apple tart. But the Alzheimer’s relentless erasure of my father left a morbid spectre sitting in his chair at the kitchen table.

In the middle stages, my father’s personality and identity dropped away like discarded clothes. His manner of speech was the first to surrender to the disease. Forgetting words rapidly metamorphosised into hours of repetitive questioning, as if seeking to ground himself in concrete knowledge of the now while his fingers grabbed vainly at a slipping sense of reality. The final stages of the disease witnessed his childish cries for help without knowing what or who he wanted.

“Gone childish” is an archaic term that was once used to describe dementia and Alzheimer’s sufferers before these diseases were better understood. Capturing the vulnerability these diseases inflict on their sufferers, the phrase sums up the centrality of memory to the human experience. If our identities are formed by our experiences, and these experiences are stored in our memories, shaping who we are and how we make decisions, what can we do when we have no memory? Without a roadmap of precedence, how can you plan for the future or know yourself without knowing how you got to where you are now? Like children, Alzheimer’s sufferers lose a sense of the past and futurity. They become transfixed in the present like ghosts trapped in limbo.

The last stages of my father’s disease cemented his role in the family home as the new phantasm. Like a well-behaved, conventional ghost he punctuated our nights with night-walking, ghoulish shrieks, hallucinations, and knocking on doors at all hours while the day-time witnessed empty eyes peering out from behind the safety of a purple blanket. Innocent of blame, our ghost blocked our escape from the house. For fear of hurting himself, we couldn’t leave him alone but grew resentful for being held hostage by a madman with no memory or awareness of his own actions.

After being stripped of memory and identity, my father’s Alzheimer’s left a shell of body; a ghastly reminder of the person that had once inhabited it. Bereft of the markers of humanity, this animated mannequin asked, “What makes up a human? Is it the mind? Or the body? And what happens when you take one from the other?”

Researchers have identified the cause of Alzheimer’s as the build-up of abnormal structures in the brain called ‘plaques’ or ‘tangles’. These structures cause damage to brain cells and can block neuro-transmitters, preventing cells from communicating with each other. Over time, parts of the brain begin to shrink with the memory areas most commonly affected first. Why these build-ups occur or what triggers them is not yet understood, but researchers now know that it begins many years before symptoms appear.

Ancient Roman and Greek philosophers associated the symptoms dementia with the ageing process. However, it was not until 1901 when the German psychiatrist, Alois Alzheimer, identified the first case of the disease. Medical researchers during the twentieth century began to realise that the symptoms of dementia and Alzheimer’s were not a normal part of ageing and quickly adopted the name of Alzheimer’s disease to describe the pattern of symptoms relating to this type of neurological degeneration.

No physical markers like the puckered lines of surgery scars or the uneven hobble of a game leg signposted my father’s declining health. But the slow creep of this living death brought on grief long before his body was expected to fail. Without the essence of the person, all of their quirks and curiosities, which once animated a familiar body, how do you grieve for someone’s loss before they have died? And how do you cope with the guilt?

This type of grief is usually referred to as anticipatory grief. It is a type of grief that is experienced prior to death or a significant loss. Typically, it occurs when a loved one is diagnosed with a terminal or life-threatening illness, but it can also happen in the face of a personal diagnosis. However, it can often trigger feelings of guilt because people feel ashamed for grieving their loved one’s death before they are dead.

With my father’s memory gone, my connection with him was broken. During the later stages of the disease he forgot my name and my existence. Fading from my life, his body remained as a perverse mockery of the person that had once inhabited it. Now all that haunts me are the memories of peering over barley stalks before the autumn harvests at a grizzled old farmer in a flat cap and tweed jacket, a hand reaching out to help guide the walk home.

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Why Arun Shourie concludes that the ultimate preparation for death is simply love

The former Union minister and veteran journalist’s latest book, ‘Preparing for Death’, is both a contemplation of and an anthology on death

by Pratap Bhanu Mehta

Arun Shourie is an unflinching seeker. He has an exemplary ability to face the toughest questions. After a bracing meditation on the problem of suffering in Does He Know a Mother’s Heart (2011), Shourie now turns to Preparing for Death. There used to be a joke that the purpose of literature is to prepare you for the good life, while the purpose of philosophy is to prepare you for the good death. But it is hard to understand our own extinction. Broadly speaking, two diametrically opposite views are invoked to reconcile us to death. One is that we don’t really die; in some form, through an incorporeal soul or something, we continue to exist. The other unflinchingly accepts that we just are evanescent matter and nothing else. Both approaches address the question of dying by simply saying “there is nothing to it.” There is something to this strategy, but it cannot make sense of the significance of life. It seems we can either make sense of life or of death, but not of both.

Shourie’s book takes a brilliantly different pathway. The book has three distinct themes. The first, the most powerful and meditative section of the book is not so much about death as the process of dying. He documents with detail, “great souls” experiencing the often painful dissolution of their own body — the Buddha, Ramkrishna Paramhansa, Ramana Maharshi, Mahatma Gandhi, and Vinoba Bhave, and, as a cameo, Kasturba. All of them give lie to Sigmund Freud’s dictum that no one can contemplate their own death. But what emerges from these accounts is not so much the conclusion that they all faced death unflinchingly; most of them have a premonition. It is also not about capturing the moment where the good death is leaving the world calmly. It is rather what the suffering body does to consciousness, all the memories and hard decisions it forces on us.

But the relationship between the body and consciousness goes in two different directions at once. On the one hand this suffering is productive: consciousness works through this pain. On the other hand, even the most exalted soul does not escape the utter abjection of the body. The most poignant moment in this section is not the calm and plenitude with which these exalted souls face death; it is the moments where even the most powerful souls are reduced to abjection by the constraints of the body. The only one rare occasion where Ramana Maharshi ever loses his cool is in his now utter dependence on others for most basic bodily functions. The problem of dying is not that you cannot ignore the body; it is that the body does not ignore you.

The second theme of the book is to take a sharp scalpel to false comforters of all religions and philosophies that promise the everlasting soul, or the preservation of bodies only to subject them to torment in hell. This metaphysical baggage makes dealing with death harder and is a total distraction. This section is less generous in its interpretive sympathies. The third theme of the book, interspersed in various parts, is about the discipline of dealing with your own body as it is in the process of dying. The book impressively marshals a variety of sources, from the Tibetan Book of the Dead, with its incredible imaginative exercises that make you take in the whole of existence, to Jain sources of Sallekhana, and various meditative techniques to inculcate a certain kind of mindfulness. But mostly one gets the sense that the ultimate preparation for death is simply love, something that can endow the evanescent moment with significance.

But this is a seeker’s book. It is in parts profound probing, honest but not dogmatic. Its immense value comes from the fact that the book is both a book and an anthology on death, with extracts from not just the words of those experiencing the process of dying, but an astonishing range of sources: from Fernando Pessoa to Michel de Montaigne, from yoga to the Tibetan Book of the Dead. For the politically inclined, there is an ambivalently revealing account of the Prime Minister’s visit to Shourie while he was in the ICU. All throughout, the book is laced with judiciously selected poetry: the startling moment where Gandhi recites the Urdu couplet to Manu: Hai baha- e-bagh-e duniya chand roz/ Dekh lo iska tamasha chand roz, a register you might associate more with Guru Dutt than Gandhi. There is a lot of Kabir, of Basho poetry and haikus. One stunning one: Circling higher and higher/At last the hawk pulls its shadow/From the world.

This haiku caught my attention because I happened to be reading a stunning essay by Arindam Chakrabarti at the same time, “Dream, Death and Death Within A Dream”, in Imaginations of Death and the Beyond in India and Europe (2018), a volume edited by Sudhir Kakar and Gunter Blamberger, that reads as a great philosophical complement to this one. That volume has a powerful piece by another brilliant philosopher, Jonardan Ganeri, on illusions of immortality that deals with a source Shourie cites at length: Pessoa. Chakrabarti’s essay ends with the insight of Yoga Vashishtha: To be born is to have been dead once and to be due to die again. Shourie is perhaps right: Can we really unravel what it means for the hawk to pull its shadow from the world? Does the shadow reappear if it flies lower?

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