The authors share the results of a no-holds-barred discussion they conducted for several years over email. Readers can consider a range of views on complicated issues to which there are no right answers. Letting ourselves pose certain questions has the potential to profoundly change the way we think about death, how we choose to die, and, just as importantly, the way we live.
Honest, probing, sensitive, and even humorous at times, the completely open discussions in this book will help readers deal with a topic that most of us try to avoid but that everyone will face eventually.
From the Trade Paperback edition.
The authors share the results of a no-holds-barred discussion they conducted for several years over email. Readers can consider a range of views on complicated issues to which there are no right answers. Letting ourselves pose certain questions has the potential to profoundly change the way we think about death, how we choose to die, and, just as importantly, the way we live.
Honest, probing, sensitive, and even humorous at times, the completely open discussions in this book will help readers deal with a topic that most of us try to avoid but that everyone will face eventually.
From the Trade Paperback edition.
Let's Talk About Death: Asking the Questions that Profoundly Change the Way We Live and Die
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Let's Talk About Death: Asking the Questions that Profoundly Change the Way We Live and Die
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Overview
The authors share the results of a no-holds-barred discussion they conducted for several years over email. Readers can consider a range of views on complicated issues to which there are no right answers. Letting ourselves pose certain questions has the potential to profoundly change the way we think about death, how we choose to die, and, just as importantly, the way we live.
Honest, probing, sensitive, and even humorous at times, the completely open discussions in this book will help readers deal with a topic that most of us try to avoid but that everyone will face eventually.
From the Trade Paperback edition.
Product Details
| ISBN-13: | 9781633881136 |
|---|---|
| Publisher: | Prometheus Books |
| Publication date: | 11/10/2015 |
| Sold by: | Penguin Random House Publisher Services |
| Format: | eBook |
| Pages: | 275 |
| File size: | 625 KB |
About the Author
Irene Kacandes is the Dartmouth Professor of German Studies and Comparative Literature at Dartmouth College, where she is also involved in the Medical Humanities Initiative. President of the German Studies Association, Kacandes also chairs the Division of Autobiography, Biography, and Life Writing of the Modern Language Association. She’s authored two previous books and numerous scholarly articles, as well as edited anthologies, journals, and other books.
From the Trade Paperback edition.
Read an Excerpt
Let's Talk about Death
Asking the Questions That Profoundly Change the Way We Live and Die
By Steve Gordon, Irene Kacandes
Prometheus Books
Copyright © 2015 Steve Gordon and Irene KacandesAll rights reserved.
ISBN: 978-1-63388-113-6
CHAPTER 1
WHAT IS LIFE WITH DEATH?
La Tour-de-Peilz, Switzerland 4 July 2011
Dear Steve,
Thank you for your offer to exchange letters with me this summer while I am living and writing in the town where my husband, Philippe, grew up. It is a beautiful port on the shores of Lake Geneva in the French-speaking part of Switzerland. From my little writing desk in the living room I can see over the treetops, roofs, and lake to a few of the smaller mountains in the French Alps. (The biggest peaks usually can't be seen from this location.) Over the years that I've been coming here I have grown closer and closer to my husband's tiny, welcoming family, and I've made a few friends of my own through playing tennis and visiting the library at the Université de Lausanne, a short jaunt from here. Still, even with the joy of reconnecting with them and my husband, who has already been here for several weeks, I realize I am longing to be in dialogue with you. Is that because we've managed to bond over the topic of loss, and I am feeling the imminent loss of my father at this moment?
Since that day in late April when you and I met face-to-face and walked and talked, and the few follow-up chats we managed to fit into our busy schedules, I've finished up the academic year at Dartmouth, gotten our house in Lebanon, NH, ready for our absence and the arrival of tenants, traveled to White Plains, New York, where I grew up and where my parents still live, and I have just arrived here in Switzerland. Whew, I am exhausted just writing that out, but even more exhausted from worrying about my father.
I believe I explained to you that my father has been in poor physical and mental health for some years now. He's not very old by today's standards, just eighty-one. But he's got diabetes, neuropathy, barely functioning kidneys, severely arthritic knees, and has already had a heart attack and open-heart surgery, all of which contribute to his limited mobility; some of those problems likely contribute to his increasingly severe dementia. We've been trying to take care of him at home. My mother does the greatest share of the caretaking, with part-time help from a home health aide. One of my sisters lives in New York City and makes the time to stop by often and check in on them, as does one of my brothers, who lives about an hour away. I go down from New Hampshire when I can take a break from my responsibilities at the university. (My other three siblings live thousands of miles away and have their own challenges to deal with right now.)
Dad had a terrible spring. He developed a urinary tract infection that was bad enough to send him to the hospital, where he then came down with new infections. He became so weak that he could no longer get in and out of bed, even with assistance, so eventually he entered a local rehabilitation home where he still is as I write you, and where the care, alas, has been inconsistent. Going back and forth to the hospital and acute-care facility and trying to deal with the healthcare system for more than a month has been exhausting for my mother and siblings. So it was an obvious choice to spend the time I had available between the end of the school year and departure for Europe being with my father and spelling my mother, sister, and brother from at least the daily grind of his care.
Seeing my father in so much pain, confusion, and distress was difficult, to be sure. When staff members who are patient and gentle were on duty, he remained calm, but when those who are generally in a rush were assigned to him, he would scream out in anticipation of the pain they were sure to cause him with a hurried and rough transfer from bed to wheelchair or wheelchair to toilet, from pajamas to clothes or vice versa. I would remind the staff to please tell him what was about to happen before they touched or moved him and to please stabilize his impossibly swollen and achy knees, but institutional protocol put me in the hallway more times than not, where I would shake from the sound of his screams and my own helplessness.
Once Dad was actually in the wheelchair or back in bed, I could be in charge. And that part felt easy, or at least very clear. My job was to try to comfort and engage him. Even when I had the sense that I wasn't succeeding at comforting or engaging him, I still felt the imperative to try over and over again. Patiently talking to him about anything and everything. Sitting in the corner of his room. Reading aloud little bits from the newspaper. Pushing him in his wheelchair outside. The June temperatures were generally warm but not yet scorching, and the place has a lovely garden and woods. I would point out to him the birds and rabbits near us and occasionally he would point one out to me. I would read him poetry. Rub his back. And often just sit in silence nearby.
Repeatedly I thought of you, Steve, and wondered how you actually do your work with the dying. I didn't wonder at all that you wanted to do it. Rather, I wondered about what kinds of massage you give to what kinds of patients. I wondered, too, how you know when to be active and when to quietly just be there, a silent witness to their suffering. A witness to their work of dying.
The other thing about these days spent with my father that I felt you would immediately understand was how easy it was for me to take an interest in the other residents in the facility. I tried to learn their names so that I could greet them when I passed them in the hall or outside. I smiled my widest smiles and shook hands with the stronger. I kissed several residents good-bye on my last visit and shed tears of recognition that I'd fallen in love with them and that chances were I would never see them again.
Why did all that come almost effortlessly? Where did that childhood disgust of the nursing homes we were made to visit as Girl Scouts disappear to? To put it another way, how did I get comfortable being with the elderly, the suffering, and the dying? I certainly never had a plan to become so. Knowing that I was there for just a few weeks definitely helped me to be as available to others as I could be. It helped me to engage with their pain and misery and to be on the lookout for joy and beauty so that I could share it with those around me. Could I have gotten up my energy and my optimism, though, if I'd already been doing this for months? If my engagement were open-ended? If I knew there was no break for me in sight?
Probably not, I suspect. Still, the reality of this visit for me was mainly peaceful. Dad is possibly going to die soon; a lot of these people might die soon; for all I know I could die soon. Those weren't happy thoughts, but they were acceptable thoughts. They were thoughts I accepted. So, now, in the immediate aftermath of this intense caretaking situation, of this immersion into an environment of pain, suffering, and imminent death, I find myself asking all kinds of questions related to our mortal end, especially as it is lived nowadays in North America.
How is it that people die so differently, of such different causes, and also with such seemingly different amounts and types of pain? How do so-called advances in medicine affect our dying? Why do so many of us seem to be dying protracted deaths? Perhaps most of all, my observations and engagements in that nursing home cause me to wonder about differences in attitudes toward pain, suffering, and mortality.
Some residents were so calm. Some seemed so depressed. A few, like my father, seemed agitated, if not downright terrified. And a few were perpetually cheerful. Maybe I'm on the wrong track here, but it seemed to me that those calmer and happier individuals must have had previous experiences that allowed them to accept, to truly take in, the idea that being alive means that they will feel pain, perhaps suffer, and for sure die one day. Maybe that knowledge of mortality and that attitude of acceptance have allowed them to live their lives — their "healthy" years and also perhaps their debilitated periods — in a more rich and conscious fashion. What kinds of experiences do you suppose allow us to develop consciousness of death?
What allows us to come to believe that dying is okay? Actually, more than that, that living with a consciousness of death is not just okay, it's actually beneficial to think some about our own dying. I don't endorse focusing exclusively on the fact that we will all die one day. Rather, I think I mean that having some kind of substrate knowledge of our mortality helps us to recognize life for what it is, temporary, and therefore to be treasured all the more deeply and consistently. Does it follow that I judge other people's choices — conscious or unconscious — about living with or refusing knowledge of death? I guess I'm writing to you now so that we can jointly puzzle out these issues.
The philosopher Friedrich Nietzsche is credited with saying that what doesn't kill you makes you stronger. Maybe that's part of the answer to why some people can come close to the dying, and even close to their own dying, and not be afraid or repulsed or numb. Speaking of Nietzsche, in the weeks I just spent with the very ill, I found myself recalling a lot of the literature I've read in my life yet had never before put into some category in my head called "lessons on mortality." I've been thinking, for instance, of a novel by the great German poet Rainer Maria Rilke. In an early chapter of The Notebooks of Malte Laurids Brigge, the protagonist recounts the death of one of his ancestors, his paternal grandfather. He reflects that each of us has our own death inside of us the way that a piece of fruit has its stone. Similar to the pits, seeds, and stones in various types of fruit, those deaths can be quite different. This death of his grandfather was very loud, protracted, and imposing; everyone in the castle was subjected to it, whether they wanted to be or not. His suffering filled every space. Something about my father's struggle right now resembles what is described in those pages, or at least how they are stored in my memory.
Come to think of it, today is the anniversary of my own paternal grandfather's death. Which reminds me that I want to exchange thoughts with you at some point on the experience of sudden death, since my grandfather dropped dead of a massive heart attack at age sixty-five.
Do unexpected deaths like his, or like the murder of my friends the Zantops, or those caused by accidents come upon people so fast that there is no time for fear or other forms of anticipation? Do some of us die without knowing we are dying? Certainly popular belief holds this to be true. If consciousness is what distinguishes humans from other animals, can our consciousness fail us at the ultimate moment of our death?
I have to leave it here for now, Steve. I await your response to which I hope to "listen" attentively.
Irene
Cornish, NH July 7, 2011
Good evening, Irene,
There is so much that is important, intriguing, and mystifying in your e-mail. I'll never cover everything it provoked in one reply.
First, about our connection: I think of it as a truly important new development in my life. Whatever comes of our exchange of thoughts and writings, I feel as though I'm opening an unexpected gift whose layers and true meaning I'm a long way from understanding.
Many of the questions you asked in your letter of July 4 may not be answerable. One of those, I suspect, is why you and I have come to be comfortable with the concept of death and being with people who are dying. I don't know much about your background — although since I have read your book Daddy's War, I probably know more about yours than you do about mine — but I suspect that we had very different early-life experiences. If we are at the same point now in this regard, we arrived here by different routes. I know very well that I had a powerful fear of death for many years, and so I was confused to later discover my own comfort level with being around dying people. I wondered if it had something to do with the notion that if you stand really, really close to the monster, it won't see you. Or maybe just that if I'm in the room with death while it's tending to someone else, it won't notice me. Maybe I'm like Boo Radley from To Kill a Mockingbird, standing in the corner shadows.
I attended a lot of wakes and funerals as a young person, but none of them, even those of older family members, had much of an impact on me. It was all pretty perfunctory, and talking about such things was not something we did in my family. I was an altar boy for several years and served at quite a few funerals and even more regular Masses, and the only significant difference between them that I recall now is the pervasive smell of incense at the former. And, of course, the casket.
Once, when I was quite young, my mother was in the hospital for some not-too-significant illness, and I made a card for her that said something like, "I hope you get better soon, but if not I've reserved a place in heaven for you." Can you imagine — suggesting she might die? I got some serious hell for that. Another time, when my grandfather was very sick following a car accident that damaged his heart, we all went to see him in the hospital, and when I went to his bedside, for some reason I spoke to him really loudly and slowly, as though being very ill meant he was probably deaf or simple-minded. I got in trouble for that, too. So, as you can see, I didn't have early exposures to illness and dying that fostered understanding or improved my level of comfort.
Why am I so at ease with it now? I wish I could say for sure. Maybe it's my underdog complex. When your formative years are spent feeling a little like an outsider within the family, you develop a keen sensitivity for the underdog. It doesn't seem a huge leap from there to being sensitive to anyone in difficult circumstances, including extreme illness. The trick, which I'm still learning, is to not stay in the feeling-bad-for place. What you asked about in your note — being a still and comforting presence for someone who is dying — isn't truly possible if what you feel is just pity. What people want is not pity but connection. If they want to talk, they want to talk honestly and even in some depth about what is happening and what will happen. When I can be clear that I'll do that with them, they often tell me things they haven't been able, or can't even try, to tell the people closest to them. And when they want silence, they usually make that known, if I'm open to noticing.
I've had few experiences more beautiful than sitting quietly with someone who is facing the end of his or her life. Having hands on the person in the act of massage, or simply compassionate touch, at the same time just adds to it for me. It's hard to explain, but the intimacy of it, the soul-to-soul contact that I sometimes feel by touching, takes the experience of mindfulness and presence to even greater depths. The massage that I provide through Hand to Heart depends on how clients are doing that day. If they are strong enough, which they often are, it looks much like a regular massage session on a table that I bring to their homes. If they aren't able to get on a table, even with my help, I might work with them on a sofa or on their bed. If they are close to death, it's different still, with me sitting or lying alongside them, my hands on them but moving slowly and lightly, if at all. Over time, it becomes less and less about the actual massage, and more and more about offering presence and compassion and the comfort of touch. I assume you knew all of this before your recent experiences with your father in the nursing home. You obviously know it now. I think of it as holding a space for someone to do or feel or process whatever is happening, without help or judgment from me.
When we took our first long walk in April, I believe I told you about a woman I'm working with who has severely advanced kidney disease. Her situation has taken up residency in my mind again lately. Consider this: She's not a great candidate for either dialysis or a transplant because of the type of disease she has. But she won't live all that much longer without some intervention, likely a transplant. Two family members have been eliminated as donors after tests showed they aren't good matches. That left one son, whom they hadn't been considering before. He has lived a life of somewhat-risky endeavors and has had many injuries, so they all thought it wasn't a good idea for him to have only one kidney. Now they've discovered he's the only candidate. He says he'll do it, and he was cleared as a donor recently. But she's his mother, and she believes that while he's saying one thing, she might be hearing something different in the more subtle layers of his voice. Plus, even if they go through with it, there's a good chance her disease will destroy the donated kidney fairly soon, leaving her no better off and him with one kidney. How does she live with that prospect? Or that reality, if it comes to be? What she wants desperately is to be able to have a conversation with her husband and kids (the latter are in their forties) about all the nuances of the situation, all the ways of looking at it, including ways that might suggest the transplant isn't a good idea. However, she tells me that her husband is intensely focused on her getting healthy again, and so he cannot easily entertain any doubts about a transplant, not even her doubts. Her kids seem to be, at least outwardly, in the same place as their father.
(Continues...)
Excerpted from Let's Talk about Death by Steve Gordon, Irene Kacandes. Copyright © 2015 Steve Gordon and Irene Kacandes. Excerpted by permission of Prometheus Books.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Contents
Acknowledgments, 9,Preface, 11,
Chapter 1: What Is Life with Death?, 17,
Chapter 2: Is Dying an Injustice?, 39,
Chapter 3: How Do I Handle Pain at End of Life?, 61,
Chapter 4: What about Caregiving?, 79,
Chapter 5: Is Sudden Death Different?, 105,
Chapter 6: What Comes after I Die?, 129,
Chapter 7: What about Grief?, 159,
Chapter 8: What's So Great about Mortality Anyway?, 183,
Afterword: Reaping the Benefits of Our Exchange, 209,
Appendices: Resources and Inspirations for Continued Thinking about Mortality, 215,
Appendix A,
Suggested Resources and Inspirations for Ordinary Mortals, 216,
Suggested Resources and Inspirations for Caregivers, 219,
Suggested Resources and Inspirations for Individuals with Life-Changing Illness and Their Families, 221,
Appendix B,
Suggested Resources and Inspirations for Group Discussion, 224,
Suggested Works of Literature Dealing with Mortality, 227,
Notes, 229,
Index, 239,