Table of Contents
Introduction: "I Don't Know How to Do This" 1
Reframing the Journey 7
"Tools, Not Tissues" 9
"Don't Tell Mom She's Dying. It'll Kill Her!" 18
Breaking the Silence 24
"We're Not Giving Up! We Have Hope!" 31
"Only the Best for My Father" 38
"I Don't Know... My Doctor Has My Records" 44
Making Difficult Decisions 49
The Right to Be Comfortable: Choosing Palliative Care 51
"I'm Dying! Of Course I'm in Pain!": Expert Pain and Symptom Control 56
Choosing Treatments-and Knowing Which Are Optional 63
It's Hard Enough to Die Once: Deciding About a Do-Not-Resuscitate Order 73
"We Can't Just Let Him Starve to Death!": Deciding About Artificial Nutrition 81
Making Ethical Decisions 92
Sharing the Journey 99
"I Love You, Mom, and I Want to Help, but I'm Not Moving to Miami!" 101
Listen to Your Body 108
Family of Birth, Family of Choice 113
How Friends Can Help 118
When Little Eyes Are Watching 127
People Die as They Live-Intensified 135
Avoiding Potholes 139
Tripping over YourRoots-and Crashing into the Family Tree 141
"Whose Death Is It, Anyway?" 145
Finding Power in a Powerless Situation 152
Caregiving in a Wounded Relationship 157
Understanding Cultural Differences 165
The Importance of Spiritual Influences 176
Don't Let the Dying See You Cry- and Other Myths 184
Long Road ... Getting Weary 193
"I Could Die Laughing" 195
Memory Making 202
"It Feels Like We're Losing Her Before She Dies!" 212
Our Pets May Know More than We Do 216
The "Final Gifts" of Nearing Death Awareness 222
Communicating Without Words 234
Coming to the End 239
What's Normal for Dying Isn't Normal 241
"It-All-Goes-to-Hell-in-a-Handbasket Day" 254
Being with, Not at, the Dying Person 260
"I Need Your Permission to Go" 268
The Final Hours 274
One Journey Ends, Another Begins 279
On the Toll Road: The Healing Power of Crying 281
Doing the Grief Work, Day by Day 285
"When I Think of Granddad, I Feel Lonely in My Throat": How Children Grieve 291
"For a Moment I Could Small Mom's Perfume" 303
Appendices 309
Your Strongest Tools Are Made of Paper: Advance Directives 311
The Dying Person's Bill of Rights 319
The Hospice Medicare Benefit 321
Recommended Reading and Resources 325
Acknowledgments 333
About the Author 337
Read an Excerpt
Chapter One
“Tools, Not Tissues”How beautiful these leaves were just last week, I thought. How ironic that they’re the most vibrant right before they fall and die. Now all we’re left with is big piles of wet drabness and this bone-chilling weather.
This is how so many patients feel, I thought. One moment your life is going along beautifully, and the next your doctor walks in with your tests in his or her hand and says, “I have bad news.”
Once you or someone you love receives that diagnosis, your lives will never be the same. A good friend, diagnosed with cancer, told me, “The disease took away life’s innocence. I always feel like there’s a stranger lurking in the shadows now, ready to jump out and do me harm again. The shadow person—that negative presence—is always there.”
I thought of my friend and the end of innocence as I steered my car past the leaf piles toward the only stretch of visible curb in a neighborhood of wide lawns and large colonial-style homes. Then I quietly reviewed the intake information sheet on the new patient I was about to meet.
Jake
Jake was barely sixty years old, diagnosed with pancreatic cancer just three months before, and already terminally ill. He and his wife of many years had two married children, both living nearby, both with babies of their own. How sad, I thought: just as life was getting easier—kids launched, retirement around the corner, time to travel and enjoy the benefits of all those years of hard work, grandbabies to spoil—this happened. How unfair!
I suspected that this family, like somany others I meet, had held off calling hospice for as long as possible, and now they were near crisis. As I climbed the steps to the front door, I noticed a woman glancing through the bay window of the living room. Was this Jake’s wife, Julie? I rang the bell and sensed her presence behind the front door, but it was a long minute before she opened it, her face puffy from crying.
Even after so many years as a hospice nurse, I’m still in awe of the raw courage it takes to open the door and let someone like me in for the first time. Most of the patients and families that I work with have clung to the hope of a miracle, a medical breakthrough, or even a misdiagnosis until the eleventh hour. My presence means that the end is unavoidable. Those who have acknowledged the truth often feel that the limited time they have left together is private and fear that my visits will be an intrusion. I know that everything I represent is frightening. Nobody ever wants to have to deal with me. Yet I knock on front doors again and again because in my heart I know I can make these last weeks or months better and more meaningful.
Julie introduced herself and escorted me into a sun-filled kitchen decorated with blue Delft tiles.
“Tell me about your husband,” I said to Julie as we sat down at the kitchen table.
It always interests me what people do with that question. It’s like asking someone you meet, “What’s going on in your life?” instead of “How are you?” The first question allows for real information to be shared; the second almost always elicits a perfunctory response. My first goal when I visit a new patient and his or her family is to connect in a genuine way. I need to know their focus, concerns, and fears. Julie’s answer would tell me these things.
Julie gave me a list of her husband’s symptoms and problems, and details of the treatments he had undergone. They had been in and out of hospitals for tests. They had traveled out of state to major cancer centers for second, third, and fourth opinions. The treatments they had chosen quickly overwhelmed Jake and had to be discontinued. Julie described a regimen that sounded truly hellish. And now they were finally back at home and having to deal with me. They were out of hope and running out of time. I took a deep breath, now knowing what direction to take. Julie was totally focused on the physical part of Jake’s illness, so that’s where we would start.
“I can see how much you and your husband have gone through in the past months. You must be physically and emotionally exhausted. I’m sure I’ll have some very specific suggestions for better relief of his physical problems, but what else can I do today to help you?”
Julie’s face quivered as she attempted to keep her composure. I wanted to reach across the table and put my hand on her arm to comfort her. My concern must have showed, because she suddenly drew herself up and almost fiercely said, “Please don’t be nice to me! I feel like I’m made of bits of paper that are barely held together. The slightest kindness and I will fall apart and blow away. I must be strong for him. He’s depending on me. I don’t know how to do this! I need strength, not sympathy. I need tools, not tissues. I’m terrified! Help me!”
“That is exactly why I am here,” I said. “Of course you don’t know how to do it. No wonder you’re terrified. Your husband’s illness is being carried in his body, but its devastation is rippling through his life, your life, and the lives of your children and grandchildren, his colleagues, and your neighbors and friends. Everyone feels the turmoil. Hearts start breaking the moment the word incurable is uttered. What’s vitally important is to focus on what you can do, rather than on what has been done and failed or how little time is left.”
“It’s just so overwhelming,” Julie said. “I don’t know what I need anymore.”
I’ve heard these words so many times—the first words on the journey of dying. I reassured Julie. “I can tell you’ve done a great job of staying involved and informed at every stage,” I said. “I am here to ensure that you have the very best possible care from the experts you need for each problem your husband might have or develop. I’m also here to help everyone else in the family deal with this life-changing event in as positive a way as possible. I will coordinate the people who will be taking care of all of you. This is a team that will include your doctor, a social worker, a chaplain, a nursing assistant, volunteers, a grief counselor, a nutritionist, a physical therapist, and me, your nurse. So not for one moment do I want you to think that you are in this alone, because you’re not.”
“But the doctors say there’s nothing more we can do. He’s going to die,” Julie sobbed.
“How frightening and heartbreaking it must have been to hear that news,” I replied. “But there’s a great deal we can do. We have highly effective and easy ways of keeping your husband as comfortable and alert as possible. We can help him—and you—live as fully as possible every day he has left. This can be a very creative, intimate, and loving time for both of you—a time for making and celebrating memories that will last forever in your hearts. I am here to help you both be less frightened and more in charge. We can do this together!”
“I just want things to be the way they were,” said Julie. “This is no way to live.”
“This has changed your life,” I replied, “but it need not destroy it. I suspect that each chapter of your husband’s life story has been an important and rich one. I want to help you write the last chapter in a way that is a fitting tribute to him and the life you have created together. This is our chance to show him that it has mattered that he has been on this earth. I know you want to show him how important he has been to you.”
Julie’s eyes widened. I could see her focus shift, at least for a moment, away from the fear and the sense of burden that had been so much a part of Jake’s physical journey. When I meet new patients and their families, as early as possible I try to reframe the situation, to help people understand the loving and nurturing emotional journey that dying also includes. For a moment Julie seemed to be lighter, to grasp this possibility, but then her shoulders slumped again.
“But he’s been so withdrawn, uncommunicative, almost sullen,” she said. “And before that he was angry, snapping and snarling. Who could blame him? I think he just couldn’t accept what was happening. That’s why it took us so long to call for help,” Julie said sadly.
“Anger and denial are two normal responses to terrible news,” I said. “You may have heard of the psychologist Dr. Elisabeth Kübler-Ross, who changed the way we all look at the last stage of life with her book On Death and Dying. In it she describes five stages that dying people often go through: from denial, anger, and bargaining to depression and finally acceptance. These stages aren’t necessarily a linear process; sometimes you can hear a seriously ill person touch on several during a single conversation. Not everyone experiences all of them, but I’ve learned that most people seem to experience some. This is true for the family as well as the patient.
“Denial is my personal favorite,” I went on. “I try to use it in my own life as much as I can!” I was pleased to see a half smile on Julie’s face as she relaxed a bit. “Denial is a wonderfully strong crutch that supports a person who is not yet emotionally ready to face what’s happening all at once. If denial isn’t causing any harm, let it be, unless you have something stronger to put in its place.
“You’ve already described anger. That’s an easy stage to see and understand,” I continued. “Bargaining is often very private. A man may promise that he’ll work with the handicapped if he is cured, or a woman might resolve to go to church regularly if she can see her children grow up. We are usually not aware of someone else’s bargaining. And then there are the stages of depression and, finally, acceptance.”
“Well, I would say that Jake has been depressed recently.”
“Let me go meet him. I’ll check him and see if there’s something we can do about that.”
I went to Jake, whose den had become his sickroom so that he wouldn’t have to go up and down the stairs. It was warm and inviting, lined with books. A hospital bed was set up in front of the fireplace. Jake was very foggy, in that drifty, dreamy state that pancreatic cancer often induces when it has spread to the liver.
“I’ve met your lovely wife,” I said, biding my time, trying to help him lift himself out of the fog. “This is a beautiful house.”
His eyes gradually became more focused and alert. I began to gently question him about how he was feeling and what concerned him. His voice was weak and wavering and his responses seemed dull and flat—not unusual for someone with depression. I asked what worried him most.
“I think this is too much for Julie,” he said despondently. “I don’t know how she’ll manage to take care of me. It’s too much. It’ll kill her! Maybe it would be better for me to go to a nursing home.”
Jake’s fear was not so much about his own illness and death as it was about his wife’s welfare. It moved me that he was willing to sacrifice staying in his own home to help her.
Read a Sample Chapter
Final Journeys A Practical Guide for Bringing Care and Comfort at the End of Life
By Maggie Callanan Bantam Copyright © 2008 Maggie Callanan
All right reserved. ISBN: 9780553803679
Chapter One
“Tools, Not Tissues”How beautiful these leaves were just last week, I thought. How ironic that they’re the most vibrant right before they fall and die. Now all we’re left with is big piles of wet drabness and this bone-chilling weather.
This is how so many patients feel, I thought. One moment your life is going along beautifully, and the next your doctor walks in with your tests in his or her hand and says, “I have bad news.”
Once you or someone you love receives that diagnosis, your lives will never be the same. A good friend, diagnosed with cancer, told me, “The disease took away life’s innocence. I always feel like there’s a stranger lurking in the shadows now, ready to jump out and do me harm again. The shadow person—that negative presence—is always there.”
I thought of my friend and the end of innocence as I steered my car past the leaf piles toward the only stretch of visible curb in a neighborhood of wide lawns and large colonial-style homes. Then I quietly reviewed the intake information sheet on the new patient I was about to meet.
Jake
Jake was barely sixty years old, diagnosed withpancreatic cancer just three months before, and already terminally ill. He and his wife of many years had two married children, both living nearby, both with babies of their own. How sad, I thought: just as life was getting easier—kids launched, retirement around the corner, time to travel and enjoy the benefits of all those years of hard work, grandbabies to spoil—this happened. How unfair!
I suspected that this family, like so many others I meet, had held off calling hospice for as long as possible, and now they were near crisis. As I climbed the steps to the front door, I noticed a woman glancing through the bay window of the living room. Was this Jake’s wife, Julie? I rang the bell and sensed her presence behind the front door, but it was a long minute before she opened it, her face puffy from crying.
Even after so many years as a hospice nurse, I’m still in awe of the raw courage it takes to open the door and let someone like me in for the first time. Most of the patients and families that I work with have clung to the hope of a miracle, a medical breakthrough, or even a misdiagnosis until the eleventh hour. My presence means that the end is unavoidable. Those who have acknowledged the truth often feel that the limited time they have left together is private and fear that my visits will be an intrusion. I know that everything I represent is frightening. Nobody ever wants to have to deal with me. Yet I knock on front doors again and again because in my heart I know I can make these last weeks or months better and more meaningful.
Julie introduced herself and escorted me into a sun-filled kitchen decorated with blue Delft tiles.
“Tell me about your husband,” I said to Julie as we sat down at the kitchen table.
It always interests me what people do with that question. It’s like asking someone you meet, “What’s going on in your life?” instead of “How are you?” The first question allows for real information to be shared; the second almost always elicits a perfunctory response. My first goal when I visit a new patient and his or her family is to connect in a genuine way. I need to know their focus, concerns, and fears. Julie’s answer would tell me these things.
Julie gave me a list of her husband’s symptoms and problems, and details of the treatments he had undergone. They had been in and out of hospitals for tests. They had traveled out of state to major cancer centers for second, third, and fourth opinions. The treatments they had chosen quickly overwhelmed Jake and had to be discontinued. Julie described a regimen that sounded truly hellish. And now they were finally back at home and having to deal with me. They were out of hope and running out of time. I took a deep breath, now knowing what direction to take. Julie was totally focused on the physical part of Jake’s illness, so that’s where we would start.
“I can see how much you and your husband have gone through in the past months. You must be physically and emotionally exhausted. I’m sure I’ll have some very specific suggestions for better relief of his physical problems, but what else can I do today to help you?”
Julie’s face quivered as she attempted to keep her composure. I wanted to reach across the table and put my hand on her arm to comfort her. My concern must have showed, because she suddenly drew herself up and almost fiercely said, “Please don’t be nice to me! I feel like I’m made of bits of paper that are barely held together. The slightest kindness and I will fall apart and blow away. I must be strong for him. He’s depending on me. I don’t know how to do this! I need strength, not sympathy. I need tools, not tissues. I’m terrified! Help me!”
“That is exactly why I am here,” I said. “Of course you don’t know how to do it. No wonder you’re terrified. Your husband’s illness is being carried in his body, but its devastation is rippling through his life, your life, and the lives of your children and grandchildren, his colleagues, and your neighbors and friends. Everyone feels the turmoil. Hearts start breaking the moment the word incurable is uttered. What’s vitally important is to focus on what you can do, rather than on what has been done and failed or how little time is left.”
“It’s just so overwhelming,” Julie said. “I don’t know what I need anymore.”
I’ve heard these words so many times—the first words on the journey of dying. I reassured Julie. “I can tell you’ve done a great job of staying involved and informed at every stage,” I said. “I am here to ensure that you have the very best possible care from the experts you need for each problem your husband might have or develop. I’m also here to help everyone else in the family deal with this life-changing event in as positive a way as possible. I will coordinate the people who will be taking care of all of you. This is a team that will include your doctor, a social worker, a chaplain, a nursing assistant, volunteers, a grief counselor, a nutritionist, a physical therapist, and me, your nurse. So not for one moment do I want you to think that you are in this alone, because you’re not.”
“But the doctors say there’s nothing more we can do. He’s going to die,” Julie sobbed.
“How frightening and heartbreaking it must have been to hear that news,” I replied. “But there’s a great deal we can do. We have highly effective and easy ways of keeping your husband as comfortable and alert as possible. We can help him—and you—live as fully as possible every day he has left. This can be a very creative, intimate, and loving time for both of you—a time for making and celebrating memories that will last forever in your hearts. I am here to help you both be less frightened and more in charge. We can do this together!”
“I just want things to be the way they were,” said Julie. “This is no way to live.”
“This has changed your life,” I replied, “but it need not destroy it. I suspect that each chapter of your husband’s life story has been an important and rich one. I want to help you write the last chapter in a way that is a fitting tribute to him and the life you have created together. This is our chance to show him that it has mattered that he has been on this earth. I know you want to show him how important he has been to you.”
Julie’s eyes widened. I could see her focus shift, at least for a moment, away from the fear and the sense of burden that had been so much a part of Jake’s physical journey. When I meet new patients and their families, as early as possible I try to reframe the situation, to help people understand the loving and nurturing emotional journey that dying also includes. For a moment Julie seemed to be lighter, to grasp this possibility, but then her shoulders slumped again.
“But he’s been so withdrawn, uncommunicative, almost sullen,” she said. “And before that he was angry, snapping and snarling. Who could blame him? I think he just couldn’t accept what was happening. That’s why it took us so long to call for help,” Julie said sadly.
“Anger and denial are two normal responses to terrible news,” I said. “You may have heard of the psychologist Dr. Elisabeth Kübler-Ross, who changed the way we all look at the last stage of life with her book On Death and Dying. In it she describes five stages that dying people often go through: from denial, anger, and bargaining to depression and finally acceptance. These stages aren’t necessarily a linear process; sometimes you can hear a seriously ill person touch on several during a single conversation. Not everyone experiences all of them, but I’ve learned that most people seem to experience some. This is true for the family as well as the patient.
“Denial is my personal favorite,” I went on. “I try to use it in my own life as much as I can!” I was pleased to see a half smile on Julie’s face as she relaxed a bit. “Denial is a wonderfully strong crutch that supports a person who is not yet emotionally ready to face what’s happening all at once. If denial isn’t causing any harm, let it be, unless you have something stronger to put in its place.
“You’ve already described anger. That’s an easy stage to see and understand,” I continued. “Bargaining is often very private. A man may promise that he’ll work with the handicapped if he is cured, or a woman might resolve to go to church regularly if she can see her children grow up. We are usually not aware of someone else’s bargaining. And then there are the stages of depression and, finally, acceptance.”
“Well, I would say that Jake has been depressed recently.”
“Let me go meet him. I’ll check him and see if there’s something we can do about that.”
I went to Jake, whose den had become his sickroom so that he wouldn’t have to go up and down the stairs. It was warm and inviting, lined with books. A hospital bed was set up in front of the fireplace. Jake was very foggy, in that drifty, dreamy state that pancreatic cancer often induces when it has spread to the liver.
“I’ve met your lovely wife,” I said, biding my time, trying to help him lift himself out of the fog. “This is a beautiful house.”
His eyes gradually became more focused and alert. I began to gently question him about how he was feeling and what concerned him. His voice was weak and wavering and his responses seemed dull and flat—not unusual for someone with depression. I asked what worried him most.
“I think this is too much for Julie,” he said despondently. “I don’t know how she’ll manage to take care of me. It’s too much. It’ll kill her! Maybe it would be better for me to go to a nursing home.”
Jake’s fear was not so much about his own illness and death as it was about his wife’s welfare. It moved me that he was willing to sacrifice staying in his own home to help her.
Continues...
Excerpted from Final Journeys by Maggie Callanan Copyright © 2008 by Maggie Callanan. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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