Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life [NOOK Book]

Overview

For more than two decades, hospice nurse Maggie Callanan has tended to the terminally ill and been a cornerstone of support for their loved ones. Now the coauthor of the classic bestseller Final Gifts passes along the lessons she has learned from the experts—her patients. Here is the guide we all need to understanding the special needs of the dying and those who care for them.

In her work with thousands of families, Maggie Callanan has ...
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Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life

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Overview

For more than two decades, hospice nurse Maggie Callanan has tended to the terminally ill and been a cornerstone of support for their loved ones. Now the coauthor of the classic bestseller Final Gifts passes along the lessons she has learned from the experts—her patients. Here is the guide we all need to understanding the special needs of the dying and those who care for them.

In her work with thousands of families, Maggie Callanan has witnessed the tears, the love—and the confusion and conflict—this final passage can evoke. Now, with honesty, compassion, and even humor, she empowers patients and their families to write the last chapter of their lives with less fear, less pain, and more control—so that all involved can focus their energies on creating the best possible ending.

From supporting a husband or wife faced with the loss of a spouse, to helping a dying mother prepare her children to carry on without her, Callanan’s poignant stories illustrate new ways to meet the physical, emotional, and spiritual challenges of this difficult and precious time. She brings welcome clarity to medical and ethical concerns, explaining what to expect at every stage. Each brief chapter also conveys a home truth about making crucial treatment decisions, supporting the patient’s dignity and individuality, and lightening the burden on caregivers.

Final Journeys is designed to be your companion, resource, and advocate. From diagnosis through the final hours, it will help you keep the lines of communication open, get the help you need, and create the peaceful end we all hope for.

From the Hardcover edition.

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Editorial Reviews

School Library Journal

Callanan (coauthor, Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying) has worked for more than 25 years as a hospice nurse; here, she aims to offer the dying and those close to them practical advice grounded in that experience. Interspersing stories from her work and life, she examines such topics as potential family conflicts, ethical dilemmas faced by health-care workers, and the various stages of the grieving process. She emphasizes that the terminally ill should be listened to with care and compassion and that their right to comfort should not be overlooked in sometimes futile attempts to prolong life. She also stresses the need for early discussion of end-of-life issues and the documentation of any decisions reached. The advice is unblinking and useful, but it is surrounded by an excess of fairly artificial re-created dialogs. Further, some readers might find the forays into subjects like afterlife communication to be at odds with the goal of providing useful and practical advice. Dennis McCullough's My Mother, Your Mother: Embracing "Slow Medicine," the Compassionate Approach to Caring for Your Aging Loved Onesoffers similar information. Recommended for large public libraries.
—Dick Maxwell

Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

From the Publisher
“What do we all want, when we approach the inevitable? For a wise, hilarious, sensitive, and pragmatic nurse to sit at our bedside and tell us truths that are helpful, healing, and humane. Maggie Callanan is just that nurse, and Final Journeys is exactly that truth-telling.”—Stephen P. Kiernan, author of Last Rights: Rescuing the End of Life from the Medical System

“Maggie Callanan is one of the most experienced, smart and fierce hospice nurses I know. Her insights ring true, and her wise, confident voice is an invaluable companion through this unfamiliar and often frightening final journey.”—Ira Byock, M.D., Professor of Palliative Medicine, Dartmouth Medical School and author of Dying Well and The Four Things That Matter Most

“Filled with warmth, insight, compassion, and personal stories, Final Journeys will prepare you for your own transition, and it is must reading for everyone who has relatives and loved ones who are aging, seriously ill, or dying.”—Bill Guggenheim, co-author of Hello from Heaven!

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Product Details

  • ISBN-13: 9780553904239
  • Publisher: Random House Publishing Group
  • Publication date: 3/25/2008
  • Sold by: Random House
  • Format: eBook
  • Sales rank: 294,702
  • File size: 539 KB

Meet the Author

Maggie Callanan, R.N., has specialized in the care of the dying since 1981. She lectures widely to lay and professional audiences on death and dying, bereavement, and hospice care. Maggie is the author of Final Journeys and co-author of Final Gifts. She lives on the New England coast.

From the Hardcover edition.

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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 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.

From the Hardcover edition.

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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
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Sort by: Showing 1 – 13 of 10 Customer Reviews
  • Anonymous

    Posted June 10, 2008

    A reviewer

    When dealing with end-of-life issues, many people have found Maggie Callanan¿s (co-authored) book, Final Gifts, to be both comforting and inspirational. She has now followed up with its ¿prequel,¿ Final Journeys. As before, Callanan combines a wealth of practical experience in Hospice nursing with her own remarkable blend of compassion and humor. Anyone who faces the passing of a loved one really must read this book anyone consciously facing their own passing will hope that Callanan - or her clone! - can attend them at the end. One of the most useful aspects is her description of symptoms of the end of life that are typical, yet which we might not recognize and respect for what they are. As the author makes clear, there is no one path for the final journey, and it behooves those nearby to recognize and respect the style of their loved one. For example, in an attempt to ¿be there for them¿ it is possible to tire the patient with too much attention, as they are attempting to rest and ¿wind down.¿ Equally, it is necessary to recognize when they may need to see a certain person in order to accomplish the task of closure and resolving ¿unfinished business¿ with that person. It is necessary to listen closely to the patient without one¿s preconceived notions intervening. Spiritual, dietary, and companionship needs vary widely depending on the patient it¿s truly not ¿one size fits all.¿ Callanan defines a problem that I and perhaps many of us have experienced: the feeling that your loved ones will find it terribly sad, almost impossible, to go on with their lives without us when we die. Apparently in many cases, one important task of the caregivers is to give the patient permission to go, assuring them that we will be all right afterwards, while acknowledging the closeness of the bond between us. Callanan is so remarkable in her ability to convey her experiences and feelings through stories that you will be completely engaged throughout this book with a renewed appreciation of her humanistic approach to nursing. Her caring approach to both the patient and the family rescues some potentially explosive situations with people you come to care about through her descriptions. And if you can read Chapter 35 without shedding a few tears, you really need to have your DNA checked out to make sure you¿re really human!

    5 out of 5 people found this review helpful.

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  • Posted January 20, 2011

    a book everyone should read

    this is the book that helped me get through my husbands terminAl llness

    2 out of 2 people found this review helpful.

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  • Posted May 14, 2010

    I Also Recommend:

    Compassionate Care Shared

    I have worked in hospice care for many years and vigiled many patient/friends. Maggie Callanan takes you inside the homes and lives of families and loved ones and shares the dynamics of what it is really like to make decisions from the aspect of caregiver and as the patient and this blending of love and support and how hospice often has the honor of being the conduit for this sacred piece of "healing for the highest good". The longest journey we take is from our heads to our hearts". This is what I have learned from my experiences in hospice. It is a passionate and loving service and I certainly feel that connection with this author. She shares her knowledge, as well as her compassion. Loving Kindness-true hospice care. Thank you.

    2 out of 2 people found this review helpful.

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  • Posted August 23, 2010

    I Also Recommend:

    Born to Die

    I wanted to better understand the bureaucracy of dying. She guides you through the end of life stages and helps you plan your advance health directives.

    Was this review helpful? Yes  No   Report this review
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