Maggie Callanan - Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life

CONTENTS

Dedicated with love
to
Ellie, Tallie, Lily, Bear, and Will

The brightest stars in my universe
who light up my life with immeasurable joy

And
with gratitude
to all the dedicated home health aides and
certified nursing assistants
who are the backbone of hospice care
and critically important to our medical system,
but often are not given the respect and recognition
they so richly deserve.
Thank you for being there for my patients and for me.
I could not do what I do without you.

The stories in Final Journeys are true. Names and other identifying details of patients and their families have been changed to protect the privacy of those involved. If any incidents described in this book seem familiar to the reader, it is because such experiences occur frequently in the care of the dying.

INTRODUCTION:

I Dont Know How to Do This

My father was second-generation Irish American, a proud, meticulous man.

He was a career diplomat for the State Department, and honor and dignity were his core values. He was introspective by nature, a man of few words, but the things he did say to me in our private talks became anchors in my life. His introspection intensified in 1981 as he became sicker and more debilitated from the emphysema and heart disease that would eventually take his life.

I lived in a neighboring state, a forty-five-minute drive from my parents home. I had two young children at this point and worked full time, but I visited my parents as often as I could to help them as they dealt with my fathers illness. They had hired a private nurses aide, Sela, who lovingly tended to his personal care. My mother spent her time cooking, running up and down the stairs to meet my fathers many fastidious requests, and worryingafter being married for forty-five yearsabout how she would cope with the rest of her life alone.

I just wanted to be there and do whatever I could to make my father know how important he was to me, and to share with my mother in our common grief. I cleaned, shopped, cooked, and rubbed my fathers backwhen he let me. Often I just sat on the bed near him and held his hand, grateful for each moment we were together. But it never felt like enough. I wasnt ready to let him go, even as his inner focus intensified and he seemed to be getting further and further away from us.

Holding his hand, I thought of what I had learned from him throughout my life. So much was by example rather than by words. I never ceased to be moved by the image of this brilliant and successful man kneeling humbly in prayer like a child by the side of his bed every night. It was never discussed, and we were never told we had to do the same. But my fathers nightly ritual of prayer was important to him, and he never missed ituntil the awful night when he was too weak to get up and my mother had to call for a neighbors help to lift him into bed. That was when we knew that his life had really started to unravel. He never knelt again, but he seemed to be lost in thought, or possibly prayer, much more often as the days and weeks went by. I recall wondering what could be important enough to rob us of his attention. And yet I had a strong sense that I should not intrude: he was clearly busy, mentally and emotionally, on something very important. I had the feeling that when he finally shared it with me it would change my life.

So it was with excitement and anticipation that I ascended the stairs to his bedroom near the end of his illness when my mother said he wanted to talk to me. He patted the chair next to his bed, inviting me to sit near him. He seemed to have a particularly purposeful gaze that afternoon. He put his hand over mine. This is it! I thought, and I felt my heart race.

He spoke with a determination that was my fathers to the end. Listen to me, he said. This is important. Ive figured it out. He paused.

What, Dad? Tell me, I finally said hesitantly.

The odds are against us, he said. One out of one dies. I felt an almost comical disbelief. Thats it? I thought. Thats what hes been working on all this time?

Then he continued: There are classes in parenting, financial planning, maintaining your house, building a deck. Why arent there how-to classes in dying? Why dont we talk about death? I dont know how to do this. He looked deep into my eyes. I want to do it right. How can I be a good example to all of you in my dying? I have tried to live my life right, and now I want to die right! He gripped my hand with surprising strength. What does it feel like to die? he asked with an urgency that I had never before heard in his voice.

I was unnerved by his profound questions, but the good nurse in me fumbled for an answer. I explained what Id learned in school about vital signs, electrolytes, and other bodily processes. But my father just shook his head and asked again, But what does it feel like to dienot the physical part, the feeling part? If no one gets out of this world alive, why dont we know these things? Why do we go in fear? At that moment my personal and professional journey changed.

The fibers that weave the cloth of who I have become were formed in large part by my hospice experiences. Hospice has never been just work for me; rather, it has become a philosophynot of dying but of living. Much of what you read here will refer to hospice because that is how I understand the world. But I am also aware that even today, only about 30 percent of people in the United States die under the care of hospice, and no matter what circumstances have brought you to these pages, I believe that what I have learned can be of comfort and use to you. I am writing this book for anybody and everybody who faces the profound journey called dying. I am writing this book for all of us.

When my father reached the final stage of his illness, I had already been a nurse for eighteen years, but I had been with hospice for only a year and a half. Hospice, which is now a huge worldwide movement, began in the Middle Ages when Irish convents on pilgrimage routes opened their doors as places of shelter where the tired, sick, or dying could rest and receive food and care. Centuries later, hospice still refers to a safe place of shelter that provides care and comfort for travelers on a journey.

In 1967, Dame Cicely Saunders, a British physician, opened the first modern-day hospice, St. Christophers, outside London. She and her staff implemented a sophisticated approach to the care of the terminally ill using a new concept called palliative care. The treatments they provided sought not to cure the patient but rather to control the symptoms of discomfort, especially pain. St. Christophers continues to be the prototype for the thousands of hospices today.

I loved the challenge of working in this field of specialized care for the dying. I was amazed at what could be done to keep people free of physical pain and suffering in the last stages of their life, while they were in familiar and comforting surroundings, often at home, and being cared for by their friends and families. I found that the hospice philosophy blended the best of modern medicine with true compassion and creativity.