Clayton - Demystifying hospice inside the stories of patients and caregivers

Demystifying Hospice

ROWMAN & LITTLEFIELD

Lanham Boulder New York London

TM The paper used in this publication meets the minimum requirements of American National Standard for Information Sciences Permanence of Paper for Printed Library Materials, ANSI/NISO Z39.48-1992.

Printed in the United States of America

This book exists because of my hospice patients, caregivers, and families. I honor them and thank them for sharing their lives with me, teaching me about living and dying.

My hospice and hospital colleagues and American Cancer Society family modeled how to work as a team, make a positive difference in peoples lives, and give hope. Thank you.

My husband, an excellent writer himself, my rock, supporter, editor, and encourager, who stayed positive, patient, and kind and loved me through it all. There will never be enough thanks.

Our Oak Harbor Writing Group: Kelly Gust, Patrick Craig, Bill Walker, Erika Jenkins, Dale Clayton, and Ina Ormea creative group of folks excited about writing in many different genres, who read and read and reread, critiqued, and loved my book. Huge thanks.

Much appreciation to my acquisitions editor, Suzanne Staszak-Silva, challenging me with a new format that I learned to love, quizzing me, answering my questions, guiding me through putting it together. Thanks to assistant acquisitions editor, Mary Malley, for her kind and quick responses and good information.

Thanks to Chris Fischer at Rowman & Littlefield for skillfully guiding my book through the many steps of production with patience and kindness, and to Kim Giambattisto, my necessary detail person. I appreciate Kelly Quarrintons counsel in the complex world of publicity and social media.

Thanks to the Rowman & Littlefield Publishing Group, my first choice because they make it possible for readers, educators, health care professionals, social workers, spiritual guides, administrators, librarians, and patients, caregivers, and family members to have easy access to this information.

Agent Nancy Rosenfeld of AAA Books Unlimited, thank you for being excited about my project, encouraging me, and working fast and well to acquire just the right publisher.

I honor and thank my teachers and mentors who helped me understand the world in a bigger way: Frank Knittle (RIP) who urged me to ignore the freshman comp syllabus and get on with writing some bigger things; Bob Gardner, who opened my mind to sociological thinking and helped me put my world together in a meaningful way; John Jones, who opened the world of belief systems that affect everything I do; Doug Clark, who prophetically saw and contributed to my bigger interests; Charles Teel (RIP), model for justice and social activism; Gottfried Oosterwal (RIP), who guided me in medical anthropology; and Eugene Ramsey, irreverent and always pushing me to do the new and innovative and to choose what I really want to do. Thanks especially to Terese Thonus, teacher, writer, and author and my friend, and model in so many ways.

Friends who give me joy, help me really see and understand myself, help me think and believe in myself, who know me well, and continue to see the good in me. They are vital to me, my view of myself, and my courage. Too many important ones to mention them all, but for sure Ill include huge thanks to Elaine and Karen, my almost sisters since grade school, Liz and Liz, Ellen, Jann, Renee, Beth, Valerie and Marilyn, Janet, Jan, Audrey, and Bonnie.

Familymy organized and thoughtful father, my tender and encouraging mother, my kids and grandkids who give me joy and hope for the future, my sister, Carol, and adopted brothers, Chris, Tim, and Robinthanks to each of you for being there for me always.

Hospice is extraordinary! I write to share stories about my patients who chose hospice care and focused on quality of life instead of quantity of time. They were more comfortable physically and emotionally than they had thought possible as their caregivers and the hospice team worked together to make the end of their life the best it could be. It is my passion to help readers become more comfortable accepting or requesting hospice comfort care when no more treatment for cure is available or desired.

Caregiving at the end of life is one of the final expressions of love. When people are very ill, they usually want to be at home with those they love, symptoms controlled, sharing stories, playing games with children or grandchildren, and eating brownies. Throughout history and in most cultures, families have offered that care, and hospice makes it possible for them to do so again. I want to encourage the forty million caregivers in the United States, 40 percent of whom are men, and inform them how they can have help with this difficult and complicated work. Most of us will likely become a caregiver to a spouse, child, parent, sibling, or friend. These stories will lift your spirits, touch your heart, and teach about hospice care.