Making Rounds with Oscar

by David Dosa

  I was listening.

  Afterword

  MUCH LIKE THE FAMILY MEMBERS I VISITED IN THE course of my Oscar odyssey, I have come to be thankful for what Oscar does and what he has to teach us about the end of life. But the question that people keep asking me is “How does he do it?”

  I think back to a phone call that I received shortly after my essay about Oscar appeared in the New England Journal of Medicine. The caller introduced himself as a World War II veteran from Florida. He told me that he had been a medic in Europe during the war and that his job was to evacuate injured soldiers from the battlefield.

  “Doctor, by the end of the first few months of dragging people off the battlefield, I could tell whether the person was going to live or die,” he said. “If they were going to die, there was a sweet aroma emanating from their bodies. I didn’t smell it if they were going to live.”

  There is a plausible biological explanation for that “sweet smell of death.” As cells die, carbohydrates are degraded into many different oxygenated compounds, including various types of ketones—chemical mixtures known for their fragrant aroma. Ketones are also found in abundance during episodes of untreated juvenile diabetes and doctors are taught early on in medical school to sniff the breaths of diabetics to determine if their sugar levels are high. Could it be that Oscar simply smells an elevated level of a chemical compound released prior to death? It is certainly clear that animals have a refined sense of smell that goes well beyond that of the ordinary human.

  A 2006 study, published in a leading cancer journal, suggested that dogs could be trained to identify microscopic quantities of certain biochemicals excreted by cancer cells on the breaths of lung and breast cancer patients. Similar studies over the years have also identified melanoma-sniffing dogs and earthquake-predicting fish. Is it outlandish to suggest that Oscar, a cat residing on a floor where patients with end-stage dementia routinely die, has merely learned how to pick up on a specific smell emitted in the final hours of a patient’s lifespan?

  Perhaps, but I like to think of Oscar as more than a ketone early-warning system. Ever since I was a child, listening intently as my grandfather read bedtime stories from Rudyard Kipling’s Just So Stories, I have imbued animals with human characteristics and frailties. It could simply be that we see ourselves in them—the best of ourselves, sometimes.

  On a floor where the staff has gone to great lengths to make the dying experience tolerable for the residents and their families, I’d like to think Oscar embodies empathy and companionship. He is a critical cog in a well-oiled and dedicated health care team. As the physician, it is my job to prescribe the appropriate medications and provide guidance to the family; it is the nurse’s job to provide the appropriate care; it is the minister’s job to provide the necessary spiritual counselling for the patient and their family; and it is Oscar’s job to provide the critical companionship during the final hours. He is clearly part of the team and as much a comfort to the families as he is to the patient, though in some cases he is the only family the patient has left.

  I don’t really pretend to know the nature of Oscar’s special gift—I am not an animal behaviorist nor have I rigorously studied the why and how of his behavior. Whether he is motivated by a refined sense of smell, a special empathy, or something entirely different—your guess is as good as mine. But I believe we can all learn from his example.

  Though my interviews with decedents’ families were meant to provide me with more insight into what Oscar does, I found myself learning a great deal more about the diseases that had destroyed my patients’ lives than I did about the cat. For all the mystery surrounding Oscar, there was little mystery about the devastating consequences of dementia.

  Today, there are over five million people in the United States with Alzheimer’s disease and hundreds of thousands more with other less common forms of dementia. Without new treatments, estimates suggest that this number is likely to skyrocket as our population continues to age. But the tragedy of dementia is not measured merely by the number of patients directly affected. For every patient with dementia, there are many more caregivers whose lives will never be the same.

  Recently, my wife and I joined their ranks when her mother was diagnosed with dementia. Like countless others in this country and around the world, we are entering an uncertain phase in our lives, one that will involve caring for a parent with dementia. We add this new responsibility to the myriad others of parent, professional, and spouse. Where will the extra energy come from?, we wonder. How can we find the capacity to care for yet another dependent—an adult, no less? Even though I work closely with caregivers who tackle the same issues, and have always respected their fortitude and optimism, it is always different when it happens to you and your own family. Suddenly it’s personal.

  After another exasperating phone call with her mother’s doctors, who had nothing new to suggest in regard to her failing memory, my wife turned to me for support. “Surely from all of those interviews you gleaned some words of wisdom that might help me get through this?” While every case is different and all caregivers find their own way through trial and error, coming up with solutions as different as one family is from the next, I feel confident in making a few generalizations:

  1. Take care of yourself.

  As a geriatrician I have seen countless caregivers fail physically or mentally long before the patient with dementia does. There’s good reason for this. Caregiving is a 24-hour, 7-day-a-week, 365-day-a-year responsibility. There is no time off for good behavior and the physical demands of caring for the elderly when they have dementia are profound. So too is the psychic strain of seeing someone close to you struggle. Remember, no one is ever successful for long if they go it alone. You need to share the burden of caregiving, even if it ultimately involves placing a parent or spouse in an assisted living or nursing home. You also need to maintain the body and mind by seeking the medical and emotional support needed to deal with caregiver challenges. The Alzheimer’s Association has many fantastic resources; I’ve found their local support groups to be particularly helpful.

  2. Be present.

  Easier said than done—try putting aside daily work and life responsibilities and making the time to spend with someone at the end of life. Yet so many of our day-to-day responsibilities are ultimately inconsequential. Someone can always cover for you at work, and your children will forgive you for missing a soccer practice. Animals like Oscar can teach us through their steadfastness, their patience, and their presence. They don’t have to be anywhere else except where they are. When Oscar visits his patients, he doesn’t care what time it is or whether there is somewhere else he would rather be. He is in the moment. It is so important to be able to spend time with someone with dementia—even if you think that they no longer know who you are.

  3. Celebrate the little victories but see the big picture.

  Living with someone with dementia can be a roller-coaster ride. For every little victory that brings joy—an upswing in appetite, a remembrance of a name—there is the ultimate certainty of continued decline. Those that cope best with terminal progressive illnesses such as dementia are people who can gain satisfaction from a little victory without losing the larger perspective.

  4. Become an advocate for high-quality care.

  Our medical system does not effectively deal with patients with dementia. Certainly some institutions do it better than others, but ultimately every acute-care hospital, nursing home, and outpatient office could be improved. Being an advocate for high-quality care is about being involved and asking questions. It is also about choosing your battles and understanding the limitations inherent in dementia care, particularly in the nursing home environment. It is possible to get good care or bad care at every nursing home. What makes the difference is family involvement.

  5. Love and let go.

  It is my hope that, one day, dementia will become a footnote in medical history, much like smallpox and the plague are today. We will cer
tainly be better at handling it. The treatment options available today, though, are few, and even those are seldom helpful for long. Eventually, every caregiver has to let go—whether it’s letting go and sending a loved one to a nursing home or letting go when death is near. When this time comes, please remember that letting go of a person with terminal dementia is not a sign of defeat: It is an act of love.

  Acknowledgments

  I HAVE BEEN TRULY BLESSED IN MY LIFE TO FIND MYSELF surrounded by patients, colleagues, friends, and family who I learn from every day. A full list of acknowledgments would be simply too long to print, but I would specifically like to thank the following individuals for their assistance during this project:

  First, I’d like to offer a special thank you to Sean Elder for believing in the project and helping me pull out what was good in the manuscript and make it better. I couldn’t have done it without you.

  I’d also like to offer my profound gratitude to the family members of Oscar’s third-floor patients, past and present, who spent signficant time with me throughout the writing of this book. Some of you allowed me to use your names and stories in the book, while others provided background but asked for privacy. I can’t possibly tell you how much I am indebted to the fact that you entrusted me with your innermost thoughts and personal demons. I apologize to all of you for any unintentional mistakes I have made in the presentation of the facts, for any liberties I have taken in telling your stories, and for any additional sorrow that I may have caused as we sifted through the memories.

  Thank you also to Mary Miranda, who helped me collect many of the stories that appear in this book. Mary, it is through your eyes that I first saw how much good there was in Oscar, and the wonder in your eyes as you discussed each story was truly infectious. A special thanks also to the rest of the staff at Steere House and Home and Hospice of Rhode Island. Though your work is often underappreciated, I hope this book does something to correct this travesty. You are all the true Heroes of long-term care and perform your duties with more passion, love, and attention to detail than countless other professionals—including us doctors, who receive more praise and financial reward.

  Special thanks also to Dr. Joan Teno for our many discussions about end-of-life care, the meaning of Oscar the cat, and your thoughts at every stage of the writing process. Please know that your mentorship, passion, and belief in the importance of end-of-life care have been profoundly inspirational to me. Thank you for being my sounding board over the years and, most importantly, a dear personal friend.

  Thanks also to my other medical colleagues at Steere House, at Brown University’s Center for Gerontology, the Providence Veterans Affairs Medical Center, and within the division of geriatrics. I have been fortunate to work with so many talented individuals over the years.

  As any writer will tell you, there are hundreds of talented people behind the scenes who make each book come to life.

  To Brenda Copeland, thank you for being my “cat guru”—not to mention a fabulous editor. Thank you for taking the leap of faith that a first-time author with a good story could pull this off. You were always so complimentary and knew exactly how to take a newbie under your wing. From here on out until the day I die, I will always remember to “jump right into the story” and I will never—ever—forget to use contractions! Thank you also to Ellen Archer, Will Balliett, and the rest of the staff at Hyperion for your valuable insights into the manuscript and for coaching me through the process at each step of the way.

  To my agent, Emma Sweeney, and her colleagues Eva Talmadge and Justine Wenger—you’re a first-class organization. Thank you for keeping me on the straight and narrow as I’ve learned to navigate these uncharted waters. You’ve always steered me in the right direction. As they say in the movies, “I hope this is the beginning of a beautiful friendship.”

  In closing, I’d like to offer a heartfelt thanks to my family. To my “grandparents” Eva and Jan Rocek—thank you for your love, wisdom, and all of your life stories. I will always treasure those summers together at the lake house—even if I had to stay out of Puma’s way. To Mellissa, thank you for being such an important part of our family. To my brother, Peter, and my parents Noemi and Stefan—thank you for your love and unconditional support through the good times and the bad. You are my role models in life, and I couldn’t be luckier. Finally—and most importantly—to my children, Ethan and Emma, and my loving and supportive wife, Dionne. You are my reason for living and you inspire me daily. In sickness and in health, for better or worse, please know that I will love you always. And by the way, at the end of my days, I prefer the cat over the ICU.

  Copyright

  MAKING ROUNDS WITH OSCAR. Copyright © 2010 David Dosa. All rights reserved under International and Pan-American Copyright Conventions. By payment of the required fees, you have been granted the non-exclusive, non-transferable right to access and read the text of this e-book on-screen. No part of this text may be reproduced, transmitted, down-loaded, decompiled, reverse engineered, or stored in or introduced into any information storage and retrieval system, in any form or by any means, whether electronic or mechanical, now known or hereinafter invented, without the express written permission of Hyperion e-books.

  Library of Congress Cataloging-in-Publication Data has been applied for.

  EPub Edition © December 2009 ISBN: 978-1-4013-9496-7

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