AIDS Care at Home , livre ebook

AIDS Care at Home
Also by Judith Greif
The No-Hysterectomy Option: Your Body-Your Choice (with Herbert Goldfarb, M.D.)
AIDS Care at Home

A G UIDE FOR C AREGIVERS , L OVED O NES, AND P EOPLE WITH AIDS

Judith Greif, M.S., R.N.C., F.N.P.
Beth Ann Golden, M.S.N., R.N.C., A.N.P.

John Wiley Sons, Inc.
New York Chichester Brisbane Toronto Singapore
Illustrations on pages 56 , 78 , 114 , 115 , 165 , 290 , 291 , and 292 by Brian Pendley.
This book is printed on acid-free paper.
Copyright 1994 by Judith Greif and Beth Ann Golden.
Published by John Wiley Sons, Inc.
All rights reserved. Published simultaneously in Canada.
Reproduction or translation of any part of this work beyond that permitted by Section 107 or 108 of the 1976 United States Copyright Act without the permission of the copyright owner is unlawful. Requests for permission or further information should be addressed to the Permissions Department, John Wiley Sons, Inc.
The information, ideas, procedures, and suggestions contained in this book are not intended to replace the services of a trained health-care professional, or serve as a replacement for professional medical advice and care or as a substitute for any treatment prescribed by your physician. Matters regarding an individual s health often require medical supervision. A physician or health-care professional should be consulted regarding the use of any of the ideas, procedures, suggestions, or drug therapies in this book. Any application of the information set forth in this book is at the reader s discretion. The product listings in this book have been collected for the convenience of the reader and do not constitute a recommendation or endorsement of any product.
The authors and publisher hereby specifically disclaim any and all liability arising directly or indirectly from the use or application of any of the products, ideas, procedures, drug therapies, or suggestions contained in this book and any errors, omissions, and inaccuracies in the information contained in this book.
ISBN 0-471-58468-1
Printed in the United States of America
10 9 8 7 6 5 4 3 2
To Our Families
To my parents, Myra and David Golden, for their never ending support, patience, encouragement, and most of all for their love. I am who I am because of you.

To my brother, Jeffrey, and sister-in-law, Jodi (who is a sister in every way): You always stand by me, make me laugh, give me a push, love me, and-just like Wubby and Dabid-drive me crazy.

To Jason and Lucas, my nephews, for the sticky kisses I can never get enough of. They re worth moving to Florida for.

Thank you all. I love you.
-Beth

To the Two Most Important Men in My Life

To the memory of my father, Sy Greif, who died of cancer over a decade ago, but who taught me things and left me a legacy of wonderful memories that are with me every day of my life. You taught me what it was like to be a caregiver for the terminally ill. You taught me how to live and die with humor, with courage, and with dignity.

To my husband, Joe, who never stops encouraging me to be the best I can be every day of my life. I cannot imagine a better partner in every facet of my life. You are a world-class husband, father, professional writer and editor, and the most romantic and caring man I ve ever known.
-Judi
Special Dedication
This book would never have come to be if the need for it had not been identified and expressed by people with AIDS and their caregivers and significant others. It is our deepest wish that the information contained here will be helpful, thought-provoking, and reassuring to those who read it. All who are helped by this book owe a debt of gratitude to those who came before them for planting the seed of an idea and for persevering.

This book is dedicated to all caregivers and receivers; to those people with AIDS past, present, and future; and to their loved ones-never have we seen soldiers so brave in the face of a battle so fierce.
Acknowledgments
The authors acknowledge and thank Peter Canavan, R.N., for writing the perfect foreword and J. R. Rich and Lary Campbell, R.N., for opening up their hearts and sharing their emotions and their thoughts on caregiving. We also express our gratitude to Antonia Bongiardina, a great AIDS dietitian and friend; to Malinda (Lindi) Dunn, senior occupational therapist extraordinaire; to Joyce Anastasi, Ph.D., R.N., for providing information and encouragement and for always asking how it was going. Thanks to the entire staff of the Roosevelt Hospital AIDS unit for being the best examples of what caregivers should be. Our gratitude also goes to the staff of Rutgers Student Health Service, who were always there with words of encouragement, and especially to Khyati Gokli, M.D., Edward Lifshitz, M.D., William Newrock, M.D., and Barbara Cannon, medical technologist, for sharing their medical expertise.
The authors are grateful to Brian Pendley for doing his usual great job in preparing the illustrations for this book.
We also commend and acknowledge the staff at John Wiley Sons-most especially PJ Dempsey, Chris Jackson, and Ruth Greif-for their assistance in making this book a reality.
In conclusion, we would like to extend a very special acknowledgment to Joseph Pedreiro, for his invaluable assistance throughout this entire project in preparing the manuscript-for his expertise as a production editor, for his honest appraisals, and for just being wonderful. We are in your debt.
As the old man walked the beach at dawn, he noticed a young man ahead of him picking up starfish and flinging them into the sea. Finally catching up with the youth, he asked him why he was doing this. The answer was that the stranded starfish would die if left until the morning sun.
But the beach goes on for miles and there are millions of starfish, countered the other. How can your effort make any difference?
The young man looked at the starfish in his hand and then threw it to safety in the waves.
It makes a difference to this one, he said.
-A NONYMOUS
Foreword
By Peter Canavan, R.N.
A friend of mine, a fellow nurse who works with me on the AIDS unit, recently told her four-year-old daughter that she did not own a VCR when she was a little girl. The child was amazed. Her world was defined by Beauty and the Beast and The Little Mermaid , and she could not believe that a world without video cassettes could exist. Had she caught her mother in another one of those mother jokes ? She asked her mother, Then how did you play your tapes?
The revolution of modern technology has changed the world in which this little girl lives, and the way she views the world. The impact of technology and its ability to transform human lives have been nowhere more evident than in the AIDS community-those people whose lives have been affected by AIDS/HIV, either directly through infection, or because of their involvement and concern for people who have been infected. For myself, for a majority of gay men, and for the millions of people affected by AIDS/HIV, the world has been completely transformed. AIDS/HIV has become the central concern of our lives and the principal organizing characteristic.
Laypeople in some segments of the AIDS community have developed a knowledge base so sophisticated it includes skills and information that 15 years ago were either unknown or in the hands of only the most specialized scientists. Discussions of T-cell ratios and drug interactions sound like they are taking place in a medical classroom or laboratory. Advances in medicine and technology define the AIDS/HIV world, and it has become implausible for many individuals to consider a world without these essential innovations. It is difficult for some of us to imagine a world without the most recent antifungal medication or central venous catheters. Confronted with the possibility of a world without central venous catheters, the sophisticated child, born in the post-AIDS generation, could challenge her mother, then how did you infuse your T.P.N.? (T.P.N. stands for total parenteral nutrition, a nutritional supplement administered intravenously through a central venous access device.)
The last time I sat down to write about the gay community was in 1975. I was working as an assistant to the regional sociologist of the National Park Service. The federal government had made a commitment to urban recreation, and I was hired to study patterns of nude bathing at the newly acquired Jacob Riis Park in New York City. The community that I documented at that time, less than 20 years ago, was marked by levity and festivity. It had a truly gay atmosphere. It was a community organized around patterns of recreation and conspicuous consumption. The party atmosphere was pervasive. A stratification system emerged based on where people went to party, with whom, with what, and what they were wearing. The settings in which gay people expressed themselves were typically leisure settings, segregated from the larger society, and outside the constraints of traditional business and family values. Excluded from participation in the dominant institutions of our society, gay people created their own community outside the mainstream, where they could associate voluntarily and define their own cultural standards. This resulted in a recreational community that extolled the private pursuit of pleasure, was loosely bound, usually apolitical, light-hearted-often lightweight. It frequently avoided serious issues, emphasizing style over substance, beauty over character-sometimes appearing frivolous or flamboyant.
The community I described less than 20 years ago has completely disappeared. The reality for those individuals from that era who were fortunate enough to have survived is totally transformed. The almost paralyzing fear of aging among gay men has been replaced by the almost paralyzing fear of not aging. The center of the gay community has shifted from the bars and the beaches, and other leis