Making Myself at Home in a Nursing Home

Sandra J. Gaffney

Description

Sandra Gaffney entered her first nursing home for long-term care at the unusually young age of fifty. Fourteen years earlier she had been diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease. Over the next sixteen years, Gaffney lived in nursing homes in Florida, Virginia, and Minnesota, as the ways she could be close to family changed.


She describes her situation in these words: "As a nursing home resident, I require total or maximum care. I have limited use of my hands and arms. With special splints, I am able to turn the pages of my books, use the telephone and TV/VCR/FM radio remote control. When my cup is positioned properly, I can drink independently. I am able to walk with a platform walker and the help of two nursing assistants. My walking is not functional; it is only for exercise. After I moved into my third nursing home, I learned to operate a power wheelchair by using an adaptive switch between my knees. ... All other areas of physical care have to be done for me. My speech is impaired. If people listen carefully, they can understand what I am saying. ... I am able to eat regular food and breathe on my own."


Gaffney became an acute observer and strategist about how to live in a nursing home. Her first-person account, dictated to family members and assistants, covers making the decision to enter a nursing home, choosing the right one, and understanding its culture. She talks about how to furnish your room and about all the issues that arise in a resident's typical day. She has much to say about communication with staff and family about "how to help others help me." Gaffney's daughters, Amy and Bridget, and her friend Ellen Potter provide additional perspectives on the caregiving experience.

Sujets

• Caregiving
• Medical
• Médecine
• CAB Direct (database)
• Sociology
• Health

Informations

• Publié par: Vanderbilt University Press
• Date de parution: 15 octobre 2012
• Nombre de lectures: 0
• EAN13: 9780826518668
• Langue: English
• Poids de l'ouvrage: 2 Mo

Extrait

Making Myself at Home in a Nursing Home
Making Myself at Home in a Nursing Home
Sandra J. Gaffney
VANDERBILT UNIVERSITY PRESS
Nashville
2012 by Amy Brachio and Bridget Burns
Published by Vanderbilt University Press
Nashville, Tennessee 37235
All rights reserved
First printing 2012
This book is printed on acid-free paper.
Manufactured in the United States of America
Library of Congress Cataloging-in-Publication Data on file
LC control number 2012003430
LC classification RA997.G34 2012
Dewey class number 362.16
ISBN 978-0-8265-1864-4 (hardcover)
ISBN 978-0-8265-1865-1 (paperback)
ISBN 978-0-8265-1866-8 (e-book)
This book is dedicated to all who have helped not only to make my life livable, but also rich, meaningful, and full of warmth.
In memory of my loving and devoted mother,
Marion C. Serkin.
Contents
Foreword by Ellen Potter
Acknowledgments
About Our Mother by Amy Brachio and Bridget Burns
1. About Myself
2. Needing Help
3. Sixteen Years, Three Nursing Homes
4. Choosing a Nursing Home
5. Moving In
6. My Room, My Home
7. Life in a Nursing Home
8. Understanding Rules and Culture in a Nursing Home
9. Staying in Control
10. Making Yourself at Home
Index
Foreword
Ellen Potter
As Sandra explains, she and I have been friends since second grade and I helped her write this book. As children, we spent a lot of time together, most often at her house. Her parents were warm, welcoming, and supportive. Sandra was always a strong person, and as a child her mother often fondly admonished me to not let her always win our Monopoly games and boss me around. As she matured, Sandra tempered her childhood bossiness, and the determination and strength of personality that remained enabled her to deal with a very difficult illness.
As a university professor in adult development I reviewed much literature on nursing homes. Sandra s book is a unique contribution to the body of work designed to be helpful to residents and their families. It is unique because Sandra and her situation were unique. She resided in nursing homes for a long time, and came to know firsthand the experience of being in five different homes, three of them for more than a few months. Sandra s situation was also unique in her unusually young age of entrance (fifty) into nursing home living. She became ill while still a relatively young woman who enjoyed filling numerous social roles. The book therefore illustrates the difficulties a younger adult or anyone with physical rather than cognitive impairments would face in a nursing home. Sandra s education as a college counselor and her professional experience in this field provided her with psychological and sociological concepts with which to understand and describe life in a nursing home. The wisdom and skill that came from her counseling career gave her experience with how to help people improve their lives. Sandra was thus uniquely able to advise residents and families about what they can expect in a nursing home and how they can best cope with or resolve issues that arise.
A few residents of nursing homes have written books that describe their lives. The memoirs I have found describe mostly the negative aspects of nursing home life and are more likely to depress than to assist residents and their families. Sandra wrote this book in order to give information that would be useful to others, and was able to illustrate her points with personal anecdotes about her experiences. People write for many reasons. Sandra wrote, in part, in order to maintain her identity and skill as an intelligent and insightful professional. She was somewhat like an anthropologist who used participant observation to describe the experience of nursing home living. Staff and residents have very different lenses through which they see the nursing home experience. As an able observer and based on her professional experience, Sandra was able to convey the resident viewpoint while appreciating the concerns of staff and administration. Because of Sandra s unique situation as a lucid and informed observer, she was able to provide information that might otherwise be unavailable. For example, she tells prospective residents and their families what to expect on their first day, and describes strategies she used to cope with practical and emotional challenges.
Sandra s decision to enter a nursing home allowed her to meet her needs by depending on others who supported themselves by providing her care; this economic exchange made the dependence necessitated by her illness much easier to take. Disability and the need of the institution to provide dependable staffing and care limited her autonomy somewhat, but her life was still fulfilling and enjoyable. Some ponder what to call people who live in nursing homes-patients or residents or clients. Sandra saw herself as a resident-someone who resided in a nursing home as others of us reside in apartments or single-family homes. She showed that a new normal life is possible.
We often stereotype people based on their appearance. Sandra s appearance was that of a woman who was severely disabled. She had gray hair, used a motorized wheelchair, and had speech that was somewhat difficult to understand. There was a tremendous disparity between Sandra s physical near helplessness and her inner power and strength of personality. In this book, we can see that she was still an intelligent, curious, and determined individual. Despite her physical disability, she maintained her optimism and sense of humor. Sandra s book is informative and reassuring, and presents her can-do attitude along with her acceptance of her situation. As she often told me when I would grumble about some limitation of the nursing home situation, she accepted the nursing home as required by her disability. She reminded me to separate limitations caused by her illness from limitations due to the nursing home.
Because Sandra could not use her hands to write, she dictated this book to her assistants, who wrote and typed it for her. As a list-dependent person, I was amazed that Sandra was able to keep an outline in her head and to remember, without notes, what she wanted to say. Many would find the prospect of limitations that would require them to live in a nursing home to be a terrifying end to life as they have lived it. Sandra showed that her normal life continued, as can the lives of others who live in nursing homes.
Acknowledgments
My friend Ellen Potter has had a major role in getting this book written. We are lifelong friends, having met at age seven on the first day of second grade. Ellen is a professor of educational psychology at the University of South Carolina. As part of her teaching assignment, she teaches some classes dealing with the process of aging. She encouraged me to tell my story. She also helped me generate the topics I covered. She has added personal observations from our lifelong relationship.
The first draft of this book was dictated to my late mother, Marion Serkin, and my personal assistants, Grace Walters and Kari Moe-Hoffman. My daughters, Amy and Bridget; my son-in-law Ben; and Kari Moe-Hoffman began the typing. I am grateful to Bridget for bringing me together with Kari. Kari did much more than type. She helped me with clarity of expression and prompted me to give more examples. Amy gave Kari and me valuable instructions on improving transitions and paragraphs. The preliminary search of the literature was done by one of my librarian friends, Jeanine Gatzke. Bryan Hoffman supplied ongoing technical assistance and facilitated equipment needs. I am grateful to my friend LaVerle McAdams for her ongoing encouragement and for bringing me in contact with Margaret Cruikshank, a published author, who reviewed the book and offered valuable suggestions for preparing it for publication. Thanks to David Potter for sharing his editing skills. When Kari and Bryan Hoffman moved to Utah, Lourdes McGovern, a volunteer from the ALS Association who had been assisting me in other ways, graciously took over Kari s role. Shortly before Kari left, we switched from handwriting my dictation to using a computer. Lourdes has also done much more than just typing my words. When it looked like publishing might be a reality, I received additional help from Lourdes s daughter, Tara McGovern, and my friend LaVerle McAdams. They helped me to add new content. I could never have come this far without the encouraging and detailed comments from Michael Ames, the director of Vanderbilt University Press.
About Our Mother
Amy Brachio and Bridget Burns
Sandra Gaffney, our mother, demonstrates in this book that it is possible to maintain a meaningful life while residing in a nursing home. She wrote this book over the course of sixteen years and three nursing homes. Although she passed away before knowing that it would definitely be published, she knew that the possibility was close enough to being a reality to finish incorporating her last comments a mere two days before she died. We, her daughters Amy and Bridget, along with her dear friend Ellen, were committed to working with the publisher to complete this book. This book will help individuals facing life in a nursing home, their families, nursing home staff, and policy makers to better understand the needs of nursing home residents and to devise strategies for residents to maintain as full a life as possible.
Our mother was born in 1944 and spent the majority of her youth in Coral Gables, Florida. At eighteen, she moved to Minneapolis, Minnesota, to attend the University of Minnesota. Armed with degrees in college counseling, she first took a job at a small liberal arts college in rural Minneso