A Better Life for the Chronically Ill: A Guidebook for Creative Caregiving

By Rose Mary Keller Hughes

While learning about ways to bring some fun into the lives of those who are long-term confined to home or hospital, the reader discovers that the book is really about hope, dignity, and love. The underlying theme throughout is that while providing support for your loved one whose health is inescapably diminishing, you must not lose sight of the fact that the patient desperately needs to feel loved, to be considered a whole individual who happens to be sick, and to maintain a sense of still being in control. Methods are discussed for steps that need to be taken as the end of life nears for some. Maintenance of the caregivers health is discussed as well as methods to avoid burnout. The Appendix contains a long list of potential websites for both the caregiver and receiver. Its not a long bookalong the way you will find its a story of the relationship of a sick young woman with those who loved her and wanted to make her shortened life one that was full, filled with love, hope, and meaning. It wont take you long to read the book, but you will feel enriched at its conclusion.

• Language: English
• Publisher: iUniverse
• Release date: May 6, 2001
• ISBN: 9781469793924

Rose Mary Keller Hughes

Rose Mary Keller Hughes has worn many hats—wife, mother, high school teacher, adjunct at a college for the deaf, office manager at a shelter for women and children in crisis, grandmother, and caregiver. She and her husband live in the Rochester, New York area.

Book preview

A Better Life for the Chronically III

A Guidebook for Creative Caregiving

Rose Mary Keller Hughes

Writers Club Press

San Jose New York Lincoln Shanghai

A Better Life for the Chronically 1ll A Guidebook for Creative Caregiving

All Rights Reserved © 2001 by Rose Mary Keller Hughes

No part of this book may be reproduced or transmitted in any form or by any means, graphic, electronic, or mechanical, including photocopying, recording, taping, or by any information storage retrieval system, without the permission in writing from the publisher.

Writers Club Press an imprint of iUniverse.com, Inc.

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ISBN: 0-595-17979-7

ISBN: 978-1-4697-9392-4 (ebook)

Contents

Acknowledgements and Heartfelt Thanks

Introduction

Particular Needs of Those in Long-Term Confinement

Activities with the Patient

The Patient’s Environment

Soliciting the Help of Others

Unique Events

Gifts You Can Give or Suggest That Others Bring

Taking Care of Yourself

Things That Must Be Done

What To Do When It’s Over

About the Author

Appendix

In Memory of Jeanne

She inspired us in so many ways…

Acknowledgements and Heartfelt Thanks

It is so difficult to find the correct venue to express thanks to everyone who has been at my side during our caregiving and while writing this guide. Let me begin with those who traveled the road with my husband and me while we were giving care to our daughter…

Bob and Jim for being there for your sister—you gave her comfort, you gave her hope, and you gave her laughter when she needed it the most. Penny and Amy for becoming sisters-of-the-heart rather than sisters-in-law—you became the sisters she never had. Grace Hargrave and Sue Bonadonna for faithfully coming every Thursday night with theme visits—Jeanne really loved you two. Ock Hee Hale for patiently sitting and sharing your strength with your soul sister. Ginny Fairchild, even though you’re gone, I want others to know that you and Janet Mangione give the support only the two of you could give; Jeanne felt that you were the only two people who understood her lack of health and all that it meant to one’s life. The Kimmichs, Boyles, and Kaerchers for bringing life and love to Jeanne’s room with your drawings, tree ornaments, loving messages, and kids’ tape recordings. Joanne and Bill Watson, Bob and Carol Smith, and Jean Anne Drum for faithfully continuing to send cards, funny messages, and sometimes corny jokes.

Carol Reynolds for writing a column about Jeanne and the caring citizens of Wayland who responded to the article. Tim Weider for providing a computer and spiritual comfort. All the wonderful celebrities who, in their very busy lives, found the time to send gifts, photographs, and messages of esteem, encouragement, and even love. Don Beebe, his wife and their little girl for making an incredible day possible for Jeanne. Jean Kern for soliciting autographs from Buffalo sport stars. All our friends who repeatedly visited Jeanne throughout her illness—Ron and Barb Kimmich, Jean and Phil Kern, Audrey and Ray Horan, Gap and Janet Mangione, Bob and Carol Smith, Sue and Bud St. George, Wayne Bulling, Tim and Colleen Fressie, Tom and Joan Hughes, and the list goes on…your loving presence and loyalty to Jeanne made her feel she had somehow made a positive impression. Never giving up on someone who is ill; never saying I’d rather not see him or her that way; never forgetting the person—that is a gift that cannot be measured. Joe and Michele Cordaro for coming to the hospital to prettify Jeanne. Nurses and Respiratory Staff at Genesee Hospital’s Carlson 5 for going above and beyond duty in lovingly caring for Jeanne—I know you aren’t supposed to emotionally get involved with patients, but you did and you couldn’t have been more dedicated and caring. Tricia Banks for always remembering to keep in touch with Jeanne even when you were off on business trips. Dr. Bernie Sussman—for being Jeanne’s mentor, hero, friend, and her doctor. Our friends who filled in for us when we needed a break or friends who came long distances to take us out to dinner and give us respite from our duties and pain. Friends and family for giving up smoking or for continuing the attempt to quit smoking in Jeanne’s memory. Our many friends for quietly listening when we talked about Jeanne and her illness—you were there and we are thankful.

Thank you, too, to all who gave us comfort when it was over. Some of you came and sat with us, others sent messages of sympathy and loving reminiscences of Jeanne, and others encouraged us to re-enter life as non-caregivers. Two couples, Dick and Myna Pearl and Del and Theresa Primmer, having lost a child themselves, shared their methods of coping and we are indeed grateful for their loving concern.

In the writing of this handbook, I am most grateful to dear Bob Hughes, my lifetime helpmate, who was with me through the sad and happy times. He had faith in me that I would complete the task and has always been at my side giving guidance, assistance, and loving comfort.

Thank you to all of you who were at our side through the years of Jeanne’s incapacity. The gift of friendship is one without measure and we can never truly give adequate thanks for all you have done for us.

And finally. the most important thanks of all goes to you, dear Jeanne, for having been in our lives, for inspiring us to creatively care for you, for being strong when the odds were insurmountable, for showing us how to live, and then how to die. You will always be remembered.and hopefully this book will give others like you a full life despite their confinement.

Introduction

Making a Confined Sick Person’s Life More Tolerable

The life of a person who is debilitated by a consuming disease is one that becomes more and more constrained; the illness causes the person to lose the feeling of independence as well as access to the world outside the sick room. My husband and I had a wonderful daughter who succumbed to chronic lung disease at the age of 33. She was an amazing young woman who was pained by what she thought was the burden of caregiving—to the contrary, she made life easier for us with her courage and lack of self pity. She inspired us to think of ways to make her life more interesting and tolerable—she was a creative individual and we felt it was her due to have a life, despite her illness. Since there were no self-help guides, we were pressed to create ways to bring her mentally to the outside world and to provide topics for conversation with others. Those who are ill don’t stop desiring a life that is full—it is not the private domain of those who are well. Our daughter is no longer with us but there are other parents, spouses, siblings, and friends who are trying to comfort and make a life for their loved ones who are chronically ill and long-term confined either at home or in a hospital. It is my hope that, through this book, you will find ways to make life more interesting and fulfilling for a person who needs life in the process of dying.

• Our experience was with a 33-year-old woman who was on a respirator and confined to a hospital setting, but I feel the activities and suggestions can be applied, with modification, to any age group, illness, confined setting, or gender. This guide will address those issues which you might face and possible solutions or actions.

• What are the special needs of anyone confined to long-term care either at home or in a hospital?

• What kinds of activities can we organize or generate for those who are either in an at-home confinement situation or are facing a long-term hospital stay?

• What can the caregiver do to maintain his or her own health? The daily stress of tending to a loved one in crisis can be both emotionally and physically draining.

• What must we do to prepare for the end. These are sad but necessary steps that must be taken despite the attendant discomfort and pain.

• What happens when it’s over? Can there possibly be activities to lighten the grief and assuage the pain?

What are the resources available via the Internet? We all know of the impact on our daily lives of the computer and its use. Throughout the text I either make reference to or footnote relevant Internet sites. In addition, I have given you an extensive list in the Appendix of potential sites either you and/or your confinee can visit. The sites suggested run the gamut from research to fun sites. What is even better—many of the sites suggested will link you to even more areas of further study or use. The information and resources available are endless. Be sure to look at them,

they can be of tremendous help and interest to both the giver and receiver of care.

I wish you well on your journey with your confined loved one. May this guide help you make life easier for both of you.

Chapter 1

Particular Needs of Those in Long-Term Confinement

Physicl Contact

Image332.JPG

Jeanne & Her Mom in Bed with Bif

All humans have a need to be touched. We feel that the toucher or stro-ker is giving witness to affection or love. Those who are ill have an even greater need, I believe, to have physical contact with others to reassure them that others don’t find them unlovable or repulsive because of their illness. They are touched a dozen times over by those who are tending to their needs (nurses, aides, etc.) but that touching is not intimate in the sense that it is given voluntarily—rather, it is job related. Hugging, kissing, massaging, and touching (holding hands, stroking face, etc.) gives the recipient comfort, increases self esteem, and sends the message that the one being stroked is loved. Sometimes crawling into bed with your loved sick person and just holding him or her close is all that is needed to give small respite from the debilitating illness.

Our daughter believed in pressure point massage and we would rub her feet in the areas that are designated for the lungs—whether or not this helped her lungs is of little consequence. What is more important is that she got pleasure from the massage and it also calmed her down when she was in a stressed state. She knew we loved her and wanted to touch her in any way we could.

Someone/Something to Love

It is not unusual to see those who are ill and feeling alone, regardless of age, holding stuffed animals while sleeping. There seems to be a need to have something on which to hold; something to love and hug. Our daughter had two favorites (a stuffed dog and a stuffed bear) that she had next to her in bed. Each night she fell asleep holding one of them in her arms. She would wave goodby with the animals’ arms and sometimes used them as agents to express her mood. Staff in her doctor’s office gave her an oversized monkey as a gift and he sat in her visitor’s chair—visiting when no living being was there. It’s been scientifically proven that pets help those who are ill—in a hospital, however, a live animal is not an option. It is my suggestion that you find a stuffed pet that has character, tactile fur that can be stroked, and a huggable body.

Break in Monotony

Everyday in a hospital is the same and the same kind of tedium can happen