Caregiver Revolution: 5 Easy Steps to Enlightened Caregiving

By Grant Abrams and Patricia Elizabeth

Packed with detailed information and practices for infusing caregiving with spirituality and hope, this book provides simple tools for the practice of mindfulness amidst the stress of the caregiving environment. Straightforward and practical methods are provided for dealing with crisis situations and a section is included on how a caregiver can assist someone who is facing his or her death. With a light and accessible tone, the book’s practical information is supported by real-life anecdotes and humorous illustrations.

• Language: English
• Publisher: Gateways Books Tapes
• Release date: May 1, 2011
• ISBN: 9780895565365

Book preview

Caregiver Revolution: 5 Easy Steps to Enlightened Caregiving

by Patrica Elizabeth and Grant Abrams

Cover art by Lil McGill & Lin Larsen

Cover design by Marvette Kort

Typesetting and layout by Claude Needham

Graphic Digitization by Tammis Vaatveit

ISBN: 978-0-89556-148-0

Text Copyright © 2011 by Grant Abrams and Patricia Elizabeth

Drawings © 2011 by Lin Larsen

Ensemble © 2011 by IDHHB, Inc.

All Rights Reserved.

Printed in the USA.

Published May, 2011 by:

Gateways Books & Tapes

IDHHB, Inc., PO Box 370, Nevada City, CA 95959

Phone: [phone] or [phone]

Fax: [phone]

Article Morning Caregiving Rituals Can Save Your Day on pages 76–77 by Carol O’Dell used by permission of the author.

No part of this publication may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopy, recording, or any information storage and retrieval system now known or to be invented, without permission in writing from the publisher, except by a reviewer who wishes to quote brief passages in connection with a review written for inclusion in a magazine, newspaper, online blog, web publication, or broadcast.

Library of Congress Cataloging-in-Publication Data

  Abrams, Grant, 1955-

     Caregiver revolution : 5 easy steps to enlightened caregiving / Grant Abrams & Patricia Elizabeth ; drawings by Lin Larsen.

                 p. cm.

      Includes bibliographical references.

      ISBN 978-0-89556-148-0 (alk. paper)

      1. Caregivers. 2. Care of the sick. I. Elizabeth, Patricia, 1949- II. Title.

      RA645.3.A27 2011

      362’.0425--dc22

2011004852

Dedication

From Grant Abrams:

I’d like to dedicate this book to my mother, Emily Abrams, who taught me about gracious living and graceful passing.

I’d also like to acknowledge the patience of my wife Judy Gonzalez, her support and valuable feedback.

In addition, I want to thank Iven Lourie, Susan Plucknett, Marc Saldana, Star Ananda, Deborah Judith, Laura Mulvihill, Tamara Murray, Se Duggan, Inhocvince, Paul Barry, David Franco, Jim Donald, General Xxaxx & General Nunan and many others who have helped to keep this project moving through the years.

From Patricia Elizabeth:

My dedication is to my mother, Juanita Tipton Judson, who has patiently reminded me all these years of what is really important: To be true to oneself and all that one is to the universe and all beings everywhere.

Also I am especially grateful for my best buddy and wonderful friend, Richard Hart. And, I would never have entered such a wonderful journey without my special friend and spiritual teacher, Rev. E. J. Gold.

Table of Contents

Prologue

Foreword – Why Did It Take 20 Years?

How To Use This Book

Introduction – Help Yourself By Helping Others

Denial’s Not A River

The Preliminaries

The 5 Easy Steps To Better Caregiving

On Being A Caregiver

Step 1 – Get Organized And Take Care Of The Basics

You’re Not Alone

Learn From The Pros

It’s All In The Details

How Things Have Changed

Beginning Steps

Break Tasks Into Manageable Steps

Inch By Inch

A Few Practical Suggestions

Get Help

Importance Of Community

The Caregiver Circle

The Internet Community

Ohhhh, The Paperwork

Get Organized…That Is The Key

Self-Efficacy

Change Your Approach

End of Life Caregiving

Lemons To Lemonade

Jim’s Story

Step 2 – Manage Your Stress

Caregiving Causes Stress

Stress Is A Natural Survival Mechanism

Caregiving, Stress and Hard Work

Physical Signs Of Caregiver Stress

Emotional Signs Of Caregiver Stress

You Have To Take Care Of Yourself

A Caregiver’s Bill of Rights by Jo Horne

Avoiding Caregiver Stress

Walking And Pedaling

Some General Guidelines When You Exercise

Exercise Ideas

An Easy And VERY Effective 15-Minute Exercise Program

T’ai Chi

Simple Stress Relief Massage

The Relaxation Response

A Simple Visualization Technique

Meditation

Mindfulness Is Meditation In Motion

You Have To Make The Time

The Caregiver Revolution Tool Kit:

Step 3 – Strengthen Your Caregiver Presence

How To Use These Practices

The Attention Gym

Attention Has A Friend

Of Spirit, Breath and Being

Your Secret Weapon

Forty Activities To Bring Presence Into Caregiving

Getting Stronger As You Go?

Step 4 – Help Those In Transition

Crises Happen

The Places Of Change

Entering The Transitional Space

The Crisis Bridge Workshop

Dying As Transition

Stages In The Dying Transition

Spiritual Care

Step 5 – Provide Spiritual Care & Support

Present And Accounted For

Simple Presence

How To Be There

Your Intention Is What Matters

Spiritual Reading

Ars Moriendi

Tibetan Buddhist Teachings

Facing Death

Ten Steps To Doing A Reading

Exercises And Activities To Help Prepare For Death

A Modest Proposal

The Last Will

The Testament (A Last Word)

Exercises For Death Preparation – The Workshop

How To Approach This Material

Exercise 1: Telling Another About Your Preparations For Dying

Exercise 2: Those Things I Wish For Right Now

Exercise 3: Knowing My Roots

Exercise 4: Forgiveness

Exercise 5: Imagining The Moment Of Death

Exercise 6: You Decide What Is A Good Death

Planning The End Of Life Celebration

Appendix A: Bibliography

Appendix B: Websites For Caregivers

Appendix C: Supplementary Exercises

Simple And Effective Yoga-based Stretches By Mary Pierangelli

1. Cats And Dogs (Intention: Surrender, Relaxation)

1a. Cats And Dogs Seated In Chair (Intention: Surrender, Relaxation)

2. Stretch From Side To Side

2a. Side Stretch Seated In Chair

3. Forward Lunge (Intention – To Open The Heart Center)

3a. Forward Lunge In Chair

4. Seated Sequence

4a. Seated Sequence In Chair

More About Relaxation

A Full Relaxation Or Draining Exercise

Facial Relaxation

Diffusion Of Vision

Contact Exercise Or Creating The Reading Space

Appendix D: Spiritual Assessment Tools

FICA

SPIRIT Assessment

Taking A Spiritual History

S — spiritual belief system

P — personal spirituality

I — integration with a spiritual community

R — ritualized practices and restrictions

I — implications for medical care

T — terminal events planning

Appendix E: Religious Practices and End of Life Rituals

Catholic:

Orthodox Christian:

Protestant:

Church of the Latter-Day Saints (Mormon):

Jehovah’s Witnesses:

Judaism:

Islam:

Hinduism:

Buddhism:

Native American:

The Clear Light Prayer

Appendix F: Questions About Doing Readings

Appendix G: The Stages of Dying

A Tibetan View

Symptoms Of Transition

Signs of Passing – How Imminent Is Death?

Appendix H: Anecdotes and Personal Accounts Of Reading Experiences

Why Am I Here? by Sean Basham

Elegy for My Uncle by Iven Lourie

CONTACT (With Non-Phenomenal Voyagers)

Transition of My Mother by Deborah Judith

Se’s Experience with his father by Se Duggan

Mortuary Experiences by Star Ananda

Prologue

I want to assure you that it is a blessing to sit at the bedside of a dying patient. Dying doesn’t have to be a sad and horrible matter. Instead, you can experience many wonderful and loving things. What you learn from dying patients you can pass on to your children and to your neighbors and maybe our world would become a paradise again. I believe now is the time to start. (Kubler-Ross, Life 20)

Okay. Brilliant me. I thought that I had come up with this idea, the concept of the caregiver revolution, just a few years ago…and there it is, many years before, spelled out as plain as day!

This book actually has its roots in the Art of Dying Conferences which were held in New York City back in the mid-1990s. Listening to speakers like Ram Dass, Steven Levine, Joan Halifax and Robert Thurman, my views on death and dying were completely transformed and I saw great hope in the hospice movement. I felt optimistic, certain that we could rid our Western culture of its terrible fear of death. The enlightened Tibetan teachings were finally having an impact. E.J. Gold had written the American Book of the Dead which framed these ancient teachings into a western context, and now we were ready to put them to work, out in the field, really helping people to find more conscious death experiences.

I continue to strive for this goal. Learning how to do a reading and be present for those who are dying (see Step 5) are vital parts of this book. The relation between reader and voyager (the one who is passing), is the very same as that of caregiver and loved one, and establishing an essential relationship requires that we get rid of stress, learn to focus, and become mindful in our daily activities. Then we can be of real help. We may find ourselves struggling with the day-to-day details, so this book gives the tools to transform that struggle into a labor of love with real, practical outcomes.

My co-author, Patricia Elizabeth, has been an inspiration and mentor throughout the years. Patricia has been doing death and dying work for a long time and knew Elisabeth Kubler-Ross well. In some mysterious fashion they both laid the ground work for this book, each in her own way, with constant, and I mean really constant, efforts…traveling the globe, giving workshops and helping people everywhere.

It is my hope that I have developed the concepts of conscious death and dying and compassionate caregiving in a way that Elisabeth Kubler-Ross would have wanted. I also hope that these pages do justice to the untiring efforts of Patricia Elizabeth.

Above all, I hope that this little book will benefit all beings, including millions of hard working clinicians and caregivers all over the world.

Grant Abrams

Foreword – Why Did It Take 20 Years?

I joined the early consciousness-raising groups in the ‘60s and found out something about natural childbirth. Then I taught some of those techniques and followed that up with learning the corresponding techniques for preparation for dying. This took some doing because there wasn’t as much available then. Later, we had the good sense to listen to Dr. Elisabeth Kubler-Ross, E.J. Gold, the Venerable Dr. Thich Thien-An and Tarthang Tulku Rinpoche. At that time there was a great concern among the living for the living. Ram Dass’ Be Here Now, as if you could be like someplace else. And, fly high – well, if you wanted to hit the stratospheres you had to fly high. Look where the elders of our planet have us sitting today. Long lives, long lines, and maybe not so much long vision or wisdom. I digress.

It was after I read E.J. Gold’s American Book of the Dead (ABD), that I decided for myself to follow some of the practices outlined in it and do a little advanced work. That was in 1973. I have been an ardent supporter of Gateways Books and Tapes, previously known as IDHHB Books and prior to that as Abandonment Press. Looking back at it now, noticing the synchronization of events – the first public version of the ABD, by And/Or Press, came out at the time of my wedding, November 1974, and I had been one of the proofreaders for that edition. Later, in 1987, the Gateways edition was proofread by my mother, Juanita Judson, and she has been encouraging me in this project ever since.

In the spring of 1988, a member of our congregation offered her chronicling of her dying experience as a service to the community. This meant she would allow her thoughts, feelings, experiences to be of use for those training to become caregivers or lay ministers in terminal midwifery. It was her wish to share as much as possible of her journey for the benefit of others. We tentatively called that book, Claire’s Voyage – a Personal Story of Death in Community. Material in this book draws from and represents a continuation of that manuscript.

In 1990, a number of parents of members of the congregation were slowly dying, or died quickly. In each case their caregivers tried to take the bits and pieces of training that they had received, apply it and bring back the results for all of us to share. It worked. We had a great repertoire of caring, diligent, attentive folks who knew how to handle themselves and knew what would be useful for the terminal patient.

In 1999, I was ordained as Doctor of Divinity with an emphasis in Terminal Midwifery and Death Counseling. This ordination culminated in the return to field teaching – hospice workers, home healthcare networks, grief groups – both in the U.S. and internationally. We started offering this material in workshop form, over Internet classrooms, and as one-day seminars. Every place we took it folks allowed us the courtesy of creatively adding or subtracting what might be of value to their unique situation.

Gradually we came to see this material had an organized coherence and could be applied in the caregiving and the carereceiving arenas. We hope you will find this to be the case, and that you will carry on. There is much development and expansion of preparation for dying to be done. We need to return to our deaths as a natural and normal family tradition in our time and for the future.

I know that there is no way this book could have ever come about without all the diligence and observant reminders and considerate joyous poking. I have everyone and everything to thank. Finally – experiencing my cancer in 2006 as a spiritual teacher was a gift that gave me the extra benefit of contemplation, time and serenity. I learned to only do one thing at a time – deliberately and gracefully, if possible. I wish to express how lovely it all has been to be part of this fabulous journey – the creation of a book. I am just glad to have been along for the ride.

Patricia Elizabeth

How To Use This Book

This little book is about personal growth, wisdom and sharing. It’s based on the premise that you can grow and gain wisdom by helping others at the end of their lives. Then you can share this wisdom with those who are fortunate enough to be with you at the end of your life. This may be friends, family, children, grandchildren or caregivers. They will all benefit from your knowledge. You will be the one who is in balance. This will be an important and fulfilling time for all of you.

Though written for all levels of caregivers, this book is well-suited for those who want to take their caregiving work to the next level. The first three chapters present information and exercises that will be helpful to everyone. The last chapters continue with advanced techniques which reveal caregiving in a new light, as a tool which in itself can help caregivers deepen their own spiritual practices.

Program directors, supervisors and workshop presenters should feel free to use this material in their clinical in-services. It is practical and conducive to group presentation. Please contact us with any questions. We are happy to share this material. We hope for a great deal…not the least of which is to revolutionize caregiving in the hearts and minds of the dedicated care providers who are doing this valuable work on a daily basis.

Grant Abrams and Patricia Elizabeth

Introduction – Help Yourself By Helping Others

We already know that for you, the caregiver, it’s never about me. Caregivers are selfless…often too selfless. Believe it or not you can take care of yourself while caring for others. You can even use caregiving as a practice in which to include work with larger issues surrounding life and death. Your efforts to become a better caregiver today can help you and those around you tomorrow. By helping your loved one, you are indeed preparing for a better end of life. This is the essence of the caregiver revolution.

Caregiving is a precious opportunity to help others, but perhaps you never stop to consider how much it is helping you! By doing this work, you are naturally creating a more positive environment for the end of your own life. You’ll be able to handle your death more gracefully, knowledgeably and peacefully. Those around you at that time will benefit from this and will, in turn, pass it on. By making efforts to become a more mindful caregiver today, you are initiating a cycle of benefit that will help future generations.

Denial’s Not A River

We live in a time of cultural denial of aging and end of life issues. That’s why the Caregiver Revolution is so valuable. It goes right to the heart of the issue. To start, you don’t need to change what you’re doing, you only need to change your attitude. Acceptance of your caregiving role is the key to this book.

Caregiving is usually relegated to being a secondary activity, a burden, and the end of life is seen as a depressing, difficult time. We have found the opposite. Caregiving can be a positive, life-changing experience. The end of life can be a time of spiritual growth and, believe it or not, opportunity.

The Preliminaries

You can benefit from caregiving if you’re able to:

accept the reality of your present caregiving situation

realize the importance of the