TLC for MS Caregivers

By Lue Christian

Every twenty minutes, someone, somewhere in the world, is diagnosed with multiple sclerosis. Little is known about this devastating disease and how it affects the family and friends surrounding the stricken one. Finally we have a book directed to and addressing the concerns of these silent sufferers. They are entitled to the gamut of emotions because they are also afflicted.

Each new MS attack brings forth Elisabeth Kubler-Ross’s five stages of grieving defined in Death and Dying. These stages are denial and isolation, anger, bargaining, depression and acceptance. The chapters in this book will deal with these emotions, as well as others encountered when coping with MS. The readers will be shown how people meet the various stages and successfully work through them.

Family and friends tend to become complacent when the MS remissions continue for months, even years. The roller coaster disease may strike again with no warning and devastate everyone involved. MS is described, and shows how each person afflicted has similar yet a unique set of symptoms. It depends on where in the central nervous system the MS strikes, and which of the four identified types of the disease is involved.

Both authors have a particular interest in this endeavor. One has a daughter with MS, and the other has had the disease for over 30 years. In the process of dealing with our own personal grief and acceptance, we’ve realized how much is lacking in terms of current information.

Within these pages, the reader will meet people just like themselves: husbands and wives, children and parents, brothers and sisters and friends of people with MS who speak frankly from their own experiences. Problems are explored, and methods described, showing how others have handled the many hurdles encountered. As experience of MS varies from person to person, so do the relationships, concerns and emotions.

TLC for MS Caregivers can help the readers get through the first uncertain and difficult days of adjustment, as well as ease the frustration through the various stages of multiple sclerosis and possible future exacerbations as time goes on. The book has been written for the sole purpose of renewing or instilling hope for a better day, a better understanding of the disease and a better method of living with the ups and downs that are typical with MS. There is insight into the feelings, coping skills and means of dealing with a loved one’s chronic disease.

Specifically, the chapters deal with: What Is MS? Diagnosis, The Initial Shock, After the Diagnosis, Helplessness, Anger, Depression and Hopelessness, Fear, Nurturing Yourself, Medical Information and Ongoing Research and Understanding and Renewal. The Medical and Research chapter is undergoing reconstruction in order to present more current information. The appendices contain a) Benefits Available for MS Patients (undergoing reconstruction), b) Glossary of Terms, c) Bibliography and d) Anthology of Essay Contributions from both Family/Caregivers and MS patients.

• Language: English
• Publisher: Lue Christian
• Release date: Sep 29, 2016
• ISBN: 9781370582785

Lue Christian

Upon retirement from the wine industry, Lue Christian took up writing, something she had yearned to pursue most of her adult life. Eventually, she garnered some state and national awards on some of her non-fiction work. At that time she decided to go into the world of fiction and studied for two years with several professionals. "Boomerang" was born. The book has a French Canadian locale because of Christian's maternal roots. It is available in print or electronically from Smashwords.com.Christian has a daughter who was diagnosed with Multiple Sclerosis in her thirties. As one of her emotional caregivers, she has dealt with helplessly watching her exacerbations. In the process of living with her own personal grief, she realized how much was lacking in terms of current information for the stricken, significant others and close friends. When persons are first diagnosed, they are in the dark as to what lies ahead and how to cope with this disease. After considerable research, Christian was eager to make available what she had learned. Consequently she wrote a book entitled "TLC for MS Caregivers". It is electronically available from Amazon.com.Around this time in her life, Lue and her husband undertook and completed an unassisted, solo journey on a tandem bicycle from their home in Central California to Quebec City in Canada. They published a book on this adventure which is available from Amazon.com.The Christians live in the agriculturally famous San Joaquin Valley of Central California with their Siamese cats, Waldo and Gilly. They can be contacted at [e-mail].

Book preview

TLC for MS CAREGIVERS

A Guide on Avoiding Burnout

by

Lue Christian

Contributions by

Doris Schwindt

Copyright ©2016 by Lue Christian

Smashwords Edition

All rights reserved. No part of this book may be used or reproduced in any manner whatsoever without written permission, except in the case of brief quotations embodied in critical articles or reviews. Please do not participate in or encourage the piracy of copyrighted materials in violation of the author’s rights. Purchase only authorized editions.

ACKNOWLEDGMENTS

We would like to express our appreciation to those who contributed their personal accounts to the writing of this book. Without them, TLC for MS Caregivers would not exist.

We give our thanks to our individual families for their support during this project which, at times, seemed endless.

Special Credit goes to Bonnie Hearne Hill who gave Schwindt invaluable help over the years with her fine editing, sound advice and encouragement, and Leslie Kalas Payne who taught Christian the essential writing fundamentals and editing skills.

And lastly, Special Thanks goes to Christian’s grandson, Mike Bowman of Top Hand Media, Fresno, Ca. for the designing of our cover. TopHandMedia.com

PREFACE

Both authors have a particular interest in this endeavor. Christian has a daughter with MS, diagnosed in 1986, and Schwindt is an MS patient who was diagnosed in 1966. Both lead comparatively normal lives. Schwindt is a certified MS counselor. (Author’s note: Schwindt left this world recently and is sorely missed.)

Christian, as one of her daughter’s emotional caregivers, has dealt with watching her exacerbations with the frustration of not being unable to help her. Yet Christian has been successful in maintaining a normal, healthy relationship and outlook for her family and her two daughters.

In the process of dealing with our own personal grief and acceptance, we've realized how much is lacking in terms of current information for the significant others, families and close friends. Upon learning of their loved ones' diagnoses, they are in the dark as to what is ahead and how to cope and help.

TABLE OF CONTENTS

INTRODUCTION

CHAPTER ONE: The Other Victims

CHAPTER TWO: Silent Sufferers - The Initial Reaction, Diagnosis

CHAPTER THREE: After the Diagnosis, a Kaleidoscope of Feelings

CHAPTER FOUR: I Don’t Know What to Do, Helplessness

CHAPTER FIVE: When You Feel Cheated, Why Anger Is OK

CHAPTER SIX: The Black Hole, When Depression and Hopelessness Strike

CHAPTER SEVEN: What is the Long-Term Prognosis? Getting Rid of Your Fear

CHAPTER EIGHT: Nurture Yourself, Better Health, Better Caring

CHAPTER NINE: The Research Goes On, Scientists Seek Cure

CHAPTER TEN: Understanding and Renewal, Your Life Goes On

CHAPTER ELEVEN: Books related to MS

APPENDICES

INTRODUCTION

By Phillip Kimble

Background: Phillip Kimble, B.S. in Social Work at West Virginia University, Bd. and M. Div. at Chicago Theological Seminary and University of Chicago. Psychology Instructor and retired Director of Friendship Center for the Blind, Psychological Aspects of Physical Disability for many years, and teacher of a class called Phillip Kimble, California State University, Fresno.

The shock of finding out that a member of your family has been diagnosed with MS (Multiple Sclerosis) may come as a welcome relief to months or years of curious and misunderstood events that have sometimes been frightening and other times unexplainable.

Their life has been going fine and one morning they wake up and are blind. Last evening they were dancing and this morning they fall and cannot walk. They had a good memory and now cannot remember your name.

You want to push the panic button but do not know the number. If I dial 911 what do I say? Where do I turn? What can I do to help? Does the doctor have a magical pill that will help? There must be someone who can tell me what is going on and how I can help this person who is so important to me.

TLC for CAREGIVERS will give you and your family answers to these questions and directions to turn for assistance. Lue Christian and Doris Schwindt have been there. Lue’s daughter called her one day and said, Mom, I have MS, what do I do? The search was on and Lue realized that there was very little helpful information. Her friend and co-author, Doris Schwindt was diagnosed with MS fifty years ago and experienced the same frustrating lack of information.

These two pioneers in the field of MS have gathered the most helpful things they have learned and presented them in a manner that will engage you in a quest to realize that you and this person for whom you are responsible need not be a victim of MS but can become a survivor living a meaningful life with MS.

To worry about what you don’t have is to waste what you do have is the message of the class in the Psychological Aspects of Physical Disabilities that I have taught for many years to thousands of university students. As these students have studied MS., interviewed people living with it and spent a day role playing that they are living with MS, they have found that the most powerful and effective way to cope with this disability is to focus on all the wonderful things you can continue to do with your life and not worry about what MS has taken away.

Doris Schwindt has spoken to almost every one of my classes and the students have been inspired by her resiliency and positive sense of humor. I may have MS, but it does not have me, is what she tells them.

I think that you will feel the same way as you read this inspired book, written by two Survivors of MS. It will help you to see your way through this new and foreign land to a land of promise on the other side.

These two wonderfully caring women share the wisdom they have gained and they will support you in becoming the kind of caregiver you want to be for your loved one.

CHAPTER ONE

An Emotional Roller Coaster

You may be angry, but that's OK. You may feel guilt, but that's normal. As the loved one of the person stricken with multiple sclerosis, it can be difficult to love, support and meet the needs of others while you try to maintain a normal life for yourself and display a cheerful attitude. You, as the family/friends, the silent sufferers, are involved along with the patient, and it is you to whom this book is directed.

You’re entitled to a gamut of emotions. Each new MS attack brings forth Elisabeth Kubler-Ross's five stages of grieving defined in Death and Dying¹. These stages are 1) Denial and Isolation, 2) Anger, 3) Bargaining, 4) Depression, and 5) Acceptance. Why does one go through these stages? Kubler-Ross says, Man has to defend himself psychologically in many ways against this increased fear of death and increased inability to foresee and protect himself against it.

The patient may be dealing with the death of the person s/he was, not necessarily the physical death, but a loss of who that person was before MS. This book will show how some patients and caregivers weathered the various stages with their individual coping methods.

Multiple sclerosis is one of the few diseases that wax and wane. You and the patient tend to become complacent when the remissions continue for months, even years. This roller coaster disease may strike again with no warning and devastate everyone involved. When the attack is over, the patient may be left with more severe disabilities than before.

What is Multiple Sclerosis?

MS is an incurable, chronic illness that generally strikes between the ages of 15 and 50. The cause is unknown, and treatment of the symptoms varies. It’s considered an orphan disease, as there is lack of research funds. MS is a progressive disease of the central nervous system, in which the simplest, everyday tasks can no longer be taken for granted. It is called multiple sclerosis because there are multiple areas of scarring (sclerosis) in the myelin coverings of the nerves.

Each person with MS has a unique set of symptoms, depending on where in the central nervous system the demyelinating occurs. There may be weakness, numbness, poor coordination, loss of balance, visual problems, loss of bladder or bowel control, difficulty speaking and dizziness.