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ShareTheCaregiving: a program of the National Center for Civic Innovation

Inside the STC Book

Share The Care: Second Edition

 

INTRODUCTION by Sheila Warnock

FORWARD BY Sukie Miller, Ph.D.

 

PART 1

 

WHAT’S A CAREGIVER GROUP AND WHO NEEDS ONE?

 

1. How This Book Came to Be Written

Chapter One Excerpts

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ANOTHER GROUP IS FORMED

Susan died on September 14, 1991. Six months later, we got a phone call from a woman who had been a friend of Susan’s. Her name was Francine, and she had been suffering from non-Hodgkin’s lymphoma for many years. She had met Susan at Cancer Care, a support group for patients, and they stayed in touch while Francine’s cancer went into remission and Susan’s grew worse. Susan often spoke of her Funny Family to Francine. After Susan died, Francine’s cancer reappeared and she was told she needed to have several courses of chemotherapy followed by a bone marrow transplant, a procedure that would leave her in a weak and vulnerable state for most of a year. Her aging parents and her sixteen-year-old daughter had been her only caregivers, and she was worried that coping with this dangerous and difficult treatment would be too much for them.

Francine described what she was about to go through, explained that she had a lot of friends who were trying to help but didn’t know how, and then in a timid voice asked if we thought she might need a Funny Family.

Our first reaction was to say, “Great,” Our second was, “Maybe Dr. Miller can lead it.” But Francine wasn’t into therapy and neither were most of her friends, and she wasn’t comfortable with that idea. She wanted us to lead the meeting. The prospect of leading the meeting without Dr. Miller was daunting. Even though Cappy and I had both been in hundreds of business meetings, this was different. This involved people’s lives. We knew that if we did it well we could actually help change the course of the next year for Francine and her friends.

We went to see Dr. Miller and told her we didn’t know if we could do this meeting without her. She said that indeed we could––and even do it better than she because we had lived through it. She instructed us to gather the members of Susan’s group and Francine and her friends and simply do a set of sharing exercises. We would share who we were and how we had come to know Susan; they would share who they were and how they knew Francine. We would share what we got out of being in Susan’s group; they would share what they hoped to get out of being in Francine’s group. We would not position ourselves as experts but merely give them the information, systems and forms we had developed over the course of three and a half years of taking care of Susan. We did not have to have all the answers, she said. All we had to do was share from the heart and keep the meeting on track.

We asked Francine to make a list of her friends and acquaintances who might want to help, and then sat down and tried to remember what had been the most important things in our (first) meeting with Dr. Miller and what had made a difference. In preparing for the meeting, we were surprised at the wealth of experience and information we had to pass on.

We consulted with Dr. Miller, planned the evening carefully, and divided it into two parts. In part one we would do the exercises we had done with Dr. Miller, and in part two we would pass along the practical worksheets we had developed.

When we called the members of Susan’s group, having not spoken to many of them for months, we were an immediate family. All twelve original members wanted to participate. Francine called to say fourteen of her friends were coming. The night of the meeting came. We had exercises to do and forms to give out. We had sandwiches, soft drinks, and cookies to have during a break. We had name tags for everyone.

The room was full of confusion as well as love and an intense desire to help. Francine was very nervous. Her friends were apprehensive. We were apprehensive. But the minute we began to share who we were and what we had done, the atmosphere in the room changed. We shared our experiences and memories, and realized that along with the difficulties and the pain, there had also been laughter, profound insights and miracles.

As Francine’s friends talked, it was very moving to see how much they cared for her, how much they wanted to help. There was a lot of warmth, laughter, and many tears as Francine talked about her illness, what she needed, how difficult it was for her to ask for help. We passed out the forms we had developed and explained the systems we had inaugurated. We watched in amazement as her friends began to see what was needed, to move themselves into commitment, to plan the practical steps they needed to take, and to bond together as a group.

We will never forget the special power of that evening as a group of well-meaning but frightened, unsure people became Francine’s Funny Family right before our eyes! Here are some of the things her friends had to say:

“I felt many things at that meeting. Sadness about Francine’s illness, the realization of what could happen in the future, pride in seeing my ‘sisters’ giving unconditionally, and the feeling that Francine felt privileged and felt our love.” (l.N.)

“It was an incredible experience and I felt very lucky to be there. It was all I could talk about for weeks.” (K.T.)

It felt very spiritual because of all the love in the room. I have never felt anything like that before. I remember thinking that Francine has given us such a gift of sharing and how lucky I was to be chosen.” (B.B.)

“I recall the organization and effort that went into the meeting. The dedication and commitment of Susan’s Funny Family. The fact that Susan had no relatives nearby. How collectively everyone was able to assist Susan and the honesty and ‘nondenial’ of Susan’s disease.” (C.R.)

The next morning, we realized that something unique had happened. We had found a way to share the burden of coping with serious illness, a way to take care of the caregiver. We realized how helpful it would have been if everything we had learned had been written down, and we resolved to document our caregiving system in a book. As we began to work on it, we realized that we were uniquely suited to the task. One of us had never been a caregiver and had been scared to death, and the other had nearly burnt out being a caregiver. Between us, we covered the two categories of caregivers struggling with serious illness today.

Since that first meeting we have started many other caregiver groups, refining the meeting but basically following the same format. Each time, no matter who is in the group, no matter how much fear or resistance there is, no matter whether the person has been sick for a long time or has just found out about the illness, we have been moved by the goodness of people, by the deep desire to help and the longing to be part of something meaningful.

This Book Is For You If…

• You’ve never been a caregiver and someone with a serious, complex, demanding illness turns to you for help. You love them, want to be there for them, but you are afraid.

• You’re already taking care of someone who is ill and your own life is beginning to fall apart; you’re tired and burnt out and there doesn’t seem to be anyone else to help.

Now you don’t have to do it all alone. No matter how scared you are no matter how sick they are, whether you’ve been a “joiner” or led a meeting, with the help of this book you can create a group to Share The Care™ . You can make caregiving a less stressful, healing, and meaningful experience for everyone. You can take total care of the person you love–and take care of yourself too.

 

2. Do you need a Caregiver Group?

Chapter Two Excerpts

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YOU DON’T HAVE TO BE A PROFESSIONAL

You don’t have to be a therapist, nurse, or specialist to do this. It requires no professional training, but it uses all the skills you already have. It doesn’t cost anything, yet it could save weeks, months, even years of your life.

When Dr. Miller first asked Susan to invite her friends to a meeting Susan said there were only one of two people who would come. But Dr. Miller persisted until finally Susan came up with eighteen names. Twelve of us came. We were from different pockets of Susan’s life…from her office, from PTA meetings, from the summer house we shared. Some of us were old friends, some casual acquaintances. Most of us were complete strangers to each other.

We were in our thirties, forties and fifties. We were single, married, gay, straight, divorced, with children and without, one of us a grandmother. We had a wide variety of occupations. Some of us were highly successful, other struggling and unemployed. Among the people who came to the meeting were an actress, an advertising executive, a housewife, a hairdresser, a corporate executive and a secretary.

We lived as close as upstairs and as far away as the next state. Later, the group expanded to include Susan’s cousin, a sister of one of the members (who was a nurse), a voice teacher and a jazz pianist.

Although we were a competent, intelligent group, one of us had ever dealt with a terminally ill person for any extended period, none of us had any special training (except the nurse, who said being in the group gave her a whole new perspective on caregiving), and none of us had ever coped with the dying and death of a young woman who was a friend.

When we started, we knew very little about disease, doctors, hospitals, and nothing of the intense needs of the chronically ill people. But we stayed together for three and a half years. During that time, several members were added to the group, only one person dropped out, and no one experienced “burnout.”

Listen to some of the people who were apprehensive about being in a caregiver family and did it anyway:

“I just had such a need to do something for Lois. Whatever that was going to be, I had no idea. I needed to be part of her life and to help her in any way possible. I also wanted a better understanding of what she was to go through so that it could possibly alleviate some of my own terror concerning cancer. She was so strong–I needed to witness her strength. After being part of her (group), I realized how strong she was but also how strong I could be. I learned about choosing life from her and the trials an individual’s body must sometimes endue. My own priorities in life are now being re-examined.” (W.F.)

When Susan asked me to come to the first meeting, I felt apprehensive. I didn’t know most of the people coming. Was I getting involved in something uncomfortable, overwhelming, and possibly bigger than I wanted to deal with or commit to? Afterwards, I was glad I had been there, to be part of a vital group of women, an interesting, colorful, diverse group who would touch each other’s lives by helping a friend. (L.T.)

 

3. Chapter Three Excerpts

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THEY BELIEVE NO ONE CAN HELP
Most seriously ill people believe no one can do anything to help, and it’s not surprising. They’ve been given horrendous diagnoses, been wheeled under huge frightening machines, and been confronted by a confusing set of options for treatments and drugs by a high tech, overburdened medical establishment that can be impersonal and cold. They’ve had doctors tell them that even they may not be able to help. They feel suddenly alone, different from everyone else. When what they’re facing is so huge, so catastrohphic, they can’t imagine it could help just to have someone to talk to, someone to go to a doctor with them, someone to hold their hand. Maybe they were never very well taken care of when they were young, so they don’t believe anyone can take care of them.

THEY FEAR LOSING CONTROL

Another reason they may not want help is the fear of losing control. Maybe they’ve survived other tragedies by retaining control. Maybe they’ve never confronted the fact that one day we will all lose control. In our fast-paced, chaotic, demanding world, most of us have spent years trying to gain control over our lives. We build fences and fortresses, put in alarm systems, and amass fortunes to protect ourselves. We live in a culture that tries to control the climate with air conditioning; the sun with SPF; aging with diets, vitamins and cosmetic surgery; the mind with medication; the future with astrologers; the personality with drugs. To be suddenly told we have a fatal disease and must immediately have surgery and radiation or we will die, to confront the random mystery of cancer or AIDS or Alzheimer’s is at odds with everything we have been told, everything we would like to believe.

Furthermore, the idea that we can no longer take care of ourselves brings up our deepest fears and our deepest wounds. We all want to take care of ourselves. From our first step to our first bicycle to our first job, we are proud of being able to support ourselves, to contribute, to be part of things. Suddenly we feel we may no longer be useful or needed.

Asking for help means admitting how sick we are, and people with a serious illness have so many doctor appointments, so many trips to the hospital, so many crises, that they would have to ask and ask and ask. Every time they ask they feel more helpless, more out of control. Every time they ask, they feel they are imposing on their friends and driving them away.

THEY FEAR LOSING THEIR PRIVACY

There are other fears. Most of us value our privacy and we fear that if we let a group into our lives, we will lose it. We wont have our space. They will find out our secrets. Many people are uncomfortable in groups, preferring one-one-one situations. Usually, people who are ill have come to rely heavily on one or two people and, being obsessed with their own tragedy (understandably), have no idea what a burden they have become. So the idea of a whole group coming into their life, their home, even with the best intentions, may be viewed by the sick person as loss of that one special caregiver. They may feel that the group would bond together, leaving them out, or even be against them.

 

4. How to use this book  

Chapter Four Excerpts

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THE SEVEN PRINCIPLES

During the years that Susan’s Group was in operation, certain issues came up again and again. In dealing with these issues, we discovered there were some guiding principles that seemed to hold all of us together through the good times and the tough times. They were somehow keys to our ability to work together and they proved themselves over and over. We call them The Seven Principles, and as you prepare to take part in a caregiver group we urge you to keep these points in mind: Click here to download the The Seven Principles as a PDF.

 

PART 2

 

STARTING YOUR GROUP AND MAKING IT RUN

 

5. A Message from the Authors: How to Use This Section

6. Planning the Meeting: Getting Started

Chapter Six Excerpts

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FINDING THE PEOPLE WHO CARE

The following is a list that may help people who are ill find the people for their unique caregiver group. If you go through the list with them, you will find that there are many who care. People you never heard of. People you never expected. People who feel just like you do. They want to help but don’t know how. Even if there are items on the list that do not apply to your friend, it will surely spark some additional ideas.

Encourage both men and women, young and old, close friends and casual acquaintances, people who have been caregivers and people who haven’t, people who want to do a lot, people who can do only a little. The more different backgrounds and abilities you have in the group, the more you’ll be able to help. There are enough jobs in every caregiver group so that every man, woman, teen and child can find a suitable job.

Immediate family and all relatives (including children and teens)
Close and not-so-close friends
Neighbors (current and old––from another neighborhood)
Colleagues, past and present
Business associates
Clients
Unions
Business organizations
Church and synagogue or meditation groups
Fellow PTA members
Classes (dance, art, photography, sailing, computer)
Friends from the armed services
School or university (night classes, summer classes)
Old schoolmates
Old roommates
Fraternities, sororities
Elks Club, Friars Club, Toastmasters et al.
Organizations for retired professionals in their field
Former students
Country Club friends
Tennis or golf partners
Friends from exercise class or the gym
Fellow joggers
Friends of friends who want to help
Priest, minister, rabbi
Local community center
Senior Citizens center
Rugby, soccer, basketball teammates
Skiing friends
Summerhouse friends
People they know from walking the dog
New friends
Parents of their children’s friends
Local community theater
State fair friends
Four-H Club
Friends from places they have done volunteer work
Friends from Bingo night
Fishing and hunting friends
Clubs: cooking club, book club, bowling club, chess club and so on
Singing groups-chorus (even if they see each other only at Christmas)
Friend’s spouses, boyfriends, girlfriends
People training for social work
Student doctors and nurses
Housekeeper, maid, cleaning lady, baby sitter
Hiking and camping friends
Friends met on vacation
Boy scouts, girl scouts, service groups
Political organizations
Volunteer groups
Friendly manager of the local grocery store
Someone with nothing to do (bored with retirement)
A pharmacist at the local drugstore
Support group friends
Cancer care, Gay Men’s Health Crisis, ALS support group (any applicable support group)
Twelve-step programs
“Quit smoking” program friends
Friends from special courses (for instance, Course in Miracles, LifeSpring)
Friends from group therapy

 

Don’t neglect or forget people who live far away or in other towns. They can do all kinds of things to help as well: research work on the internet, send cards, notes, tapes or emails of encouragement to the person who is ill. Just use a little imagination or ask what they think they might contribute from a distance.

7. The Meeting: Part One: Getting to Know Each Other

8. The Meeting: Part Two: Getting Organized

9. The Workbook: All the Materials You need to Make Your Group Run

 

PART 3

 

BEING PART OF A GROUP AND SHARING THE JOBS

 

10. What the Group Means

11. The Most Common Caregiver Group Pitfalls and How To Avoid Them

12. The Jobs: An Overview

13. Going with Your Friend to the Doctor

14. Ten Steps to Making a Hospital Stay as Painless as Possible

15. Finding Your Way Through the Medical Maze

16. Caregiving at Home ( and Far From Home)

17. Making the Home Safe and Comfortable

18. Beyond Safety and Comfort

19. When Groups Help Out at Home

20. Getting Their Affairs in Order

 

PART 4

 

KEEPING THE GROUP (AND YOURSELF) GOING

 

21. Being With Someone Who Is Seriously Ill

22. What-Ifs, Do’s and Don’ts

23. The Second Meeting: Ten Signals That It’s Time to Have One

24. The Second Meeting: The Agenda

25. Confronting Yourself

26. Changes

27. The Closing Meeting: Why You Need To Have One

28. The Closing Meeting: The Agenda

 

PART 5

 

BEYOND THE GROUP CHANGED LIVES

 

29. Personal Meaning

30. The Healing Journey

31. The Book with a Mission