Share the Care

How to Organize a Group to Care for Someone Who Is Seriously Ill

Cappy Capossela, Sheila Warnock

• Publisher: Touchstone
• Year: 2010
• ISBN:
  9781439147887
• Topic: Medicine
• Subtopic: Medical Theory, Practice & Reference

You Don't Have to Do It Alone Whether you're prepared for it or not, chances are you'll take on the role of caregiver when a family member or friend is affected by a serious illness or injury, or when you find your elderly parent needs help. As you'll soon discover, the range of tasks and responsibilities involved are overwhelming. Share The Care offers a sensible and loving solution: a unique group approach that can turn a circle of ordinary people into a powerful caregiving team. Share The Care shows you how to:

• Create a caregiver "family" from friends, real family members, neighbors, coworkers, and acquaintances.
  
• Hold a meeting to organize your group, and introduce members to the Share The Care systems that guarantee every job will be done and no one person will have to do too much.
  
• Discover the hidden talents within the group, make the most of their resources, cope with group issues, and stay together in the face of adversity.
  

Included here are valuable guidelines, compassionate suggestions, and a simple-to-use workbook section that together offer support to free the patient from worry and the caregivers from burnout. Share The Care offers friends and family the best answer ever to the frequently asked question "What can I do?"

PART 1

What’s a Caregiver Group
and Who Needs One?

CHAPTER ONE

How This Book Came to Be Written

Capp’s Story

I met Susan Farrow when we shared a summerhouse on Fire Island, a narrow strip of beach that runs parallel to Long Island. Susan was four feet eleven inches of sass, a fiery redhead with a sharp wit and a sexy demeanor, a demanding job, and two children who were living with her after her divorce.

There were eight of us in that summerhouse, and when I think back on those carefree Fire Island days, the two things I remember most about Susan were her fierce commitment to having fun and our long conversations about men. We shared a passion for life and a love of passion. We were in our mid-thirties then.

But we were also ambitious women, and as our careers heated up we began to lose touch. I was an advertising copywriter (writing screenplays and songs on the side). She was the head of the promotion department of Lever Brothers (raising two children on the side).

I first heard she had cancer from Sheila, who was one of my oldest and best friends. I remember being shocked that Susan, of all people, could have such a serious disease, but when I tried to talk to Susan about it, she said there was nothing to worry about, that they “got it all.” Although she had had several surgeries and radiation treatments, she treated it as an unpleasant, temporary interruption of her life, and I was happy to treat the news of it pretty much the same way.

On the rare occasions I did see her (usually as part of a four-woman birthday group who celebrated birthdays four times a year), we talked about our careers, men, clothes, movies, New York, politics, anything but cancer, which she called “the Big C.”

I didn’t know it at the time, but Susan had a rare form of cancer that had started in the salivary gland and had metastasized to the bones. The tumors were slow growing at first, so there were long periods of time when she could tell herself it was gone and was never coming back. Then another tumor would appear on another bone and she would be back in the hospital or under the radiation machine.

Through it all, for years, she worked (and even managed to get a promotion), took care of her kids, and continued an on-again, off-again love relationship. She refused to join cancer support groups and never admitted the seriousness of her disease to anyone (I suspect not even to herself). I was content to be in denial with her, since I had never wrapped my mind around the concept of death and had never been sick a day in my life. In those days, I was a blur of activity, totally and relentlessly unaware of limitations. As Susan was fond of saying, I was one of those people to whom nothing bad had ever happened. I still had both my parents. I looked much younger than my age and had boundless energy and a Peter Pan optimism. Not only had I never had children, I’d never had to take responsibility for another living creature, not even a pet.

Then on March 15, 1988, I got the phone call that would change my life. Susan, who by this time had been struggling with cancer for four and a half years, told me through her tears that she could no longer take care of herself alone. She was exhausted, terrified, almost hysterical as she asked me if I would come to a meeting at Dr. Sukie Miller’s office. Dr. Miller was her psychotherapist and had urged her to invite her friends to a meeting to see if, together, we could find a way to help her. Dr. Miller, who had been actively involved in health-care issues for many years (and who had been an early advocate of group work), was uniquely qualified to conduct the meeting that would turn a gathering of ordinary people into a powerful caregiver group.

Susan invited eighteen of her friends to the meeting; twelve of us came. We were given very short notice to attend and I was frazzled. I had just left a job as advertising copywriter to open my own music company and was flying to Los Angeles for a recording session the morning after the meeting.

I knew only a few people in the room, and Sheila was my only really close friend there.

I was shocked as my feisty friend Susan broke down and told us her medical horror story, how she had eight doctors, none of whom talked to each other, how she was afraid she might have to quit her job, how she had to have a test immediately because if a tumor was growing on her spine, she could be paralyzed. She was angry, almost hysterical, and convinced that no one in the room could help her.

Dr. Miller had a four-foot-tall dollhouse in her office, exquisitely furnished, and I remember wishing I could crawl into it and stay there until the meeting was over. Dr. Miller went around the room and asked us each for one word describing our feelings. Mine was terror. I had never been very comfortable in groups, and this one was especially difficult because I was convinced everyone could see how scared I was.

Three hours passed in a blur, as we shared feelings and did exercises designed to help us come together as a group. We shared our strengths and weaknesses, formed teams, and answered strange questions, such as what did each of us think we would get from being in the group. When it was over, I flew out the door, glad to have the excuse of an early morning flight. I had agreed to be part of the group, but I wasn’t sure I’d be able to come through.

As I write this, that was five years ago. The group that came to Dr. Miller’s office that evening stayed together and took almost total care of Susan until she died three and a half years later. Only one person dropped out; others were added. As we went along, we developed a unique system for caring for someone seriously ill. We became known as Susan’s Funny Family.

In those three and a half years, I learned a lot about sickness and dying, but that was nothing compared to what I learned about living. I learned what it was to put yourself in someone else’s place. I learned how to stop doing and just be. I learned that by accepting limitations you make life a richer, deeper experience. I learned people can be healed even if they are not cured.

Mostly, I learned about the special power of a group, and I found bonds of friendship and love that are more powerful than disease and stronger than fear. I am not the person I was five years ago. Today, I lead Funny Family caregiver groups with my best friend and coauthor, Sheila Warnock, and it is still a mystery to me that I am now a source of strength for other people who feel as frightened and inadequate as caregivers as I once did.

Sheila’s Story

One of the few things Susan and I had in common was our red hair. Otherwise, we were a real contrast in personalities. She was outgoing, gutsy, and very much of the world. I was laid-back, creative, and into exploring the more mystical side of life. We shared group summerhouses and hung out in the city, going to movies, parties, and street fairs. As an artist, I loved helping her daughters, Keri and Elissa, with their costumes and makeup on Halloween, and Susan loved giving me advice on any subject whether I wanted it or not. Yet we enjoyed each other’s perspectives and were the best of friends.

But unlike her other friends, I knew of her war with cancer right from the beginning. One night I was at her apartment when she fretted over the lump that had appeared out of nowhere on the side of her head, just over the ear. “It’s probably a cyst, but go get it checked out right away,” I remember saying to her. Then her doctor sent her to a specialist who ordered surgery to remove it immediately.

I took her to the hospital, stayed with her kids, and visited her minutes after they brought her back from the recovery room, her face still stained yellow from the antiseptic. I’ll never forget when the surgeon came to speak with Susan and asked me to leave the room (because I wasn’t family). I felt sad, awkward, and angry all at the same time. I thought, Why couldn’t I be there for my friend? She was all alone except for the stranger in the next bed when the doctor told her, “It was malignant, but I think I got it all.”

During her recuperation she told me that she had decided to keep her cancer a secret. I listened and groped for words as she agonized that the operation had left her, for the time being, with an ugly, distorted smile. It all felt so unreal. Susan had always looked healthy and attractive, and she was my peer. How could all this be happening?

Over the next four years, I did my best to help her in emotional and practical ways as the cancer came and receded like the ocean. There were many more surgeries, radiation treatments, and tests.

But this was only half of my caregiving story. At the same time that Susan was fighting her cancer, my mother, who lived several hours away, was just beginning what was to be a long and painful decline. My father had died a couple of years prior, and my brother and sister-in-law lived out of the country. I suddenly found myself her sole caregiver.

Over time, I learned, by absolute necessity, an astounding number of things: how to buy and sell a home, drive a car, deal with emergencies, manage doctors, and navigate the intricacies of Medicare and Medicaid. Eventually I had to find a nursing home for my mother because she could no longer walk or be alone and I couldn’t make a living and care for her at the same time.

I called on strengths within myself I didn’t even know existed and did everything I could for both Susan and my mother. There was only one very important person I overlooked… myself. My life had just stopped. I rarely saw any of my other friends, never dated, and became obsessed with worry. It didn’t occur to me to ask for help even though I was always on the brink of tears and couldn’t sleep. My personal aspirations to pursue an acting career were shoved to the back burner, and even my work as a freelance art director in advertising (which was paying most of the bills) was suffering because I never had time to find new clients or be available when the ones I had needed me. I was always on my way out to solve another crisis.

Then Susan told me she had to have yet another complicated test, a test that required hospitalization. This time she was really on the verge of a breakdown, and at the insistence of her therapist, Dr. Miller, she agreed to call a group of friends together to ask for help. She knew I was totally burnt out and she was terrified of doing battle with no help at all.

The night the Funny Family was born, I looked at the sea of faces in the room and all I remember was feeling a huge wave of relief. I wasn’t quite sure how this group could possibly work. I wasn’t very big on groups and had only very recently joined a women’s support group just to air some of the overwhelming feelings I was having. In that group I had just begun to sense the possibilities of sharing.

Being part of Susan’s group was the most important caregiving lesson I could ever learn: how to take care of myself while I took care of others. As I learned to share workloads, decisions, feelings, and responsibilities—to ask for help when I needed it and allow myself to say no sometimes—my life began to return to me.

In one night, with the encouragement of Dr. Miller, this group of strangers pooled their heads, hearts, experience, and compassion and went to work. It is amazing to me how much I personally gained from that experience and the astounding difference the group made in the quality of my life. I learned so much from them, found more courage within myself because of them, and was able to express my frustrations, anger, and fear to them and know that they understood completely. To this day, we are bonded together by the three and a half years of tears and laughter we shared while helping Susan.

I never dreamed that I would be sharing my experience and writing a book on this subject with my friend Cappy. I feel privileged to be doing this work and to be one of the midwives at the births of so many new caregiver groups.

The First Funny Family

Over the course of the three and a half years that Susan’s Funny Family was together, we were astounded at the power of a group of ordinary people. We cooked and cleaned, shopped and visited, accompanied Susan to doctors, radiation appointments, hospitals, seminars. One of us did her insurance forms and paperwork while another coordinated her doctors, X-rays, and tests.

One member wrote a screenplay with Susan about their experiences with the group. Another member totally organized Susan’s daughter’s wedding, when Susan was unable to lift a telephone. Two of us and Susan’s older daughter, Keri, took Susan to the Bahamas for an alternative treatment, and over the course of six months, several members each spent one or two weeks with her in the Bahamas because she couldn’t be alone.

We baked her kiwi tarts, painted her toenails, held her when she was in pain, laughed with her when it was a good day. Eventually, we washed her hair and put on her makeup, wrote out her checks and arranged for in-home health care when she could no longer leave her bed. We learned about her medications, gave her injections, and finally arranged for the help of hospice for her last days.

We amazed Susan and we surprised ourselves. But the miraculous part is that if you talk to the individual members, no one regrets having been part of the group and no one would say it was too much. In helping Susan, we helped each other. Through crises, through making important decisions together, we held each other’s hands, discovered the enormous healing power of a group, and formed a bond so deep we believed it could see us through anything.

After Susan’s death, we knew that no one person (or even two or three) could or should have to cope alone with what it had taken twelve of us to do. We became determined to share with others what we had learned. Our chance came sooner than we thought.

Another Group Is Formed

Susan died on September 14, 1991. Six months later, we got a phone call from a friend of Susan’s named Francine, who 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 seco...

Table of contents

• Cover
• Title Page
• Copyright Page
• Dedication
• Acknowledgments
• Contents
• Introduction
• Foreword to the 1995 Edition
• Part 1: What’s a Caregiver Group and Who Needs One?
• Part 2: Starting Your Group and Making It Run
• Part 3: Being Part of a Group and Sharing the Jobs
• Part 4: Keeping the Group (and Yourself) Going
• Part 5: Beyond the Group: Changed Lives
• Bibliographic Resources
• Helpful Associations
• Index
• Footnotes