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.
• 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.