Building a Care Team

By Paula Sanders McCarron, National Family Caregivers Association

Sheila Warnock was living in New York City and working as a freelance art director when she became sole caregiver for her mother, who lived several hours away. She was also caring for her friend, Susan, who had cancer.

"I was thinking, 'it's up to me.' It never occurred to me to ask for help," says Warnock, author of Share The Care (Fireside Books, 1995). Warnock was exhausted, moving from one crisis to another. That's when she learned the most important lesson of caregiving: "If you don't take care of yourself, you can't take care of others."

One day, Warnock was invited to a meeting arranged by Susan's therapist. She arrived to find a group of friends gathered. The therapist told them just how much Susan needed help and asked each person to consider what they might have to offer.

Over the next three and a half years, the group of friends became Susan's "Funny Family." Everyone made a commitment to do specific things like fix a meal, do the laundry, or help with her paperwork. They also dropped by to visit, watch videos, or give manicures. They came to realize not only were they helping Susan, they were easing the burden of responsibility for each other as well.

Warnock and Cappy Capossela, another member of Susan's "Funny Family," co-authored the book Share The Care about their experiences. "We wrote it for regular people," says Warnock. "Anybody can pick up the book and do what we did."

The book contains tips on how to find and invite people to be part of a team and provides worksheets for medical information, schedules, shopping lists, and telephone trees. Warnock has developed a Web site, www.sharethecare.org, and a non-profit service organization to expand upon the concepts found in the book.

Terra Rust says she wishes she had known about Share The Care when she was asked to schedule a team of caregivers at her church. She was the new president of the women's association at her Texas church when she received a call from "Mark." Mark was a much loved member and youth leader who had suffered an accident that left him paralyzed from the neck down. He needed people to stay with him while his wife was at work.

Rust was handed a list with about 40 names on it. She then spent a considerable amount of time over the next months trying to determine "who was willing to help and those who were really able to help" as she describes it. Her list narrowed down to about 12 to 15 people.

"People are good and want to help. But many turned out to be over-committed or simply not able to help at the times when help was needed. Those who did help seemed pretty self-aware of their capabilities," she says.

"When I was filling out the schedule for each week, I spent a huge amount of time making phone calls every weekend to learn who was available. But the next coordinator called everyone and asked each person to sign up for one shift for the entire month. I wish I had thought to do that!"

Rust says that kind of approach to organizing is what she learned the hard way and it is the kind of information contained in Warnock's book. "It would have saved all of us quite a bit of time if we had known," Rust says.

In looking back on the experience, Rust says, "Some people might have considered the accident was a test of sorts for Mark, but really it was a test for us, as a congregation. How do we care for each other? It was a chance for us to realize this is what we are about."

Rev. Malcolm Lewis Marler shares Rust's perspective. As director of The Support Team Network, a training and resource center headquartered in Birmingham, Alabama, Marler helps groups come together for the purpose of caring for people who are experiencing illness or disability. As Marler says, "It's certainly about helping others, but it's also about us. How do we respond when we are called?"

Marler began organizing support teams in 1994 to assist congregations in helping people with AIDS. Marler says, "As people began to experience being part of a team, they began to ask, 'Couldn't I do this for my neighbor who has cancer? Or for my church member who has Alzheimer's disease?' Or fill in the blank."

"So we began to teach people how to create teams for their friends, family members, or even for themselves," he says. "And that helped us to identify certain principles that lead to successful teams."

Marler offers this story: One man being helped by a congregational team was receiving what seemed to be an endless number of green bean casseroles. The man confided to Marler that he did not want to seem ungrateful, but he simply didn't like green beans. Not wanting to hurt anyone's feelings, he accepted each casserole with a "thank you." He would dump out the casserole, wash the dish, and then the following week, he would return the dish to its owner only to see it come around again filled with a green bean casserole. Perplexed about how to resolve the situation, he asked, "That's not the way it's supposed to work, is it?"

That gave birth to the Green Bean Casserole Rule: "You may have something to offer but you have to respect the person and ask if they want what you have to give," says Marler. "And the rule goes both ways. The person needing help lets you know what is needed and you must decide if you can offer that. When you have a 'yes' on both sides, then it's a go."

Marler says the Green Bean Casserole Rule reminds everyone to be respectful of each other. It gives everyone the freedom to say "yes" or "no" to a request. He says, "We encourage people to do what they love. By doing what they love, they want to do more of it. It makes every person a potential member of the team."

Another principle is to have someone who can serve as advocate. The advocate is someone who knows the situation and phones people to request they come to a meeting on behalf of the individual needing assistance. Most often it is easier for the advocate to make those calls than for the person or family who is in need of help to call.

"When people come together for that first meeting, it is not uncommon for someone to ask, 'How long do I have to do this?' It sounds as if they are receiving a prison sentence," Marler says, laughing. "We tell them we have an open door to being part of the team. The door is always open for anyone to leave and for new members to join. We've found that the more freedom we give people to leave, the longer they stay."

The Support Team Network helps people to create teams in a number of ways. Their small staff is supplemented by 15 consultants around the country who offer on-site training. Individuals or organizations can also download training materials and a "how to" manual from the organization's Web site, located at www.supportteam.org. Marler says the goal of The Support Team Network is to help people be more capable and effective in their caregiving.

Both Marler and Warnock see the concept of team caregiving growing. In addition to seeking the help of family members, friends, or congregations, they both see the rise of teams in businesses or work settings where co-workers come together to become or join a team. Warnock says she knows of a jazzercise class coming together to help one woman through the time of her illness and then helping the grieving husband and children. She also knows of a group of men who came to be known as the "Night Hawks" for their evening visits. Warnock found herself on another caregiving team with many of the original members of Susan's "Funny Family" when her dear friend, Cappy Capossela, was faced with her own terminal illness.

"It's awesome to see what people are doing," says Warnock. "But you have to let people in before you can get the help. I think too often people don't ask because they feel they will never be able to reciprocate."

"Don't withhold the gift" is Warnock's advice. "I tell people, by allowing others to help, they are sharing a gift. Many of us may not know what to say or how to act when someone is coping with illness unless we've done it before. We need to learn compassion and this is where we learn it, by doing. What better service, what better gift could there be?"

Paula Sanders McCarron is a freelance writer living in Alaska. She has been involved in nursing home, hospice, and home-based care for more than 20 years