Team Care for the Chronically Ill
Listen to Richard Knox's report.
Home-Grown Model Spreads Caregiving Among Friends
Dozens of friends see to it that Phil Simmons and his family can lead as meaningful and productive lives as possible.
Photo courtesy Derek Marshall
Feb. 18, 2002 -- Nearly 100 million Americans suffer from chronic, incurable diseases. Most get adequate medical care, but if they need help walking, or eating, or getting dressed, it's usually up to family members -- an overwhelming responsibility.
In more than 30 states, people have been trying a home-grown solution to fill the gaps left by insurance and social service agencies. They're sharing the chores of caregiving among a wide circle of friends. NPR's Richard Knox has been following one of these caregiving circles. It was formed by people in Sandwich, N.H., to take care of a neighbor with Lou Gehrig's disease.
Phil Simmons has almost no use of his arms and legs, and requires help with tasks most people take for granted: handling papers, putting food in his mouth, trimming his beard. Several dozen people in Simmons' community have volunteered to act as his arms and legs. They allow him to maintain a high degree of control over his life as he loses the use of his body. Without this highly organized care group, he might be in a nursing home by this late stage of the disease. Or his wife might have had to quit work and become a full-time caregiver.
Instead, a man who was a college English professor before the disease struck nine years ago, still delivers lectures, as well as sermons and is at work on his second book. His message is about accepting whatever life dishes out. But he struggles every day against what's happening to him. His mind remains intact while amyotrophic lateral sclerosis, often called Lou Gehrig's disease, slowly kills off the nerves that control his muscles.
Simmons and his wife, Kathryn Field, and their two children managed on their own for more than six years after he was diagnosed with ALS. But as his condition grew worse, the family began to feel overwhelmed.
"At some point the situation was broken and needed to be fixed," Simmons says. "And asking our friends to help was the practical solution."
What they wanted was, in effect, their own little unpaid social service agency. So friends and neighbors were invited to the Simmons home near the village of Center Sandwich. Simmons and Field talked about the kinds of help they needed, and their friends talked about what they could offer. That was the birth of what they call FOPAK --- Friends Of Phil And Kathryn.
The group was inspired by a book called Share the Care. It's a how-to guide on how to help people with disabling health problems, written by two New York City women who formed a group to care for a friend who was dying of cancer.
Simmons and his wife have adapted the Share the Care program to spread the burden of caregiving across a group of almost 40 people. Every week a leader consults with Simmons and Field on tasks for which they need help. Then she lines up people to do them. Some pitch in every now and then, others show up like clockwork.
"Their family has touched the lives of dozens of, if not more, people here in this village," says FOPAK member Tom Thiel. "It is a meaningful part of life, for the kids, for everybody... We're part of something that is enabling, enabling a situation like this to be as good as it can be."
Without the group, says Thiel: "You'd have a frustrated family and the person would almost surely die sooner and certainly not have a productive phase of life, like is happening here."
There may never be enough care groups to help everybody in need, but Simmons hopes his story will help more people realize what's possible.
"To see a group like this working as well as it does, and to see a community as healthy as this one is, I would hope, would cause people to reflect on the possibilities that are there in their own communities. Because this can be done. Community is possible. Relationship is possible. It's up to us to create it."
Communities in more than 30 states have set up circle of care groups similar to Phil Simmons' Sandwich, N.H., group. If you're part of such a group, what advice do you have? If you'd like to set up a group, what questions do you have? Share your experiences, ideas and questions on NPR's discussion board.
Browse for more NPR stories about health care.
Share the Care: How to Organize a Group to Care for Someone Who Is Seriously Ill, by Cappy Capossela and Sheila Warnock, is published by Simon & Schuster (1995).
Read more about the Share the Care program.
Read about Phil Simmons' new book, Learning to Fall: The Blessings of an Imperfect Life.
Hospice has provided care and support for families of the terminally ill since the 1970s. Its Web site provides links to numerous organizations and support groups that deal with caregiving and life-threatening illness.
Search Hospice's caregiving resources.
The non-profit Family Caregiver Alliance is a national online support center providing policy updates, statistics and resources for at-home care providers.
At the National Institutes of Health Web site, find fact sheets on diseases and conditions, and learn about current research and clinical trials.