Positive Alternative to Euthanasia
Share the Care Teaches Team Care for Friends In Need
By Jenny Nolan
NRLC Department of Medical Ethics
The 12 women didn't all know each other; in fact, some of them were total strangers. But they did have one thing in common: Susan. Sitting in that room in New York City, each woman's thoughts centered on how she could help this friend, Susan, whose battle with cancer was growing intense. For three and a half hours they brainstormed with Susan and her therapist, Dr. Sukie Miller, about all the things Susan needed and how to get them to her.
Cappy Capossela and Sheila Warnock found themselves at opposite ends of the spectrum that day. To Cappy, Susan was strong: an achiever, a success, and a peer. Susan's cancer exposed her vulnerability in a way that absolutely terrified Cappy.
On the other hand, Sheila Warnock was Susan's best friend, had been there since the diagnosis, and was doing double duty as the sole caregiver of her own very ill mother. By the time Susan and her therapist met with the 12 volunteers, Sheila was already a burned-out caregiver.
The group's goal was to provide Susan with all the help she needed, without overloading any one person, and leaving Susan with as much control as possible. And so Share the Care was born.
Over the next three and a half years, the 12 women became known as "Susan's Funny Family." There were no limits to the projects they undertook on Susan's behalf. They shuttled her to and from doctors' appointments, checked her in and out of the hospital, filled out reams of paperwork and kept it organized, charted medications, cooked, shop-ped, flew her to an alternative care center in the Bahamas, and even supervised her daughter's wedding. Somewhere in the middle of being Susan's friends, the women became friends with each other.
For it is in giving that we receive. Sharon and Cappy's experience caring for Susan up until her death proved so rich and fulfilling for them, in addition to what it did for Susan, that the two wrote a book about it called Share the Care. The book is not only the story of their journey with their friend and the lessons they drew from it, but also a documentation of the unique system that yielded such fruit for everyone involved.
I found my way to the Share the Care web site (www.thefuneral directory.com/stc_book.html) and clicked on a link labeled "Share the Care Forms" out of curiosity. The lists, charts, and step-by- step outlines would warm a schoolteacher's heart.
The framework is flexible enough to be adapted to any situation, from a short surgical recovery to a long, chronic illness. Every step is explained, no detail is forgotten, and there is a place for everything.
The Share the Care system begins with a meeting of potential helpers run by a leader and coordinator. They explore the patient's needs, make note of which friends can participate in caring and at what times.
Predesigned charts, printable from the web site, classify information simply. There's a place to record what skills you have to offer, what you absolutely can't deal with, and what your hobbies are. If you'd love to help with scheduling doctors' appointments and updating out-of-town family members, but can't cook more than boiled water, there's a place for you to make that known.
With everyone's needs, abilities, and limitations collected in a single binder, two captains are chosen each week to organize care. Information moves through the group systematically via a telephone tree. A yellow pages chart lists important phone numbers: landlords, repair companies, babysitters, etc., and all of it can be printed off the Internet site in ready-to-use form.
The concept of team care for the chronically ill has taken hold in more than 30 states, as told by National Public Radio's Richard Knox in a February 18 story that appeared on the NPR website (www.npr.org). Inspired by Share the Care, almost three dozen people in Sandwich, New Hampshire, rotate in a caregiving network for Phil Simmons and his family. Calling themselves FOPAK, for Friends of Phil and Kathryn, they are enabling Phil to stay at home and continue his writing career even as Lou Gehrig's disease has disabled his arms and legs. Without the group, said FOPAK member Tom 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."
According to NPR, nearly 100 million Americans live with chronic, incurable illnesses. Besides needing medical care, many need help walking, eating, and getting dressed, which usually falls to family members to handle. It's a situation that when faced alone can quickly become overwhelming.
Phil Simmons hopes his group will help people realize what is possible. "To see a group like this working as well as this one is, I would hope, would cause people to reflect on the possibilities that are there in their own communities," he told NPR. "Because this can be done. Community is possible. Relationship is possible. It's up to us to create it."