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By Mary Bergin
December 14, 2004

Fifty-eight people are getting to know each other under life-changing circumstances: attorneys and a school principal, activists and a doctor, work-at-home moms and graduate students, teachers and social workers.

There would have been no reason for some of their paths to cross had it not been for the man and wife whose friendship,and illness, brought them together about a year ago.

Joel Ungrodt was diagnosed with ALS -- amyotrophic lateral sclerosis, or Lou Gehrig's disease -- in July 2001. It is a fatal illness that, bit by bit, takes away a person's muscle control and movement.

Ungrodt set records as a Lawrence University basketball player in the 1960s and is in the school's Athletic Hall of Fame. One year ago he was still walking, but no longer lifting weights or driving. Today he uses a motorized wheelchair and needs to be bathed as well as dressed.

As the illness progresses, it demands more time and emotional energy from his family. That part is not unusual; there are more than 54 million people nationwide who have been caregivers for someone this year. Their services are worth an estimated $196 billion.

The twist here is that Ungrodt's family is not in this alone. People from many corners of their lives have formed an effective caregiving circle that benefits Ungrodt, his wife, Lyn and, just as importantly, themselves.

The "Share the Care" effort is patterned after a guidebook written by Sheila Warnock and the late Cappy Capossela; an updated edition (Fireside Books/Simon & Schuster, $14) has just been released.

The Ungrodts have been married 34 years and have lived in Madison since 1979. Joel is a psychologist who has devoted his life to helping children, particularly the severely neglected and abused. In 1990 he established Family Works Programs Inc., which arranges treatment foster care in five parts of Wisconsin.

The clients, typically, are older children (ages 10 to 17) with complex needs because of their birth family's situation.

So now the Ungrodts, a family that routinely helped others during rough times of life, are getting help for themselves.

"Asking for help is hard, and it didn't seem like we needed any help at first," Lyn says, "but as things progressed, I knew we needed to do this."

She has been a teacher at Wingra Elementary School for 24 years, and the mother of a former student is Jill Maidenberg, whose stepsister died of ALS. Maidenberg, with advice from Jewish Social Services and others, initiated the circle and worked to expand it.

"It wasn't hard to put the group together," Maidenberg recalls. "The hard part was waiting for Lyn to say 'OK, I'm ready -- come into my house.' It's crossing a line of privacy."

Each week two people are in charge in coordinating parts of the family's care. There are nine such sets of rotating captains. Others in the circle will run errands, do yard work, clean the house, fill the water softener, make meals, whatever is needed. A florist friend brings flowers once a week; dinner is made for them twice a week.

Some people help regularly; others are available as needed. A college friend, attorney Eric Schulenburg, brings a meal every Monday and also conducts range-of-motion exercises. It is companionship time that Joel Ungrodt cherishes.

"I believe these people care about us and help for the right reasons," he says. "I don't want to be pitied" or helped because of a sense of duty or guilt.

The friends benefit from the experience, says Claire Culbertson, because of the structure and boundaries that are part of the "Share the Care" manual. It helps them realize what they stand to gain from the circle, based on their own needs -- to make a difference, to feel a sense of belonging, to understand their own strengths and weaknesses, to ease guilt about not being able to care for someone else.

Culbertson is the Madison contact for the newly established Sharethecaregiving Inc., Warnock's nonprofit business that will educate others about effective group caregiving. Culbertson previously had suggested "Share the Care" as a resource for cancer patients and their families, had spoken about it at a state conference on Alzheimer's disease and helped develop a video that is used to explain "Share the Care" nationwide.

"It's not for everyone," she acknowledges. "Some people are very private and don't want people in their home."

Other families draw boundaries in other ways, and it is important for the "Share the Care" group to respect them, yet revisit needs and boundaries as a patient's condition changes. The caregiving model can be part of a hospice environment as well as a situation in which recovery is expected (such as a car accident).

The Ungrodts' circle includes present and former co-workers, parents of children whom Lyn has taught, relatives and neighbors.

"Anyone who has ever said 'let me know how I can help' is fair game," Maidenberg says with a smile.

"It's a good thing I married a kindergarten teacher," Joel Ungrodt jokes, because Lyn is accustomed to wiping sniffles, helping students put on coats, watching over them.

"I can look at my list and know all these people are there for us," Lyn Ungrodt says. "The emotional support that gives me. I can't describe it."