Program aims to share tips, support and resources by caregivers

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Lorraine Sepp scribbled notes onto a purple pad of paper as she listened to a speaker offer tips on organizing medical information, preparing advanced directives and arranging adult day care.

Mrs. Sepp, 61, does not need 24-hour assistance -- she can dress, feed and care for herself just fine -- but her mother-in-law does.

For guidance, she has turned to the Caregiver Champions program, a Jewish Healthcare Foundation initiative aimed at helping people like her who are caring for elderly family members.

Since spring, program leaders have been organizing meetings in Squirrel Hill, Monroeville, Penn Hills, Oakmont, Upper St. Clair, Bellevue, Shaler and the Baldwin-Whitehall area to share resources and information with people caring for aging loved ones who are increasingly frail, suffer from dementia or other health problems and no longer can live alone.

The meetings, or "learning circles," have drawn about 50 people so far, but program officials are hoping to attract up to 400 people over the next three years.

Nancy Zionts, chief program officer, said she hopes more people around the region will get involved by becoming "champions," who organize and assist with those meetings and suggest locations for new learning circles.

The program is funded in part by grants from the Jewish Healthcare Foundation, the Harry and Jeanette Weinberg Foundation, and the state departments of Community and Economic Development and Public Welfare.

"The reason that any of us are doing this is to make the lives of seniors better," Ms. Zionts said. "This will benefit the caregivers as well."

Mrs. Sepp and her husband, Hank Sepp, 61, both of Monroeville, help to care for Mr. Sepp's 91-year-old mother, who resides in an assisted-living facility in Western Pennsylvania, is nearly blind and uses a wheelchair. They make sure she's cared for and her legal documents and medications are in order, and they try to visit as often as they can. The Sepps have been attending meetings in Monroeville for the past couple of months to hear experts provide advice on such topics as organization of medical information, the physical and emotional stresses that accompany caregiving and legal matters.

Mr. and Mrs. Sepp said the meetings also serve as therapy sessions, where caregivers share similar experiences and give each other advice.

According to program statistics, about 45,000 older adults care for a family member or someone else in Allegheny County. A November 2009 survey conducted by the National Alliance for Caregiving in collaboration with AARP found there were 65.7 million people in the U.S. who had served "as unpaid family caregivers to an adult or child."

In many cases, these people are balancing jobs and the demands of their own lives with what often becomes the full-time job of attending to someone else.

Sleeping on the couch, feeling stressed and isolated, and not eating properly all followed after Roseann Martino gradually took on more responsibilities for the care of her mother and father over the past 10 years,. Her mother died in 2006 and her father, who now lives with her, has been diagnosed with dementia. She juggles taking him to an adult day care center, paying two sets of bills and dealing with the demands of his life and her own.

"It's the shock of being thrown into this," said Ms. Martino, 56, of Penn Hills. "All of a sudden you're caring for another human being. All of a sudden your life is not your own."

After she heard about the Caregiver Champions program from a friend, Ms. Martino said she wanted to share some of the knowledge she acquired in her 10 years of caregiving.

As one of the program's "champions," she organizes meetings, passes out fliers and finds a place for her group to gather. She said she "connects the resources and the knowledge with the people that are out there now just trying to get through the day."

"A lot of them are suffering silently," she said.

Caregivers often are overwhelmed and anxious at the thought of taking on full responsibility for others' lives, said Mildred Morrison, administrator of the Allegheny County Area Agency on Aging. They also may be frustrated or annoyed by the strange demands and increasing needs of their loved ones.

At a recent gathering in Monroeville, some who attended rolled their eyes while describing their parents' insistence on wearing out-of-date and sometimes dirty outfits and difficulty with completing once-simple tasks such as answering the telephone.

"Part of our role is to help a [caregiver] put the pieces of the puzzle together," Ms. Morrison said.

Some have faced that puzzle without warning.

Patti Byrnes, 65, of Swissvale, began attending a learning circle meeting in Penn Hills as a precaution, intending to acquire skills she didn't expect to draw on right away.

"My main intention was just to think ahead if there was a possibility that I might need it for my mother," she said.

Her mother, however, developed health problems while she was still attending program sessions. Ms. Byrnes now lives with her mother, who has recovered but still needs 24-hour attention. She gets her mother up in the morning, bathes, dresses and feeds her, and attends to other tasks as part of what now is nearly a full-time job.

Things have gotten easier for her thanks to the program, Ms. Byrnes said.

"I feel I was more prepared to handle what was handed me," she said.

At the learning circle in Monroeville, about 10 people sat around a table, name cards in front of them, sharing experiences and listening to advice.

Mr. Sepp said he has learned from others in the group and now understands there are people who can help.

After everyone had left, Mr. Sepp paused to add something he's learned along the way: "You're not alone."

For more information, go to www.caregiverchampions.org.


Meredith Skrzypczak: mskrzypczak@post-gazette.com or 412-263-1964.


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