By Kristin E. Holmes, Staff Writer at the Philadelphia Inquirer, originally posted online May 27, 2012.
Ellen Weiss of Warminster grabs it once a week when she goes out to breakfast with friends. For Pam Learned of Chestnut Hill, it comes in a slow walk at a nearby arboretum. And Carissa Snyder of Macungie gets up at 3 a.m. to have it, when everyone else in her house is asleep.
They are the rare moments, alone or with friends, when the women who are caring for husbands with ALS have time to themselves. But every now and then, the pangs of guilt intrude even though the wives have given up much of their lives to help bathe, feed, and dress the beloved husbands who were once physically strong and independent.
It is the weight of caring for family members debilitated by illness that therapist Elissa Lewin of Wyncote understands. So she created Nancy’s House, a charity that provides respite for caregivers in the form of three-day retreats where pampering, girl talk, and a good night’s sleep are on the agenda. The mantra: It’s OK to take care of yourself.
“Once I went to Nancy’s House, I took a moment and realized that I don’t have to kill myself to survive this disease,” said Jennifer Toland, 37, of Aldan, whose husband, Benjamin, a well-known local church musician, was diagnosed a year ago with amyotrophic lateral sclerosis.
Toland was one of eight caregivers who with Weiss, Learned, and Snyder gathered for a weekend retreat hosted by Nancy’s House last Friday through Sunday at the Normandy Farm Hotel & Conference Center in Blue Bell.
Lewin, a couples and family therapist for more than 20 years, established the charity after going through her own experience as a caregiver. She took care of her father-in-law for five years as he coped with diabetes, Parkinson’s disease, and dementia.
One day, she got a massage.
During a rare moment of relaxation, Lewin said to the massage therapist: “Wouldn’t it be nice if we could go someplace to take care of ourselves like we take care of others?” When Lewin’s father-in-law died in 2009, Lewin decided to create an outlet. She named her charity after the massage therapist (Nancy Brown) and began her research.
More than 65 million people, or 29 percent of the U.S. population, provide care for a chronically ill, disabled, or aged family member or friend, according to the National Family Caregivers Association.