Reminding caregivers to care for themselves

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.

Lewin found many scientific studies indicating that the stress of caregiving can lead to increased risk of illness, including depression, heart disease, and diabetes. A 2003 Ohio State University study found that a research sample of caregivers had a 63 percent higher death rate than a group of noncaregivers.

"We see Nancy's House as [a form of] preventative health care," said Peter Solomon, a member of the Nancy's House board of directors.

Lewin has offered 10 retreats since 2009. The weekend costs $50 per person for the three days and includes hotel accommodations, meals, and activities. The actual cost is $850 per person, but Nancy's House funds the balance through charitable donations from groups such as the Tackle ALS Foundation and the Phillies Charities. Nancy's House also raises money through an annual craft show, and a wine and cheese reception and raffle, this year scheduled for June 21 at Conversation Hall at Philadelphia's City Hall.

During the recent retreat, the eight caregivers walked through the doors of the conference center, temporarily leaving behind their responsibilities as full-time caregivers to loved ones with a disease that robs the person of the ability to move or speak.

The caregivers stretched out on mats for yoga and meditation, created terra-cotta tiles during an art class, and chatted with Lewin in individual therapy sessions.

Tracey Smay, 49, a mother of four from Elizabethtown, Lancaster County, is caring for her husband, Don, 48. He is in a wheelchair and is unable to use his arms or legs, but he is able to speak. Smay gets her husband up and dressed for the day and stays with him until a part-time personal-care assistant arrives for a four-hour stint. Smay goes to work, comes home at 1 p.m., and cares for her husband for the rest of the day.

Sometimes, she is so stressed that "I'm at the point where if you add one more thing to my emotions, I don't think I can take it." She found the meditation exercises at this weekend's retreat to be invaluable.

"Look up and breathe in," meditation teacher Seth Rotman said softly to his class members as they lay down on their yoga mats. "It's just about letting go, triggering your mind and body to be able to just stop. It's been a while since you guys could just stop."

Snyder, 32, opted for a workout in the gym. Her husband, Brett, was diagnosed when he was 25. The couple have a 2-year-old son. Snyder says she felt like an "island" before meeting other caregivers who could identify with her situation. Through connections made at Nancy's House, she purchased a handicapped-accessible van at a discount from another ALS family, "or else we wouldn't have any transportation."

During the weekend, the women chatted about shared experiences, grandchildren, and whose neighborhood Kohl's department store was the best. Learned said she came for the chance for some peaceful solitude. Weiss reveled in the feeling of doing nothing. Toland used the weekend to connect with something she sometimes feels she's lost: "It gives me a moment to pause and feel like I'm Jennifer and not just a nurse."