A conference for caregivers supports the unpaid 'backbone of the healthcare system' - Generocity Philly

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Oct. 5, 2018 11:58 am

A conference for caregivers supports the unpaid ‘backbone of the healthcare system’

"We put ourselves at the bottom of the list and the bottom is the part we never get to," said Nancy's House founder Elissa Lewin about those taking care of sick or disabled family members.

Yoga at a past Nancy's House retreat.

(Photo via facebook.com/Nancys.House.Respite)

The chronically helpful among us will be familiar with the refrain, “I don’t have time to take care of myself.”

But one Wyncote-based nonprofit believes that you can, and you must — for the good of those you’re supporting, but also for the sake of your own life.

Nancy’s House seeks to lighten family caregivers’ burdens through in-person retreats and other resources. The organization is hosting its second one-day conference, themed “Loosening the Caregiving Knot,” on Saturday, Nov. 3, at the Science History Institute in Old City.

Nancy’s House defines family caregiver as “a relative or friend who voluntarily is helping a loved one who is disabled, chronically ill, or frail,” including a child, spouse, or elderly parent or relative. Responsibilities could include cooking for the person, taking them to medical appointments, bathing them or any number of small, yes essential tasks — all unpaid.

An estimated 43.5 million Americans fit this role, with an estimated economic value of $470 billion.

Founder and President Elissa Lewin said the organization was born of her own experiences as “a serial caregiver”: At one point in her 40s, she was taking care of a son with a significant learning disability and a mother-in-law with supranuclear palsy. In turn, she developed chronic lymphocytic leukemia, a disease that can be enhanced by stress.

“That was my introduction to what happens to us, physically, under stress,” said Lewin, who is also a licensed psychologist.

She knew she wasn’t alone in feeling overwhelmed by her familial responsibilities. There’s an increasing national awareness that caregivers need support and attention, too — see Pig Iron Theatre Company’s co-created production of “The Caregivers,” which premiered this summer after being informed by the experiences of social workers, nannies, home aides and others, as a local example.

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“We put ourselves at the bottom of the list and the bottom is the part we never get to,” Lewin said.

Nancy’s House tries to give those family members the time and space to consider what they need as individuals. Conference activities will include yoga, meditation, meditative doodling (aka “zentangling“) and a workshop on “keeping your house your home.”

Keynotes by family therapist Karen McGreer and elder law attorney Cathy Sikorski will focus on the need to remember humor in caregiving, and Germantown tile artist Karen Singer will lead a workshop on creating a physical “touchstone” for attendees to take home. There will also be a staffed activities room for any family members being cared for by attendees and who cannot be left at home.

Besides the upcoming conference, Nancy’s House hosts, depending on available funding, two to four weekend-long retreats per year for about 10 people — but “I always have a waitlist of about 65 people,” Lewin said. “I always feel like we’re just not doing enough.”

Lewin said such events are uncommon elsewhere in the country. She wishes that weren’t the case.

Caregivers are “the backbone of the healthcare system” because of donated time, energy, homes and savings,” she said. “I want people to know that we are a cause to be supporting.”

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