As her husband Ken battled mesothelioma, Marian Hamilton felt the pressure mount from repeated trips to the hospital and serving as his primary caregiver.
"I wanted an oasis where I could get away from the bright lights, the noise and the stresses of the hospital, and just take care of myself and be taken care of," Hamilton says.
When her husband passed away in 2004, she brainstormed an idea to create "a Zen atmosphere" to help caregivers cope with their demanding roles. The Ken Hamilton Caregivers Center at Northern Westchester Hospital in Mount Kisco, N.Y., marked its fifth anniversary last November. Center officials are now helping other hospitals set up similar programs to comfort caregivers.
"I would be surprised if there's not a need at every hospital," Joel Seligman, president and CEO of Northern Westchester Hospital, says of the therapeutic environment that family caregivers can visit for resources and support.
The 900-square-foot center, for which Hamilton raised funds for construction, furnishings and an endowment, includes a tranquility room with reclining chairs, waterfalls and sand, as well as a kitchen with healthy snacks, a library, office space, living room and self-massaging chair.
The comprehensive training for community volunteers involves learning skill sets such as active listening and problem solving, as well as shadowing a seasoned caregiver coach before being "given their own wings to fly," says Maria Hale, the hospital's vice president of patient advocacy.
Organizations interested in mirroring the center's approach receive a specialized volunteer training curriculum along with in-depth guidance in designing and launching a family caregivers center and support program. It also delves into creating community partnerships, outreach and fundraising campaigns, building a resource library for caregivers, and engaging hospital staff and physicians as primary referral sources.
MidMichigan Medical Center turned to Northern Westchester Hospital for guidance in designing its Maria Mencia Cancer Caregiver Support Network, which partners with a local United Way agency. The program began at the Midland, Mich., location in 2009 and has served more than 500 caregivers. Plans call for systemwide implementation by MidMichigan Health within a couple of years, says Agnes Williams, a social worker who directs the support network started by Lou Mencia, whose late wife, Maria, had colon cancer.
"We have 16 caregiver coaches, and they provide one-on-one emotional support," Williams says. "The coaches link people" to resources that help with everyday needs such as meals, transportation and laundry. They make weekly phone calls to caregivers' homes and spend time with them while a loved one undergoes chemotherapy treatments.
"The caregiver role is a very taxing one, and it's never more difficult than it is during a hospital stay," says John Schall, CEO of the Caregiver Action Network in Kensington, Md., which changed its name in January from the National Family Caregivers Association. "It's extremely important to have a place where you can find some refuge and get respite no matter how momentary."