On a sunny day in 2002, Marian Hamilton sat in the lobby of a large regional hospital, listening to the doctor on the phone. A feeling of despair began to swallow her as he delivered the bad news about her husband, Ken, who was undergoing yet another treatment for mesothelioma. Fragile and emotionally vulnerable, she finished the call and burst into tears. Not one person came over to comfort her.
Over the past two years as Ken’s caregiver, Hamilton’s life had been an exhausting roller-coaster ride, rocketing up with hope one week and down the next, fielding bad news while trying to remain outwardly upbeat. It was excruciating to watch a loved one suffer. Ken was receiving the best care his medical team could provide, but as Hamilton stood, staring out the hospital window at the people going about their normal lives, she felt completely alone. In fact, she couldn’t remember the last time anyone in the hospital had asked how she was doing.
“What if there were a place in the hospital where I could go to find solace and refuge?” she wondered. “Every hospital should have a physical space where caregivers and family members can share worries and concerns with experts, get advice and counsel, and simply let down out of sight of their loved one.”
After Ken died in 2004, Hamilton decided to honor her husband by turning her idea into a reality. That initial vision became the seed that grew into the Ken Hamilton Caregivers Center (KHCC) at Northern Westchester Hospital, her local medical center. Since then, that first center has been replicated by 23 other institutions around the country, from Midland, Michigan, and Stanford University Hospital in California to the Mayo Clinic in Arizona and the Martha Jefferson Hospital in Virginia.
A place to recharge
When a person first becomes a family caregiver, they’re often advised to “investigate local resources.” While that’s important, this directive is often received with a quiet eye roll by an overwhelmed caregiver, as if it’s a simple thing just to step away from the bedside and recharge. But with the increasing national focus on the critical role of caregivers, resources like the KHCC are gradually becoming more prevalent in towns across the country, located in hospitals or another community setting. One of the aspirational aspects of the center is that it’s open to community members, whether or not they have a loved one in the hospital.
Providing resources, support
Walk into the Caregivers Center and you’ll find the exact opposite of a sterile hospital atmosphere. The zen-inspired refuge is designed as a place where people can relax and replenish, with soothing, beige-colored walls and a fireplace area that looks and feels like a cozy living room. There’s a massage chair, a small kitchenette with snacks, and two computers where people can do research or catch up on work or emails. An extensive resource library offers an array of information and advice, from pamphlets and packets on Alzheimer’s and home health care to information on organ donation and end-of-life issues. The center can advise on how to transport a loved one to a specified location or a beloved vacation home at the very end of life. If someone needs bereavement services, they can offer referrals for those as well. The center strives to always provide an answer or the right direction to anyone who walks through the doors.
The KHCC offers resources from support groups and individual emotional support to stress management tools and community referrals. Coaches are trained to help demystify the hospital system for caregivers and families, including assisting in care-planning meetings. The team can help resolve family conflicts, assist with advanced directives and help families navigate the bereavement journey when a loved one dies. The caregiver coaches are also trained to help loved ones maximize opportunities for closure with the patient, even if their friend or loved one is no longer conscious. Sometimes it’s helping a family member understand that they are a caregiver, and therefore deserving of all that entails.