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A Place to Care for the Family Caregiver

Hospital-based respite centers can offer much-needed support and services

spinner image woman on her phone in a hospital seating room
Phil Fisk / Getty Images

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.

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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.”

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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.

spinner image a comfortable sitting room in the ken hamilton caregivers center
The Ken Hamilton Caregivers Center's (KHCC) warm inviting atmosphere is a welcome respite for caregivers.
Courtesy KHCC

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.

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Jerri Rosenfeld, right, chats with a family caregiver in the KHCC at Northern Westchester Hospital.
Courtesy KHCC

A safe place to be heard

“Caregivers often don’t self-identify,” says Jerri Rosenfeld, 66, who left her social work practice in 2006 to become director of the KHCC. “People will walk in and say, ‘I’m just the daughter,’ or ‘just the wife, not a caregiver.’ But when they begin to go through the litany of all they do, you can see that it’s at a cost to their own physical and mental health. Everyone’s identities can get totally wrapped up in caring for their loved ones.”

Rosenfeld is gratified to see how far health care has come in recent years regarding conversations and practices that include caregivers in the equation. “Medicine isn’t just about the patient anymore,” she says. “It’s about the caregiver, too.”

In the center “we tend to listen much more than we speak,” says Rosenfeld. “And while we’re prepared to provide practical information and refer resources, more often than not it’s the emotional support piece that people find meaningful.” She points out that sorrow and grief often have different dimensions and people need to a safe place to unburden. “A caregiver may be at the hospital for her husband’s hip replacement,” she explains, “but she may also be hurting and want to talk because her son is in rehab for addiction.”

The approach

The KHCC uses a three-pronged approach to support caregivers and community members. It offers a physical center, caregiver support on the hospital floors, and a phone support program after a patient has been discharged. As a social worker, Rosenfeld oversees a well-trained team of 34 caregiver coaches who are based in the center but spend most of their time on the patient floors. By seeking out the family caregivers, they can actively offer a nonjudgmental ear to hear about their concerns, struggles and thoughts.

The third prong of the center — the “stay in touch” program — involves the volunteer coaches reaching out to caregivers in the community whose loved ones have recently been discharged. The proactive support from the center helps them feel connected and addresses feelings of loneliness, isolation, sadness and frustration. This level of support ends only on the caregiver’s decision.

“We were in touch by phone with a man who was caregiving his wife with dementia, and he just couldn’t keep up,” recalls Rosenfeld. “We asked him what he did when she was sleeping, and he replied that he used the time to clean the house and do laundry. We told him that one day a week he had permission to let the tasks go and take a break, not because it would make him a better caregiver but because he deserved it.” Part of their work is to give caregivers permission to care for themselves and remind them it’s very normal to feel angry, depressed or want a break. “It’s so critical to provide the acknowledgment piece,” she says.

Paying it forward

The best example of how profoundly the center touches people’s lives is the fact that nearly half of the KHCC volunteer coaches are themselves former recipients of the center’s support. For many, it’s important to “pay it forward” and help another caregiver navigate a road they have already traveled. “When we walk in the hospital room and the caregiver realizes that we’re there for them, I wish everyone could see their expressions,” says Jill Gottlieb, 62, replication coordinator at KHCC. “They’re absolutely amazed and so appreciative for the chance to leave the room and come talk to us.”

Ellen Travers, 61, from Goldens Bridge, New York, initially encountered the KHCC while overseeing her elderly father’s multiple chronic conditions at Northern Westchester Hospital. Their support came at a time when she was struggling for balance, mothering four children ranging in age from elementary to high school.

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Her father died in 2006, and Travers was inspired to train as a caregiver coach and volunteer, which she did for eight years. In 2014, she was diagnosed with breast cancer and had her surgery and subsequent radiation treatments at the same hospital. Having recovered, she is incredibly grateful for the level of support her colleagues at the caregiving center provided her family. “When you’re the patient, you get to see the hospital from different vantage points,” Travers says. “It was incredibly inspiring and satisfying to see what we do from the flip side.”

But life wasn’t quite done with challenges for the Travers family. After Ellen’s recovery, her husband, Paul, was diagnosed with metastatic renal cancer and she stepped away to care for him until he passed away in 2018. Once again, her colleagues at the KHCC were there to offer support. After taking a year to cope with her loss, Travers decided to get a master’s degree in social work and is graduating this year with plans to assist families in crisis in the health care setting.

model for other centers

The KHCC is funded completely through philanthropy, which makes it a much more replicable and realistic model than asking health care systems to find extra funds to create a center. The center sends out one annual letter to its donor base, and it receives ongoing donations from grateful families. “I remember once an older woman handed us a $5 bill to help the next person,” recalls Rosenfeld. “Those are some of our most meaningful gifts.” It’s also gratifying for the team when people walk in years after interacting with the KHCC to thank the staff and share memories.

As the replication coordinator at the KHCC, Gottlieb’s job is to raise awareness and share the model of the center with other hospitals, which then adapt it to their own health care system. “When a system like Mayo comes on, it makes us so proud,” she says. “Thinking about the caregiver is a natural and critical component in health care. Sometimes I wonder what took our industry and society so long to get here.”

The KHCC-replicated sites include community hospitals, small cancer centers, teaching hospitals, quaternary care institutions and an acute rehab hospital. “We’ve formed a Caregivers Center Consortium that meets twice a year to share best practices and challenges,” explains Gottlieb. “Throughout the year, we host private online discussions for the replication partners to continue the dialogue and keep each other posted on developments.” In addition to helping the newer partners handle challenges like fundraising and communications strategies, they provide counsel on volunteer recruitment, training and retention strategies, and how to get buy-in from the facility’s staff. “Most importantly,” says Gottlieb, “we help them design a program specific to the needs of their population.”

Care for frontline workers

An unexpected outgrowth of the program was its expansion to support the hospital staff. Hospital staff often utilize the center to debrief after a particularly stressful event, meet with families for care-planning meetings, or obtain resources for their patients. The center arranges special programs for staff to have one-on-one support following a crisis, or they seek out staff to offer help for their personal caregiving issues.

During the COVID-19 pandemic, the center witnessed firsthand the devastation in the caregiving community, particularly with the hospital staff, who were working around the clock on the front lines. “We encouraged our hospital staff to come into the center for respite,” says Rosenfeld. “They were professional caregivers at work who were also supporting family members at home. Some days, during the worst of the pandemic, we held three or four support groups a day for hospital employees.”

When in-person visitation was not allowed in the hospital, the center staff provided regular, much-needed support to families via phone outreach. They were often the liaison between the families and the clinical team. Additionally, they met quarterly via Zoom with the 23 replicated sites to check in, support one another, and share the ways they were all trying to support their individual communities during the pandemic. “We became a lifeline to many, and we are immensely proud of our contributions,” says Gottlieb.

The caregivers program has been a tremendous success at Northern Westchester Hospital, receiving numerous awards over the past 15 years and becoming a well-integrated program within the hospital culture. “We meet people where they are in the journey,” says Rosenfeld. “The idea is so simple, but so extraordinarily powerful.”

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