It often happens gradually.
Your loved one, maybe your spouse, parent or child, is diagnosed with a chronic medical condition. Before you know it, it’s up to you to schedule doctor appointments, make pharmacy runs, handle the majority of household tasks, monitor your loved one’s health status, argue with the insurance company and even assist that person with basic acts of daily living like bathing and dressing.
“Too often, you don’t even realize you are caregiving until you are in the thick of it,” said Tara Anglim, LCSW-R, director of patient and family-centered care at Peconic Bay Medical Center. “It’s a thing that happens slowly, with you taking more and more on, until you start to struggle and feel really overwhelmed.”
It’s a common story. The Family Caregiver Alliance estimates that more than 40 million Americans have acted as caregivers in the past year. That number includes the spouses, family members, friends or neighbors who take on the responsibility of providing assistance to a patient with medical and personal tasks. And Ms. Anglim said that given the weight of those responsibilities, it can be easy to lose sight of yourself once you take on a caregiving role.
“Your focus is on the person you are caring for. It’s hard to see anything else,” she said. “Caregivers really are the invisible patients — and, with all they have to do, they really need as much support as our patients do.”
That’s why Peconic Bay Medical Center developed the Caregivers Center, a free coaching and support program dedicated solely to the multifaceted needs of family caregivers. The center is based on the pioneering Ken Hamilton Caregivers Center at Northern Westchester Hospital, but has been adapted to meet the needs of the Peconic Bay Medical Center community.
“The Ken Hamilton program was the first caregivers center in the country. They started the caregiver coach model as they saw that people who were providing caregiving themselves were really the best people to support caregivers because they had the right combination of empathy and understanding,” said Ms. Anglim. “But every health care organization is unique. We did a lot of focus groups with caregivers in our community. We listened carefully to what they identified as their biggest needs and what they would want to see in a program.”
Through the combination of peer and professional coaches, the Caregivers Center offers caregivers resources and advice through one-on-one coaching and support groups to guide them as they undertake what can be a really challenging role.
“It’s about giving caregivers tender loving care, empathy and active listening,” said Ms. Anglim. “And since our coaches have been down the caregiving road themselves, it really makes a space for our caregivers to know that we understand what they are going through without judgment and we are here to walk along with them at any part of their caregiving journey. We offer a lot of information and support that can sustain them in their role as a caregiver. But we also let them all know they are doing the best they can with the information and tools they have. It’s incredibly validating.”
The center also has an educational component. Ms. Anglim and colleagues work hard to engage the professional staff throughout the medical center to educate them on the importance of caregiver support and how to identify caregiver stress and fatigue.
“It’s those doctors, nurses, aides, physical therapists and other clinical staff that see the caregivers at the bedside,” she said. “We talk with them about caregiver stress, what caregiver fatigue looks like, and we’ve developed a referral service so they can connect those people to us. Even a lot of our primary care doctors have learned about the program and have started to refer caregivers to us from our community.”
Ms. Anglim is very proud of the program and the difference it is making for caregivers across the Peconic Bay Medical Center community. And she hopes to see it grow over the next few years.
“We’re at a point where there’s a tsunami coming. With people living longer than ever before, we’re going to see more and more caregivers out there who are going to have to sustain that role for a long time,” she said. “They are going to need our help because successful caregiving requires a lot of support, access to information and resources, validation and empathy. It’s our mission to provide that to every caregiver we can.”