Caregivers are often called the invisible patients. They carry a burden that can be isolating and stressful.
Advanced diseases and chronic illnesses such as Alzheimer’s, dementia and chronic obstructive pulmonary disease can affect a patient for years.
“People are living for a much longer time with diseases that are not curable and it really falls onto their caregivers to provide the day-to-day oversight of their care,” said Tara Anglim, director of Peconic Bay Medical Center’s new Caregivers Center.
After announcing plans last year for the first such hospital-based facility on Long Island, PBMC’s new center will officially open Tuesday, coinciding with National Caregivers Month.
Judith Jedlicka of the PBMC Foundation Board was the lead donor for the new center.
“The need for support for family caregivers was dramatized for me when I was in that role caring for my father,” she said in a press release.
Since announcing the project, PBMC has been working to develop a caregiver coach program. The program trains volunteers to speak with people who are primary caregivers for a loved one, guide them to resources and offer support during moments of crisis. The center, located off the hospital’s main lobby, will serve as a main hub for the coaches and caregivers.
Coaches have been actively roaming the halls of PBMC for the past six months, speaking with people staff members have identified as caregivers for patients in the hospital. They break the ice with a goodie bag, filled with water and snacks.
“We go in and say, ‘We’re here for you,’ and they’re shocked,” said Susan Schulz, a coach from Jamesport.
Since April, the center’s six coaches have interacted with more that 940 caregivers.
The center emerged from community members’ suggestions and the hospital’s patient family advisory committee. Ms. Anglim said she noticed that people really needed resources, education and support.
PBMC is seeking more volunteers for the program. The key attribute for a coach is empathy, and if an applicant is not right for the position they can be placed elsewhere in the hospital.
On Mary Ann Alexander’s first day as a coach, she encountered a woman who had just realized that day she’d be leaving the hospital as her father’s caregiver.
“She was in a thick state of panic because she had no idea what to do next,” Ms. Alexander said. “We sat her down, and she talked with Tara and by the time she left she had a smile on her face.”
Coaches then make follow-up phone calls to caregivers who participate in the Stay in Touch program, to check in on how they’re doing.
“The Caregivers Center helps us fulfill our mission to provide compassionate care for the entire family,” Andrew Mitchell, president and CEO of PBMC said. “It also helps us provide recognition to the family caregivers who for too long have been the unsung heroes of health care.”
Mary Lynn Miracolo of Aquebogue cared for her father for about eight years, and decided to get involved with the coaching program just a month ago. She lost a child in 1994 in a car accident, and remembers how differently the topic of death was approached back then.
“The evolution of caring and bereavement groups, and caring for the person, not just treating them medically,” she said. “That’s why I’m so excited to be on the ground floor and to learn.”
PBMC’s program is modeled after one that has been in place for 10 years at Northern Westchester Hospital in Mt. Kisco. Still in its infancy, the PBMC program currently operate in only in one unit of the hospital , but in time it will spread throughout the hospital.
The center will maintain a computer system that enables caregivers to find and explore local resources and will provide a space to lie down and relax with coffee and snacks. It also has a dedicated space for support group meetings. It is expected to be open 24/7, and staffed by volunteers Monday through Friday.
Photo caption: The Caregivers Center provides resources and space for people taking care of their loved ones to relax. (Rachel Siford photo)