When Phyllis Mellina’s husband began to develop dementia, she found herself alone and overwhelmed with navigating doctors appointments, managing medical bills and helping him complete basic daily tasks.
It wasn’t until several years into his illness that Mellina discovered there are numerous resources available to support family caregivers like her.
“I wish I had known sooner,” she said at a meeting of caregivers Wednesday at Peconic Bay Medical Center. “If I had known, I don’t think the situation would have developed into what it did.”
It is a story familiar to other local residents who find themselves caring for a loved one in an area scarce of caregiving resources – and one that PBMC hopes to change.
Next year, Peconic Bay Medical Center will open Long Island’s very first caregiving center, a space inside the hospital that is dedicated exclusively to family caregivers and their needs.
The Family Caregiving Center will provide counseling from volunteer care coaches, monthly educational seminars and information about all the caregiving resources available in the local area.
Additionally, the space will offer a small escape for family members of patients at the hospital, where they can find a moment of quiet or a private place to speak with a counselor.
“Family caregivers are an essential part of a patient’s well-being and their quality of life,” said Tara Anglim, who is associate director of the hospital’s palliative care program and spearheading the new program for caregivers. “If the family caregiver isn’t supported in their role, or doesn’t have the resource or information that they need, the patient isn’t going to do well.”
It was a conversation with a patient that inspired Anglim to begin developing such a program specifically for caregivers. She recalls sitting at a man’s bedside in the intensive care unit and speaking with him for an hour about coping with his illness.
When she asked him what she could do for him in that moment, she remembers him saying, “You could give my daughter some support.”
“I have so many great people helping to take care of me,” the patient told her, “and no one is helping her.”
For the past three years, the hospital has offered a monthly family caregiver support group, which at the time of its founding was the only one on the East End. But it became clear to Anglim that this was not enough.
Starting this summer, Anglim and her colleagues held focus groups with local caregivers, discussing their needs and discovering ways the hospital could better support them. Though every caregiver’s situation is different, three common themes began to arise from these conversations.
“They need more support, they need more access to resources, and they need more information and education,” Anglim said. “And those are not hard things to give them.”
Currently, there is no central location where Long Island caregivers can go to learn about all the resources, programs and support available to them. That includes programs to deliver caregivers meals, provide them with transportation, help them apply for Medicaid and Medicare – even grant money that can be used to hire someone to watch the patient while a caregiver goes out to dinner with a friend or attends a family wedding.
“They’re usually so entrenched in their role of caregiving that they don’t have time to research all the resources that are available,” Anglim said.
In addition to a lack of awareness, resources for caregivers are scarce on the East End compared to the rest of Long Island, and they are spread out across towns on both forks.
The geography of the East End also poses a unique challenge to the local aging population, who may find it hard to cross from one fork to the other. For seniors who can no longer drive safely, this can be even more difficult: Eastern Suffolk County is notorious for its lack of public transportation.
“I do all the driving to all the different doctor appointments, to the hospitals, to pick up medications,” said Janice Bergen, a Mattituck woman who cares for her 80-year-old mother.
Bergen hopes PBMC’s new program will be a “hub of information” for local caregivers to help with the daily challenges of caring for their loved ones. “Because right now, we don’t have a main hub,” she said. “When I go to the support groups, people are always asking about what’s available, and we have to tell each other about the services we know about.”
The hospital plans to launch the program early next year, with training for caregiver coaches beginning in February. Anyone interested in volunteering as a family caregiver coach can email Tara Anglim.
“We’re just listening to our caregivers,” Anglim said. “They made it easy for us to put all this work into it, because they do it on their own every day. They give everything they have into caring for someone they love.”