“They hand you a bag with his shoes in it and say, ‘Go home’ and you’re like, ‘How are we supposed to drive home?’ You’re stunned, in shock. You have to process everything.”
Mary Lynn Miracolo vividly remembers the bewilderment she felt that day in the hospital where she and her husband learned their 16-year-old son had died in a car accident.
They felt helpless and alone and didn’t know where to turn.
It’s a familiar feeling for people grieving a sudden loss — and familiar as well for people coping with a loved one’s chronic illness or disability.
Miracolo knows that first-hand, too. A caregiver for her father, who suffered with dementia for seven years, and then for her husband as he battled cancer, the Aquebogue resident understands too well the toll life’s journey can have on those caring for others during times of illness, disease or grief.
That’s one of the things that led Miracolo, a retired special education teacher, to volunteer as a caregiver coach at Peconic Bay Medical Center — where she was already working as a volunteer in the registration department.
“Because I know what it’s like, I wanted to help make it easier for others,” she says.
It’s a sentiment that inspires all the volunteer caregiver coaches in a new program at Peconic Bay Medical Center, where Long Island’s first caregiver center officially opened Tuesday.
“Caregiver coaches are all full of empathy,” said Tara Anglim, director of patient and family-centered care at the Riverhead hospital. They have all been in caregiver roles themselves and know from personal experience what it’s like.
PBMC launched a caregiver coaching program last year, after Anglim and her colleagues held focus groups with local caregivers, discussing their needs and discovering ways the hospital could better support them.
Volunteer coaches went bedside on the hospital units, providing empathy, support and validation to patients’ family members.
Caregivers often remain at their loved ones’ bedsides around the clock — putting off their own basic needs, including even food and water.
Caregiver coaches let them know they’re not alone — that someone cares about them as they care for their loved ones.
Coaches drop off small care bags containing snacks and water. They offer a shoulder to lean on, conversation and practical advice. They connect the caregivers with community resources they often don’t know exist. If a caregiver wants to, they can join the “Stay in Touch” program and get a weekly phone call from one of the volunteers — just to check in with them and see how they’re doing.
“This is so needed,” caregiver coach Susan Schulz of Jamesport said. Schulz, a retired nurse, has been a caregiver for both of her parents and her daughter.
“Caregivers are often older. Their children are all over the country. They feel very alone and worried about what’s going to happen,” Schulz said. “This is like a lifeline.”
The caregiver coaching program “just exploded,” Anglim said. Since April, the program has logged over 950 caregiver coach interactions, she said.
PBMC conducted hospital-wide training to help all staff members recognize caregivers in need of TLC and support, she said — whether family members accompanying a patient having surgery or the child of an elderly patient just diagnosed with Alzheimer’s.
“We alert the center to a caregiver in need,” said Jayce Reardon, a patient care technician on the 2-South unit. Staff on the units have been provided referral cards to let the caregiver program know about someone who could use their assistance.
Today, PBMC marked National Caregiver Month with the official opening of its caregiver center suite and a caregivers retreat, with a panel discussion, brunch and a meditation and relaxation session.
The first-floor center, located just off the main lobby, provides quiet space and comfortable furniture where caregivers can rest, enjoy snacks and refreshments and use a computer for accessing resources and information. A separate room provides a dedicated meeting space for support groups, and desk space where caregiver coaches can make their “Stay in Touch” calls.
The caregiver center also runs support groups for caregivers. One is for caregivers of patients with dementia or Alzheimer’s Disease. Another is not disease-specific. In January a new cancer caregivers support group will begin meeting.
It also runs an eight-week bereavement support group specifically for caregivers, because they have special bereavement support needs.
“You give yourself up for a long time, sometimes years,” Miracolo said. “It was all-consuming. You have to get yourself back.”
Anglim said when caregivers come together, there is power in the validation of hearing each other’s stories and knowing they are not alone. That’s the core of the mission of the caregiver center, she said.
“When you hear all the stories, you can’t imagine that this didn’t exist anywhere,” Anglim said.
Northwell Health is planning to establish a caregiver center in each of the hospitals in its system, PBMC’s public relations and community outreach manager Olivia Basaly said.
“We have a huge need for volunteers,” Anglim said. The PBMC program has only six volunteer caregiver coaches at the moment. Volunteers are asked to work one four-hour shift per week on any weekday. Anyone interested in volunteering should contact the volunteer office at 631-548-6021.