In the entranceway of Sabrina Winters’ home in Atlantic City, a hutch filled with framed pictures, certificates and documents took up space against a wall on the right.
“That’s her,” Winters said pointing to an enlarged photo of her and her mother on Pacific Avenue wearing tank tops and short sleeves. “Wherever I was, it was a home base for my mom.”
Winters, 49, of Atlantic City, spent most of her life caring for her late mother, who suffered from mental illness and substance use disorders.
She became part of 43.5 million people nationally who provide unpaid care to an adult or child, often needing supportive services themselves.
Experts say asking and seeking help can be crucial to achieve a good balance, especially for those who are caring for loved ones who suffer from chronic, lifelong illnesses or disabilities.
About 78 percent of caregivers report needing more help and information on topics related to their role, according to the National Center on Caregiving.
“There can be a lot going on, a lot of things to figure out, so we try to help them sift through all of that,” said Meghan Schweer, director of family services at the Mental Health Association in Atlantic County. “There’s a high burnout rate and we try to take some pieces off their plates.”
To look more closely at the needs of caregivers, Gov. Phil Murphy signed a bill into law last week to create a state Caregiver Task Force, which will be responsible for identify existing caregiver support services and recognizing areas that need improvement.
Winters and her brothers were raised by their father and grandmother, but their mother was always around even as she spent time in and out of county jail or Ancora Psychiatric Hospital.
Winters said they all felt a responsibility to look out for their mother, and did so in their own ways, though a lot of the in-person caregiving fell on her.
“Some people can do it and some can’t,” she said. “It’s even more frustrating when you love a person, but you want to scratch their face off. But if someone called about her, one of us would always show up for my mom.”
It wasn’t until 2005 when Winters got connected to Portia Trader, family advocate at the Mental Health Association, which made a difference in not only how she was able to care for her mother, but how she was able to better understand the illnesses and diseases her mother suffered from.
Schweer said there can be a lot of confusion for families on where to get help at the beginning of a diagnosis or symptomatic behavior. Caregivers can develop stress, anxiety and even depression while trying to handle all the health care, financial, housing, social services and more related to the situation.
It’s why the association helps link and refer people to the right clinical organizations. It also holds individual and group counseling sessions to help caregivers understand they need to take care of themselves, too, and they are not alone, she said.
“Our family advocates all have personal experience and know what it’s like to have that kind of stress,” Schweer said. “We explain to people that if they don’t take care of themselves, they may actually make themselves sick.”
Blame and guilt can also play big parts in a caregiver’s struggle, said Andrea Burleigh, executive director for the Atlantic Cape Family Support Organization, especially among caregivers of children with emotional, developmental, behavioral, substance use or mental health issues.
“They (parents) blame themselves. They may feel embarrassed and ashamed,” she said. “With my daughter, my biggest challenge was that I thought I could go and save her. As parents, that’s what you want to do and feel frustrated when you can’t. I had to realize it was her journey.”
Atlantic Cape Family Support Organization offers supportive services and education for people who care for children whereas the county association’s services focus on adults.
A team of experienced peer support partners work to help families navigate the complexity of the health care system. They also focus on the caregivers and make sure they are staying healthy, both mentally and physically.
Getting help and education was important to Winters and her family when it came to her mother, who passed away in 2016, she said.
“Mental illness can be cunning and deceitful. At times, I would be so frustrated and hurt, and that’s when Miss Portia would talk to me and would reinforce that it was a disease. It affects the whole family,” Winters said.
“But my mom had times of normalcy,” she said. “She loved the Boardwalk and the beach. You could tell she enjoyed it in the moment. That was our time, the best time. It was just love and laughter.”