On Long Island, caregiving is a 'labor of love,' but new report shows it comes at a cost

Every weekend, Francine Holland, armed with bags of groceries, travels from her home in Copiague into Manhattan to care for her 86-year-old mother, who has dementia.

"It's a labor of love," said Holland, who on weekends shops, cooks, bathes her mother and manages her mother's bills and pays for a live-in aide to care for her during the week. "I do everything."

Holland is not the only one.

A new report from AARP finds that 26% of adults in New York — or more than 4 million people — are family caregivers, providing largely unpaid and unsupported care to older parents, spouses and other loved ones. While most care for an adult, 13% of family caregivers provide services for a child with complex medical conditions or disabilities, the survey found.

Nationally in 2025, 63 million Americans — or nearly one in every four adults — are providing ongoing care to adults and children with disabilities or medical conditions, the report shows.

The report estimates that family caregivers, the majority of whom also have full- or part-time jobs, provide $39 billion in unpaid services annually in New York, allowing their loved ones to continue living independently at home and in their communities.

But that care comes at a high cost, both emotionally, physically and financially.

Cost of caregiving

AARP found that 80% of caregivers pay out of pocket — averaging $7,200 annually, or roughly a quarter of their income — to meet their loved ones’ needs. Nationally, 82% of family caregivers are unpaid, the report shows.

More than a third of local caregivers, one quarter of whom live in a household with income less than $50,000, said they've experienced at least one negative financial impact, such as struggling to afford basic necessities, taking on debt or draining their savings, AARP found.

Many others, meanwhile, are forced to reduce their own work hours or leave the workforce altogether; make expensive home modifications; or sacrifice their own physical or mental heath to care for their loved ones, the survey shows. One in 10 New York caregivers lives with a disability and almost 30% also care for an underage child, AARP said.

Tax credits proposed

Beth Finkel, AARP's New York State director, said the data, released ahead of the 2026 legislative session, shows the need for lawmakers to pass a $5,000 tax credit for working caregivers, particularly as the state's aging population continues to grow and live longer.

"It really feels like New York is the right place to try something, maybe even to do it on a smaller pilot program," Finkel said. "If people don't get that help, they're going to end up in a nursing home. If we can't keep people in their homes, that's what we're looking at."

In 2023, the New York State Office for the Aging conducted a statewide community needs assessment of 27,000 adults ages 60 and older, including 758 responses from seniors in Nassau County and 953 in Suffolk County.

These assessments found that 11% of Nassau seniors and 16% of Suffolk older adults expressed the need for caregiving service — even as a high percentage of those individuals are providing care for a loved one, such as a spouse or child, themselves.

"The economic value of caregiving — by and for older adults — amounts to billions of dollars annually, forming the core of our long-term care system," said state Office for the Aging Director Greg Olsen. "State and national data make clear the value of aging network services to alleviate caregiver stress, whether on Long Island or throughout the state."

Becky Preve, executive director of the Albany-based Association on Aging in New York, said the state should implement its Master Plan on Aging recommendations related to caregiving.

They include establishing a state-led commission to coordinate the implementation of caregiver support services, improving peer support services, providing financial reimbursements for home modification, equipment and respite services and administering caregiver training and employment anti-discrimination protections.

"The plan seeks to relieve pressure on informal caregivers and help them sustain caregiving while maintaining their own employment and health," Preve said.

'My life was on hold'

Meryl Manthey, of Levittown, knows the difficulty of caregiving after spending nearly a decade, a period in which two of her sisters died, living with her elderly mother after she broke her hip and eventually developed Parkinson's. Manthey's mother died in 2020.

"There was a lot of running around, trying to help with the appointments, trying to understand what the illness is and how it affected her," said Manthey, 73, who had to cut back on her hours as a Realtor to care for her mom. "There was a lot we didn't know and didn't know what to expect."

And while so much of Manthey's energy was focused on her mother, her own life was put on pause.

"There's a lot of restrictions that you place on yourself and your own personal life," she said. "And that, to me, is probably the biggest thing. I felt like my life was on hold. ... It's that feeling like you really can't move on yourself."