NEW YORK — At 17 years old, Maggie Ornstein became a caregiver when her mom suffered a frontal lobe aneurysm.

"It's very much like Alzheimer's or dementia right, so she needs someone around all the time," said Ornstein, describing her mother's illness

And, for 25 years, she says she's been there, making sacrifices with some but not nearly enough help.

"We have 40 hours a week of care, which sounds like so much,” Ornstein said. “But when you think about that, my husband and I are still on duty 128 hours a week. It's the equivalent of three full-time jobs.”

She's among the caregivers supporting an effort backed by the AARP to convince lawmakers to provide a $5,000 tax credit to help ease what can become a crushing financial burden.

"There's not nearly enough policy that helps family members do the work that we're doing.  We're not recognized as workers,” Ornstein said  “We should be, especially during the pandemic. We're essential front-line workers.”

"They can do a variety of tasks, anything from helping a loved one get to the doctor, helping them with their medicine," said David McNally, the director of Government Affairs and Advocacy for AARP New York State. He says in addition to the emotion and physical toll of taking care of a loved one, the financial strain has been growing.

“Ninety-five percent of people involved in unpaid family caregiving are spending their own money out of their own pocket to do it," McNally said.  "Seventy-eight percent have ongoing expenses that they are paying for out of their pocket that totals over $7,000 a year."

Ornstein, who holds a doctorate in earth and environmental sciences and works as a public health geographer, also studies caregiving and uses her first hand knowledge to share how crucial caregivers are.  She hopes policy makers are listening.

"If this moment doesn't highlight that sufficiently, I don't know what ever will," Ornstein said. “But people's lives are dependent on us.”

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