The hidden costs of unpaid caregiving in America

Across the United States, an estimated 53 million people are unpaid caregivers, many of whom, like Ty Lewis, are part of the "sandwich generation" — simultaneously raising children and caring for aging parents.

Lewis, a social media influencer, sought support from her followers by sharing her experiences on Instagram as she cared for her mother, who suffers from Alzheimer's disease.

"I needed community. I needed love. I needed people to be seen," Lewis said.

Her Instagram page rapidly grew as people responded to her honesty and vulnerability.

Lewis's mother, Gertrude, requires around-the-clock care, an all-consuming task that Lewis and her husband manage while raising their two daughters.

"Mommy requires 24-hour care, so she cannot be by herself. She is unable to do anything, so we have to assist her, going to the bathroom, getting in the bed, dressing," said Lewis.

"It's been very hard. We have sacrificed a lot, um, mentally, emotionally, socially, and especially financially," she continued. Medicare, a federal health insurance program mostly for people over 65, does not cover long-term care, often leaving families like Lewis' to fill in the financial gap for seniors who need care. Lewis' mom was a teacher and, despite receiving a pension and Social Security, it's still not enough to cover the costs.

Lewis revealed that last year alone, her mother's caregiving expenses reached $90,000, with only $66,000 covered by her pension, forcing the family to supplement the rest.

"You work five, six, seven jobs. You Uber. I am a literacy specialist at a school two days a week. So you hold part-time jobs and you do what you can," said Lewis.

The financial strain is widespread, with half of American adults unsure if they can afford necessary care. On average, at-home care in the U.S. costs $61,000 annually, while a private room in a nursing home nearly doubles that expense.

Nicole Jorwic, chief of advocacy and campaigns for Caring Across Generations, said the situation is "beyond a crisis point."

"It's been a rolling crisis and we're at a catastrophic point," she said.

Caring Across Generations works to change caregiving policy and support families and workers. Jorwic advocates for government action to support family caregivers, whom she notes provide $600 billion of unpaid care annually.

Despite the hardships, Lewis remains determined. When asked if she would choose another path, she said she wouldn't have it any other way.

But she reflected, "it's that American dream ... I'll work all my life and then I'll have my retirement because I'll get to live. That's not the case." 

Back in February, Lewis' mother qualified for In-Home Supportive Services (IHSS), a California program that provides caregiving support. It's now the end of April, and Lewis says she still doesn't know how many hours a week of care her mother will receive or when it will begin.

Caregiving resources:

• Caring Across Generations
• National Alliance for Caregiving
• Rosalynn Carter Institute on Caregiving
• HFC
• National Council on Aging
• Justice in Aging