For family caregivers, the costs of tending to loved ones exact a toll

By Nancy Combs, Justice Marbury, Emily Barnes and Brian Sharp

When working-age people care for a loved one facing dementia, a chronic illness or physical limitations, they think primarily of the well-being of the person receiving care.

Whatever the care that is needed, seeing that person through to a secure next day, week, month or year is the imperative.

Research shows that devotion often leads to a financial toll for caregivers. Indeed, providing uncompensated care for a parent, sibling or other close relative or friend can be a drain on a bank account.

According to the New York State Office of Aging, one-third of older adults provide uncompensated care to those older than 55. And seven percent of those caregivers are spending 20 hours or more per week doing so, the office’s 2023-27 plan states.

The state’s survey also found roughly one-quarter of these caregivers “felt physically, emotionally or financially burdened” by the role.

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At 43, Schinetria “Netra” Spearman of Warren, Michigan, just north of Detroit, wishes she had more time to relish the accomplishments of her two sons. Antonio, 19, graduated last spring from Horizon Science Academy in Toledo, Ohio – all while navigating the complex challenges of severe sickle cell anemia. Romeo, 12, a sixth-grader, made the East Detroit Tiger Cats football team this fall.

Instead, every day for Spearman is a balancing act between parenting and taking care of her parents. Her parents don’t qualify for more help at home because of income limits set in programs like Medicaid.

“I have always helped my parents,” said Spearman, whose caregiving commitments skyrocketed when her folks moved in with her following her relocation from Toledo for employment at General Motors.

“It’s just gotten worse as we go,” Spearman said. “Actually, I lost my job over it.” She said GM fired her earlier this year, due to a mounting number of absences since 2021 – all related to her parents’ spiraling health complications.

If those complications have spiraled, so, too, has the financial and emotional quagmire in which Spearman now finds herself as a caregiver.

After she lost her job, her car was repossessed because she couldn’t keep up with the payments. Now, going to the grocery requires an Uber ride.

Her mother, Mary Alice Spearman, 72, a former school worker, has dementia. “My mom doesn’t remember to go to the bathroom,” she said. Her father, Johnny Spearman, 77, a retired truck driver, has several debilitating conditions and relies on a walker. In April, a recurring bout of pneumonia landed him in the hospital, where he stayed for nearly four months.

“It’s about 16 hours a day of active care for Mom, and eight to 10 hours a day for my dad.”

Schinetria Spearman, 43

“My parents are two of the most loving individuals I have ever met in my life,” Netra said. “My mom has a smile that will brighten anyone’s day. And my father is so encouraging.

“Before Dad got sick, he was the main caregiver for my mom. Now, I take care of them both,” Spearman said. “It’s about 16 hours a day of active care for Mom, and eight to 10 hours a day for my dad.”

She estimates her mother’s monthly income and assets exceed the Medicaid limit in Michigan by as little as $100. “She can’t have more than $2,700. Because they own their home, Medicaid won’t approve her.”

Spearman is one of 1.2 million unpaid caregivers in Michigan, according to data from the AARP Public Policy Institute in its 2021 landmark survey, “Valuing the Invaluable.” In addition to providing more than $19.5 billion worth of free care annually in Michigan alone, a majority of caregivers juggle work and care, the survey shows. Like Spearman, many are burdened by a barrage of unpaid costs for their loved ones, and lost wages for themselves.

Spearman said she and her parents spend about $1,200 a month in uncovered expenses. A home health agency visits twice a week to help her dad shower, but Medicare is reducing that support, she said. “Now I have to find somebody to come do his second shower. I still have rent to pay. I need to get another car. But I can’t get a car because I don’t have a job.”

Additional costs also include prescription drug copays of hundreds of dollars a month, incontinence underwear for both parents, distilled water for her dad, and his walker, “although Medicare did cover his wheelchair,” Spearman noted.

And then there are meals. “We have to get restaurant food a lot because I am tired,” Spearman said. Getting a good night’s rest is hard. Spearman has given her bedroom to her mom, instead sleeping in the living room with her dad and his noisy CPAP machine.

Like Spearman, 30 percent of all unpaid caregivers in the U.S. belong to the “sandwich generation,” according to a 2023 AARP update, taking care of children and older loved ones, too. “My 12-year-old is growing, he needs new clothes. And, I need to go to Romeo’s football games. I’m his mom,” she said.