The real financial costs of caregiving

Seven years of caring for her ailing mother have left Heather Boldon broke and scared about her own financial future.

Boldon was a Minneapolis paralegal making $65,000 a year in 2010 when her mother, then living in Tomah, Wis., began developing dementia and other health problems. For a while, Boldon regularly made the six-hour round trip to see her, but her mother's condition worsened. When her company announced layoffs, she volunteered.

Since then, Boldon has moved with her mother to Farmington and worked a series of much lower-paying jobs that allow her to look after her mother, now 72. Her current job lets her work part-time from home, but it pays a fraction of her former income and offers no benefits.

"I'm making well below my earning potential, but can't get my earning potential because there are so many demands," said Boldon, who also has a 16-year-old son.

At 49, Boldon's only hope of getting a better job is placing her mother in a memory-care residence. But to cover that cost, her mother would need help from Medical Assistance, Minnesota's Medicaid program — and recipients are required to "spend down" their assets to qualify. Boldon would probably be forced to sell her mother's home — it's financed with a reverse mortgage, which requires the owner to live there (see story, page 40).

She feels stuck, and the future looks worse. "The biggest thing going forward is not only being homeless, it's my retirement, it's my nest egg," Boldon said. Having long since spent her 401(k), she has no savings. She said she lives paycheck to paycheck.

Boldon is among millions of Americans who've sacrificed income and security, even placed themselves in future financial jeopardy, to provide unpaid care for older or ailing loved ones.

More than 40 million people nationally are family care­givers (sometimes called "elder care providers"), of whom 25 million also have jobs. They help relatives or friends with activities such as bathing and dressing, preparing meals, dispensing medication and performing other medical tasks, managing finances and navigating the health care system. Minnesota is home to more than 670,000 family caregivers, according to the state AARP, providing unpaid care valued at $8.2 billion annually.

"Scan the landscape and chances are you know a lot of people who are caregiving," said Maureen Kenney, director of aging services at the Amherst H. Wilder Foundation, a health and human services nonprofit in St. Paul. "People think of caregiving as a [paid] personal-care attendant or nursing assistant. Caregiving is more complex, more subtle. It can happen in a crisis or it can happen gradually."

In addition to emotional challenges — stress, exhaustion, grief — these folks also shoulder potentially crushing financial burdens. Parents of young children have had little success in changing policies to help them balance work and family (the United States is one of the few countries that do not mandate paid parental leave). But those who care for people at the other end of their lifespan receive so little attention that they're sometimes called "the shadow workforce," according to a 2016 Department of Labor report.

"Our workplace and public policies have not evolved to meet the needs of the growing army of unpaid, mostly family, caregivers who also work outside the home," the report says. "Some are forced to cut back on the hours they work, leave the workforce, or slip into poverty."

More than half of caregivers have to adjust their work schedules, often cutting back on paid hours during their prime earning years. Advocates encourage employers to offer flexible hours or telecommuting opportunities so caregivers can keep their jobs while attending to loved ones.

Meanwhile, caregivers often spend money out of their own pockets on expenses such as rent or mortgages, home modifications and medical treatment. These costs average $7,000 a year, according to a 2016 AARP report; $10,700 if the care recipient has dementia.

Anne Frenchick of Roseville had to curtail work hours to help her ailing parents between 2004 and 2009. She estimates she lost $82,000 in wages and benefits during those years. At 58, she and her husband left the workforce altogether. Now 66, Frenchick feels financially secure — she and her husband are good savers and have no children — but "there's been a cost to us that we won't recoup."

For people whose incomes were low in the first place, caregiving can be devastating. When her mother had a stroke last August and needed round-the-clock care, Jasmine Davis gave up a full-time job at a Holiday station and moved into her mother's north Minneapolis home. Her mother died in December. Davis says she was evicted from the house in February (she'd been paying the rent, she said, but the landlord wanted to sell it). So she and her four children, ages 2 to 8, moved into a homeless shelter, coping with both poverty and grief.

"I wouldn't wish this on anyone, but I also don't regret the decision I made," said Davis, 28. She was glad to have been there for her mother. "She was my best friend — I was her firstborn, her only girl."

Most caregivers are female, and are particularly hard-hit because their average income and lifetime earnings are lower than men's in the first place, leaving women almost twice as likely to age in poverty. More women report being the sole caregiver, and are less likely to hire help.

"Men are stepping up, but the kind of care they do is different," said Phyllis Moen, a University of Minnesota sociologist who studies work, family and gender. "If a woman is caring for a man, she often will leave the workforce. If a man does the care, he buys the care and does financial stuff. The hands-on, daily care is often done by his wife."

But even paid help may become increasingly hard to find. Home care is among the country's fastest-growing occupations. But the jobs tend to be low-paying, with scarce benefits and erratic hours, and labor supply is expected to fall far short of demand.

All of this is on track to get worse as the boomer generation ages. By 2050, the population over 65 is projected to nearly double, to 88 million — 28 percent of all adults.

"There won't be enough people to provide enough care," said Beth Wiggins, director of Caregiver Support and Aging Services for FamilyMeans, a Stillwater-based nonprofit. "I hear a lot of people talking about it now as a public health concern, because the numbers, they don't work."

Family caregivers do have some options that might help, said Laura J. Zdychnec, a Minneapolis elder law attorney. Although individual family situations include too many variables to make sweeping recommendations, Zdychnec stresses the importance of consulting a professional as soon as possible — definitely when the need for caregiving arises, better yet when it's still on the horizon.

"At a minimum, the sooner you plan, the more options that are available to you," she said. "There's more flexibility and a lot more opportunity to control the process."

But windows start to close. For example, a parent developing memory issues can grant a family member power of attorney. But that's not possible in later stages of dementia.

Even just having a professional explain the rules and how they apply to their circumstances can help people sleep better, she said.

"The whole landscape is a landmine for people trying to navigate it on their own, and it's horrific," Zdychnec said. Overall, the problem "is huge. Probably the extent of it is under­reported, because many people are out there suffering in silence."

This article was written with support from the Journalists in Aging Fellowships, a program of New America Media and the Gerontological Society of America, sponsored by the Retirement Research Foundation.

Katy Read • 612-673-4583