How family caregivers navigate extra costs of tending to loved ones

This story was produced through theNew York & Michigan Solutions Journalism Collaborative, a partnership of news organizations and universities dedicated to rigorous and compelling reporting about successful responses to social problems. The reporting is supported by the Solutions Journalism Network.

The collaborative’s series,Invisible Army: Caregivers on the Front Lines, focuses on potential solutions to challenges facing caregivers of older adults.

When a working-age person cares for a loved one facing dementia or 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 one’s 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 7% 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.“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 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.

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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% 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.Jennifer Register of Rochester provides care for her mother.“She does receive, you know, SNAP [food] assistance since she's not working,” Register said. “And that's great because at least that covers food, but you know, all the other household items. I do sometimes assist with paying for that.”But other expenses are tied to things important to the person needing care, Register said.“She's a diva and she's used to, in her early days, doing other things that people love to do. We don't think a second about it, but when you're looking at needs versus wants and trying to cut costs, you have to start questioning like, ‘Oh, do you really need your nails (done)?”Added Register: “And sometimes, she gets a little disappointed when I have to explain not this month or not this week, but next week or, whenever that time will be.”

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Sandy Schencke is Eldersource care manager for the program jointly run by Catholic Family Center and Lifespan of Greater Rochester. Eldersource provides guidance for care situations including housing, transportation, chares, personal care and respite.Schencke said benefits eligibility questions can leave a caregiver filling gaps with their own funds.“There's always those complications with yes, they have money,” Schencke said. “But it's not enough to pay for someone's whole life.”According to a 2021 study commissioned by AARP Research more than three-quarters of family caregivers incur some costs, with the average out-of-pocket expense at more than $7,200 a year.When the person being cared for has dementia, that out-of-pocket number approaches $9,000 per year.One-half of caregivers fund household-related expenses for the person needing care, whether it be rent or mortgage, modifications to a home or medical costs (such as medical equipment).

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“About half or nearly half — 47% — of caregivers have experienced some sort of financial setback as a result of their caregiving,” said Jack Rosenberry, former data coordinator for the New York & Michigan Solutions Journalism Collaborative. “These include things such as dipping into their personal savings or reducing how much they can save for their own retirement.”In addition, providing care and working a job can come into conflict, he said.“More than half of working caregivers — about 53% — have experienced some sort of work-related impact. The most common of these are taking time off, either paid time or unpaid time, to spend time with their loved ones for caregiving.”Taking care of older or disabled relatives is "essentially a full-time job," said Thom Dellwo, financial counselor for Syracuse Financial Empowerment Center. "They do their day job and then they come home and do another job."Some caregivers work full-time jobs while others quit work altogether to best take care of their loved one.One-half the respondents to a 2022 solutions journalism collaborative survey said they had out-of-pocket costs tied to providing care, including things like transportation. The survey spoke to 1,000 individuals in Michigan and Western New York.For family caregivers younger than 50, that burden falls disproportionately on caregivers of color, who are more likely to be providing care at or before mid-life, the survey found.“This work is invisible,” Dellwo said. “It’s not paid often and nobody’s giving you a statue for the work you do day to day.”

Between 25% and 30% of Dellwo’s clients take on caregiving for a family member, Dellwo said, and many of the individuals Dellwo works with are low-income and qualify for an income-based health insurance program, such as Medicare or Medicaid.For those who don’t, Dellwo suggests other resources provided by the programs, including Social Security Disability Insurance and Supplemental Security Income, which Dellwo said help fund medical equipment that residents can keep in their homes.But even as younger individuals caring for their loved ones becomes more common, Dellwo said, available resources are scarce — especially for day-to-day in-home care — and the existing funding for these types of programs does not meet the need.“There’s not a lot out there to be honest,” Dellwo said. “It’s very piecemeal.”

'It was simply what must be done'

Royale Theus reflected as he pored over beloved family photos.

“I never thought of myself as a ‘caregiver,’” Theus said. “She was just my mom who I took care of.”

Theus, now 42, cared for his mother Barbara Theus until she died last October at age 73 from complications of a traumatic brain injury, caused by a head-on collision when she was 57. “My mom was still well into her career as a hospital and private duty homecare nurse. Life kind of stopped after that,” Theus said, recalling the sure, albeit unsteady march toward dementia that took over his mother’s life, and his own.

“She was the one who had always taken care of us,” he said. “I was 25 and didn’t know what a caregiver was. It was simply what must be done for a family member you love.”

Theus recently had begun a rewarding new job at Michigan AIDS Coalition, now part of Matrix Human Services in Detroit, where today he runs adult service programs. His younger brother, Tim Johnson, had just started his first year of college, he recalled.

But their mom’s health continued to decline. “It felt like an eternity – almost a year – for her disability payments to be approved” after her employer-based health insurance ran out, he said. In the meantime, she needed all her preventive care – her annual mammogram as well as dental and vision services.

“By 2007, we were paying for many of her medical treatments out of pocket.” Theus said. He estimated these costs amounted to more than $3,000 a year. “Thankfully, I had a friend who was a podiatrist,” he added.

“I would pay someone to watch her while I was at work. That started out at $10 an hour, but the cost doubled in five years to $20 an hour.”

Brother Tim and their mom already shared an apartment. “In the midst of many out-of-pocket expenses, I still needed to save enough to build up my credit so that I could purchase a home for my family,” Theus said. “We moved into a rental house in 2008. Finally, in 2009 I was able to get a mortgage, and bought our home in Redford Township,” a suburb of Detroit.

At the same time, Theus was outlaying at least $3,000 to $3,500 annually for his mom’s care. “Mom hadn’t qualified for Medicaid due to her prior income,” he said.

For six years, Theus also took care of his father, R.B. Theus of Warren, who died in 2016 at age 95 after a long bout with Alzheimer’s disease. “Dad was a Ford Motor retiree with excellent health insurance, but he still had unmet needs. To replace his bottom set of dentures alone cost us $2,200,” Theus said.

Theus’ leased car paid the price, too, with expensive wear and tear as the miles mounted between households in two cities, including numerous doctor visits and hospital trips, Theus noted.

“My life was all about caregiving,” he said. For each of his parents, Theus provided hygiene, haircuts, toileting, feeding and medication.

Meanwhile, stress was taking its inevitable toll. Theus knew he needed mental health support, but “I just didn’t have the time, or the additional money to pay someone to come in while I did that.

“Counseling would have felt like a luxury,” he said. “I became accustomed to healing on the go.”

Between both parents, Theus estimated he spent some $16,000 to $18,000 out of pocket for their care.

A sea change came in 2009 when Barbara Theus qualified for Medicaid thus could join the Program of All-Inclusive Care for the Elderly (PACE) of Southeast Michigan, where she received comprehensive wraparound services and daily socialization five days a week at the Southfield Center.

Thanks to PACE, Theus estimated his out-of-pocket costs for his mom decreased by 80 percent.

Yet for all the challenges, caregiving has ample rewards, Theus said: “I learned patience and unconditional love. And I was able to hear from my father how much he appreciated and loved me.”

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Jen Rivera of Rochester has provided care for her father, noting that “family is something that he taught us from a very young age is number one, you do what you can for your family.”

Her father receives workers compensation and a pension and therefore does not qualify for some benefits, including some that might support a paid caregiver.

“A lot of people have asked, ‘Well, why don't you get paid to take care of your dad?’" she said. "Those programs, unfortunately, we don't qualify for just based on his two incomes, but we do have to use the money that he is given to be able to pay for someone to take care of him while I am at work or while I do have class at night time, or if I'm not able to be home."

Rivera’s additional caregiving-related expenses include paying for a lawyer to get power of attorney status for her father’s financial matters. And that’s on top of myriad other tugs at her personal finances, including contributing a few thousand per year to her son’s college education.“That means my budget is going to be even tighter than what I have it to be right now,” Rivera said. Because her husband has disabilities, hers is a one-income household — “That’s the only one that I can essentially depend on, to be able to have, extra funds to spend or do anything with.”Ironically, Spearman, the Michigan caregiver, helped her older son get a job at GM, so he’ll be moving north from Toledo soon. It will be good to have him closer, but her days still will be long.

“When I need time, I go into the bathroom and sit,” Spearman said. “I have a lot of bad days. It’s stressful. Caregiving is not for the weak.”In fact, Spearman delayed her own medically necessary surgery for more than three years due to the risky combination of caregiving and COVID-19. But Spearman has hope, despite the nonstop stressors and challenges. The United Auto Workers union is negotiating for her job. Once her parents’ Toledo home sells, she believes her mom will qualify for Medicaid, opening avenues for respite and help.In the meantime, “my friends give me emotional support, especially a lady I work with at GM. I call her Auntie,” Spearman said. “And, I try to put my parents’ money where it should go. I prioritize their bills, when I also need to pay my bills."“I am laying down in cement,” she said. “Only my head isn’t covered. If that happens, I don’t know what I will do.”

Editor's note: This story has been updated to correct the last name of Royale Theus' younger brother, Tim. Tim's last name is Johnson.

This article originally appeared on Rochester Democrat and Chronicle: Family caregivers: How steep financial burdens drain their resources