Caregivers in the Family

Rosanita Ratcliff is a born traveler. She left Ann Arbor to go to college in Arizona, studied abroad, lived on both coasts, and—this she shares with a merry laugh—even took impulsive trips just because the airfare was cheap.

These days, though, she’s back living with her parents in the house she grew up in; her last vacation was nearly five years ago. Her father Bill, eighty-three, is a U-M grad, army veteran, and retired middle school guidance counselor. Her mother, Betty, is seventy-six, a retired social worker, and a breast cancer survivor.

“My dad was her caregiver for that,” Rosanita says, smiling fondly. “He was amazing, right down to every day telling her she was beautiful.”

But over the years, he developed health problems of his own—with breathing, mobility, and eventually his vision. After he was hospitalized with pneumonia seven years ago, Betty hired a professional caregiver for him. Rosanita flew back every few months to check in.

Travel got more complicated during the pandemic. Undaunted, Rosanita and her brother decided to road-trip to Ann Arbor. But when they called Betty to confirm the details, they noticed that she sounded off. When they arrived, their suspicions were confirmed; Betty ended up in the emergency room. Rosanita was shocked to learn that the caregiver had noticed Betty’s decline but didn’t know how to contact Rosanita or her brother.

A few things became clear to her then: The pandemic wasn’t waning. The caregiver couldn’t fill all the gaps. Her parents weren’t giving her the full story. Visiting every few months wasn’t going to cut it.

Rosanita called her boyfriend and told him, “I can’t come back.”

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According to the U.S. Census, Washtenaw County has 58,000 unpaid caregivers like Rosanita who look after elderly and disabled adults. Across Michigan, the AARP estimates that 1.73 million family caregivers provide 1.1 billion hours of care every year.

“Family caregivers basically serve as an unpaid, invisible workforce in Michigan’s health care system,” says Lisa Dedden Cooper, manager of advocacy for AARP Michigan. Research by the senior advocacy group found that 78 percent of them incur out-of-pocket expenses averaging $7,242 per year.

And the true cost transcends a mere dollar amount.

As a caregiver, life becomes a crash course in navigating community resources and handling disorders of aging. It’s a struggle to find the balance between helping a loved one and respecting their
autonomy. It changes the nature of relationships—from being a loved one to acting as a nurse or social worker.

“Oftentimes, caregivers are experiencing high stress as well as caregiver burnout,” says Julie Lowenthal, coordinator of volunteer and caregiver services with AgeWays (formerly the Area Agency on Aging 1-B). “They’re working their own jobs, [caring for] their own families, and they’re also caregiving. So they really have no time whatsoever to focus on self-care.”

Lately there’s been some movement toward recognition of this invisible workforce. In January, governor Gretchen Whitmer proposed a $5,000 tax credit for family caregivers.

“I know how tiring caregiving can be, especially when you’re juggling a career and kids of your own,” Whitmer said in her February State of the State address. “When I was sandwiched between my newborn daughter and my mom who was dying from brain cancer, I was pushed to my limit despite having resources and help.”

But the numbers are daunting. The AARP estimates the value of unpaid care in Michigan at $19.6 billion a year, yet Whitmer’s fiscal year 2025 executive budget recommendation calls for just $37.5 million in funding. “It would only go so far toward providing financial relief for caregivers,” Cooper acknowledges. If even half of Michigan’s estimated 1.73 million caregivers were to claim the full credit, it would cost more than $4 billion a year—and reduce the state’s income tax revenue by a third.

At the federal level, in January a bipartisan group of senators reintroduced a bill that would provide a federal tax credit of up to $5,000 for qualified caregivers. It stalled after its initial introduction in 2021, but the AARP is focused on mobilizing caregivers to put pressure on politicians.

“Family caregivers are the new soccer moms, in terms of being an influential voting bloc,” says Cooper. “Thirty-eight percent of voters are caregivers, currently. And when you ask if anybody has ever been in the past or expects to be in the future, it’s almost double.”

AARP’s advocacy efforts are focused on securing tax relief for unpaid caregivers at the state and federal levels, expanding Caregiver Resource Centers through the Area Agency on Aging network (of which AgeWays is a member), and increasing access to home- and community-based services funded by Medicaid. Cooper encourages caregivers to visit aarpmi.org/care and support the cause.

“You’re powerful,” Cooper says. “Other people are going through the same things, and you don’t have to do it alone.”

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“John Kalsta” and his wife have shared their home in the northwest corner of Ann Arbor for forty years. And just before the pandemic, they made the decision to share it with Kalsta’s younger sister “Margaret” and her best friend “Shea.” (He asked that everyone’s names be changed to protect their privacy.) Both women have cognitive impairments; Kalsta has been their primary caregiver since his mother died in 2003.

He describes caregiving as two-sided: “the day-to-day boring side, and the
I-never-know-what’s-going-to-show-up-in-a-given-day side.” The boring side includes cooking, laundry, cleaning, shopping, and monitoring Margaret and Shea’s bodily functions to assess their well-being. Then there’s the unpredictable side. When the two get upset—whether it’s by a game of Yahtzee or a memory from sixty years ago—Kalsta is there to, in his words, “play psychology.”

“Fortunately, I have a great background in psychology—oh, no, actually, I don’t know anything,” he jokes. “So I kind of make it up as I go along.”

When I ask Kalsta about the challenges of caregiving, he gives a wry smile and asks, “How much time do you have?”

After a pause, he continues, speaking thoughtfully. “I talk to people who are taking care of loved ones who have Alzheimer’s, or they have some awful, debilitating, slow, painful decline. And I feel awful for them. Just awful. It’s got to be a terrible thing to go through. In my situation, there is no decline, per se … The biggest challenge is, it never ends. It never stops. Every day. There’s nothing I can do to make it better.”

And for he and his wife, there’s the loss of personal freedom—from intimate meals together to trips to Chicago to visit their grandchildren.

“We were never going to do fancy traveling. We’re neurotic gardeners, so seven months of the year, I don’t want to go anywhere,” Kalsta says. “[But] whatever spontaneity might have been there, isn’t.”

Rosanita’s routine looks similar to Kalsta’s: laundry, cooking, errands, managing medication and physical therapy, and providing companionship. Though she and her mother both have their own health issues, they tag-team many of these duties; they’d like to have help, but there’s a shortage of paid caregivers. And unlike Kalsta, Rosanita isn’t retired—she quit her job to focus on caregiving. But since she’s immediate family, her parents’ long-term care insurance won’t pay her, and since her parents aren’t below the poverty line, neither will Medicaid. As a result, she isn’t contributing anything to her own Social Security account.

“That’s a hard pill to swallow, seeing that my Social Security for my retirement goes down every year because I give free care to my parents,” she says. But that’s not the hardest part of caregiving; nor is it giving up the thrill and fulfillment of travel.

“It’s emotionally exhausting sometimes,” she admits. “It’s hard to see them decline and be confronted with their mortality and the idea of losing them, whether it’s through death or through memory loss. That can be really difficult.” She pauses reflectively. “I live in the moment a bit more now than I did before.”

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Theoretically, the key to managing the stress of caregiving is simple: Take a break. But with in-home care costing between $30 to $40 per hour (when it’s available), and in-facility respite care running between $240 to $440 per day, it’s more difficult in practice.

That’s why in October, AgeWays launched its Care Voucher Program, which provides a one-time payment of $575 to spend on respite care. There’s no financial criteria, and priority is first come, first served. As of March, ninety-six families have received vouchers, and Lowenthal says they’re attempting to secure more funding to continue the program. One of the voucher recipients cares for her husband, who has frontal lobe dementia.

“It enabled her to be able to go grocery shopping, so she can de-stress a little bit,” says Lowenthal. “It enables her to leave the home for a few hours to visit the bank or even just get a haircut… and know that her husband, who wanders, is safe at the same time.”

AgeWays also streamlines the at-times mind-boggling array of local, state, and national caregiver resources. It offers a resource guide, coaching, a six-week Zoom course called Powerful Tools for Caregiving, and Trualta, an online platform that features concise video clips answering common caregiving questions. And it serves as a gateway for Michigan Medicaid’s MI Choice Waiver Program, which covers nursing care services—enabling recipients to stay in their homes and perhaps easing the burden for caregivers. According to Cooper, 89 percent of Michigan voters say they don’t want to live in a nursing home.

“On average, Medicaid dollars can support nearly three older adults or people with disabilities in home- and community-based services for every one person that is in a nursing home,” she continues. Keeping people out of nursing homes “not only responds to what people want but makes fiscal sense for the state.”

Another program making the most of Medicaid and Medicare dollars is Huron Valley PACE (Program of All-Inclusive Care for the Elderly.) One of 155 such programs nationwide, it provides a comprehensive array of medical care, therapy, and socialization opportunities in its cozy, bright, and bustling day center on Ellsworth Rd. PACE also offers respite and chore services to lighten caregivers’ loads. Its services are free to Medicaid recipients who are eligible for nursing home care, even if they’re also on Medicare. 

“I like to describe PACE as a nursing home without walls,” says marketing director Lindsay Mann-Shanahan. “All of the services someone would get in a nursing home, but they’re in their own home.”

Catholic Social Services of Washtenaw County (CSS) also helps caregivers navigate resources and access respite care, regardless of faith background. Its services include a chore and home maintenance program and a Volunteer Caregiver Respite Program, which provides up to four hours per week of free socialization for care recipients.

“The volunteers we have are just the most dedicated people I’ve ever met. They have great big hearts,” effuses Jeannette Matthews, manager of caregiver services for CSS. “We’ve had one gal who was volunteering with someone for fourteen years … A definite relationship builds between them.”

Still another resource for respite care is Jewish Family Services’ CARES (Caregiver Assessment Respite Education and Support). The program pays for up to forty-eight hours of caregiver respite in a ninety-day period, also irrespective of faith.

“It gives them some freedom,” says CARES manager Roberta Hirshon. “If somebody comes in and you know that your loved one is being taken care of, you can go out for a walk with a friend, or go have lunch, or go to the grocery store, or have your hair cut, or just read a book, not even going out of the house.”

CARES also offers educational programs—covering everything from medical and legal issues of aging to navigating Medicare and Medicaid—as well as counseling tailored to caregivers and virtual support groups. Rosanita and Kalsta are both participants.

“It legitimized an awful lot for me,” Kalsta reflects. “‘Why am I so ungrateful? Why am I so impatient? Why do I get angry? What’s wrong with me?’ And the answer after talking to people for years is, ‘Congratulations, you’re human.’”

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Beyond the burnout, the financial strain, and the fight for recognition, caregiving also holds significant rewards. Rosanita Ratcliff treasures both the time she spends with her parents and the support of her boyfriend. When she called in 2020 and told him she couldn’t come back, he moved to Michigan.

“The man never lived anywhere cold before; he grew up in California,” she laughs. “In a way, I think it did help with our relationship too … because of knowing that he was not just willing to do it, but did it. I know that people, they’ve broken up in situations like this. And four years later after the move, we’re still here.”

As for John Kalsta, his reward is honoring a promise that he made to his mother in her final weeks: to take care of Margaret.

“I’d like to say it was on her deathbed and it’s very dramatic; it wasn’t,” Kalsta says, smiling. “But I’m fulfilling her wish.” And so, every night, he asks himself: Are Margaret and Shea safe? Has he had a positive impact on their lives?

“And the answer to that is obvious every single day: Yes,” Kalsta says. He pauses, then throws up his hands. “Well, what the hell else do we want to do with our lives than have a positive impact on somebody else?”