Rosa E. Hunter sees her mother as a future version of herself. They even share the same name.
As 94-year-old Rosa L. Hunter suffers from dementia, she relies on her youngest daughter for around-the-clock care. And while 68-year-old Rosa wouldn't have it any other way, she fears reaching her mother's age and imposing the same caregiver role on her son.
"My mom struggles and wakes me up constantly in the middle of the night with pains in her legs from neuropathy," the daughter said. "I don’t want to have dementia, and I know my lack of sleep from taking care of her at night is progressing that."
Hunter is one of an increasing number of people around Michigan and the United States who find themselves taking care of a loved one, according to a report from the National Alliance for Caregiving and AARP. In Metro Detroit, a new survey shows that oftentimes, for caregivers, those who have the least to give find themselves giving the most.
In the survey from the Glengariff Group, the people in Metro Detroit most likely to be caregivers are women and older than 50. The average caregiver gets help from others but doesn't use paid caregivers, instead largely relying on friends and family for support. And more than a third — 180 of the survey's 500 Metro Detroit respondents — report having no other help.
The survey was conducted as part of an effort sponsored by the New York & Michigan Solutions Journalism Collaborative, of which The Detroit News is a member. The survey, conducted from July 25- Aug. 3, talked to 1,000 caregivers, 500 from Wayne, Oakland and Macomb counties in Metro Detroit and the other 500 from three counties in western New York about their unique situations and struggles.
The results show that in Metro Detroit, caregivers are disproportionately people of color and often poorer than their county's median household income. Only about a third of the combined population of Wayne, Oakland and Macomb counties is not White, but people of color made up 43% of survey respondents.
Nearly half say caregiving has taken a physical or emotional toll (or both). Most caregivers are looking after relatives, including a significant number of people caring for parents, the survey found, but some are also caring for neighbors, friends, even ex-spouses.
And for many, the work never stops. While about 62% of survey respondents in Metro Detroit reported they spent 10 hours or less caregiving a week, more than a quarter of people surveyed said they spent at least 21 hours per week giving care — an additional unpaid job on top of what they already do to keep their households afloat.
"You absolutely love your loved ones, but it is a lot of work, giving care," said Dana Lasenby, executive director and CEO of Oakland Community Health Network. It's one of many organizations around the state that helps connect caregivers with resources, including respite care to give those working full-time as caregivers a break.
"The support that many caregivers receive is low, and because they're working in the home, the caregivers often become alienated," Lasenby said. "The amount of work that goes into it ... you're never off-duty. Hopefully, you're able to sleep when you get a break, but for a lot of caregivers, they struggle with never being off and finding someone to help when they need a break."
'With them day in and day out'
Hunter, 68, initially moved her mother into her Detroit home but soon realized their area wasn't the safe environment for them to enjoy daily 40-minute walks together.
"We'd hear loud arguing, speeding and dogs barking," she said. "She moves with a walker and me by her side. We needed somewhere to continue a positive environment and encourage exercise."
That's when the pair moved half their stuff into a small home in a quiet Harper Woods neighborhood. While living there, Hunter teaches yoga classes at Wayne County Community College and has helped her mom get into better shape. In the last year, Hunter has lost 25 pounds, her mother has lost 50 pounds and she's weaned her off 15 medications, she said proudly.
"I’ve spent the last six years teaching yoga, and that’s helped me manage my patience and handle my mother’s anxiety," Hunter said.
Hunter said her mother started showing signs of dementia in her late 70s, and at the time, no one in the family knew how to manage it. So she, like so many others, became a caregiver. It was a choice she made despite the fact that, like the majority of caregivers surveyed in Wayne County, she's older than 50 herself. In Wayne, where she lives, more than a quarter of all caregivers are 65 and older.
In many ways, Hunter is representative of a typical Wayne County caregiver — African Americans in the survey made up the largest racial or ethnic group of caregivers in Wayne County at 44%, and women made up more than 65% of caregivers in the county.
"It's a difference when you're with them day in and day out. You really don't know the shoes caregivers walk in unless you're with that person a whole month and then would understand the hardship it is," Hunter said. "I've always been patient, but it's not just about providing care. Every caregiver should learn about their loved one's disease and learn how to take care of them."
Similarly, Doria Rainey moved her mother into her Canton Township home about four years ago and noticed in the last year that her mother was showing signs of dementia.
Rainey said her mother, Mariea Claxton, 78, would wake up and cook the family of seven the same breakfast every morning: sausage, eggs, grits and toast.
“Once we started noticing she wouldn’t change, I told her she didn’t have to cook anymore,” said Rainey, 58. “She would go to the garage back and forth but wouldn’t come back with anything.”
Claxton's memory began to decline rapidly. Rainey said it turned her world upside down.
"I had to adjust my life around her, and it was mostly on me because I’m the primary caregiver,” said Rainey, who now works from home running a small business doing websites and graphics. “It’s very taxing. At this point, my mom doesn’t require a lot. She can talk but doesn’t verbalize a lot. She doesn’t request anything, and you don’t know what she needs or wants because she’s not communicating.”
The family received a $2,500 grant from Team Suzy, a nonprofit focused on financial and emotional support for those suffering from dementia and Alzheimer's. The money is used for respite care and items, such as bed liners and diapers, are purchased through the nonprofit. Rainey said through her research, she found local fire departments and community centers that have loan closets with equipment, including wheelchairs and walkers.
Like Rainey, 52% of caregivers in Metro Detroit have had to pay out of pocket for caregiving materials. Groups like Team Suzy are critical to ease the burden, but they don't always cover everything.
The survey showed that regardless of income level, more than half of all people at every income level in Metro Detroit reported having out-of-pocket costs, including 56% of people with a household income of more than $100,000 a year and 60% of those with an income of less than $20,000 annually.
“One of the things we weren’t able to get was a mattress that alternates pressure to prevent her bed ulcers, and insurance won’t cover the $700,” said Rainey, who is also searching for an in-home caregiving training course. “The family dynamics play a lot in this. Other family members are important to step in and help or close friends. I can’t just up and go; I have to plan everything now. Having people to say 'I understand what you’re going through' truly means a lot even if they can’t help.”
Caregiving can be a costly endeavor. AARP estimates that average caregivers in the country spent more than $7,000 in 2021 on various out-of-pocket costs. That’s in addition to the billions of unpaid hours they spend giving care each year.
In 2019, AARP estimated that unpaid Michigan caregivers do a combined $15.1 billion worth of work every year, the result of 1.1 billion hours of caring split between 1.32 million people across the state. In New York, that unpaid work is valued at $31 billion, the result of 2.1 billion hours by 2.5 million people.
Across the board, caregivers in both states are facing the same problems. In most categories, survey results are nearly identical. More than half are female, and the majority are caring either for a parent, a parent-in-law or a friend.
Many of those caregivers go unsupported. While the majority of caregivers rely on someone else to help them — family and friends, paid caregivers, or both — more than a quarter of all respondents in the survey say they do it alone. About a third of those caregiving alone do it for 21 hours or more every week, the equivalent of an additional part-time job or greater.
"It hits hardest to those who can stand the fewest hits," Lasenby said. "A lot of time, people are being cared for by other vulnerable people with limited resources and support."
But the two regions differ from each other as well. In New York, a higher proportion of respondents reported graduating from college. In Metro Detroit, respondents were disproportionately people of color.
"It's really critical that we continue to recognize that caregivers are widely diverse," said Rita Choula, director of caregiving at the AARP Public Policy Institute. "Racially and ethnically, geographically, from their socioeconomic background, they're diverse. The result is that not every solution is for every caregiver."
For some, nursing homes were 'never an option'
In 2016, Nakia Gaither was a personal trainer in California, packing to start a six-month retreat in Brazil when she got the call that her father's liver cancer came back. That’s when Gaither became his caregiver and was helping full-time toward the end of his life. In June 2020, she stayed to take care of her mother, Dorothy Gaither, 72, who is on dialysis, has COPD, a degenerative disc disease in her back and utilizes a walker.
Gaither and her mother live in a small Grosse Ile apartment with their dog, Cisco, and she said it’s been more than a year since she’s been back to the gym.
That's not uncommon. Many caregivers, particularly ones working many hours caring, reported difficulties finding time for themselves — more than 13% of surveyed caregivers in Metro Detroit said they just outright have not taken steps to maintain their health since becoming caregivers.
Many, like Gaither, report trying to take regular walks and find time for self-care and doctor visits. But it isn't always easy, particularly for those who are spending much of every day just caring for a loved one.
"The plan was to move back out of state because I hate Michigan, but no one expected COVID to happen, and I couldn’t just leave my mom,” said Gaither, 48. “I sit with her during her daily dialysis and she has her set of doctors she’s had for years and I trust them. It’s a struggle as much as I want to leave, I’m not happy but I’m comfortable. You just have to accept it or be miserable.”
She would never consider putting her mother in a nursing home because of past experiences. In summer 2020, her mother was in a nursing home rehab after they contracted COVID-19. Gaither said her mother wasn’t getting proper treatment, was served cold soup and had a serious fall after she was unassisted at the facility.
“They weren’t even focused on her; they just let her stay there. They kept trying to feed her stuff she was allergic to and it got to the point I was constantly DoorDashing food for her,” Gaither said. “My mom can walk with a walker so she doesn’t have to be anywhere but with me because of the neglect.”
The pair does daily exercise to keep Dorothy mobile. Gaither cooks her mother's food, sorts and administers medication, cleans the home, drives to appointments and continues to be her mother’s best friend.
“I have to make her walk because I can’t let her be fully incapacitated. I can’t pick her up and put her in a wheelchair so she’s got to continue,” Gaither said. “My mom is a walking miracle.”
Gaither bought a car in August, and before that, her main struggle was finding alternative transportation to dialysis treatments and now, it’s a challenge to pay for anesthetics that insurance won’t cover, she said.
“Her insurance apparently pays for only so many rides. Sometimes I requested Lyft because the transportation would be late or just wouldn’t show up,” she said. “They’re not paying for her necessary dialysis or the anesthetics during her treatments. She’s in Senior Alliance with the Medicaid Labor Choice Program, which pays $296 a week, which is her supplemental income. But what am I supposed to do? I have to take care of her, our food, our phone bill.”
Caregiving solutions around the country
Some help for caregivers is coming, experts say, although progress can be slow. At the national level, the RAISE Family Caregivers Act, which became law in 2018, has been designed to develop a nationwide strategy on how government entities can better support family caregivers. It created a council that recommended last year that caregivers should have better protections in the workplace and increased access to services. There also should be better data collection on who is giving care, it said.
Many states are also slowly working to address the unique problems caregivers face in their day-to-day lives, Choula said. The most proven ways to support caregivers are often the most empathetic: Acknowledging the unique ways caregivers need support, connecting them directly with essential resources both for themselves and for the people they're caring for, and even just recognizing the work they're doing as what it is.
AARP, in collaboration with the SCAN Foundation and the Commonwealth Fund, puts out a “Long-Term Services and Support Scorecard,” one of the most comprehensive looks at how different policies across the United States impact caregivers as well as those being cared for. The scorecard ranks states overall and in five key areas: affordability and access, choice of setting and provider, quality of life and care, support for family caregivers, and effective transitions between home and health care systems, including nursing homes.
New York ranks 11th in the country, putting it in the top quartile of all states, according to the most recent scorecard, which came out in 2020. Michigan, comparatively, is tied for 30th, a place it shares with Missouri.
The top-ranked states — in 2020, Minnesota, Washington and Wisconsin led the country — stand out for the way they holistically support those involved in the caregiving process.
In Washington state, for example, the state Department of Social and Health Services starts by reframing the idea of what caregiving is. That work involves putting up signs in doctors' offices and playing previews at movie theaters that call out specific caregiving actions as they are.
“They say things like, ‘You call it bringing Mom a few groceries. We call it caregiving,’” said Bea Rector, assistant secretary of Washington’s Aging and Long-Term Support Administration. The idea was borrowed from an effort undertaken in Minnesota that was similarly successful. “They’ll say, ‘You call it helping Dad with medications. We call it caregiving.’ That’s helped normalize what so many people are doing.”
Putting caregiving into a different context has helped more people realize they might be eligible for additional services, Rector said. Information on those services is available in a variety of formats and languages, not only making it accessible to as many people as possible but also helping to destigmatize what it looks like to ask for help.
Then, when a person does start seeking services, Washington caseworkers sit down with caregivers for an assessment. That meeting does not serve to analyze their skills but rather the needs of both the person getting care and the person giving it. The results serve as the backbone of a strategy for supporting everyone involved, including connecting people directly with state-level services and helping them to work out what their insurance would likely cover.
“It’s been really powerful. We’ve heard from caregivers, ‘Oh my gosh, nobody’s ever asked me how I’m doing before. All I do is answer questions about my loved ones and how they’re doing,’” Rector said. “Even just the recognition that people are doing important work, they’re not alone and that we care about them is very powerful for their mental health and their sense of worth.”
It takes time, but it’s a solution that lets caregivers know they aren’t alone. States like Washington and Minnesota rank so highly in part because they have worked to maximize resources for caregivers by partnering with federal programs, including using Medicaid dollars to expand programs.
It can be expensive, but Rector said that at least in Washington those comprehensive efforts have proven to be cost-effective.
"You can serve two people at home in paid personal care for the same as one person in a nursing home," she said. "You can serve four people in an unpaid family caregiver program."
Some respite programs and other services are available in Michigan, Lasenby said, but people often don't know where to look for them. Helping connect the caregivers with local resources can make a difference, as can just finding ways to offer a person a break from their duties as a caregiver.
"It's more than just saying you need to take care of yourself," she said. "Although a caregiver appears tireless, they need breaks. Identify resources to help the people you love, and it can create a whole other outcome for them."
Other options to support caregivers can come from stronger laws to protect them, Choula said. Requiring paid family leave — which is available in New York and 10 other states but not Michigan — allows caregivers to take time away from work without docking their paychecks or using up their vacation, she said.
Making it illegal to discriminate against caregivers because they may have to leave work or request accommodations can also be a significant benefit for people. Such laws don't happen in a vacuum, though.
"Where we've seen many successes, those are places where we've identified a caregiving champion within legislatures. If you have someone in a legislature who is a caregiver or who has been, then you typically have someone who is all in because they personally experienced it," Choula said. "Oftentimes, that personal experience — and it could come from a constituent, too — it makes the difference."
'Everybody needs somebody'
Maybe in the near future Rosa Hunter will move back to her Detroit home, or maybe she'll move in with one of her two sons. Hunter was the youngest of six children, but she said the caregiving role fell on her because she's healthier than her siblings.
"Planning hasn't even crossed my mind, but I'm sure my eldest son would take care of me and would step up to the plate," she said. "I could always use more help, of course, but her kids are worse off than she is. My oldest sister is already in a nursing home with dementia, my brother has Parkinson's. ... I'm trying to prevent that from happening to me."
Hunter looks forward to Tuesdays when her sister takes her mom to lunch and she can get a break until 5:30 p.m., or Saturdays when she picks up her brother with Parkinson's so he can keep his mom company while Hunter grocery shops.
"Everybody needs somebody. Either family or an organization that can send a confident caregiver," Hunter said. "But know that you have to keep yourself up in order to be a caregiver because if not you, who else is going to step up to the plate?"