RICHFIELD, Minn. — Racked with nausea and unable to leave the bathroom, Acey Hofflander muttered in confusion. Her husband tried to press a damp washcloth against her neck, his hands trembling and weak from Parkinson's disease.
"What's happening? What's going on?" Acey mumbled.
Their roles had unexpectedly reversed. At 85, Acey is the healthy one, the organized, energetic caregiver for husband, Tom, 88. But when a grueling day of showering, dressing, feeding and transporting him to medical appointments pushed Acey beyond exhaustion in July, she wound up in the emergency room — a health crisis the Hofflanders blame in large part on a lack of professional, in-home care.
Amid a national shortage of home-care workers that deepened during the covid-19 pandemic, the couple spent much of this year on a private agency list waiting to be assigned a professional home-care aide. But over four months, from April to August, no aides were available, leaving Acey to carry the load on her own. Many nights — after an hour-long bedtime routine that included giving Tom his pills and pulling on his Depends before tucking him into his recliner — she lay sleepless in bed.
"He needs a lot of care, and it's wearing, not only physically but mentally," Acey said in one of several interviews. "It makes you worried about what's going to happen. How long can I do this?"
The Hofflanders' story is becoming increasingly common as the country's shortage of home-care workers worsens, jeopardizing the independence of a generation of elderly Americans who had banked on aging in place rather than spending their twilight years in nursing homes.
Polls say an overwhelming majority of people older than 50 want to remain in their homes as long as possible, and studies have shown aging in place can promote quality of life and self-esteem. But Acey Hofflander's health scare — she stayed in the hospital overnight with a form of migraine — reveal the dangers when elderly people are forced to go it alone.
The shortage predates the pandemic but has been exacerbated by it, according to industry and government experts. Demand for home services spiked as lockdowns, uncontrolled infections and deaths frightened people away from nursing homes, where the number of residents declined nationally from about 1.3 million in 2019 to 1.1 million in 2021 and has only partially rebounded in 2022. At the same time, because of the tight labor market, the low-paid workers have quit for less taxing jobs in Amazon warehouses and as Uber drivers.
The lack of services also is affecting disabled people under 65 years old who are dependent on others for daily needs.
The result is that an increasing share of elderly and disabled people are living at home but having difficulty finding the help they need to do it safely. A fall or an exhausted caregiver could mean they are forced into a nursing home or a bedroom in their adult child's home.
"The crisis is real and won't be quickly fixed. The shortage of health care workers is like nothing we've seen before," said Ruth Martynowicz, chief operating officer for Michigan-based Trinity Health At Home, part of a large Catholic health system. Trinity Health At Home said recently it was turning away 250 home-care requests per week across its 11-state network, which is mostly in the Northeast and Upper Midwest.
The shortage of workers is threatening the option of aging at home for people up and down the economic scale — whether they qualify for government Medicaid, have medical conditions that qualify for Medicare coverage, or must pay out of pocket.
"I often worry about where families are turning right now," said Vicki Hoak, chief executive officer of the Home Care Association of America, which represents 4,000 home care agencies across the country.
Many of its members had been turning away 30 to 40 requests for care per month, she said: "We have that increased need, yet we are having to turn away people because we don't have staff."
In Minnesota, where the Hofflanders live, the state's long-term care industry has been hit especially hard. The state economic agency estimated at the end of 2021 that there were at least 7,200 vacant home-care jobs in the state, and state industry leaders said the number likely is closer to 9,000.
Workers at the lower rungs of the home-care industry — mostly women and people of color — are among the lowest paid in the United States. The median pay for personal care aides was just $14.27 an hour in 2021, according to PHI, a nonprofit that publishes annual reports on the national home-care workforce.
Workers can earn equal or higher wages at Home Depot or McDonald's — performing jobs that are a lot easier than bathing, dressing and feeding seniors.
"Fast food is trying to find workers and retail is trying to find workers and they are all trying to pull from the same labor pool," said Kezia Scales, senior director of policy research at PHI.
Industry representatives said there are no quick fixes. National trade associations and individual state groups are lobbying to block spending cuts for home care under Medicare while advocating for higher compensation so workers can be paid higher wages. Industry leaders also are examining ways to make home care work a rung in a health-care career ladder. They say extra pay could be allocated for people who receive training for dementia. Because up to a third of home-care workers were born outside the United States, industry groups have urged Congress to consider special temporary visas.
In the meantime, the worker shortage is having a widespread effect.
Large home-care chains, small companies and local nonprofits are all struggling to find staff, agency representatives said in interviews. Even after recruits survive background checks and are trained, they sometimes quit after two weeks, said Cher Kuechle, who runs a Home Instead franchise in Edina, Minn.
"This is a very thankless job and people don't really need to do it. There are other options to make money," said Osagie Edison, assistant living director of Anchor House, a small home-care agency in Crystal, outside Minneapolis.
Edison said he was trying to hire six additional home care aides over the summer. But potential applicants know they can make better wages driving for Uber or UPS, he said. Every week he gets calls from "desperate" family members and case managers who have been waiting as long as six months for a caregiver. He is forced to tell them he does not have enough staff.
"Sometimes I don't even respond," Edison said. "They know what's going on."
PHI estimates that the home-care workforce nationally numbers around 2.6 million. About 1 million more home-care workers will be needed by 2030 as the baby-boom generation finishes aging into retirement — what demographers call the "Silver Tsunami."
Policymakers have long recognized that America's patchwork system of home care is insufficient, a source of anxiety for families across the nation.
More than 90 percent of the estimated 5 million who received care from home health agencies in the United States in 2018 required help with bathing, dressing, using the toilet, walking and getting in and out of bed, according to the Centers for Disease Control's National Center for Health Statistics. More than two-thirds needed help eating.
The Biden administration in 2021 sought $400 billion in new spending for home- and community-based care, channeled through Medicaid, to states. Access to care would have been expanded and workers would have received raises and benefits. The Democratic-controlled House pared that to $150 million. But the plan collapsed when Democrats failed to muster enough Senate votes for the ambitious Build Back Better legislation.
Disabled people under 65, some of whom have lived their entire lives dependent on others for daily care, also are encountering a lack of in-home help, advocates said.
After the pandemic hit, Minneapolis resident Antonietta Giovanni lost the home-care aide who had cared during the day for her son, who is 29 and has autism. Loss of the paid help meant Giovanni could no longer do her outside work as a disability advocate and interpreter. But even after vaccines and testing became widely available, she was not able to find a replacement caregiver. The state pays her to be her son's aide for 40 hours per week, although she said she takes care of him many more hours than that.
"It has been two years of a very challenging journey, very overwhelming," she said. She secured the help of a new aide earlier this year, but that aide left after four months to seek a job in a group home for the disabled, where the pay is better.
"I shouldn't be mad at them, because it's not their fault," she said. "People have to do the best for their families."
A disabled Minnesotan, Lee Ohnesorge, 57, who was paralyzed in a motorcycle accident in 1993, needs help with basic needs for several hours in the morning and several hours in the evening, including what he calls his "bowel and bladder routines." He was admitted to a nursing home earlier in the pandemic because he had developed bedsores.
After seven months, he was healed and ready to return to his apartment. But it took him another two months to find a home-care aide — so he was stuck in the nursing home, waiting and calling around.
Eventually he found someone and moved home. But the aide was unreliable — showing up only late at night, for instance — and he had to began his search again, Ohnesorge said. He said he recently called 30 agencies; seven had their phones disconnected, seven said they could not even place him on a waiting list, and the rest had limited availability and wait lists.
Many elderly and disabled people are relying on volunteers, neighbors, church networks — anyone who can help them skirt the next health crisis that might push them into a facility.
The Hofflanders have more community support than some other seniors. They get frequent visits from family and friends. The home is planted just outside the Minneapolis city limits on a block of suburban ranch homes, what they call "ramblers" in Minnesota.
Both Tom and Acey were widowed when they met in their 60s. Friends from church fixed them up, and they got married in 1999. Tom Hofflander worked in public schools as a physical education teacher and administrator and played golf. Acey worked as a secretary for years and raised her children and played tennis. In 2005, the local newspaper profiled their feat of walking all of Richfield's streets, nearly 125 miles.
Even after Tom's Parkinson's limited his mobility, Acey kept up a steady social schedule, organizing card games with friends. She keeps stacks of folders with all of his health records. They have a long-term care insurance policy that they expect to pay for in-home care visits, but in a provision that is typical of such policies, coverage only begins once they have paid out of their own pocket for 90 days.
They both wanted to stay together in their house as long as possible, although they began researching assisted-living facilities, cognizant that Parkinson's would likely require that Tom have more hands-on care as the disease progressed.
"We want to be together, we want to live together," she said. "If he goes into assisted living, I would go into assisted living with him."
Last year, family members suggested they start with help in their home. So they went on a waiting list and continued to cope.
Managing around the house, with its wall-to-wall carpet and family photographs lined up in the living room, is not easy for just the two of them.
"I've got to get rebandaged!" Tom suddenly called out from his living room chair during an interview. A swatch of gauze flopped off his left shin.
"Oh no, not again," Acey said, hopping up and sticking it back on. Tom's skin got scraped off when Acey lifted the dishwasher door to close it without noticing how close Tom was standing. Now she had to keep the cut clean and covered, one of the dozens of details she manages every day.
She described how she learned to get Tom showered and dressed. He sits on a bench in the shower. "Mainly the biggest problem with someone taking a shower is their back and the seat and back of the legs. He turns his back to me," she said. "My arms get wet, and my feet."
One of her tricks is to button his dress shirts before she puts them on, and then pull them over his head. She slides his trousers over his legs, she said, then gets him to stand and pulls them the rest of the way up. Socks are one of the hardest things to get on. Acey describes all this grueling work in a cheerful, can-do voice.
"She never complains. She just does it all," said Acey's daughter, Shari Lyrek, 61, who stops by the house several times a week to help out.
Acey carries small armfuls of clothes to the basement multiple times a day, to avoid hauling a single large basket that might pull her off balance. Tom goes up the stairs to the bedroom on a lift. In January, Tom experienced a spate of falls. Using her training from occupational therapy, Acey helped him get up herself, rushing a chair into place for him to haul himself up, and using her own weight in the chair to give it stability.
"When she's supposed to be laying low, or backing off, or reducing stress, she keeps going," Tom said.
The day in late July that she got too sick to leave the bathroom, Acey had overdone it.
She showered and dressed Tom in the morning, wrestling his 180-pound frame into clothes. She packed him and his walker in the car for trips to a doctor and a physical therapy appointment, with a stop for pizza in between. She shopped for groceries and picked up prescriptions as Tom sat in the parking lot, listening to the radio.
By evening, Acey texted her daughter that all was well; they had arrived home safely. Then she was struck by vomiting and diarrhea; she grew disoriented.
Summoned by Tom, Lyrek drove to their house and called an ambulance as soon as she saw Acey. One of Tom's sons came to the house to stay with him.
Doctors determined she did not have a stroke, Acey said, but she had transient global amnesia brought on by a "silent" or acephalgic migraine. Basically, she said, she had pushed herself too hard. She has no recollection of her ambulance ride and CT scan.
"The whole issue is stress," Acey said.
The episode prompted Acey to ask another home-care agency if it had an aide available. By a stroke of luck, it did. With help three days per week, Acey now has more time to pack for a move from their house to an over-55 apartment complex in October, closer to her daughter. It's an apartment with a single level; no more stairs. When they need it, assisted living is a possible next step, in a separate wing in that complex or at another facility.
The new complex is a half-hour away, outside the service area of the current home-care agency, however. The Hofflanders will have to hunt for a new caregiver.
"Are we going to have to wait another four months?" Acey said.
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