About five years ago, as her mother's hearing diminished and dementia worsened, Linda Brocklesby decided with her family that their mom could no longer live in California alone. Her children thought Washington state would be good — there were more relatives, and Brocklesby would move in.
They settled on Sequim, in an area with new homes that felt like their own quiet, little spot, looking at the mountains. The Clallam County city is often advertised as a prime place to retire; about a third of its roughly 8,000 residents are 65 or older.
Brocklesby wanted to hire someone to come to their house and stay with her mom for a few hours so she could run errands or get a short break. But she and her family soon found themselves facing a similar issue as thousands of others in rural and isolated communities nationwide that are rapidly aging: More and more people need care, and fewer are available to provide it.
Caregivers assist with daily activities like preparing meals, helping with dressing and managing medications. The job descriptions have a wide range; one person may need someone for two hours a week to assist with household chores, while another may require help around the clock. For people with age-related needs or disabilities, caregivers are a line of defense against a cascade of complications — a burnt-out lightbulb may seem innocuous, until someone trips because they couldn't see at night, breaks a bone during the fall and has to be hospitalized.
But in rural areas, where about 1 in 5 of Americans 65 and older live, these services are less likely to be available compared with those in urban areas. The shortage is attributed to a complex web of factors: a shift of working-age people moving to urban areas, lack of financial incentives and support for professional caregivers, and in Washington, the state's geographic features — mountains with passes that make travel difficult in the winter, islands that require ferry rides — that add another layer of difficulty.
Feeling the strains are the rural residents who want to age in the homes they've lived in for decades or in the same area where they chose to retire, their family and friends who struggle to find care and fill in the gaps themselves, and the local providers who see the needs firsthand.
"For survival, so I can keep going at this, I need to bring in some help," Brocklesby said in April, noting that her mother's dementia had progressed. "But it's hard to find someone. There are fewer people available. It's a hard job."
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When Dani Rice became a professional caregiver, the entire town of Asotin seemed to find out immediately.
"I had people I hardly even talk to suddenly call me and say 'Hey, I need care, I need a caregiver. Can you do it? I'll pay you out of pocket,'" said Rice, 34. "Somehow, my phone number gets passed around."
There are a handful of caregivers in the town of about 1,200 people, in Washington's southeast corner. Across Asotin County, nearly 25% of residents are 65 and older, about 5,375 in total, and 266 people pay for professional home care, according to the state Department of Social and Health Services. This includes both older adults and younger people with disabilities.
Most older adults needing care rely on a relative or friend; an estimated 850,000 unpaid caregivers provide about 80% of the long-term care needs in Washington — care that would equal about $10 billion if paid for, according to DSHS. Within that unpaid group, 350,000 care for a loved one with Alzheimer's or another form of dementia, according to the Alzheimer's Association of Washington.
In rural areas, the pool of family members available for care decreases as more people move to larger towns or cities for jobs, coupled with families having fewer children than previous generations. The population pyramid, where older people form the top tip, has shifted more toward a rectangle because of the large baby boom generation, said Bea Rector, secretary of the state Department of Social and Health Services' Aging and Long-Term Support Administration.
"It's both a shrinking number of people who are available to do the work, and an increasing population of people who need it," she said.
That's not limited to rural areas. More than 1 million Washington residents are 65 and older; by 2025, this population will reach 1.5 million and continue growing, according to DSHS. To meet that need, the number of professional caregivers will need to grow by at least 50%, experts say.
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Alyssa Evans has worked for about 200 people as a caregiver over the years in and around the tiny North Cascades town of Concrete, population 738. She began informally caring for Rick Bartholomew in the fall of 2018, and after he had a stroke in January 2019, they tried to find him a unit in a senior housing facility. But each waitlist was at least a year and a half.
Instead, Evans opted to move Bartholomew into a trailer on her property so she could continue as his caregiver. He went on Washington's Community Options Program Entry System, a Medicaid waiver program that helps people with limited incomes or assets receive personal care and services at home or in another care environment instead of a nursing home.
Evans is paid through COPES for 166 hours per month for Bartholomew. But previous clients haven't always had the same financial assistance. Evans realized soon after a woman hired her that the woman's monthly Social Security checks weren't enough to cover Evans' hourly rate. The woman paid her at irregular intervals, forcing Evans to make a hard decision about someone she considered a friend.
"I had to stop caring for her," said Evans, 39. "I told her 'You can't just pay me when you want to.'"
WA Cares, a payroll tax passed in 2019, is intended to provide residents with an additional way to pay for long-term care they may need in the future. The program allows eligible workers in Washington to collect up to $36,500 to pay for care needs, though it has been delayed until July 2023 after legal challenges and resistance over who can receive benefits under its initial structure.
Even with changes to allow some workers currently near retirement age — roughly 477,000 in Washington — to claim prorated benefits, the program doesn't address those who have already retired or have long-term care needs now, like 71-year-old Bartholomew.
When Bartholomew fell off a porch and broke both legs, it took 30 minutes for a volunteer ambulance to arrive. Doctors advised a move to a rehab facility, but this was when COVID-19 cases were raging in long-term care facilities.
"I said, 'Over my dead body, I'll pick him up now if I have to,'" Evans recalled.
But they knew, with his health concerns, being in Concrete was no longer an option. A unit opened in a Mount Vernon senior housing building, where he's lived for about a year. Evans drives 45 minutes each way every weekday to care for him. Bartholomew is her full-time client, though to supplement her income she also sometimes take shifts from a care agency or fills in for other caregivers.
On a cloudy day earlier this year, Evans made him soup and gave him a Glucerna shake, then went over his monthly bills and figured out a day for his cataracts surgery appointment.
"It all works out, as long as she's with me," Bartholomew said.
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Senior Life Resources, a nonprofit based in Richland that runs a home care services program, has to get creative to find more workers for its growing client list in eight Eastern Washington counties. There are job and business fairs, and local work agencies. It's posted employment flyers in post offices and grocery stores. The best resource is word-of-mouth; a caregiver who refers an at-least-part-time hire receives $110 in incentive pay.
"We are trying to increase that," said Cherie Noble, program director for Senior Life Resources' home care services. "It's seeming to get more and more difficult to recruit, and the need is definitely there."
Senior Life Resources has about 1,300 clients, more than a 50% increase from six years ago, and a roster of 765 care providers. About 91% of the caregivers are women, according to Noble.
On a daily basis, Yvonne Castillo does an equation in her head: If she starts saving money and does this or that, maybe she can live somewhere else with her mom, who has dementia. But her mom has lived in Colville, a Stevens County town in northeastern Washington, for decades. Castillo worries about the mental and physical impact of an upheaval. Plus, moving is expensive.
"It's beautiful country out here," Castillo said of the mountain town with fewer than 5,000 people. "Things are much slower. It looks good on paper and in theory, but actually it's different, it's harder because we are in such a rural area and trying to get things done with my mom."
In addition to caring for her mom, she also works at an assisted-living facility in town. Nationally, 61% of family caregivers have a job in addition to their role as caregiver, according to a 2020 joint report by the National Alliance for Caregiving and AARP. The assisted-living provider, too, has struggled with staffing, mirroring a worker shortage in long-term care facilities across Washington and the U.S.
Stevens County has nearly 12,000 people who are 65 and older, and 537 throughout the county employ paid caregivers. Even if a client has options, it can be difficult to find the right fit with a caregiver. Castillo's mom had four caregivers hired through a local care agency — one got burnt out, two didn't show up on time and one wouldn't provide the help her mom wanted.
One was scheduled to work for another client in Republic, 52 miles away. Agencies vary in how they compensate mileage, and the state reimburses caregivers for essential trips like shopping and medical appointments. The state caps reimbursable mileage at 100 miles per month, though it can authorize additional miles to access other services funded by DSHS, and Medicaid covers transportation to and from medical appointments, where the caregiver can accompany the client. But mileage adds up quickly, especially for clients in the most remote locations.
"Gas is really expensive, and when you have to drive 38 miles just to take your client shopping one way, it's not a lucrative endeavor," said Rice, the caregiver in Asotin. "People do have to be able to put food on their table."
Location, Noble said, is a significant barrier. Some clients live an hour or more from the nearest Senior Life Resources office, and though there's mileage reimbursement, rising gas prices and wear and tear on a vehicle take a toll, Noble said.
"Once clients know they have the choice and are choosing to stay in their own homes, they don't understand how difficult it will be to have a caregiver who will travel an hour," she said.
At the Olympic Area Agency on Aging, there's always a waitlist, according to Susie Brandelius, who handles programs for the agency located on the Olympic Peninsula.
The clients understand there isn't much she can do. They live in a really rural area and "you can't manufacture care aides." Professional caregivers must complete 75 hours of basic training and pass a background check in order to be certified.
In Clallam County, there's a resident who has been on a home-care provider waitlist for a year who lives in Joyce, an unincorporated community on Highway 112 west of Port Angeles.
"If the care aide is living between Sequim and Port Angeles and takes a job in Joyce, that's 30 minutes," she said.
Caregiving is challenging work, and wages are comparable to jobs in retail or hospitality that might not require the same time and investments. A recent job listing through an agency in Clallam County sought a candidate with care-aide or nursing certification, driver's license and prior experience in health, hospitality or home care. The responsibilities include helping with bathing and dressing for senior clients or people recovering from medical care, cleaning a home and doing the client's shopping. The hourly weekday pay: $18.60, and $19.60 on weekends.
In the same town, a listing for a cook at an American-fare restaurant advertised a position entailing food prep, baking and line cooking. No experience necessary, though one year is preferred. Hourly pay: $17 to $20.
"It's not always the easiest path from 'I am interested in this work' to becoming a caregiver and making it through this training process," said Lynn Kimball, the executive director of Aging & Long Term Care of Eastern Washington. "If someone else is hiring and the wage is comparable, people often look at the closest, easiest path because that is the economic reality for us all."
But caregivers have a constant bleeding heart, Rice said, even if that means taking a job that pays less than working at a fast-food restaurant. Still, she's known more than a handful of people who moved to larger towns or cities where the pay is better or jobs are closer.
"I tell people every day, when you are a caregiver you know you are making a difference in somebody's life. Without you that person wouldn't have the food they need, they wouldn't have your friendship or companionship," she said. "But prepare to live in a battleground where you know you are a making a difference because there aren't enough caregivers."
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By June, Brocklesby realized caring for her mom — and trying to find others to care for her — had become too much. Her mother was getting out of bed every two hours at night. Brocklesby wasn't sleeping and her back hurt.
"I realized I was going to fall apart, and I can't keep doing this," she said.
She hired two friends of her daughters for $20 an hour for a few hours a day. That arrangement seemed to work great, for the short term. They loved her mom and Brocklesby got some time off. But she wanted to find someone during the night and looked through an agency, to little avail. The one person who came charged $40 an hour, Brocklesby said, and fell asleep.
"It made me feel better to at least know I have done everything I can," she said. "There was definitely a lot of guilt, 'How come I can't be stronger and be able to be with my mom?'"
Her mother moved into a memory care home in Sequim where she receives 24-hour care. Brocklesby visits regularly. She has little regret about moving her to Sequim in the first place.
"Caring for her was so beautiful to me," she said. "I'm blessed that I got that time."
This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and the Commonwealth Fund.
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