Positive Aging

The Unsung Heroes of Caregiving

An Aging Population, Pandemic, and Politics Makes a Tough Job Even Harder

Kathy Herigstad was 60 years old during her father’s last year of life. Nearly 90, Russel had progressive, age-related memory loss, an enlarged prostate, atrial fibrillation, and a mass in one lung that his doctor believed to be cancer, for which he refused treatment. He just wanted to see what would happen. Kathy promised to take care of him, in his home, until he died. A stoic Norwegian, Russel simply said, “I like it here.”

As it turned out, caring for her dad at home was beyond what many people could have managed. Kathy had moved back to her childhood home a decade earlier to help maintain the household by cooking, cleaning, and doing repairs, while continuing her career managing a busy physician’s office. As his health declined and his memory loss increased, caring for Russel became far more intense.

“Especially in his last year, that was my sole responsibility. I would go to work, come home, take care of him,” Kathy says.

It wasn’t just that she didn’t get out much, see her friends, or take her usual exercise run. Even while she was at work, Kathy checked the “daddy cam” monitors she installed so she could call 911 if he fell and couldn’t get up, which did happen sometimes. She was always “on” as a caregiver. And then, Russel broke his leg and could no longer walk. He had to be lifted and carried from his bed to a wheelchair, then to his favorite recliner, the toilet, wherever he needed to be. It was exhausting. Kathy needed help.

“About six months before his death, I hired a caregiver to come in during the day while I was at work. It started at four hours, then increased to eight hours as he declined.” Caregiver Huriya, says Kathy, “was loving, very compassionate, and like family.”

Huriya fed Russel, changed his pull-ups, watched him to prevent falls, and helped him exercise, brush his teeth, and bathe. Besides physical care, Huriya would laugh and chat, encouraging Russel to tell stories. She made caregiving human for him, not just clinical.

After her own work, Kathy would come home and take care of Russel at night. Sometimes he’d be up every three hours, needing help.

“Walking that last journey with him,” remembers Kathy, “I was always alert—my whole internal system for sleeping changed.” Had it gone on longer, she would have hired a nighttime caregiver as well. “If I had to do that, at that intensity, for two years, I would have burned out.”

AARP and the National Alliance for Caregiving published their Caregiving in the U.S. 2020 report in May. They found that more than one in five Americans are unpaid caregivers, taking care of family or friends, including adults and children with special needs. That’s an estimated 53 million adults, an increase from 43.5 million reported five years ago. These caregivers come from all walks of life and backgrounds. Three in five are women and two in five men. Fifty-three percent felt they had no choice in taking on a caregiver role.

Of those who care for adults, the care recipient is usually a relative, most often a parent or parent-in-law, followed by a spouse or partner. About 40 percent of caregivers live with the recipient. And compared to five years ago, adults receiving care have increasingly complex medical and/or support needs.

According to the report, 51 percent of family caregivers “feel their role has given them a sense of purpose or meaning.” At the same time, they report negative impacts on themselves. About 61 percent of caregivers are also working, leaving them little time to take care of their physical or emotional health. They may have to take time off from work or switch to part-time hours, affecting their own long-term financial stability. Caregivers who feel they had no choice in taking on their role are more vulnerable to the stress that goes with it.

And that’s the dilemma: how to provide care for aging relatives while working, raising kids, having a life of one’s own—especially in a situation that may go on for years. If you can afford it, there’s help available.

Home care workers provide recipients with companionship, meal preparation, shopping, support for chronic conditions, bathing and dressing, housekeeping, pet care, transportation, and also respite for families. Care can be given anywhere the client calls “home,” including assisted living or other facilities. Benefits of hiring a professional caregiver, says Shawn D’Amelio, president of Washington Home Care Association, also include improved nutrition and hydration, medication compliance, and fewer trips to the ER.

Hiring home caregivers takes some work. There are a couple of ways to go. You can network among friends and acquaintances to find someone who feels like a good fit, has caregiving experience—or wants to become a caregiver—and employ them. There would be no outside supervision or follow-up on compliances; you would be responsible for any issues such as on-the-job injuries or illicit behavior. Costs vary but could run from $15 to $21 per hour in Seattle, less in areas without a $15 minimum wage.

Home care agencies are another option. In Washington, they are licensed with the state Department of Health and bonded. They do background checks, require fingerprinting, conduct formal training, have backup caregivers if someone is ill, provide supervision, and support families. They take care of payroll, may provide benefits, and pay workers’ compensation for their employees. Agencies are pricier than hiring someone on your own, running approximately $28 to $46 per hour, and up to $90 per hour in some cases, depending on what’s needed. Short visits are more expensive than longer shifts.

Shawn D’Amelio spent years as a caregiver before becoming director of development at home care agency With a Little Help. Building a relationship with clients is key. As she says, “You can’t necessarily walk in on your first shift and give someone a shower.”

D’Amelio emphasizes the importance of ongoing education, resources, and support for caregiving staff. For example, education around chronic diseases such as dementia or Parkinson’s allows caregivers to connect more effectively with clients. And there’s always someone to call for help. “If you have a team behind you, you call us and say you’re struggling, we’re going to work with you as a team to help you help your client and their family,” says D’Amelio.

Training for home caregivers is required by the State of Washington and enforced by home care agencies. Employees must take a 75-hour course, followed by an examination, at their own expense to become certified as a home care aid. The training must be completed within 120 days of the hired date, with testing completed within 200 days of hire. After adding in childcare and transportation, it can cost as much as $1,000 to become certified. This can be a substantial financial burden for people with a job that may only pay about $17 per hour.

The need for caregivers is high and will get higher. Boomers are aging. It’s inevitable that many of us—if not most—will eventually need care ourselves.

Turnover rate for caregivers is also high, up to 80 percent nationwide. Pay is low and higher rates would be beyond the reach of many people who need care. Depending on the situation, long-term care insurance, Veterans Affairs coverage, or Medicaid may help cover the cost. Beyond that, home care is private pay.

Washington, however, has a plan to make home care more affordable. In 2019, the state passed the Long-Term Care Trust Act, the first of its kind in the nation. Through a mandatory payroll tax, employees will contribute to the trust, starting in 2022 and benefits will start being paid in 2025. Workers who contribute for a certain amount of time, and who require assistance with at least three activities of daily living, will be eligible for $100 per day, up to a $36,500 lifetime benefit. While it won’t benefit those who are already retired now, it’s an important step for the future.

Meanwhile, home care agencies are continually recruiting. “It’s a constant challenge to find the right caregivers and to retain them, given this is challenging work that takes a very special person to do,” says Sasha Weiler, chief marketing officer of Family Resource Home Care. “The one unifying value they all share is compassion. They must be patient and kind, they must be able to connect and gain trust, but also have the ability to be influential, even when clients don’t want to do the things that caregivers are there to help them do.”

Word of mouth is huge, says Weiler, adding that current employees are encouraged to recommend friends and family, and often do. Offering good benefits and matching caregivers to the right clients, says Weiler, is key to retaining staff.

Alexis Ruhumuriza and Tim Cooke, partners at Agape In Home Care, see caregiving as a stepping stone to something else, especially for immigrants. Agape’s mission is to work with two vulnerable communities: an aging population and caregivers who are new to the U.S. Many of their employees, says Cooke, grew up in a culture of caring for older family members.

Chantal Mutesi, from Rwanda, took care of her grandmother and her mother before coming to Seattle. “In my country,” she says, “we don’t have caregiving, so family does it. It becomes part of life. When I came to this country, I found that older people didn’t have enough help. I thought I could do that.”

Agape’s goal is to motivate employees to move on after a few years to more highly paid, higher-skilled work, while continually recruiting and training new caregivers.

“They can be helping this country while building their own dreams. They can make a huge impact, a big contribution to this country,” says Ruhumuriza, a pastor and an immigrant himself. “We want to know what their goals for the future are.”

Whether it’s family or a professional, a good caregiver offers more than simply skilled assistance with daily tasks of living. It’s the traits you can’t teach, says D’Amelio, that are essential to success: kindness, compassion, and love. Kathy felt it was an honor to care for her father. Chantal believes in treating people the way she would wish to be treated.

“We learn something from caring for people,” Chantal says. “Some of them share stories, tell you something about [an earlier]time, and I’m learning new English words as well. We share recipes, share things we like. It’s not just going there to work, but for friendship and companionship, too.”

Priscilla Charlie Hinckley has been a writer and producer in Seattle television and video for 35 years, with a primary interest in stories covering health and medicine, women’s and children’s issues, social justice, and education. She enjoys taking a lighthearted approach to serious topics.

Photo: Agape co-owners Alexis Ruhumuriza and Tim Cooke bring coffee and PPE to caregivers.

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