Caregiver stories show love, duty and the need for some help

Experts says caregiving is especially hard for those juggling work with need to care for ill or disabled loved ones

When their mom first showed signs of dementia, Debbie Mortensen and her six siblings decided they’d help her where they could, but let her be as independent as possible. Then it became clear 2½ years ago that Mary Thornton, now 80, needed more than occasional help and Thornton’s husband, who was older, was himself physically too frail to address all her needs.

Mortensen said the siblings assessed how each could contribute. Her gift was presence. Mortensen, 52, had the most flexibility. She owned her own cosmetic company franchise and basically worked for herself. Her husband Gordon was in law enforcement, but was nearing retirement. They decided it was feasible, if not altogether desirable, to leave their home of 27 years in Fillmore, Utah, and move two hours north to Grantsville to live with and care for her mother.

That decision puts the Mortensens among at least 53 million caregivers providing unpaid care to an adult or child, according to AARP’s “Caregiving in the U.S. 2020” report. That’s nearly 1 in 5 adults who care for a family member who is ill or disabled. Roughly 60% of them also work.

The AARP Public Policy Institute estimated in 2017 that frail Americans receive care with a value of at least $470 billion in unpaid assistance.

Families can find the task nearly overwhelming, especially if they’re balancing work and caregiving tasks, as the Center for Public Justice said in an open letter to Congress this month, asking lawmakers to enact policies to help unpaid caregivers manage the load.

The center, a nonpartisan nonprofit “devoted to public policy research and civic education with a distinct theological lens,” said the signers want Congress to:

  • Guarantee paid parental and family leave that can be used at the birth or adoption of a child or to care for someone who is sick or disabled.
  • Support paid time off for illness, recovery and caregiving.
  • Protect pregnant women and young children. They note higher risk of bad COVID-19 outcomes to pregnant women and unborn children and the United States’ high rate of maternal and infant mortality, compared to comparable nations.

“Public policies should uphold both the dignity of work and the virtue of caregiving,” the letter says. “We urge you to prioritize family-supportive work as central to our national recovery.”

Debbie Mortensen, left, fixes her mother Mary Thornton’s hair at their home in Grantsville on Friday, Feb. 26, 2021. Mortensen and her husband, Gordon, are among at least 53 million U.S. caregivers. | Spenser Heaps, Deseret News

What COVID-19 revealed

COVID-19 has expanded who sees the needs of caregivers, said the Rev. Amy Ziettlow, pastor of Holy Cross Lutheran Church in Decatur, Illinois, and a longtime advocate for family caregivers. She co-wrote “Homeward Bound: Modern Families, Elder Care and Loss” and was among those signing the letter to Congress.

“When the COVID-19 pandemic began, America’s patchwork approach to paid time off meant millions of workers had no access to paid sick days,” the letter said. “Emergency leave has helped fill some gaps for workers, temporarily. Emergency leave should be expanded and assured for the duration of the pandemic. The U.S. also needs a forward-looking plan to ensure that, even after the end of the pandemic, all workers will have access to paid sick days for the seasons of illness, recovery and caregiving that are normal and important parts of human life.”  

They wrote that “we have prayed for protection for those who have worked on front lines, accompanied children learning from home, consoled those who have lost work and mourned those who have died.”

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Ziettlow saw challenges vex families with health or caregiving needs during the pandemic. Some people couldn’t take time off to quarantine when they were exposed or became ill because it would have cut into their incomes. Caregiving put their ability to pay rent or buy their children food at risk. The natural outcome, she said, is to go to work anyway, putting others at risk.

“In that sense, it really benefits everyone to have protective policies,” she said. “It really is a safety net.”

She’s repeatedly seen families struggle with challenges like learning a day care will close unexpectedly for two weeks “starting tomorrow” because someone got COVID-19. Handling that is tricky, she said, because some of the informal help families might call on, like an elderly but willing member of one’s faith congregation, cannot be tapped for help in this pandemic. Even nearby adolescents are out of bounds. The risk is too great.

Especially lower-wage earners and people who work part-time may lack access to paid benefits — and they are often called upon as caregivers because their families don’t have alternatives that better-off families could afford.

Providing care for an elderly person may also be very complex and require certain skills, so not just anyone can be called into service.

Ziettlow predicts one good thing may arise from the pandemic experience. Lawmakers and public alike have “realized how important caregiving for our personal health as well as the health of our immediate loved ones is. And that we need help doing that. You need time and you need a lack of anxiety about whether or not you’re going to have an income to do that well,” she said.

Ziettlow is among experts who believe it’s generally better for society and for most individuals if care can be provided by loved ones at home. That care is less expensive and most older adults who need care say they’d prefer it that way.

Additionally, COVID-19 is unlikely to be the last health crisis, she added. We’ve learned we could be better-prepared for the next one.

Debbie Mortensen, left, helps up her mother, Mary Thornton, at their home in Grantsville on Friday, Feb. 26, 2021. “I feel blessed” to be able to care for her, Mortensen said. | Spenser Heaps, Deseret News

More local solutions?

The federal Family Medical Leave Act allows workers to take up to 12 weeks off to deal with a health crisis, though it doesn’t mandate paid time. Someone who is himself ill may be able to go out temporarily on paid disability, but that doesn’t extend to family members who need care.

Some state and local governments have tried to fill gaps to help caregivers. In Illinois, for instance, employers provide 10 days of paid sick leave that can be used for one’s own or a close relative’s illness.

Local aging programs, which may have local or federal funding, provide a lot of help to older adults who need it. Area Agencies on Aging operate several programs. But they’re stressed, too. Services such as Meals on Wheels or respite care may have waiting lists, limited time to offer families and are chronically underfunded.

Right now, the Mortensens have qualified for a total of 60 lifetime hours of respite care and they’re taking it a couple of hours at a time to go out for dinner or run errands while someone stays with Thornton. When it’s used up, they’re going to miss it, but it has helped immensely, Debbie Mortensen said.

Employed caregivers typically say they’re happy to take care of their loved one and signed up to some extent for the job. But when they devote time to a family member, they’re missing out on benefits a casual observer might not consider. They often lose wages. They lose a share of contributions to Social Security and any retirement savings account their employer may offer. They may not get promotions.

“That can really have a cumulative negative financial impact,” said Ziettlow.

That Mortensen owned her business helped. But she gave up her local franchise when she moved, so she’s making less money than she was. They’ve been able to use her mother’s Social Security to hire a little bit of help here and there, but at professional agency rates, that would go fast. Her sisters and brothers help as they can, though COVID-19 has limited them. They are very good, she said, about helping her find resources and chipping in where they can.

Mary Thornton looks out a window at the home she shares with her daughter, Debbie Mortensen, and family members in Grantsville on Friday, Feb. 26, 2021. | Spenser Heaps, Deseret News

Not just about $$

Money’s not the only issue. Caregivers can face the ire of employers or see their careers suffer when family demands impinge on work.

AARP Public Policy Institute issued a report on that issue in February by the Center for WorkLife Law at the University of California Hasting College of the Law. Researchers there found several federal laws bar employment discrimination because employees care for family members, but the protection is limited.

“They apply to only specific workplace issues, such as retaliation for taking family leave or discrimination because the employee is associated with someone who has a disability, and only certain types of family caregiving, such as being the parent of a young child,” the report said.

State and local laws may fill in gaps, but they are few and far between. For instance, Delaware alone says employers can’t discriminate against employees because they care for adult family members, but it doesn’t cover caring for in-laws, siblings or grandparents who may be disabled or ill. And it says an employer has to apply its rules in a nondiscriminatory manner. If a supervisor is allowed to work from home to give medicine to a parent, others have to be allowed to as well. But they could all be told no.

Three states have more limited laws “that could be expanded to include family caregivers,” wrote report authors Cynthia Thomas Calvert and Jessica Lee.

Connecticut law says employers can’t ask about family responsibilities. A New Jersey rule protects state employees from discrimination or harassment based on family status, but doesn’t explicitly mention caregiving. Alaska, Minnesota and New York prohibit discrimination against relatives caring for young children, AARP reports.

Cities, towns, villages and counties have tackled discrimination against family caregivers: 191 passed laws that ban discrimination, but may limit the ban to those caring for children. Few specify caring for adults. Many of those laws offer as redress the right to sue an employer, which some are loathe or unable to do.

According to AARP, the issue is called “family responsibilities discrimination” or “caregiver discrimination” and the harm can take many forms, from being terminated to being bullied into reducing caregiving to simply being bypassed for opportunities and raises.

AARP points out caregiving is not a partisan issue.

Some of the best help caregivers get comes from support groups, Ziettlow said. That’s also a major source of programs and policies that may help people in their caregiving. But not everyone can get away from jobs or caregiving for that, either.

Some also need help understanding what their related benefits are, if they have any, and how to access them, she said. She thinks a federal, unified approach would help “because right now, it’s so piecemeal and employers administer those benefits differently, which is especially bad when you’re already stressed.”

As for Mortensen, she’s grateful that circumstances have let her care for her mother. “I’m blessed that I could take the time, though it put a little damper on us financially giving up the business,” Mortensen said. “I love her and don’t want her in a home.”