For Aida Beltr, working remotely during the pandemic has been a relief.
Working from home for a rental property company, she could pull it off. Indeed, like most family caregivers during the early days of COVID-19, she has had to manage. Community programs for seniors had been closed.
Even when Beltr transitioned into a hybrid work role, which meant some days in the office, some days at home, caring for her father was manageable, though never easy.
Then she was ordered back to the office full-time in 2022. At that point, Medicaid covered 17 hours of home care a week, up from five. But she wasn’t close enough. Beltr, now 61, was always in a rush, always worried. There was no way he could leave his father alone for that long.
Stopped. I needed to see my father, she said.
She was caring for her father, now 86, who has been in and out of hospitals and rehabilitation centers after a worsening series of strokes in recent years.
In theory, the national debate over remote or hybrid working is a big teachable moment about the demands of the 53 million Americans caring for an elderly or disabled relative.
But the “back-to-the-office debate has centered around commuting, convenience, and childcare. That fourth C, caregiving, is rarely mentioned.
This is a missed opportunity, say health professionals and their advocates.
Employers and co-workers understand the need to take time off to care for a child. But there is far less understanding of time to care for someone else.
We need to destigmatize it and create a culture in which it’s normalized, like birth or adoption, said Karen Kavanaugh, head of strategic initiatives at the Rosalynn Carter Institute for Caregivers. Despite all the cradle-to-grave talk, she said, mostly, the cradle of her.
After her stepmother died, Beltr moved her father into his home in Fort Myers, Florida in 2016. Her needs multiplied and she played, juggling, juggling. She is exhausted and, now, unemployed.
Also she is not alone. About one-fifth of U.S. workers are family caregivers, and nearly one-third have quit their jobs due to their caregiving responsibilities, according to a Rosalynn Carter Institute report. Others reduce their hours. Rand Corp. has estimated that health care workers are losing half a trillion dollars in household income each year, a figure that has almost certainly increased since the report was released nearly a decade ago.
Beltr briefly had a remote job but left it. The position required sales pitches from people struggling with aged care, which she found uncomfortable. He rarely goes out except to go shopping and to church, and even then he constantly checks on his father.
This is the story of my life, he said.
Workplace flexibility, while desirable, is no substitute for a national long-term care policy, a viable long-term care insurance market, or paid family leave, none of which are on Washington’s radar .
President Joe Biden gave family health care workers a salute in his State of the Union address in February, followed in April by an executive order to support health care workers and incorporate their needs into federal program planning, including Medicare and Medicaid. Last year, its Department of Health and Human Services released a National Strategy for Supporting Family Caregivers, outlining how federal agencies can help and offering roadmaps for the private sector.
While Biden has ticked off priorities and potential innovations, he hasn’t offered any money. He should come from Congress. And Congress right now is locked in a battle over spending cuts, not increases.
So that leaves it up to the families.
Remote working cannot fill all care gaps, particularly when the patient has advanced disease or dementia and requires intensive around-the-clock care from a relative who is also trying to work remotely. full time from the kitchen table.
But there are countless scenarios where the ability to work remotely is a huge help.
When a disease flares up. When someone is recovering from an injury, an operation or a tough round of chemo. When a paid carer is absent, ill or absent. When another familiar caregiver, the person who usually does the heavy lifting literally or figuratively, needs some respite.
Being able to attend to my father’s urgent needs at the end of his life and being present with my stepmother, who was the 24/7 caregiver, was an incredible blessing, said Gretchen Alkema, a noted aging policy expert who now runs a consultancy firm and was able to work from her father’s home as needed.
This flexibility is what Rose Garcia has come to appreciate, as a small business owner and her husband’s caregiver.
Garcia’s husband and business partner, Alex Sajkovic, has Lou Gehrigs disease. Due to his growing needs and the damage the pandemic has done to their San Francisco stone and porcelain design firm, he has scaled and redesigned the business. They cashed in on his retirement fund to hire part-time caregivers. She sometimes goes to work in person, especially to meet architects and clients, which she enjoys. The rest of the time she works from home.
As it happened, two of his employees also had care obligations. Her experience of hers, she said, made her open to doing things differently.
For one employee, a hybrid work schedule didn’t work. He had many demands on her, beyond her serious illness, and he couldn’t match her schedule with Garcias. For the other staffer, who has a young son and an aging mother, her hybrid job has allowed her to keep her job.
A third worker arrives full-time, Garcia said. Since he is often alone, his dogs also come.
In Lincoln, Nebraska, Sarah Rasby ran the yoga studio she co-owned, taught classes, and cared for her young children. Then, at 35, her twin sister, Erin Lewis, had a sudden cardiac event that triggered an irreversible and ultimately fatal brain injury. For three harrowing years, her sister’s needs were intense, even when she was in rehab or a nursing home. Rasby, their mother, and other family members spent hours at her side.
Rasby, who also handled all legal and paperwork for its twin, sold the studio.
I’m still trying to catch up after all those years of no income, said Rasby, who is now working towards a family caregiver degree.
Economic stress is not unusual. Caregivers are disproportionately female. If caregivers quit or go part-time, they lose their pay, benefits, Social Security and retirement savings.
It’s really important to keep someone attached to the job market, said Kavanaugh of the Rosalynn Carter Institutes. Caregivers prefer to continue working. Their financial security decreases when they don’t, and they could lose their health insurance and other benefits.
But given the high cost of home care, poor insurance coverage, and persistent workforce shortages in home and adult day health programs, caregivers often feel they have no choice but to quit their jobs.
At the same time, however, more employers, faced with a competitive job market, are realizing that the flexibility around remote or hybrid work helps attract and retain workers. Big consulting firms like BCG offer advice on the working assistant.
The success of remote work during the pandemic has undermined bosses’ ability to make claims: “You can’t do your job like that,” noted Rita Choula, director of health care for the AARP Public Policy Institute. In recent years it has been more common for employers to offer policies that help workers with childcare. Choula wants to see them expanded to represent a broad range of care that occurs throughout life.”
However, even with COVID’s reformulation of in-person work, telecommuting is still not the norm. A March report from the Bureau of Labor Statistics found that just 1 in 4 private businesses had some or all of their workforce remote last summer, a drop from 40% in 2021, the second pandemic summer. Only about 1 in 10 workplaces are fully remote.
And remote or hybrid work is mostly for people whose jobs are largely computer-based. A restaurant waiter cannot fill a cup of coffee via Zoom. An assembly line worker cannot weld a piece of machine from her father-in-law’s bedside.
But even in the service and manufacturing sectors, willing employers can explore creative solutions, such as modified shift schedules or job sharing, said Kavanaugh, who is conducting pilot programs with Michigan companies. Cross-training so that workers can substitute for each other when caregiving is to be entered is another strategy.
New approaches can’t come soon enough for Aida Beltr, who finds joy in taking care along with weight. She is looking for work, this time hybrid. I’m a popular person, she said. I need to go out.
She needs to be there too. Every night, she says, thank you for everything you do, she said about her father about her. I tell him, I do it because I love you.
KFF health newsformerly known as Kaiser Health News (KHN), is a national newsroom that produces in-depth journalism on health issues and is one of the leading operational programs ofKFF extension the independent source for health policy research, polling and journalism.
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