An underestimated advantage for caregivers

Working remotely during the pandemic has been a relief for Aida Beltré.

She took care of her now 86-year-old father, who has been in hospitals and rehabilitation centers again and again in recent years after a worsening series of strokes.

Working from home for a real estate rental company, she was able to cope. In fact, like most caregivers in the early days of Covid-19, she had to deal with it. Community programs for older people have been discontinued.

Even as Beltré transitioned to a hybrid work role — meaning some days in the office, others at home — caring for her father was manageable, though never easy.

In 2022 she was ordered back to the office full-time. At that point, Medicaid covered 17 hours of home care per week instead of five. But that wasn’t nearly enough. Beltré, now 61, was always in a hurry and always worried. There was no way she could leave her father alone for so long.

she stops “I needed to see my father,” she said.

In theory, the nationwide debate about remote or hybrid work is a big, educational moment about the demands of the 53 million Americans caring for an elderly or disabled loved one.

However, the “return to the office” debate has focused on commuting, convenience and childcare. The fourth C, care, is rarely mentioned.

It’s a missed opportunity, say caregivers and their advocates.

Employers and colleagues understand the need to take time off to look after a baby. But there is far less understanding of how much time one cares for others. “We need to destigmatize it and create a culture where it’s normalized, like birth or adoption,” said Karen Kavanaugh, director of strategic initiatives at the Rosalynn Carter Institute for Caregivers. For all the cradle-to-grave talk, she said, “Most of the time it’s the cradle.”

After the death of her stepmother, Beltré moved into her home in Fort Myers, Florida with her father in 2016. His needs have multiplied and she juggles, juggles, juggles. She is exhausted and now unemployed.

She’s not alone either. According to a report by the Rosalynn Carter Institute, about a fifth of US workers are family carers, and nearly a third have quit their job because of their caring responsibilities. Others reduce their working hours. The Rand Corp. has estimated that caregivers lose half a trillion dollars in family income every year — an amount that has almost certainly increased since the report was published almost a decade ago.

Beltré briefly held a remote job but quit. The position required sales pitches to people who had issues with elder care, which made her uncomfortable. She rarely goes out—only to the grocery store and to church, and even then she keeps checking on her father.

“It’s the story of my life,” she said.

Workplace flexibility, desirable as it is, is no substitute for a national long-term care policy, a viable market for long-term care insurance, or paid family leave, neither of which are on Washington’s radar.

President Joe Biden commended caregivers in his State of the Union address in February, and then in April issued an executive order aimed at supporting caregivers and incorporating their needs into the planning of federal programs, including Medicare and Medicaid. Last year, his Department of Health and Human Services released a national strategy to support carers, outlining how federal agencies can help and offering roadmaps for the private sector.

Although Biden ticked off priorities and possible innovations, he offered no money. That would have to come from Congress. And Congress is currently in a battle over spending cuts, not spending increases.

So that is left to the families.

Remote work cannot fill all care gaps, especially when the patient has an advanced illness or dementia and requires intensive 24/7 care from a relative who is also trying to work a full-time job from the kitchen table.

But there are countless scenarios where the ability to work remotely is a tremendous help.

When an illness breaks out. When someone is recovering from an injury, surgery, or heavy chemotherapy. When a paid caregiver is absent, ill, or absent. When another caregiver, the person who normally does the heavy lifting, literally or figuratively, needs a break.

“It was an incredible blessing to be able to attend to my father’s time sensitive needs at the end of his life and to be with my stepmother who took care of her 24/7,” said Gretchen Alkema, a well-known actress and aging policy expert who now runs a consulting firm and has been able to work from her father’s home when needed.

As a small business owner and her husband’s caregiver, Rose Garcia has come to appreciate this flexibility.

Garcia’s husband and business partner Alex Sajkovic has Lou Gehrig’s disease. Due to his increasing needs and the damage the pandemic was doing to her stone and china design company in San Francisco, she downsized and redesigned the company. They used his pension fund to hire part-time carers. Sometimes she goes to work in person, especially to meet architects and clients, which she enjoys. The rest of the time she works from home.

Incidentally, two of her employees also had care responsibilities. Her experience, she said, made her open to doing things differently.

For one employee, a hybrid work schedule didn’t work. She had many demands on herself, and she was seriously ill herself and couldn’t reconcile her schedule with Garcia’s. The other employee, who has a young child and an elderly mother, was able to keep her job thanks to the hybrid work.

A third employee is coming in 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 age 35, her twin sister, Erin Lewis, suffered a sudden heart attack that caused an irreversible and ultimately fatal brain injury. For three heartbreaking years, her sister’s needs were great, even while she was in a rehab center or nursing home. Rasby, her mother and other family members spent hour after hour by her side.

Rasby, who also handled all legal and bureaucratic duties for her twin, sold the studio.

“I’m still trying to catch up from all the years I didn’t have an income,” said Rasby, who is now working on a college degree in family nursing.

Economic stress is not uncommon. The nursing staff are disproportionately women. When caregivers quit or work part-time, they lose pay, benefits, Social Security and pension plans.

“Keeping someone in the workforce is really important,” said Kavanaugh of the Rosalynn Carter Institute. Nurses prefer to keep working. If they don’t, their financial security will decrease – and they may lose their health insurance and other benefits.”

But with the high cost of home care, low insurance coverage for it, and ongoing labor shortages in home care and adult day programs, caregivers often feel they have no choice but to leave their jobs.

At the same time, however, in the face of a highly competitive job market, more and more employers are realizing that flexibility in terms of remote or hybrid work helps to attract and retain workers. Large consultancies such as BCG offer advice on the subject of “employed carers”.

Successful remote work during the pandemic has hampered bosses’ ability to claim, “You can’t do your job like that,” observed Rita Choula, director of nursing at the AARP Public Policy Institute. In recent years it has become increasingly common for employers to offer policies to help employees with childcare. Choula wants them to be expanded “so that they represent a broad spectrum of lifelong care.”

But despite Covid’s reorientation of face-to-face work, telecommuting is still not the norm. A Bureau of Labor Statistics report in March found that only one in four private companies employed some or all of their workforce from home last summer — a drop from 40% in 2021, the second summer of the pandemic. Only about one in ten workplaces is completely remote.

And remote and hybrid work is mostly for people whose jobs are mostly computer-based. A restaurant waiter can’t refill a coffee cup over Zoom. An assembly line worker can’t weld a car part from her father-in-law’s bed.

But even in the service and manufacturing sectors, willing employers can explore creative solutions like altered shift schedules or job sharing, said Kavanaugh, who is conducting pilot programs with Michigan companies. Another strategy is cross-training so staff can represent each other when someone needs to step into care.

For Aida Beltré, who, in addition to the stress, also enjoys caring for her, new approaches cannot come quickly enough. She is looking for work, hybrid this time. “I’m a human,” she said. “I need to get out.”

She has to be there too. “Every night he’s like, ‘Thank you for everything you do,'” she said of her father. “I tell him, ‘I’m doing this because I love you.'”