For unpaid family caregivers in the workforce, the burden grows

Isaura Beltre with her mother, Maria Asenjo, who was partially paralyzed following brain surgery. Asenjo's four adult children rotate caring for her every weekend and at night. Jessica Rinaldi/Globe Staff

For the tens of millions of people in the workforce who also care for ailing or aging loved ones, the strain of juggling professional and personal responsibilities can take a heavy toll.

A Cambridge man turned down the opportunity to go back on tour with a Broadway production to care for his mother, who has dementia. A Boston woman with a master’s degree worked a series of low-level jobs as she grappled with the needs of a son with severe learning disabilities. A legal receptionist in Portland lost her job after her daughter’s seizure led to a 52-day hospital stay, and more care at home.

The pressure is mounting as the population ages and the need for elder care grows. The pandemic created even more demand — and more stress — as people fell ill with COVID, prompting more families to provide care and postpone medical treatments and nursing home placements. As the burden intensifies, the roughly 20 percent of working adults who comprise this “invisible backbone” of society is increasingly being pushed to the edge of what is possible — and healthy.

In Massachusetts, elder care is becoming “an especially constant and critical need” for workers as more of them care for parents and older relatives, according to a new state report on the future of work, which notes the new paid family and medical leave law has helped but more must be done. Before the pandemic, more than 600,000 employees around the state were estimated to be caring for loved ones, out of 844,000 total unpaid family caregivers, according to the Massachusetts Caregiver Coalition, which launched in 2019 to help support working caregivers. Two years into the pandemic, the number of all informal caregivers statewide is likely closer to 1 million, the coalition estimates.

Caring for family members with special needs makes it difficult to maintain a job even in the best of times. Pre-pandemic, one out of three reported quitting a job because of their caregiving responsibilities, according to the Rosalynn Carter Institute for Caregivers. A recent Federal Reserve report found that caregiving is the second-largest factor contributing to the current labor shortage, after the surge of retirements.

Isaura Beltre has helped her mother through four major brain surgeries. The last one, in July, resulted in a blood clot that left the former Boston Public Schools teacher partially paralyzed, and her four adult children rotate caring for her every weekend and at night. Beltre, 44, a marketing professor at Bentley University, and her sister, who is a lawyer, each spend about 40 hours a week doing almost everything for their mother. When Beltre’s mother had a seizure at 6 a.m. last week, Beltre was there to help her through it, then rushed out of her house in Lynn just as the personal care attendant was arriving to make it to a 9:30 class.

Her coping mechanism is simple: “I just overwork myself.”

Unpaid family caregivers tend to be a vulnerable population to begin with, disproportionately female and people of color, research shows, with poorer health and lower incomes and education levels than non-caregivers, and less access to paid time off. Those over the age of 50 who leave the labor force are estimated to be losing out on more than $300,000 in wages, benefits, and retirement funds over their professional lifetimes. People of color, whose communities were hit hard by the pandemic, also become caregivers a decade earlier on average than white caregivers, potentially limiting their careers and earnings potential even more.

Isaura Beltre (right) helped her mother — partially paralyzed from brain surgery — put on a compression glove. Jessica Rinaldi/Globe Staff

Beltre’s family immigrated to the United States from the Dominican Republic in 1977, when her mother was pregnant with Beltre. Taking care of your parents to the end is a duty in Latino culture, she said. And so she bathes and dresses her 63-year-old mother, and crushes her pills because she can’t swallow. “We don’t put our parents in nursing homes,” Beltre said. “It’s a cultural expectation, and we do it with honor.”

The strain on caregivers has been magnified during the pandemic, and it continues to grow as more people are called back to the office, according to Archangels, a caregiver advocacy platform founded in Boston. The group’s Caregiver Intensity Index online quiz shows that in March, two years into the pandemic, 29 percent of respondents nationwide were “in the red” (facing the most stress with the least resources and support), the vast majority of them dealing with anxiety, depression, or suicidal thoughts, said cofounder Alexandra Drane, compared to about 24 percent during the height of the pandemic and 8 percent in early 2020.

Federal legislation has been proposed that would give states additional Medicaid funding for temporary caregivers to provide relief for family members, provide retirement income to people who leave jobs to look after others, and give tax credits to eligible caregivers. Massachusetts lawmakers are also considering giving a tax credit to unpaid family caregivers.

But resources provided by employers are few and far between. Less than a third provide formal support for caregivers on staff, according to the Employee Benefit Research Institute, although that appears to be increasing as the need grows and companies look for new ways to attract and keep workers. From 2020 to 2021, the number of employers looking to offer senior care support for their workers nearly doubled, according to Care.com, an online caregiving marketplace based in Waltham.

Adam Goldberg, who runs the Burlington-based caregiver support platform Torchlight, expects employer interest in offering these benefits to keep rising as the labor shortage stretches on. And with the Equal Opportunity Employment Commission issuing new guidance last month warning employers not to discriminate against caregivers in an attempt to “ensure that America’s recovery from the pandemic is an equitable one,” Goldberg noted that caregivers appear to be emerging as “the next protected workforce.”

Employer support makes a huge difference, said Sean Coakley, who works for the Rockland biopharmaceutical company EMD Serono and spent several years as a caretaker for his mother after she was diagnosed with cancer. EMD Serono has an employee resource group dedicated to caregivers and just started requiring all employees to take a training course to help them understand the needs of caregivers in the workforce.

Cam Cote’s caretaking role compelled him to set aside his musical theater aspirations, turning down the opportunity to resume his “dream job” touring in the Broadway production of “Fiddler on the Roof” after his mother’s dementia progressed during the pandemic. Now he works remotely for the Rosalynn Carter Institute, which offers 40 paid caregiver hours a year and flexible hours. “I was only looking for jobs that . . . I knew would have the understanding of the split obligation,” said Cote, 27, who lives in Cambridge.

But that type of understanding can be hard to find. Liz, a single mother who asked that her last name not be used to protect her son’s privacy, studied at Columbia University and got a master’s at the London School of Economics and Political Science. But when she realized her son had severe learning disabilities, her ambitions were derailed. Liz sought out jobs that provided her the flexibility to take her son to special schools and appointments, working at a Boston-area hospital and a hotel, and most recently as a COVID contact tracer for the state.

But finances are tight, and she and her son, now 21, had to move multiple times as rents rose. Liz’s caretaking experience compelled her to enroll in a nursing assistant program in Maine, where she now lives. Still, she wonders what might have been: “I don’t think I ever had the career I should have had.”

Working outside the home has become impossible for Tamar Bushnell, whose 23-year-old daughter, Alathea, has a rare genetic disorder that causes severe developmental delays, autism, and epilepsy that can trigger up to 150 seizures a day. In the summer of 2020, Bushnell’s daughter fell during a seizure at a New Hampshire care center and ended up in the hospital for nearly two months. The Portland-area law firm where Bushnell was a receptionist held her job through the fall, but with few openings at facilities and limited nursing coverage from the state, Bushnell had to continue caring for Alathea at home, and lost her job.

The single mother spends about 60 hours a week providing direct care for her daughter, who uses a feeding tube, and another 30 hours a week trying to find therapists and wrangling with insurance companies over details as seemingly simple as acquiring orthotic shoes. The state finally started paying Bushnell, 46, to care for her daughter — who qualifies for 24/7 nursing care — but being a caregiver while navigating the state system is a relentless, all-consuming undertaking.

“It is a giant labyrinth that you walk into, they lock the door behind you, and there is no exit,” she said. “I can’t keep doing this. I’m falling apart.”

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