Evan McGonagill, 31, had a very different vision of her life.
She imagined that she’d be living in Philadelphia, where she was building a career in university library archives. She planned to climb the ladder in her field and then perhaps go to graduate school.
But a visit to her mother’s house in Boston changed all of that.
“[My mother] had always been the record keeper in the family. She had done everything with our finances,” said McGonagill. “But when I visited…I was knee-deep in papers in two rooms. It was just a sea of scrambled records.”
McGonagill didn’t know that her mother, who is in her 70s, had been suffering from major neurocognitive disorder, a precursor to Alzheimer’s. Her mother had been forgetting to pay bills. Debt collectors and scammers were calling.
McGonagill decided to live with her mother for a few months to get her on track. A few months turned into several when her parents had to divorce, sell their house and move into different apartments.
The end of the caregiving never came. It’s been two years since McGonagill moved in with her mom in a Brighton, Mass. apartment, and her father’s health is now fading, too. She schleps them both to appointments and manages her mother’s medications and the household.
McGonagill let her job grant expire and didn’t seek further employment in Philadelphia. She’s held a rotating set of odd, flexible gigs while her parents’ insurance—thankfully—paid for their medical and assistive care. In turn, McGonagill has had to put her career on the backburner.
“I’ve never had a moment to get myself to set up in a different professional network,” McGonagill told Know Your Value. “I’ve been in survival mode for two years, putting out fires constantly, moving my mom from the house to an apartment, hiring someone else to help. It’s been full-time.”
McGonagill’s situation is very common. Northwestern University found that up to 80 percent of older adults are cared for at home by family. More than half of caregivers are also employed.
And according to the National Alliance on Caregiving, 60 percent of caregivers are women, but the proportion of men who caregive (40 percent) is rapidly growing.
Since 1993, the U.S. has mandated that employers must grant 12 weeks of unpaid family leave. However, this protection only affects companies with 50 employees or more (so, 60 percent of the workforce) and the majority of caretakers cannot afford to take this time off. Six states - Rhode Island, New York, New Jersey, Washington state and Washington D.C. - currently mandate some paid family leave.
Meanwhile, 43 million Americans work as unpaid family caregivers, according to the AARP. The National Academies of Sciences, Engineering and Medicine found that 8.5 million caregivers are caring for a high-needs adult, meaning the adult has dementia and/or they need help with two or more daily self-care activities, such as bathing or dressing.
The same study found that caregiving is rarely short-term; 70 percent of caregivers surveyed had been in their positions already between two and 10 years. About half of caregivers do so out of obligation, be it cultural or due to specific family issues. Caregivers are likelier than non-caregivers to suffer from anxiety, depression, social isolation and financial loss.
As a result, “there are a lot self-identification problems,” said C. Grace Whiting, president and CEO of the National Alliance on Caregiving. “What the research has said is people resist self-identifying as caregivers because it’s more like a second job than a true vocation. There’s a concern that the caregiving relationship is going to take over your life and replace other identities you have that are important to you. Then of course, there’s the existential worry that your family member is dying.”
In Vermont, Cathy McWilliam, 59, has been a caretaker for multiple elder members of her family for seven years. A hairstylist, McWilliam always imagined opening a salon of her own after her kids left the house. Her caregiving schedule, however, meant that she needed to continue her track of freelancing with a flexible schedule.
“I’m self-employed, and I can control my own thing,” McWilliam said. “But I always thought I’d have my own building and the whole dream.”
McWilliam said that she has suffered mentally and physically from being on-call 24-7 for her mother, who has dementia.
“I wake up with heart palpitations, panic attacks, arrhythmia,” said McWilliam. “I’m more forgetful.”
Until the RAISE Family Caregiving Act passed in 2018, there was no official federal language around unpaid family caregiving. Priorities of the act include improving financial security and workplace issues for families, respite care options, and family planning throughout the U.S.
However, the law is in its infancy. The data is difficult to collect, according to the NASEM study, due to murky definitions of caregiving and a lack of official metrics. Caregivers are still not officially recognized by the U.S. health care system, thereby denying them rights to resources or information about the dependent.
According to Whiting, the lack of education and cultural discussion around caretaking means that many people are often caught financially and logistically unprepared.
“I’d love to see us get to a place where we talk about caregiving as a normal part of our lives,” said Whiting. “Having conversations early and often about what does it look like, asking ‘If you’re 80, mom, what do you want your life to look like?’ People are uncomfortable talking about it at first, but the more you talk about it the more it’s destigmatized.”
In the meantime, more companies are open to remote, flexible employees. Sue Bhatia founded the staffing agency Rose International, which places thousands of contingency workers —or project-based workers — into jobs, ranging from $12 to $300 an hour. Rose International connects employers with potential contingency workers and negotiates their rates and flexibility. Women make up 65 percent of her workforce.
“There is a huge demand for skilled workers,” Bhatia said. “Because of this huge demand, employers are willing to work with people who have a good skill set and soft skill set, it’s hard to find people who are eager to change and learn, so employers are more flexible in that regard. People can relate to a lot of these caregiving situations, and because of that, they're flexible. Humanization is happening”
Bhatia said she placed one IT employee who had to take her mother to chemotherapy treatment frequently. This woman would bring her laptop and work while her mother underwent the treatments, Bhatia said.
“As long as the person’s good, it’s in everybody’s interest to be flexible,” said Bhatia. “Mostly people who contingent workers are experienced. They’re there because their skill set is unique and hard to find...Anyone who is a self-learner and can learn things themselves, take a couple of courses online - there are ways to gather skill sets. especially if people are ready to take responsibility for their own career.”
Mary Pembleton is a rare person who made full-time caregiving work as a job. She was studying nursing when her grandfather fell ill. Due to his veteran status, Pembleton was able to get paid as a full-time caregiver for him, while also staying home with her children. After he passed away four years later, Pembleton started pursuing a writing career. She published a story about caregiving in the New York Times.
“I’m a natural caregiver and I love it, so it actually worked out quite well,” said Pembleton.
Pembleton suggested carving out time for yourself and your own family in order to get through the harder times. Whiting said that caretakers should turn to support groups in hospitals, through specific agencies like the Cancer Society, or online. Exercise self-care, and a positive attitude wherever possible, Whiting said.
“Make sure you have plenty to celebrate as a family, so that when you have a tough day, you can withdraw a happy memory from the emotional bank so to speak, so you can say ‘this is a really hard day but I love my mom and we’ve done happy things recently,” Whiting said
Whiting also argued that there is a very bright side to caregiving that we often ignore.
“There’s so much out there about the challenges of caregiving, you just think ‘that’s a drag.’ There’s a richness there, of being able to celebrate someone and take care of someone you love...to be there with someone through these difficult situations,” Whiting said. “It’s not just the drudgery of it. There’s a compelling human need to caregive.”