Every second year for almost ten years, cell biologist Susan Michaelis has looked forward to a trip to Innsbruck, Austria, for a conference that she helps to organize.

But in 2010, after months of planning and preparation, she had to cancel her travel plans to make an emergency trip to Florida. Her mother, who lived there, was suffering from excruciating joint pain due to osteoarthritis, and needed help. The crisis sparked her mother's ultimate decline into immobility, and marked a turning point for Michaelis — the start of a journey into long-term caregiving. It has been tough. “I'm glad I didn't know what was coming and how much of me it was going to consume,” she says. “It just felt great to be able to be there to help her.”

Credit: Pascal Fossier/Ikon Images/Corbis

Today, Michaelis, a professor at Johns Hopkins University in Baltimore, Maryland, is among the estimated 17% of full-time workers in the United States who juggle their careers with medical, financial or legal responsibilities for ageing parents. Globally, the problem is expected to worsen: the World Health Organization estimates that nearly one in four people will be older than 60 by 2050.

Academics tend to have relatively flexible schedules, but basic research often leaves little time free for giving hours of care to an ageing or ill parent. “If this had happened to me at a point in my career ten years earlier, I couldn't have done what I did — because I would be in there bucking for tenure,” says Michaelis.

Combining a demanding career with caregiving creates what seems like enough work for a small army. Accepting help is an important step towards balancing these demands. Experienced carers say that reaching out to family members, friends, colleagues and institutional assistance programmes has been invaluable.

Long-distance relationship

Distance has emerged as a significant problem in caregiving, says Meg Stoltzfus of the Johns Hopkins Office of Work, Life and Engagement, where she coordinates support for faculty members and staff who care for elderly relatives. “By the time a faculty member has finished graduate school and found a job, they're unlikely to be in the same region as their parents,” she says.

Johns Hopkins is one of several US institutions that employ work–life staff who specialize in care of elderly relatives — others include the University of California, Berkeley, and the University of Arizona in Tucson. These staffers can refer faculty members to care providers who can take a relative to medical appointments, help to prepare meals or provide full-time medical care.

Such care is not cheap. Costs vary widely by region and by level of care: in the United States, for example, an in-home health aide can cost around US$30,000 a year; a room in a private nursing facility might be more than $94,000 a year. In countries including the United States, France and Belgium, government social services provide subsidies for the care of low-income senior citizens. But for those of middle income, long-term care is a significant financial burden.

For years, Michaelis had flown to Florida every 4–6 weeks to help her mother for a few days at a time. Her father, who had handled the couple's finances, errands and household repairs, died in 2007 at the age of 97, leaving Michaelis's mother — who had stopped driving — ill-equipped to take care of herself. By 2010, she was increasingly unable to walk, and Michaelis needed outside help.

Michaelis's mother wanted to stay in her own home, and Michaelis decided to help to keep her there for as long as possible. Through a friend's referral, she hired daytime and overnight assistants to help her mother with meal preparation, trips to the bathroom and some shopping and housekeeping tasks.

Michaelis and her brother called their mother daily, and Michaelis continued to visit regularly. Much of her work, including grant applications and reviewing papers, could be transported easily. But over the years, Michaelis says, the time and energy spent arranging her mother's medical appointments, managing health-insurance paperwork and dealing with unexpected household and medical emergencies — often from afar — took attention away from her research programme.

“We all already have a lot of non-scientific work that we have to do. Even a small diminishment in time has an impact,” says Michaelis.

This year, Michaelis noticed a decline in her mother's mental acuity, and in April, she moved her to an assisted-care facility in Baltimore. She had to delay renewing one of her grants so that she could help her mother to move and prepare her parents' house for sale.

“It has had an impact on the progress of our work,” she says. But, she adds, “I would do it all over again”.

Returning home

Faced with the worry and expense of providing care and oversight remotely, some researchers decide to relocate. That decision hinges on a combination of family and cultural expectations, as well as on personal goals: some researchers must decide whether to stay in an institution where their careers are established or move closer to their parents, where prospects might be uncertain.

Neuroscientist Fuqiang Xu grew up in a small farming town in Henan province, China. He moved to the United States in 1988, where he earned two doctorates, completed a postdoc and secured a research position at Yale University's Magnetic Resonance Research Center in New Haven, Connecticut.

But in 2004, his mother died after a three-month battle with lung cancer, and he decided that he needed to move closer to his father, then in his eighties. “I should have returned earlier,” says Xu. He accepted a research post in 2007 at the Wuhan Institute of Physics and Mathematics in China, about 400 kilometres from his hometown. He was able to visit several times before his father died in 2008.

Xu's colleagues often ask him if he regrets leaving the United States, but he says that he enjoys the lower competition for funding in China. And his prestigious US education and training, he says, have helped him to secure — and to support — his current position, where he heads a lab of about 40 postdocs, graduate students and other staff members.

Competing demands

Igor Stagljar, a molecular geneticist at the University of Toronto in Canada, is considering moving closer to his mother in Croatia, where she has been living alone since Stagljar's father died in 2007. Four years ago, Stagljar dropped a grant application and flew to Croatia for three weeks when he found that his mother had been diagnosed with renal cancer. “I was just mentally not ready to write that grant,” he says.

I'm the only child in the family. I would feel really bad if I couldn't help.

Stagljar's mother made a full recovery. But the incident started him thinking about the future. “I'm the only child in the family,” he says. “I would feel really bad if I couldn't help her.”

He hopes to find a professorship in Europe once the younger of his two daughters, now 14, finishes secondary school in Canada. For now, he talks to his mother on Skype most days, and visits about three times a year, sometimes combining his trips with conference travel.

Caring for ailing parents while juggling busy work schedules can leave many researchers feeling overwhelmed. Adult children of parents stricken with terminal illness or dementia can feel guilty, frustrated or grief-ridden.

In January 2012, as immunologist Laurie Glimcher started a job as dean of Weill Cornell Medical College in New York City, her father began showing signs of dementia. She moved him nearby, and tried to spend as much time as she could with him, even as she was learning the ropes at her new position and managing a packed agenda of meetings and fund-raising events. But within a year, he lost interest in daily activities, including eating and drinking.

“It was a huge weight, watching him deteriorate,” she says. Her father — Melvin Glimcher, former chair of orthopaedics at Massachusetts General Hospital in Boston — had published papers with her when he was well. “I wanted to remember him the way he was,” she says.

In the months before her father's death in May, Glimcher found support in talking to colleagues who had lost parents to Alzheimer's disease. Some US universities offer counselling and guidance for carers, as well as free referrals for care providers, and free or subsidized back-up care for occasions when normal arrangements fall through (see 'Helping hands'). But many employees remain unaware of such services.

“I don't think people necessarily think, when they're having a personal crisis, to look to their employers first,” says Ian Reynolds, president of the College and University Work-Life-Family Association, a nationwide organization of work–life professionals. “It's still a developing service and developing field,” he says. But, he adds, “we're seeing a real need emerge”.

In addition to institutional resources, many people rely on informal support. Michaelis chats to friends about her mother's care. Several have had their own care stories and tips, making more bearable what otherwise would have been a perplexing and lonely experience.

“There's kind of a trajectory you can expect for children, for their growth and development. Elder care is complicated. There are many different ways that people can fail, and it's totally unpredictable,” says Michaelis. “It's really helpful to have a support group of friends to talk about all of this.”