Facing the Caregiving Crisis

By Rita Pyrillis

Sep. 6, 2019

Mani Mueller is one of the millions of Americans who has cared for an elderly parent or children while working a full-time job. Photo by Paulius Musteikis

When Mani Mueller landed a plum job at a biotech firm in Wisconsin in 2013 she brought her parents from Pennsylvania to help care for her two young daughters while she found her footing at work.

The timing was perfect. Her mother had just retired and her father, who suffered from Parkinson’s disease, was doing well and looked forward to spending time with his granddaughters. But what promised to be a dream scenario fell apart within a few months as her father’s condition declined and her mom couldn’t keep up with his care.

Parkinson’s is a progressive nervous system disorder that affects movement, and her father began falling frequently, requiring constant supervision. Soon, Mueller was tackling not only the demands of a new job, but also working a second shift as her father’s primary caregiver and power of attorney, shuttling him to doctor’s appointments, researching treatments, and learning to navigate the Medicare and Medicaid systems. Since her father, a Laotian immigrant, spoke little English she also became his translator.

At 37, Mueller had joined the ranks of 44 million adults in the United States who provide unpaid care for a loved one who needs support, according to AARP. She also became a member of the “sandwich generation,” caring for both a parent and children. Like many caregivers in the workplace, she never told her employer for fear of damaging her career. Instead, she used her vacation and personal days to meet the demands of caregiving.

In January 2018, five years after she placed her father in a nursing home, her company, Promega, introduced a caregiver leave benefit that provides employees with an additional two weeks of paid time off a year to care for a sick parent, spouse or child, or to welcome a new child. But even then Mueller was reluctant to come forward.

Mani Mueller was the primary caregiver for her father. Photo courtesy of Mani Mueller.

“I didn’t want to advertise that I was dealing with all of this or put on paper that my dad has this condition and my kids have that condition,” said Mueller, now 43 and a manager in supplier quality at Fitchburg, Wisconsin-based Promega. “I keep everything to myself. I thought sharing this information would negatively impact my career. I’m very quiet and private, but internally, I thought ‘How much more can I deal with?’ I was exhausted and stressed out.”

Mueller’s story illustrates the dilemmas faced by many caregivers who must choose between what’s best for their families and what’s best for their careers. It also sheds light on the complexities of caregiving in a time of great demographic change. Older people will outnumber children for the first time in U.S. history by 2030, traditional family structures are changing with families getting smaller and more geographically dispersed, and thanks to medical advances people are living longer with disabilities and chronic conditions.

This is resulting in a caregiving crisis that many employers are failing to acknowledge or understand, according to a Harvard Business School study released in January. “The Caring Company” report highlights a disconnect between the kinds of supports caregivers in the workplace need and what most companies provide.

Fear Factor

One reason that employers don’t understand the impact of caregiving on their businesses is that many employees are afraid to tell them, according to Linda Roundtree, an HR consultant who specializes in the aging workforce.

“When people don’t feel free to come forward, they have to make an excuse for why things happen or why they’re distracted at work,” she said. “There’s fear about hurting their careers. You see that fear when women are afraid to disclose that they’re pregnant.”

Only 28 percent of employees who care for a loved one were willing to admit that their family responsibilities harmed their careers, according to the Harvard Business School report. Around half of caregivers surveyed were afraid of being overlooked for challenging assignments, or missing out on salary increases or bonuses. And while 80 percent of employees admit that caregiving has affected their productivity, less than one-fourth of employers said that caregiving influences employee performance.

Mueller said that if Promega had a caregiving benefit when she started there it’s unlikely that she would have taken it. But by 2018 Mueller had been a manager for two years and was confident in her position. So, when her dad’s condition worsened again that May and her daughter was diagnosed with a kidney infection she signed up for time off under the company’s caregiver leave policy. Her father died the following November.

“Exceptional caregiving” is the term that Roundtree uses to describe the new realities for caregivers who are caring for loved ones with a host of cognitive impairments, physical disabilities and chronic conditions.

“There is a huge chunk of the workforce that will be taking care of a child with special health care needs or an elderly parent,” said Roundtree, who co-authored a 2018 paper on the changing nature of caregiving for Boston College Center for Work and Family. “Today even young, single people understand that complex things will happen either to themselves or to a partner or spouse and they need employers that know how to support them.”

The Young Caregivers

While the typical caregiver is a white woman in her late 50s, about one-fourth of all caregivers are between the ages of 18 and 29, according to AARP. They are also the fastest growing and most diverse demographic in the workplace. Employers need to understand that caregiving affects workers of all ages, Roundtree said.

The scope of the problem came as a surprise to executives at Promega when the company surveyed its own workforce in 2017 to better understand the caregiving needs of its employees.

It looked at all kinds of situations from parents of newborns to parents of children with special needs to children caring for parents and adults caring for a spouse, according to Promega benefits manager Diana Clark. She said that everyone was surprised by the variety and intensity of the demands on employee caregivers. They discovered a hidden population of employees who were spending about 29 hours a week on caregiving duties, basically working a second unpaid shift.

Also a surprise was the average age of their caregivers: 33 years old.

Promega Benefits Manager Diana Clark caregiving
Promega Benefits Manager Diana Clark

“I would have thought three years ago that average caregiver is 55 or 60 years old and nearly retired, but it’s a parent with kids and an elderly parent who is struggling with cancer or some other health condition,” Clark said.

“When you talk to people in those roles they will tell you that’s just what they do and that it’s not a burden. They’ll say that ‘dad just needs me to get groceries, or he can’t drive, or I have to make sure that mom takes her meds.’ There so many tactile details involved that we couldn’t help but see the strain.”

This led Promega to launch caregiver leave benefits in January 2018 that provide employees with an additional two weeks of paid time off a year to care for a sick parent, spouse or child, or to welcome a new child. The benefit can be used in daily increments or all at once. So far, 120 employees, or 12 percent of Promega’s 1,400 employees, including subsidiaries, have used the benefit.

Employees Open Up

Clark said that the program has taken on a life of its own with employees coming forward to share their stories and even launching their own initiative called Circle of Caring. The initiative connects caregivers and employee volunteers willing to help with meals, shopping, lawn care, transportation and other errands. One group of volunteers even planted a garden for an employee who was an avid gardener but was unable to use his arm after a surgery.

This year, the company also began offering free onsite psychological counseling one day a week for caregivers and plans to offer health care navigation services, among other supports for caregivers, such as bereavement support and financial counseling.

Deb Notstad, right, cares for her son Adam, who is physically and developmentally disabled. Photo courtesy of Deb Notstad.

Deb Notstad, 57, a complaint investigations specialist at Promega, is grateful for the benefits, even though they came too late to help her. In 2016 her elderly mother was dying and she was caring for her 28-year-old son Adam, who is physically and developmentally disabled. Notstad, a single mother, is also the legal guardian for her brother who is a critical diabetic and is developmentally disabled. While she thinks that two weeks of paid leave is great, it’s not nearly enough for those with complex caregiving needs.

“When they introduced the benefit I had already spent weeks in the hospital with my son,” she said. “My first reaction was, ‘Are you kidding? This is a drop in the bucket.’ But I don’t know too many businesses that offer something like this.”

While a growing number of companies including Starbucks, Cigna, Best Buy and Microsoft offer caregiver supports such as extended paid leave, long-term care insurance for parents and grandparents, and counseling, the vast majority do not offer benefits that are valued by caregivers, according to the Harvard Business School study.

The top reasons that caregivers quit their jobs is the high cost of paid help, the difficulty in finding trustworthy support, and the inability to manage the demands of work and home — all areas where employers could provide support, the study found.

Those that fail to address the problem will pay the price in “hidden costs” such as turnover, loss of institutional knowledge, absenteeism and other factors that are difficult to quantify, according to the study.

Katie Boer cares for her mother who suffers from dementia. Photos courtesy of Katie Boer.

Katie Boer, 31, never thought that two years after landing her dream job as a broadcast journalist she would be quitting to look after her 71-year-old mother. In 2016, shortly after she began working at a Las Vegas television station, Boer’s mother, who lives in Seattle, was diagnosed with Lewy body dementia, which can cause hallucinations and Parkinson’s-like symptoms such as body rigidity, tremors and balance problems.

At first, Boer handled things by phone and took paid time off for regular trips to Seattle, but as her mother’s condition worsened the situation became unmanageable. Her mother would call her at work several times a day confused and agitated, often minutes before she went on the air. Eventually, Boer installed a video camera in her mom’s apartment to keep a closer eye on her. But when she saw her mom lying on the floor in the middle of the night crying out Boer’s name for hours, she reached a breaking point.

“I’d be lying in bed watching her not sleeping with tears falling sideways down my cheeks,” she said.

“I’d cry all night and go to the bathroom and throw up. Even though I had a dream job I felt like I was selfish for not being there. So I sacrificed my job and moved to Seattle.”

For employees at smaller companies without caregiving supports or benefits like flex time or paid time off the burden of caregiving can be especially crushing.

Amanda Smith, 34, works at a small nonprofit arts foundation on the East Coast that is not required to provide leave under the Family and Medical Leave Act. With a toddler who has cerebral palsy along with other disabilities and requires round-the-clock care, managing a career is an enormous challenge.

While her boss was initially accommodating, allowing her to work from home one day a week, he has become impatient with the lack of flexibility in her schedule, she said.

“He’d like me to come in without any warning but our lives our very, very choreographed because of all the doctor’s appointments, services and nursing care that my son needs,” she said. “We can’t just call a babysitter. My husband would have to call in sick or my mother-in-law would need to come because she’s the only one besides us who knows how to take care of him. I don’t think employers really understand how complicated caring for a child with a disability can be.”

But many are trying, according to LuAnn Heinen, vice president at the National Business Group on Health, a coalition of large employers.

“It’s definitely on their radar,” she said. “We did a survey in 2017 and 88 percent of employers think caregiving will be a big issue over the next few years. Paid leave is important but we know that it won’t solve the problem if you’re caring for someone over a number of years. There must be more supports like flexible work arrangements, health care navigation, and services to help employees find caregiving services. Employers realize this.”

For those that fail to address the needs of caregivers, Clark warned that companies like Promega will be happy to hire their employees away.

“Unemployment is low and there are great people out there who are not getting their needs met and will want to work for an employer who recognizes them as a whole person,” she said. “You lose so many aspects of what that person can bring to the table when they are trying to take care of their families and are not supported.”

Rita Pyrillis is a writer based in the Chicago area.

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