By Tim Grant
It was challenging enough for Joy Robison to care for her terminally ill mother while she lived only a few minutes away. But when her husband accepted a job in Minnesota last May, she had to fly back and forth to Pittsburgh every couple of weeks, or pack her two young children in a car and drive across the country to be with her mother.
“I’m very thankful and very lucky I could spend the time in Pittsburgh I did with my mother,” said Robison, 41.
Her mother, Mary Robison, 76, died of cancer in October at home in hospice care. Robison’s father, Jonathan, 71, also is in poor health, which meant that most of the caregiving responsibilities fell to the couple’s only child.
While fulfilling her responsibilities to her aging parents, Robison was often unavailable to her own family due to exhaustion and physical absence. Not only did she pile up a hefty amount of credit card debt traveling, the freelance designer also lost income while tending to her mother’s needs and spending hours on the telephone with nurses, social workers and family members.
The emotional and financial stress experienced by Robison and her husband, Ian Hargraves, 48, has become so common that social scientists describe their demographic as the “sandwich generation.” Typically between the ages of 40 and 59, these adults are raising children and caring for aging parents at the same time they are struggling to keep up with their own expenses and save for retirement.
Social workers who counsel families in crisis say the population of sandwich-generation families is on the rise with no signs of slowing down in light of parents living longer and more of their adult children waiting until they are older to start their own families, which could add up to a looming crisis for the next generation of retirees.
According to the latest research by Pew Research Center in Washington, almost half of adults in their 40s and their 50s have parents age 65 or older and are either raising a young child or financially supporting a child age 18 or older. And about 1 in 7 middle-age adults provide financial support to both aging parents and children.
The Pew survey was conducted three years ago with 2,511 adults nationwide, but the number of affected families has been growing for more than a decade, said Stefanie Small, a clinical social worker at Jewish Family & Children’s Services in Pittsburgh.
“The population of sandwich families has increased over time, particularly because children are getting married later and parents are having children later,” said Small, a 16-year veteran social worker who began working closely with Robison and her mother before the illness disabled the older woman.
Jewish Family & Children’s Services handles care management. Since Robison could not be around all the time, it was reassuring to her that social workers were visiting her parents once a month to talk about their situation and answer insurance questions.
“With her father already suffering from multiple sclerosis, Joy knew as an only child, she was better off planning ahead for her mother’s terminal diagnosis,” Small said. “The emotions I see caregivers experience most often is guilt and a lot of resentment, because often the child becomes the parent.
“But if the older adult and their adult children had discussed what they all wanted and needed when everyone was healthy, you rarely have a crisis because they planned.”
Part of the conversation involves the costs involved in the long-term care and if the parent will move in with the caregiver or maintain a separate home. Robison obtained a power of attorney from her mother to make medical and financial decisions on her behalf.
“One thing that is problematic with the sandwich generation is they reject the title of caregiver,” Small said. “They see themselves as being good children. But they are caregivers and they don’t take advantage of all the services available for caregivers, such as private duty in-home care. These are paid people who do personal care, transportation and companionship.”
Care management is not covered by health insurance. As a nonprofit, Jewish Family & Children Services charges $75 an hour.
Private care management companies often charge $100 or more an hour.
“We get a lot of spouses taking advantages of these services,” Small said. “A lot of children feel they must do these things themselves.”
The financial pressure faced by caregivers in the sandwich generation often takes a heavy toll on their ability to retire.
Michael Fertig, a vice president at Fragasso Financial Advisors, said a 50-year-old head of household earning an average salary of about $50,000 is unlikely to be able to put aside enough savings to retire at age 65 if sandwiched between raising children and supporting parents.
“Unfortunately, they’ll have to work longer or redefine what retirement is going to look like,” Fertig said. “That could mean living on less or going into some kind of part-time work to continue some type of income stream in pseudo-retirement.”
He recommends asking a financial adviser to lay out what the retirement picture looks like if they put a specific amount of money in a retirement account on a regular basis. Then see how those numbers would improve if they were to add 10 percent more.
“They realize what sacrifices they need to make now or later in retirement,” Fertig said. “It’s not an easy topic to bring up. There’s a lot of emotion involved. But sometimes seeing the financial projections on paper can be an ice-breaker.”
Meg Stoltzfus, a manager in the office of work, life and engagement at Johns Hopkins University in Baltimore, said one aspect of her work is helping university staff and faculty members navigate challenges while they are care for aging family members.
Their responsibilities can include transporting parents to doctor’s appointments to staying up late at the emergency room the night before work. Sometimes employees have to negotiate with their managers for more flexibility.
“Many caregivers also pay for some of the caregiving needs to be met,” Stoltzfus said. “Not only are they not able to make more money, they are spending more in their role.”
As new career opportunities come along, many caregivers don’t have the emotional capacity or time to take on more challenging roles, even if it would mean more pay. Lower-income workers might not be able to take extra shifts or work overtime.
And caregivers may be hesitant to reveal this aspect of their life, Stoltzfus said.
“If they are seen as someone with a lot of personal issues, they may not be given important projects and opportunities,” Stoltzfus said. “But by not being forthcoming, they could lose out on some opportunity for support because they may have a sympathetic manager or team. They may also miss out on benefits offered by their employer for caregivers.”
She said some companies offer referrals and counseling through employee assistance programs. Others may offer a home-care providers for a limited number of days. Some also pay for consultations with aging-life-care professionals who can help a family map out what needs to happen in terms of long-term care.
Those services may be offered at larger companies, she said. “But small companies can offer flexible work schedules and telecommuting, which can be just as helpful to caregivers.”
Robison and Hargraves have two children, a son, 9, and a daughter, 6. Hargraves works at the Mayo Clinic in Rochester, Minn., as a service designer. Robison is a freelance designer of print and brand strategy work.
While her job gives her flexibility, it was difficult to build a clientele in Minnesota when she was always in Pittsburgh or preparing to make another trip.
“I worked through both my children’s babyhoods,” Robison said. “But I feel this health care challenge was way more difficult.
With parental health care, there’s a 24-hour aspect of not being able to make plans and know you won’t have to change plans. You’re in crisis mode all the time.”