En español | Heather Garner can't begin to imagine what her life would be like if she were a full-time student. As a full-time caregiver for her husband, Garner's life is tough enough just a few weeks every year when she must travel across New York state to take a series of continuing education classes to remain a certified assessor, yet somehow still provide caregiving for her husband, Mike.
Mike almost died four years ago when he became ill with pancreatitis and was in a coma for weeks. At age 45, he has no spleen and faces potentially life-threatening issues on a daily basis. His medical debt exceeds $500,000. Heather, 43, acts as his full-time caregiver even as she works a full-time job as an assessor and must take continuing education classes to keep her assessor's license. Since they can't afford to pay a caregiver, she brings her husband along on these mandatory training trips. Mike may sit in the car for hours while Heather's in class — and they hope that no medical emergency comes up during that time.
"If only there were waivers for people like me,” says Heather. If her licensing requirements could be modified to taking classes every other year, for example, that could make their lives so much easier, she says.
Complex world of student caregivers
Welcome to the often uncomfortable, unpredictable and — for most of us — unimaginable world of student caregiving. Some 5 million adult students attending colleges, universities or trade schools also are caregivers of adults — typically their parents or grandparents — and while most of these student caregivers need resources and flexibility, only a fraction of them receive any, according to a landmark AARP 2020 student caregiving study of 400 adults completed in June. These student caregivers — many of whom also work at least part-time — must balance the complexities of significant academic demands with work requirements and unpredictable caregiving duties
"Most universities don't even think that students have caregiving responsibilities,” says Dana Burr Bradley, dean of the Erickson School of Aging Studies at the University of Maryland Baltimore County. “It wouldn't even be in their mindset."
Changing that mindset is critical, according to the report, because the well-being of millions of adult student caregivers — and their loved ones — is at stake.
Emotional strain and missed deadlines
The numbers are staggering.
Seven in 10 student caregivers say their caregiving has impacted their academic performance to at least some extent; 6 in 10 say it has affected their financial ability to pay for school. The most common impacts are emotional strain and distraction, yet about 1 in 3 have difficulty meeting deadlines or attendance requirements. Some 86 percent of student caregivers work at least part-time, which only adds to the strain.
"We know that caregiving can be emotionally, physically and mentally taxing,” says Jean Accius, senior vice president, AARP Global Thought Leadership. “But there are very few policies within the world of higher education that assist student caregivers — particularly those who are caring for an older adult."
Instead, according to the AARP report, many college administrators, college professors and even college students themselves appear to turn their backs on student caregivers. Nearly one-quarter of student caregivers interviewed said they felt “discriminated” against because of their caregiving responsibilities. And some 43 percent of student caregivers kept their caregiving responsibilities private, more than half of them because they believed their school or institution would not understand their situation.
While the majority of student caregivers say they have told someone at their school that they are providing care for someone else, most of the time that person is a fellow student. Only 1 in 3 say they have informed their instructor or another staff member. Of those who did apprise instructors of their caregiver status, most said they did receive support, but the actual level of help seems to be lacking because only 1 in 3 said their instructor was “very supportive."
Addressing the issue head-on
What needs to be done?
First, Accius says, schools need to acknowledge that the problem exists.
Next, colleges need to train staff and promote whatever resources they have available for student caregivers. “Some schools provide resources for students caring for minor children but they're not even thinking about students caring for older adults,” Accius says. These services could benefit not only students, but also university employees, he adds.
What student caregivers need most of all, he says, is more “flexibility.” This would require early identification of their caregiver status, then offers of flexibility on everything from extended deadlines on assignments to a better understanding of possible class-attendance issues. Also, he notes, schools may need to offer tuition reimbursement policies for student caregivers who have to withdraw from a class due to changing caregiving responsibilities.
Where to turn to for help
Then, there's the issue of where student caregivers should seek help on campus.
Fully 40 percent of student caregivers believe the best place is the counseling center. Some 39 percent say it should be through their school's financial aid office. Another 37 percent look to the Student Health Center. Some 32 percent go to their academic advisor. And 28 percent think their best option is to reach out to their instructor.
Accius suggests that the best first stop is often the student's academic adviser, who ideally would help develop a plan to reach out to additional campus resources.
Some universities are taking real action. At UMBC's Erickson School of Aging, Bradley estimates 60 to 70 percent of the students are primary or secondary caregivers. “The AARP report is a wake-up call,” she says.
As a result, the school recently sent a letter to professors, administrators, and staff proposing the establishment of a working group to directly address the issue of how to specifically assist such students.
"The hard work is in bringing the stories of student caregivers to light and then finding the right package of services to support them in their noble work,” Bradley says.
Back in upstate New York, Garner, the assessor, says that all she wants is a bit more flexibility, leniency and emotional support from the state's licensing office. “Until you have walked in the shoes of a caregiver,” she says, “it's almost impossible to understand."