'A socially isolated group’: Millennial caregivers are increasing, but they face unique challenges

When Sophath Chum was 15, his mother suffered a stroke.

His father decided to put her in a nursing home in West Chester. But during follow-up visits, Chum noticed bruises on his mother’s body.

So three years ago, when his father began needing more care due to post-traumatic stress disorder from fighting in the Cambodian Civil War during the 1970s, Chum immediately ruled out putting him in a nursing home.

“There’s no trust,” he said. “It’s just not something that Asian families do.”

As the baby boom generation ages, 10,000 Americans turn 65 daily. This population is driving a rising demand for family caregivers, along with the high cost of senior living and in-home care. Millennials are stepping in to fill that gap, and in many cases, make sacrifices to do so.

AARP, formerly known as the American Association of Retired Persons, estimated in a 2018 report that as of 2015, there were 40 million family caregivers. One in four caregivers is between ages 22 and 37. More than half of them identify as Hispanic or Latino, African American or Asian American — communities where multi-generational homes are common.

On average, millennial caregivers spend about 21 hours a week on caregiving, or the equivalent of a part-time job. One in five provides at least 40 hours a week.

Research shows that caregivers are often more at risk than their non-caregiving peers for mental-health issues. Estimates show that between 40% and 70% of caregivers have clinically significant symptoms of depression. They also deal with higher levels of stress.

On top of that, millennial caregivers face a unique set of challenges. Many juggle caregiving with their education, student debt, career aspirations, dating, or starting a family of their own.

“This particular group of caregivers is socially isolated,” said Rita Choula, AARP’s director of long-term supports and services. “Most of their friends are not caregivers, and they often don’t feel comfortable putting their burdens on their friends or employers.”

More than half of employed millennial caregivers indicated that their caregiving responsibilities affected their work in significant ways, such as going in late, leaving early, or cutting back on hours. The AARP report found that when compared with boomers and Gen Xers, millennial caregivers more often received performance and attendance warnings, were turned down for promotions, or stopped working entirely.

“In my experience, employers aren’t very understanding when their employees have to care for a family member,” said Jill Lipschutz Snyder, a clinical social worker who runs a support group for caregivers in Center City. “Caregiving is more vague — like if someone says, ‘My mom is really sick,’ then their boss might say, ‘That’s life, that’s going to happen’ — versus if they tell their employer that they’re having a child, it’s something to be celebrated.”

Lipschutz Snyder said that her millennial clients in caregiving roles often feel obligated to fly home more regularly, if they live in other cities, or move home if their parents or grandparents face a serious illness. They also tend to be more proactive.

“They’ll do their research and urge their parents to try things like acupuncture or alternative medicine,” Lipschutz Snyder said. “That’s what you would expect with younger people, like, ‘We want to do something!’ They don’t want to sit with the fact that someone is dying.”

When Malcolm Haynes was a junior at Temple University, his mother, who suffers from depression, was evicted from her Germantown apartment. As his friends focused on graduation, Haynes spent many hours scouring websites for housing options for people with mental illness.

“Caregiving is one of those challenges that you don’t think a 20-something, a 30-something has to deal with,” said Haynes, who is now 33. “The image of a caregiver is someone who’s a little bit older, who has that flexibility professionally and financially to take care of a loved one.”

In 2015, Haynes’ mother was diagnosed with lung cancer during his last year of graduate school at Pennsylvania State University. He spent much of that year driving back and forth between State College and Philly for her surgeries and chemotherapy treatments.

“It’s been challenging for the last 10 years,” said Haynes, who now works in Baltimore as the city health department’s chief of staff. “Most people think about taking care of their folks when they’re in their 40s or 50s. But it’s important to have our experiences out there and told, as well, so I don’t feel as isolated in addressing this challenge as I do now.”

Ariyana Bryant, a 19-year-old Delaware State University sophomore studying nursing, was wrapping up her senior year of high school when her grandmother, a former Philadelphia School District teacher, was injured while trying to break up a fight. Bryant, who describes their relationship as more of a “mother-daughter one,” took over responsibilities like cleaning the residence they shared in Ardmore and helping her grandmother move around.

Bryant also dealt with financial stress — her grandmother’s workers’ compensation payment covered the bills but wasn’t enough to help Bryant pay for tuition. She applied for and received a $5,000 scholarship from Pond Lehocky Stern Giordano, the largest workers’ compensation firm in Pennsylvania, which relieved some of the pressure.

“Coming into this semester, I didn’t know how I was going to pay for it,” Bryant said. “I didn’t know if there was going to be enough money to spare for me. Most people my age don’t have to worry about things like that, because their parents can take care of themselves. It’s a lot of pressure, to have to figure out what you want to do with your life but take care of your family, too.”

Four years ago, Rean Lay put his plan to study nursing at the Community College of Philadelphia on hold to care for his parents. The youngest of 10 children, Lay said that taking care of them fell naturally to him. His mother died in August 2017.

These days, Lay, 36, cooks his 72-year-old father’s meals, takes him to his dialysis appointments, organizes his medication, and helps him get around the house. Lay gets a stipend from the Philadelphia Corporation for Aging, which provides financial support on a sliding scale based on household income and reimburses caregiving expenses, such as medical supplies and home modifications.

The money can’t compensate, though, for the emotional toll of caregiving.

“It’s been frustrating to deal with someone who’s always complaining about things not being right,” Lay said. “I’ll cook three meals a day, but I don’t cook like my mom. I’ll spend an hour on a meal but my dad is not even touching it. It’s stressful. But then I just think about how I was a baby once, crying all the time, and that was when he took care of me.”

His older sister, Roum Lay, has also been involved in her father’s care since she was 13 by translating at doctor’s appointments. Lay, who works with the Cambodian Association of Greater Philadelphia, said that she often helps clients who are already taking care of their parents get paid to do so.

“With Cambodian families, it’s kind of an obligation to be your parent’s caregiver,” Roum Lay said. “Your parents have cared for you until you’ve grown to be your own person, so why can’t you be the caregiver now that they’re elderly and can’t do anything for themselves? It’s the right thing to do.”

Chum, now 34, shares an apartment with Van Chhornn Pheach, his 75-year-old father, in Eastwick. Pheach was recently diagnosed with dementia. As his father’s primary caregiver, Chum is in charge of not only running their household, but also such things as making sure Pheach takes his vitamins, monitoring his diet, and translating during doctor’s appointments. He is paid as a home health aide through Aurora Home Care, an agency based in Feasterville.

“My dad is still very independent,” Chum said while watching Pheach cook lunch in the kitchen they shared. “He still bathes himself and keeps his room meticulously organized. He used to tell me that even as a young man, he never depended on anyone.”

On warm days, Chum takes his father for walks in parks and museums around the city. They also go to grocery stores together because Pheach likes to cook traditional Cambodian dishes. Sometimes, Chum drives Pheach to Home Depot and Lowe’s to look at gardening equipment because he enjoyed growing vegetables at their old house.

“He has good days and bad days,” Chum said. “On good days, he’s like my best friend.”