USC students speak about caregiving experiences

At 29 years old and after her father had gone into cardiac failure, Susanna Mage left her New York City apartment — where she previously worked in the biotech pharmacy industry — to travel to her childhood home in Delaware to take care of him. 

“Because [his condition] was hospice, I knew he was dying, and I knew it wasn’t going to be forever,” said Mage, now a doctoral student at the Leonard Davis School of Gerontology. “I saw it as an opportunity to be there for my dad when he needed somebody. He really wanted one of his children to be there, so that didn’t really feel like a decision.”

In the month Mage spent taking care of her father, she never considered it “caregiving” until she decided to return to school and looked into gerontology programs with a focus on older care. Mage read books to better understand gerontology as “the next thing in our society that is in need of a revolution,” reached out to USC professors in the gerontology program and applied to USC.

Starting her doctoral journey in 2019, Mage moved to Los Angeles and began working under Kate Wilber in the secure old age lab at the Leonard Davis School of Gerontology. She connected with Donna Benton, the director of the USC Family Caregiver Support Center, and became involved with the center, which allowed her to connect with other young caregivers who shared similar experiences.

Last spring, Mage received a text from her mother’s friend who suggested she travel home to see her mother after she was hospitalized with a blood infection. Mage returned to Delaware for what she thought would be a weekend during finals week but ended up staying home to become a caregiver again.

While her professors allowed her to push her qualifying exams and continue taking classes remotely, Mage also balanced her role as a patient advocate for her mother’s routine hospital visits, dealt with the physical demands of carrying her mother’s wheelchair and remained in isolation with her mother to prevent the possibility of contracting the coronavirus.

“What surprised me the most is how physically demanding it can be to care for someone with limited mobility, how heavy a wheelchair is, how hard it is to put that into and out of a car and how many people would just stare at me struggle and not offer to help,” Mage said. “Nobody told me how to deal with it, they just said ‘Here is your mom, here is a wheelchair, have fun.’”

One out of every four people is a family caregiver, whether it be an adult child caring for a parent, a sibling caring for a sibling, a spouse caring for a spouse’s sickness over a short period of time or for a long term chronic illness, Benton said in an interview with the Daily Trojan. Benton also said the pandemic caused a lot of student caregivers to feel isolated, and the return to campus caused students to make difficult decisions surrounding whether or not to resume campus life.

“With the transition back to campus, for some students, they may be more inclined not to return to campus but do more Zoom classes and remain remote, because of the caregiving responsibilities,” Benton said. “For others, it was a hard decision, but they did come back to campus, which meant that the families had to find someone else to step in for caregiving.”

Hosted by the USC Family Caregiver Support Center, a panel of student caregivers, including Mage and Benton, came together to reflect and answer moderated questions about their experiences balancing school and caregiving. The event was moderated by Benton and Wilber, professor of gerontology, which took place following a screening of Michelle Boyaner’s documentary about caregiving titled “It’s not a burden.”

Ricardo Alonzo Ugalde, a panelist who graduated from Syracuse University in June, took care of his grandmother until she died of the coronavirus earlier this year. He said balancing school, work and caregiving responsibilities involved comprehensive decision making and little flexibility.

“It’s expensive and time-consuming,” Alonzo Ugalde said. “If you are a student, sometimes you have to choose whether you want to go to class or take your grandma to the doctor or [whether] you show up to work or pick up your grandma’s medication from the pharmacy.” 

For Alexander Gonzalez, a panelist and 2018 graduate, caregiving meant putting his strained relationship with his father behind him to efficiently adopt the caregiver role that included having the same conversations with him about eight times because of his father’s forgetfulness. When Gonzalez became a caregiver, he was a full-time student, part-time worker and had a two year old daughter. Oftentimes, Gonzalez said he felt trapped by the stress of his responsibilities.

“Once [my father] realized that I was doing some things for him now, he told me, ‘Oh, it’s so funny, now it’s like you’re my dad,’ and that was really hard for me to understand because I couldn’t even accept the role of caregiving,” Gonzalez said. “For me, it was just helping out my dad.”

Kelly Marnfelt, another panelist and doctoral student studying gerontology, became a caregiver at 12 years old when her mother was diagnosed with Parkinson’s Disease. Marnfelt said most people don’t identify as a caregiver when they assume the role without knowing what it means and feel overwhelmed by the obligations.

Marnfelt said the caregiver role can involve helping a loved one navigate the healthcare system, finding doctors or other professionals to come into their home or moving a loved one across the country.

“I started caregiving really young, and there was just a lot of confusion of trying to figure out and understand why it was so hard to get disability or hard-to-find resources, and over the course of 19 years, you start to learn that you can give care in all different kinds of ways,” Marnfelt said.

During the event, a young caregiver reached out to Mage, interested in becoming a student but unsure if her caregiver role would allow it. Mage said she plans to connect with the student to share her experience and show her that young caregivers can still have a life, even if they have to adapt it to another’s life. 

Along with support groups or connecting with other caregivers both through the USC Family Caregiver Support Center and through Facebook groups, Mage also helped start a peer-led support group for young caregivers to help cope with their situation and learn from others who have lived through the caregiving role.

“It was impossible to find a support group for young people, because the needs of young caregivers are really different from the needs of older caregivers and that has been really pivotal in my journey,” Mage said. “Being able to connect and know that I am not alone is almost enough to cure the social isolation.”

Correction: A previous version of this article misstated Ricardo Alonzo Ugalde as a panelist who graduated from USC in June, instead of a panelist who graduated from Syracuse University in June. The Daily Trojan regrets this error.