Jasmine Pearlman was close to earning her associate's degree in 2004 when her mother, Celeste, developed non-Hodgkins lymphoma. The diagnosis dramatically changed the 21-year-old Jasmine's life.
In between classes, she escorted her mother to the oncologist, to radiation and chemotherapy treatments, and to checkups with her primary-care physician. She oversaw her mother's 15-pill daily regimen and assumed household responsibilities such as paying bills, grocery shopping and cleaning the apartment they shared in the Bronx in New York City. Her grades suffered, and she struggled with depression. Somehow, she managed to graduate.
In 2005, Celeste's cancer went into remission, but her health continued to decline. “She was just worn out,” the younger Pearlman said. “She needed me to take over everything.” And Pearlman was happy to do it, even as others urged her to live a more independent life.
Today, the younger Pearlman remains the duo's breadwinner. She continues to manage Celeste's medical affairs, which in 2014 involved five procedures, including a partial amputation related to a chronic condition.
In addition to worrying about mixing up pills and dosages for her mother's daily medications, now down to eight, she learned largely on her own how to clean post-surgical wounds, prepare her mother's foot for a partial amputation, and inject her mother with blood thinners—in her stomach.
“When I did her shot, she screamed,” Pearlman recalled. “I'm a novice to these types of things.”
Pearlman's experience, not unusual for someone caring for a family member, is the kind that is bolstering growing calls in the U.S. for providers and policymakers to formally recognize home-based caregivers' vital role in healthcare and to integrate them into care-coordination processes. Researchers, policymakers and healthcare providers are slowly recognizing that with training and education, these caregivers will be better equipped to handle the increasingly complex medical tasks being asked of them, less likely to make mistakes or cause or suffer injuries, and more likely to detect potential problems, such as the early signs of an infection.