Role Reversal: Millions of Kids Are Caregivers for Elders. Why Their Numbers Might Grow.

High school senior Joshua Yang understands sacrifice. When he was midway through 10th grade, his mom survived a terrible car crash. But her body developed tremors, and she lost mobility. After countless appointments, doctors diagnosed her with Parkinson’s disease, saying it was likely triggered by brain injuries sustained in the wreck.

At 15, Yang, an aspiring baseball player and member of his school’s debate team, took on a new role: his mother’s caregiver. Researchers estimate that Yang, now 18, counted among at least 5.4 million U.S. children who provide care to an adult in their home. As state officials eye federal Medicaid funding cuts that could drastically reduce home care services for those who are disabled or have chronic health conditions, many predict that number will rise. 

That’s bad news for kids: studies show that when young people take on care for adults with medical conditions, their health and academic outcomes decline. At the same time, their loved ones receive untrained care.  “It all fell to me,” said Yang, whose sisters were 9 and 10 at the time of their mom’s accident, and whose stepdad worked nights. His grades fell and he quit after-school activities, he said, unable to spare the time. 

Early on, Yang found reprieve from a personal care nurse who gave them supplies, such as adult diapers, and advice on items to purchase, such as a chair for the shower. And for about a year, Yang was able to work for a personal care agency and earn $1,000 a month caring for his mom — money that went toward her medication and family needs.  Click here to learn more.

Two Patients Faced Chemo. The One Who Survived Demanded a Test To See if It Was Safe.

JoEllen Zembruski-Ruple, while in the care of New York City’s renowned Memorial Sloan Kettering Cancer Center, swallowed the first three chemotherapy pills to treat her squamous cell carcinoma on Jan. 29, her family members said. They didn’t realize the drug could kill her.  Six days later, Zembruski-Ruple went to Sloan Kettering’s urgent care department to treat sores in her mouth and swelling around her eyes. The hospital diagnosed oral yeast infection and sent her home, her sister and partner said. Two days later, they said, she returned in agony — with severe diarrhea and vomiting — and was admitted. “Enzyme deficiency,” Zembruski-Ruple texted a friend. 

The 65-year-old, a patient advocate who had worked for the National Multiple Sclerosis Society and other groups, would never go home. 

Covered in bruises and unable to swallow or talk, she eventually entered hospice care and died March 25 from the very drug that was supposed to extend her life, said her longtime partner, Richard Khavkine. Zembruski-Ruple was deficient in the enzyme that metabolizes capecitabine, the chemotherapy drug she took, said Khavkine and Susan Zembruski, one of her sisters. Zembruski-Ruple was among about 1,300 Americans each year who die from the toxic effects of thee pill or its cousin, the IV drug fluorouracil known as 5-FU. 

Doctors can test for the deficiency -- and then either switch drugs or lower the dosage if patients have a genetic variant that carries risk. The FDA approved an antidote in 2015, but it’s expensive and must be administered within four days of the first chemotherapy treatment.  Newer cancer drugs sometimes include a companion diagnostic to determine whether a drug works with an individual patient’s genetics. But 5-FU went on the market in 1962 and sells for about $17 a dose; producers of its generic aren’t seeking approval for toxicity tests, which typically cost hundreds of dollars. Doctors have only gradually understood which gene variants are dangerous in which patients, and how to deal with them, said Alan Venook, a colorectal and liver cancer specialist at the University of California-San Francisco.  

Despite growing awareness of the deficiency, and an advocacy group made up of grieving friends and relatives who push for routine testing of all patients before they take the drug, the medical establishment has moved slowly.  Click here to learn more.