By Jenny Song
Loved ones often find themselves in the role of advocate and caregiver
By Jenny Song
Photographs by Danny Wilcox Frazier
When Karen Sultan’s 13-year-old son, Jamey, was diagnosed with acute lymphoblastic leukemia (ALL) in 2007, she worried about the side effects of his chemotherapy. Yet no one at the hospital ever discussed chemobrain or any other potential long-term cognitive effects of treatment with the family. “They also didn’t talk about how to cope, or how to help Jamey and his brothers cope with this awful diagnosis,” says Sultan, who lives in Rockville, Md. “They talked about treating the cancer—that was their focus.”
So Sultan, 41, surfed the internet and read books, pamphlets and journal articles to educate herself about the late effects and psychosocial issues associated with cancer treatment. When she learned from her research that Jamey’s chemo and steroid regimen would make it difficult for him to function at school, the fierce mom went to bat. She worked with her son’s teachers and school staff to create a specialized plan under Section 504 of the Rehabilitation Act and the Americans With Disabilities Act, spelling out the specific accommodations her son would need so that he didn’t fall behind in his studies. She also asked the school for accommodations to help him cope, like letting Jamey use a calculator in class because chemo affects his mental reflexes, and postponing his tests and quizzes when he’s on steroids because the drugs make concentration challenging.
As a teacher, Sultan knows how hard it is to keep track of 150 kids with different schedules, so she takes it upon herself to gently remind Jamey’s teachers about his needs. She has also taught Jamey to speak up for himself. “You need to be able to advocate for yourself because I’m not always going to be there,” she tells her son. While Jamey has made his teachers aware of his needs for a calculator or a cup of water, Sultan recognizes that most children who are sick—and even most adults—aren’t able to advocate for themselves. Caregivers need to step up on their loved one’s behalf, she says.
Championing Quality Care
One of the roles of a caregiver is to be an advocate, says Linda Goorin, a social worker at Beth Israel Deaconess Medical Center in Boston. Caregivers are usually the ones who bring up health concerns to physicians or who keep family members informed about what’s going on, she explains, and so advocacy is a natural extension of their role. “If it’s someone you love and care about, you want to be protective and you want to make sure they are getting the best possible care.”
There are a variety of ways in which a caregiver can be an advocate for a patient, says Scott Kennedy, of New York City, who lost his son to neuroblastoma in 2007. “It’s a lot of different things, whatever people feel comfortable with,” he says. For some caregivers, advocacy may involve keeping notes and records of the patient’s care. Others may focus on research, learning about the disease process and new therapy options. Or the caregiver’s role as an advocate could be as simple as tagging along to a doctor’s appointment so the patient has another set of ears to take in information.
When Hyun Kim, 30, learned that her father, Kwi Seok Kim, had been diagnosed with prostate cancer, she immediately began researching the disease and his treatment options. She e-mailed friends in the medical field, asking for support and advice on navigating the health care system. She also set up appointments for her father at various cancer centers in the Philadelphia area to get second and third opinions. Although Kim’s father speaks some English, his primary language is Korean. So Kim, who speaks English fluently, accompanied him to appointments and translated the doctors’ words into Korean.