Heroes at Home
Most days Jesse Englander cooks for his mother, empties her bedpan, washes her hair and, before turning in, makes sure the front door is triple-locked. Jesse is 14. Every night, after racing home to feed dinner to her invalid mother, an exhausted Maryrose Canellas catches a few hours’ sleep before starting another jam-packed new day. She is 18.
Jesse and Maryrose belong to a hidden community of teens who are primary caregivers for seriously ill single parents. In families that can’t afford home health care or nursing homes, these kids are housekeeper, medic and nurturer—while doing their best to keep up in school. Initially, they cling to hope for a happy ending. But most eventually are forced to face the cruel reality of their situations.
No one knows exactly how many teens are caregivers, though Professor Peter Arno of Albert Einstein College of Medicine estimates that there may be as many as half a million nationwide. They receive little outside help, and many families keep their plight hidden out of pride or fear that the authorities will break them up. For the kids the toll is high. “They’re being robbed of their childhoods,” says Gail Hunt of the National Alliance for Caregiving. But their reward is an intact family. In the pages that follow, meet four courageous teens who are shouldering responsibilities their peers can’t imagine.
A devilish sixth grader at school, an angel of mercy at home
This past school year, as a sixth grader at Brooklyn, N.Y.’s P.S. 99, Jesse Englander, 14, cultivated a tough-guy image. There was the time he detonated a stink bomb in Spanish class. And the time he was suspended for fighting. “I like that people are a little scared of me,” he says.
But when he talks about his mother, Rosemary Sumner, 48, a former administrative assistant who suffers from multiple sclerosis and is mostly bedridden, his tone abruptly softens. “I’ll do anything to help her,” he says. “I empty her potty, wash her hair, make sure she has clean clothes and buy feminine products. She didn’t mind giving birth to me, so I don’t mind helping her.”
Until school recessed for the summer, Jesse, an only child who says he hasn’t heard from his cabdriver father since his parents divorced in 1998, woke at 6 each day to make breakfast and lunch for his mom—two sandwiches left on her bedside table—before leaving for classes. In the afternoons he came back to the family’s four-bedroom house and checked on his mom and his 85-year-old grandmother Rose Sumner, who suffers from kidney disease. Then, following a game of dodgeball, he would cook a simple dinner before doing the dishes. His final task is always securing the family duplex. “I triple-lock the doors so that it’s like Fort Knox,” he says.
Whenever Rosemary ventures out of the house, which is rare, he is her escort. During a recent outing on a borrowed motorized scooter, the battery died halfway down the block, and Jesse pushed her back home. “There is so much love in his heart for me,” says Rosemary.
Although Jesse’s diversions are decidedly boyish—he regularly watches his idol, wrestling superstar “The Rock,” on TV—grown-up worries are never far from his mind. Last summer, when he began to disappear for hours on weekends, Rose suspected that her grandson was using drugs. In fact, Jesse had secretly taken a job at a local newsstand to earn extra cash. “How else are we going to pay the bills?” he asks.
With more than half of Rosemary’s $1,000 monthly social security check eaten up by rent, she can’t afford a nurse, but friends help with laundry and shopping. School officials also keep a close eye on Jesse, who repeated both fifth and sixth grades and was suspended several times last year, once for beating up a classmate who made fun of his mother’s illness. Still, John Gibson, an adviser from school who counsels him, believes that Jesse’s recently improved grades may mean that his prankster days are over. Says Gibson: “He’s just a boy being a boy.”
Since age 11, she has impressed her mom with the duties she juggles
Two years ago, when others at a summer camp for children of multiple sclerosis patients dreamed up fanciful inventions to help their parents, Radji Wilson told a counselor, “I am my mother’s invention. She doesn’t need anything else.”
Diagnosed in 1998, single mom April Wilson, now 34 and a counselor with the Jacksonville, Fla., sheriff’s office, at first worried that “even the most mature 11-year-old couldn’t take care of someone with MS. But we decided to see how it would go.” Since then the youngster has tended her mother, who still works but is quite weak. Recently they moved in with April’s mother, Ludella, 64, and sister Temal, 30, who is blind. Radji, now 15, cares for them all while keeping a B+ average and a social life. Her secret? Multitasking. While supper defrosts and laundry tumbles in the dryer, she irons or folds clothes. “It’s my job,” says Radji. “And it doesn’t do any good to think about what if things were different.”
Exhausted by responsibilities at home, she falls behind in school
In the past year 18-year-old Melissa Vallo of Albuquerque lost six family members. But the hardest blow came last November, when she helped to make the decision to end life support for her father, Milton, who was divorced from her mother, Alfreda, and suffering from alcohol-related liver disease.
At the time, Melissa was also caring for Alfreda, 42, who has a host of ailments stemming from liver disease (not alcohol related), and helping to raise her sister Autumn, 10. Now—while older sister Natalie, 21, is working at a nearby Wal-Mart—she also babysits her 9-month-old nephew Darian. “Where did my life go?” asks Melissa, who also cleans and cooks. “I grew up so fast.”
The stress has taken a toll. Because of poor grades and prolonged absences, Melissa didn’t graduate in May with her class at Cibola High School and has forfeited an internship. No one is more aware of those sacrifices than Alfreda, who despite her infirmity nurtures her daughter emotionally. “I have to keep her going,” says Alfreda, who persuaded Melissa to return to school after Milton’s death. “We’ve all been through a lot.”
Putting her mom’s needs first became a round-the-clock job
During her hardest times, Maryrose Canellas, 18, remembers when her mother sat in the front row at school plays, bought her party dresses and nursed her during a month-long hospital stay when she broke her leg as an 8-year-old. “My mom was Super-woman,” the Brooklyn teen recalls. “You never wanted for anything.”
That was before Esther Canellas, diagnosed with amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), was told by doctors in ’97 that she had no more than five years to live. When Esther’s husband, James, a social worker, died three days later of a heart attack, Maryrose, the youngest of three, became Esther’s caregiver.
Over the years ALS, which is incurable, took its toll. Talking and breathing became difficult for Esther, who, virtually paralyzed, was confined to a recliner in the neat two-bedroom apartment she shared with Maryrose and son Francis, 23, who works long hours as an accountant. (Son James Jr., 31, also an accountant, is married and lives nearby.) Before graduating June 1, Maryrose rose at 5 a.m. to feed and dress her mom before catching the subway to school. After classes she would rush home to help her mother to the toilet, feed her a snack, clean house, do laundry and cook dinner. At meals she cut her mom’s food into tiny pieces and helped her sip liquids through a straw. Said Esther: “She is my arms, my legs, my life. I would be dead without her.”
For two years Maryrose slept on a sofa next to her mother, calming her when she woke up gasping for breath. After a few sips of water and reassuring caresses from her daughter, Esther would doze off again. Often, by then “it was 4 a.m.,” says Maryrose, “and I had one hour to sleep.” Sometimes, she admits, “I’d think, ‘God, I wish she weren’t here.’ Then I would wake up and think, ‘What would I do without her?’ ”
Despite those very adult burdens, Maryrose’s only outward form of rebellion is a small tattoo of angel wings on her back. But Francis, who relieved her one night a week and one day on weekends, believes his sister has been hardened by the experience. “She doesn’t let anybody in,” he says. Maryrose admits that she has confided in only her closest friends. “Talking about my problems may make me feel better, but the less people know about me, the better,” she says. “I build a wall so that people can’t find out what is going on.” Instead, she lashes out at strangers who irk her—like the people she believed were staring at Esther during one foray to Kmart. “I’d say, ‘Excuse me, what are you looking at? My mom’s in a wheelchair. So what?’ ” With equal fierceness, Maryrose, who planned to continue caring for Esther while attending a local college this fall, always dismissed any suggestion that her mother might be better off in a nursing home. “You don’t do that,” she says. “She’s our mom, and she wouldn’t send us away.”
Sadly, however, on June 5—her mother’s 55th birthday—fate vetoed Maryrose’s plans. Esther was rushed to the hospital after a near-fatal heart attack. Though Esther has made remarkable strides since then, she will be placed in a Staten Island nursing home later this month.
Maryrose now seems resigned to the hard reality she fought against for so long. “My mom still has hope. She still thinks she’ll be able to come home,” Maryrose says. “But I don’t think that’s going to happen.”
Joanne Fowler in New York City, Zelie Pollon in Albuquerque and Steve Helling in Jacksonville