JUNIOR ACHIEVEMENT
When a teenager becomes his mother's main caregiver, he takes on adult responsibilities and earns adults' respect
BY:ANNE HOSANSKY
photography by Fran Collin
Childhood changed forever for Shane Smith when he was only seven. That's when he and his brother Jamie, who was ten, found their mother crumpled on the bathroom floor. Being an artist, she told the children she wanted to paint irises on the wall and that they should bring her paints so they could help. "I was just a kid. I didn't understand she was trying to protect us," says Shane, who's now 16. The truth was that Mary Smith was unable to stand up. She thought she'd twisted her knee, but the far more serious diagnosis was multiple sclerosis.
That was in 1998 and the South Windsor, Connecticut, family mobilized around her. Since Mary's husband Jeffrey works for New England Financial in West Hartford, half an hour away, and doesn't get home until after the dinner hour, both kids filled in as caregivers. Shane remembers a day when he was eight and his mother said her hands were shaking too much to give herself an injection, so he'd have to do it. "I told her I didn't know how," he says. "She told me, ‘Put ice on my leg, poke the needle in and push down.'" He quickly became adroit at this, as both boys and Jeff practiced on oranges.
The daily care of his mother, now 46, mainly became Shane's responsibility when Jamie entered high school and was busy with the basketball team. Last autumn, Jamie left for Merrimack College in North Andover, Massachusetts. Asked if it's harder without his brother, Shane gives a sibling response: "There's less to clean."
Shane, just completing his sophomore year at East Catholic High School, keeps up a heavy schedule at home. Besides giving Mary her daily meds, he brings her a water basin and soap so she can wash herself; cleans the house, knowing how important that is to his mom; cares for their dog, Spanky; and cooks most of the dinners—usually pasta. "There's only so much I can teach him," Mary jests.
Jeff, 45, gives Mary breakfast and divides the 20 meds she takes each day into small cups for Shane to dole out to her. Since Mary's also diabetic, she requires insulin. If it's a day when her eyes are blurry or her hands are shaking, Shane measures out the insulin for her.
Three times a week a visiting nurse gives Mary lunch. Other days Jeff goes into work late so she won't be alone more than a few hours before Shane gets home at two. "The first words out of Shane's mouth as he comes through the door are," Mary jokes, "‘Have you eaten?' and ‘Yes, I'm washing my hands.' He knows I insist on clean hands."
Shane does his homework in school during study hall, but he says, "there aren't many chances to do after-school things. I come right home. I don't want to put extra pressure on my parents. I'm here to keep an eye on her." That can include calling 911 when Mary has a seizure. Last year, when she had trouble breathing, Shane called the police, making sure to show the officers where her meds were hidden. Mary worries they will be stolen if the house is robbed.
Shane keeps a social life going by inviting friends to the house. "That's good in every sense," he says, "I can hang out with them and also be with Mom." His friends "love her," he says proudly. He enlisted their help when a new sofa was delivered. The boys tried placing it in different parts of the family room. Since Mary is bedridden and was unable to get downstairs to see it, they took pictures of each placement with their cell phones and kept running upstairs to show her the photos, asking which arrangement she thought best.
Shane says he has a trade-off with his father. "I'm on call Monday through Thursday. On Fridays and weekends, Dad does the grocery shopping and throws a load into the washing machine." Jeff also coaches Shane's town league basketball team.
Mary's brothers and sisters-in-law also try to bring some normalcy into Shane's life. "They help most by making time for me," Shane says. His uncle, Richard Conran, who lives about 40 minutes away in Hamden, Connecticut, takes him to Red Sox games, since both are fervent fans; his mom's other brother, Phillip Conran, of West Hartford, takes him fishing. Their wives, Mary and Marcia, drive him to games or to shop.
Though he tries to sound upbeat, Shane is aware of the progressive nature of his mother's illness. "The first two years she could still get around with a cane, but now she's stuck to the bed and wheelchair," he says. Last year, Mary was hospitalized nine times at St. Francis Hospital in Hartford. Shane sat by her bedside, talking to her, as did Jamie, who rushed back from college then and now comes home whenever he can. Both boys understand the therapeutic benefits of talking. Mary recalls one time when Shane kept asking her about her childhood and "what I'd been scared of." They talked for six hours.
At home he sits by her bedside, distracting her from pain by telling her about his day or reading school essays to her. "One time I was assigned some book and I read it to Mom to make sure I did the assignment," he says.
He also helps in activities she avidly attempts, such as her wish to make a birthday cake for her neurologist, Dr. Gary Belt ("The best neurologist in the world," she insists). Mary told Shane what ingredients she needed, and mixed them in bed by hand. Shane baked the cake, and one of Mary's friends transported it to the astounded doctor. She later heard that Dr. Belt told everyone to "appreciate every bite because this cake was made with tender loving care."
Shane admits he gets discouraged. "I cheer myself by watching sports on TV or by calling friends. They're my best outlet." But, Shane says, he's careful not to let himself sound negative. "It's important to act positive with friends, so they'll want to be with you."
He goes to their Catholic church regularly, and confides that he often silently asks, Why did we get put in this situation? Religion gives him the comfort of knowing that "if the worst happens, Mom and I will re-meet."
Asked about different aspects of caregiving, Shane says doing chores is the easiest part. The hardest is seeing his mom in pain. It's also hard, he says, to "have to make decisions for her. She doesn't realize she can't do things she used to do."
That's what happened last Christmas Eve. The extended family customarily gathers in his grandparents' apartment. "But it's small and crowded. When it gets hot, Mom gets tremors and seizures," Shane says. "So I had to play Bad Cop. I laid it on the table and told her she just couldn't go. Mom cried, but she said I was right."
The MS Society is a big part of their lives. "Meetings helped me when I was little and didn't understand," Shane says. "But, as a teenager, it's your responsibility to figure things out."
At April's annual MS Walk, both boys were Junior Ambassadors. Shane set up a table in school where people could make contributions or pledges. Jamie used the Internet to contact high-school alumni. They both joined in the walk, along with Jeff (and Spanky!). Mary, an MS Society Ambassador, greeted people from her wheelchair. The family raised over $3,000. Shane also helped Mary make cookies with M&M's spelling out LOVE MARY and HOPE.
"Hope," they say, "is our family motto."