Heather Cariou was 6 years old when her sister was diagnosed with cystic fibrosis, at the age of 4, and given months to live.
"I felt angry at my sister for being sick, then guilty for feeling angry, for being healthy, for fearing she would die," says Cariou, who details a childhood dotted with her sibling's medical emergencies in Sixtyfive Roses: A Sister's Memoir
(McArthur & Company Publishing, 2008).
As she rode a roller coaster of emotions in an attempt to understand the illness affecting her family, her grandparents' presence became indispensable. She'd go on rides with her grandfather. She'd sip lemonade with her grandmother. "They just loved me," says Cariou. "I was never invisible at their house, while sometimes I did feel invisible at my house."
There are 8 million children in the U.S. who have a sibling with a chronic illness, says Cariou. When sickness strikes a family, constant caretaking may deplete parents' energy and shift their focus to scheduling doctor visits, updating friends, discussing treatment options and costs. As a grandparent, you can shine attention on a healthy grandchild lost in the shadow of sickness, says Cariou, and spend time doing the fun things overburdened parents might not be able to.
What You Are Feeling Is Okay
"My grandparents were simple farm people," says Cariou, "who didn’t delve into my feelings. Today, grandparents recognize that what they're experiencing when a loved one falls ill is similar to what a healthy grandchild experiences: Both want to help but feel a little removed, powerless."
Children may avoid bringing up emotions that seem disloyal. It's important to model both with your words and actions that all sorts of different feelings are acceptable to have, says Joan Schweizer Hoff, program services director at the Portland, Oregon-based Dougy Center for Grieving Children and Families. “Anger, joy, sadness, relief, anxiety… all feelings are legitimate.” Acknowledge what your grandchild is feeling, says Hoff, by saying something such as, “Sometimes I get angry because your sister and I can’t go to the movies like we did before she got sick. But I know she would if she could.”
Children may also worry that an illness is somehow their fault or fear becoming sick themselves, says Hoff, so informing them about the illness is imperative — to dispel worry. (Read Explaining Chronic Illness to a Grandchild for tips on doing so).
A Break From Sickness
Offer your well grandchild a temporary escape from the sickness that's unavoidable at home. Children may think having fun is no longer appropriate when a loved one is suffering. "You can't remind your healthy grandchild enough that it's okay to laugh, smile, and find happiness," says Hoff. “Every child whose loved one is sick has different needs that change daily. Provide activity options that include both quiet and active choices and let your grandchild decide what's best.”
A nature walk might appeal to a child who wants to talk about the illness. Another might prefer visiting a noisy, action-packed arcade to forget about sickness for awhile. Another may appreciate alone time to engage in a favorite hobby or see the latest movie. "Color together or create a joint picture," says Alice Aspen March, author of Attention: It's the Problem, It's the Solution (TAF Publications, 2000). "The time spent together here is what's important. It can let the healthy child feel safe and remind her she isn't responsible for the illness." This may be the perfect time to teach your grandchild a hobby you enjoy: knitting, woodworking, playing a favorite card game.
Whether you're fishing or shopping for a new pair of sneakers together, avoid making frequent calls home or checking your watch incessantly. This only keeps the illness close at hand — and close in your grandchild's mind. Allow yourself to have fun and your grandchild will follow the lead. As you're frolicking about, make a videotape, take photos, or let the child select a special souvenir so he can relive the memories later and share the adventure with Mom and Dad.
The Cheer-Up Squad
Suggest projects the two of you can do together to lift the spirits of the sick family member who's stuck in bed or too sick to visit friends. Make a collage of the sick person's favorite things. Pick out a frame and brighten the sick room by hanging it there, suggests March. Suggest that your grandchild gather get-well notes from his sick sibling's classmates. Or make a mix CD that's chock-full of cheery, feel-good songs, or tunes mentioning the sick person's name. Try giving your healthy grandchild a disposable camera, says March, and send him off to take photos of the patient's favorite places or people. Offer to develop the photos and help make a get-well album. Or, prepare a homemade meal together for tired and taxed parents.
Keep Friendships Alive
It's key to help a healthy sibling maintain peer friendships, says Robert Phillips, Ph.D., the psychologist who founded the Hicksville, New York-based Center for Coping. “Because they tend to devote so much time and energy to dealing with the illness, families can become socially isolated,” says Phillips. Offer to ferry your grandchild — who may feel selfish wanting to attend activities that feel frivolous compared with illness — to Scouts or music lessons. Open your home as a place where he can invite friends for playdates. Entertaining may add stress to a household drained by sickness and your grandchild may worry about a friend’s reaction to seeing a bedridden family member.
Family Fun Days
When planning happy times for your healthy grandchild, don’t overlook the need to spend time with parents and other siblings — not as a family dealing with an illness but simply as a family. Celebrate birthdays and host movie nights. As a grandparent, you can help maintain a degree of normalcy in a child’s life. “When illness enters the picture, scheduling events that involve the entire family is crucial,” says Phillips, “especially family rituals such as holiday dinners.”
See Explaining Chronic Illness to a Grandchild for additional tips.
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