A teenager’s chronic illness or disability can’t help but disrupt the lives of everyone in the household. The question is, to what extent will you let it intrude?
Try not to let your child’s health problem color every aspect of family life, particularly your marriage. Allow yourselves time away from your caretaker roles. Go out to dinner or to a movie—and turn the conversation to topics other than your teenager’s problems. Take a vacation now and then—and don’t feel guilty about it. Arrange for a caretaker or a family member knowledgeable about your child’s condition to be available while you are away. Being good to yourselves will provide the needed emotional and physical energy necessary to give your ailing youngster the love and support that she needs.
All caregivers, though, feel overwhelmed at times by the immense responsibility of overseeing a child’s medical care. When we feel ourselves being swallowed up by stress and physical fatigue, our minds often fill with worry, anger, sadness—even guilt—that we somehow are responsible for what’s happened.
If you feel on the brink of burnout (and it happens to the best of parents), don’t hesitate to get some help. In addition to accessing the mental-healthcare system, consider joining a support group for parents of children with a chronic illness or disability. These groups can provide a safe haven in which to voice frustrations, draw encouragement and share practical information about how to ease the burdens of caring for a sick teenager. Nowadays, you don’t even need to leave your home to find a support group; many if not most of these organizations have established on-line support communities for the many parents who otherwise would not have the time to attend in person.
One piece of advice you’ll almost certainly take away from a support group is the importance of not neglecting your other children. So much energy gets channeled into caring for the youngster who is chronically ill that it’s easy to overlook their needs. Above all else, “Just appreciate that this isn’t how everybody else is growing up,” advises Dr. John Rowlett, an adolescent medicine physician living in Savannah, Georgia. “The other kids at school don’t have a brother or sister who’s dying from cardiomyopathy and can’t get a heart transplant, or has cancer, or another chronic illness. They get to go on family vacations, and both their moms and dads can show up at school functions, while these kids don’t.”
Younger siblings in particular sometimes conclude that they’re somehow to blame for their brother’s or sister’s misfortune. That must be why Mom and Dad are ignoring me. Another common pattern is for older siblings to act out, out of resentment for the attention being showered on the patient. This problem is compounded when healthy siblings are overburdened with new responsibilities. It is reasonable for parents to expect everyone to pitch in around the household and take on additional chores, but kids should never be thrust into a parenting role.