When Parents of Children with Cancer Become Caregivers
Advocacy When a child is diagnosed with the blood cancer, leukemia, every aspect of the family is impacted.
“Shock, anger, guilt, fear, anxiety and sadness,” says Stacey Koleszar, information specialist at the Leukemia & Lymphoma Society Information Resource Center. “It’s a roller coaster of emotions.”
Managing emotions is challenging, but try to deal with feelings moment by moment.
“Focus on the here and now,” says Koleszar. “If you get too far ahead of yourself, it gets too difficult in the beginning.”
While the biggest concern for parents is the child’s health, they also worry about finances like insurance, the child’s education and how to tell the child and siblings what’s going on.
All of these concerns are at the heart of the special circumstance of parents as caregivers.
“‘Tell them what you expect to happen so when it happens, they’re less scared.’”
“It’s an unusual role for the parent to have to be both a parent and a medical caregiver,” says Koleszar. “You feel like as a parent, your job is to protect your child and this is one thing you can’t protect your child from.
“You couldn’t have prevented it. There’s nothing you can do to stop it. The best thing you can do is get them the best medical care available.”
Parents have the important job of explaining diagnosis and treatments to their sick child and the rest of the family.
“I always tell parents, ‘you know your child best,’” says Koleszar, encouraging talking to kids on a level they understand.
“Tell your kid what they can expect,” she says. “If you know they’re going to lose their hair, you need to talk about it. If you know the medicine is going to make their tummy hurt or make them tired, tell them what you expect to happen so when it happens, they’re less scared.”
Coping with cancer
It’s normal for some kids to feel withdrawn while others may need extra reassurance from everyone around them, including their parents.
“The child’s treatment involves new people and experiences and sometimes can be scary,” says Koleszar, reminding patients and parents they’re not alone in their journey.