The drive to protect our children ― to help prevent falls, ease cuts and scrapes, and deflect nasty experiences ― is at the core of parenthood. It’s baked in to the classic parental desire to “kiss it and make it better.” Yet if carried too far, to the point where we don’t level with children after a family member or the child himself is diagnosed with cancer, this drive can actually inflict lasting pain.
Caregivers for children when there’s cancer in the family or when the child himself is diagnosed need to keep in mind three lessons that both experienced cancer caregivers and oncology social workers cite:
1. Don’t overprotect kids.
Children are remarkably sensitive and observant, so it will be hard to hide your emotional and behavioral reactions to a cancer diagnosis. They notice when there are more whispered conversations, or more trips or calls back and forth to the doctor’s office, or more parental time surfing the internet with a furrowed brow. If they’re not told what’s going on, children will fill the void with imaginings that may be worse than reality.
Fred Rogers, who became famous for Mr. Rogers’ Neighborhood (his American TV show), once said that levelling with kids about important developments, especially when they are serious and potentially life-threatening, reaffirms their trust in their parents:
Anything that’s . . . mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.
You certainly don’t have to share all of the details or to do so all at once. Yet if you consider how you might feel if you were in your child’s shoes, you might be better able to decide how much information, in what form, might best help each child understand what’s happening in the household. It’s not easy, but it’s worth the effort to sustain their trust that you’ll always tell them the truth.
Children may even be able to contribute to a loved one’s last weeks of life by demonstrating ongoing affection and attentiveness. The message when you make such interactions possible is that “Uncle Artie may not live much longer, but he loves you and loves being with you.” What better way to introduce a child to one of life’s most important events and to replace potential fear of the unknown with memorable peaceful and loving moments?
2. Try to preserve children’s normal routines.
Structure is important in any child’s life because it brings predictability and reduces anxiety and insecurity. On the other hand, cancer injects uncertainty in ways that may look minor to adults but may really matter to children.
For example, the parent who typically gets the children ready for school or bed or who ferries the kids to and from extracurricular activities may face schedule conflicts because of immovable medical appointments or sheer treatment exhaustion. When this happens, it’s important to explain to the children why the schedule is now in flux and who will be filling in—ideally on a regular basis—when that parent is unavailable.
As a caregiver or cancer patient, surround yourself with a network of supporters to make such back-up teamwork possible. The more you can treat the change as a matter-of-fact shift of responsibilities, the more the children will understand that adults who care about each other always trade off roles in the face of illness or other scheduling conflicts.
For children and adolescents who are in the midst of cancer treatments that disrupt normal school-based routines and relationships, finding ways for them to continue to interact with their friends, so as to avoid isolation, will reinforce friendships and keep them “in the loop” with evolving social developments. Doug’s mom even arranged for her teen-age son’s best friends to be with him (despite scheduled school exams) when he died. It’s a fond memory for her to know that they shared her love for him, and knowing that their presence mattered keeps him alive in their minds and hearts.
3. When one child is in treatment, don’t neglect healthy siblings.
Cancer is notoriously greedy with caregivers’ time, attention, and emotional energy, especially when one child is in treatment and the prognosis is uncertain. It’s too easy for parents to focus all of their waking energy on the sick child, assuming that other family members can fend for themselves for a while.
Some families faced with this challenge are fortunate that older siblings may call attention to themselves. One teenage girl whose brother was fighting Hodgkins lymphoma actually asked, “Mom, do I have to get sick too to get your attention? Because I’m not here anymore.” Her request led her mother to set aside one night a week when she and her daughter would do something together (go to a movie, shopping, or an activity with her friends). Fortunately this child was in tune with her emotions and communicated openly with her parents. Fortunately too, her brother is now cancer free over 20 years later.
Other parents find that when they ask the well children how they’re holding up during such a period, they say,“I’m fine.” Because this is the answer that stressed parents would like to hear (given their limited time and energy to cope with the alternative), you may want to consider that such an answer might actually be masking kids’ reluctance to share their real emotions at a time of obvious parental stress. If you arrange age-appropriate support channels for the healthy children – perhaps among the child’s already-familiar school resources or at a local kids support program – you may be creating an important “fail-safe” setting in which healthy children can acknowledge and release some of the pressures they’re feeling.
A legislative advocate with the American Cancer Society’s Cancer Action Network, Deborah J. Cornwall is the author of Things I Wish I’d Known: Cancer Caregivers Speak Out and Things I Wish I’d Known: Cancer and Kids.