Caring for adult children with cancer: 4 tips for parents
Learning that your child has cancer is never easy — no matter how old your child might be. But in some ways, managing their care can be simpler when they’re under the age of 18. After all, no one expects a 5-year-old to drive themselves to a chemotherapy infusion or a 10-year-old to decide whether or not they should join a clinical trial. Those responsibilities fall to the parents.
But what do you do when your adult child receives a cancer diagnosis? What’s the best way to support them then, at age 25, 35 or even older? We checked in with social work counselor Helen Wu for advice. Here are four tips she shares with the caregivers of adult children.
Learn the difference between checking in and taking over
It’s natural for parents to want to take their child’s pain away — even after they’re fully grown. It’s also normal to want to feel in control of a situation that is totally out of your hands. But resist the urge to burst into your adult child’s life and start managing their cancer treatment for them — especially if they already have a life partner or spouse.
“Decision-making is going to look very different between you and your adult child than it would between them and their wife or boyfriend,” explains Wu. “For one thing, they may already be used to dealing with challenges together, as a unit. And what you consider helpful advice might be construed as unwelcome meddling. For another, they are legally adults now, and they can make their own decisions. So, be mindful of that, check in with them first, and see what they might want from you.”
Wu notes that many parents tend to “infantilize” their adult children — or treat them as being both powerless and helpless — after a cancer diagnosis. This is particularly true when the child is still in their late teens/early 20s and/or hasn’t begun to live independently yet.
“Children need parents to be that kind of advocate for them when they’re really young,” she adds. “But once they’re old enough to start making their own decisions, it’s important to take a step back and let them. There’s a fine line between checking in and taking over.”
Honor your adult child’s wishes for control
One way to respect your adult child’s autonomy is to clarify which areas they want to retain full control over during their cancer treatment and which areas they might welcome your help in.
For instance, do they need help with food preparation but want to manage their own transportation? Would they like you to go with them to doctor visits, but remain silent while they ask all the questions? Or, do they just want you to act as a sounding board now and then so they can talk over issues with someone they trust before making their own decisions?
“Don’t assume that you know what they want, or take anything for granted, like that they’ll always want you to drive them to their appointments,” says Wu. “Adult children might want to make their own arrangements, so that their friends and partners can be a part of their support system, too.”
Instead, Wu suggests asking specific questions, such as:
Do you want me to stay in the examination room with you when the doctor comes, or wait outside in the reception area so you can have some privacy?
Would you like me to ask the doctor any questions, or should I only speak up if I think there’s something you’ve forgotten but wanted to discuss?
Do you just want me to listen to you vent right now, or would you like some feedback?
Do you need a ride to your appointment on Friday, or have you already made other plans?
Wu also recommends checking in often, since your adult child’s desires could change between one day and the next.
“The most effective type of support stems from a true collaboration,” notes Wu. “That means you’re respecting the adult child as being their own person, with their own thoughts, feelings and opinions.”
Make sure you have your own support system
Whether you’re talking to a social work counselor, joining a support group for caregivers or connecting with someone who’s been in your shoes through myCancerConnection, it’s important to make sure you build your own support network, too.
“Parents need to find good outlets to process what it’s like to have a grown child with cancer, both so that they can be a dependable resource for their children and so that they have someplace to vent when things get hard,” says Wu. “If their adult child is between the ages of 18 and 39 and a patient at MD Anderson, they can also join a support group for caregivers of Adolescents and Young Adults (AYA), which deals with the unique challenges of patients in that age group.”
Consider cultural differences
Some families have unwritten rules regarding serious illness, such as shielding patients from potentially upsetting information or making decisions as a group rather than individually. Others have cultural expectations that can make candid conversations between parents and adult children more difficult.
“Every family is different, of course,” Wu notes, “but if one generation tends to communicate more subtly and another tends to be more direct, the former could end up feeling attacked rather than helped when pressed for details, because it’s hard to express themselves that way.”
In those situations, take a step back to assess the unwritten rules at play in your family, Wu says. Then, consider how you could modify them slightly to keep the lines of communication open.
“Multigenerational homes in particular can blur the boundaries between who ultimately gets to make a decision,” notes Wu. “But give yourself the space to practice new ways of communicating, so that everyone feels respected and heard.”