These parents have a grim diagnosis. When should they tell their kids?

These parents have a grim diagnosis. When should they tell their kids?

Key points

• Frida Hansson, 41, was diagnosed with amyotrophic lateral sclerosis (ALS) in December 2023 after years of experiencing confusing symptoms.
• Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is backed by a partnership with Pivotal and Journalism Funding Partners.
• Hansson is connected with other ALS moms through Her ALS Story, a campaign to spread awareness regarding how the disease impacts young women.
• "I regret that I didn't talk to (him) sooner, " Hansson, who lives in Sweden, informed USA TODAY.
• Reflecting back on it, Hansson remarked she wishes she included him in the process back when she was going through tests and had more questions herself.

Around that time, her teenage son moved in with his dad, her ex. It didn't feel like the right time to tell him what was going on with her health, she remarked. So she didn't.

Years passed. Hansson remarked she never identified the right moment to bring it up. She tried, a number of times, to come clean over coffee or dinner. "Every time I'm like, nope, couldn't do it, " she remarked.

But when her son, now 17, came to live with her this summer and saw how much had changed with her health and day-to-day needs, she realized she couldn't avoid the conversation any longer.

"I regret that I didn't talk to (him) sooner, " Hansson, who lives in Sweden, informed USA TODAY. "I waited too long for that conversation to happen."

Notably, the anticipatory grief that comes with a fatal diagnosis is often overwhelming for plenty of adults. For parents, the news might feel too heavy to offer to their children, too. But young individuals are resilient, stated Linda Mathew, a licensed clinical social worker who co-led the Talking with Children Regarding Cancer program at Memorial Sloan Kettering Cancer Center. And not telling them major news – no matter how sad or scary – could, in some cases, ultimately break the trust a parent has with their child.

"I think kids are so much more resilient than parents, adults, actually, " Mathew remarked. "Kids need just reassurance that you love them and that you're going to be OK for right now."

Tough conversations: Her 12-year-old patient was pregnant. Why talking regarding periods matters.

Teenagers are different, she remarked, but younger kids live mostly in the moment. For kids of any age, she remarked, the key is to keep an open dialogue and produce sure they know it's OK to ask questions.

When Hansson's son finally did ask her directly what was happening, she remarked, "it almost felt like a breakup." She was already "over it, " having had years to process everything her diagnosis means.

Her son handled the news well, she remarked. Reflecting back on it, Hansson remarked she wishes she included him in the process back when she was going through tests and had more questions herself.

"I believe now, afterwards, that he would have coped, " she remarked. "We would have coped together."

How to talk to your kids regarding illness, and the merits of transparency.

Mathew works mostly with cancer patients. When she discussions with patients concerning how to tell their children regarding their diagnosis, she remarked, she always starts by asking them what they understand themselves regarding their health before thinking of a more digestible way to explain it to their kids.

"For younger kids, it's really giving them short, concrete, specific information and then letting them ask you questions as needed, " she remarked. "Teenagers are going to want to Google."

She recommends setting up a backing system beforehand, so children know they can turn to an aunt, uncle, grandparent or other trusted adult if they want to talk it through more. She additionally recommends having the conversation over a meal so it doesn't feel as scary, and telling children not to turn to AI or Google concerning the diagnosis on their own, instead giving teens trusted online resources to employ.

It's OK for parents to cry during those conversations, she remarked, and kids should know that it's good to express their own feelings, too.

While every child is different and needs different things in these intense moments, Mathew remarked she never recommends withholding information.

"We strongly believe, and research shows, that the more you involve children in the dialogue, the better they are to manage their emotions throughout and even after the parent dies, " Mathew remarked.

Dr. Sanjay Juneja, a triple board-certified oncologist with more than 475, 000 followers on TikTok, remarked this problem is becoming more pressing since "unfortunately, our cancer patients have gotten younger and younger." While he doesn't think there's any one right way to talk to kids concerning cancer or other grim diagnoses, he leans toward the merits of transparency. He's had plenty of cancer patients not tell their children who don't regret it, he remarked, especially if their disease is treatable.

But when parents are up against incurable illness, Juneja remarked, the amount they share with their children often has everything to do with maximizing the good days they have left together.

"In general, your child is aware of a little bit more than you may be expecting, " Juneja remarked, adding that rule applies to kids of all ages, even toddlers. If parents withhold information when kids suspect something is wrong, he remarked, it can fracture their trust.

Notably, the more you share and explain, he remarked, the more you allow your child to process and adapt to this new information. Transparency additionally protects children from feeling resentment toward other family members who maybe knew the gravity of the situation long before any information was shared with them.

Hansson additionally has a 6-year-old daughter. This person knew concerning Hansson's ALS diagnosis earlier than her brother. Since "for her, I've always been like this." Her daughter lives with her full time, while her son does not, it's been easier to talk regarding it with her daughter, Hansson stated. But Hansson was stressed during the years her son didn't know, hoping her daughter wouldn't accidentally mention it when her brother came to visit. Leaning on other moms.

Hansson is connected with other ALS moms through Her ALS Story, a campaign to spread awareness regarding how the disease impacts young women. How to tell their kids regarding their disease is a common topic of conversation.

"I talk with other moms every day, " Laura McNew, an ALS mom who lives in Ohio, informed USA TODAY via email. "The other moms support me cope by sharing their struggles and joys. Only they can understand me fully."

McNew remarked she informed her 11-year-old son regarding her diagnosis a year-and-a-half ago.

"We were in the car together after a joint therapy session, and it just spilled out of me, " she remarked. "I informed him that my muscles were dying as my motor neurons weren't getting the message from my brain. He asked if there were any medications that could support, and I stated not really. I informed him scientists are researching all the time, and that it's notable to remember that there's always hope. We both cried a lot and hugged. I promised that my love (will) never waver, and that though my body would change, I would never stop being his mama."

"My husband and I decided very early on that we were not sharing the death aspect of ALS with our kids because they were so little, " Megan Niemeyer, another mother with ALS who lives in Montana, informed USA TODAY via email. She continued that she herself had "very little experience" with loss and grief at the time. "I asked individuals to please share freely what's happening with me to their own kids, just leave out the 'it's fatal' part. I'm so grateful we did. If they stumbled upon the fact over the last four years, they haven't remarked anything. If they do bring it up, I feel much more ready."

In the meantime, Niemeyer remarked, she's writing stories and advice for her three daughters to have forever. "I've been obsessively putting photo albums together, buying personalized lifetime items like travel bags, makeup bags, compact mirrors, jewelry boxes – pretty much doing everything in my power to help remind them of my love for them when I'm gone, " she remarked.

Telling her son the truth felt like a weight was lifted, ALS mom notes.

Parents don't need to prepare for or even have these conversations with their children on their own, Mathew remarked. She suggests leaning on social workers, mental health counselors and school staff for backing.

Hansson's health has worsened over the last a number of years, but more gradually than she projected. For most of this time, her son hasn't asked any questions. But in August 2026, she remarked, he informed her he knew "something is up."

He probably knew something was wrong for much longer than he let on, Hansson remarked.

When he asked her outright, she answered honestly. He wasn't angry, she remarked, but asked what he can do to assist. She knows he might have more questions afterwards, but in the meantime Hansson stated she feels like a sizeable weight has been lifted from her shoulders.

"I can speak more freely, " she remarked. "It was unnecessary and hard for me, not telling him."

Madeline Mitchell's role covering women and the caregiving economy at USA TODAY is backed by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input. Reach Madeline at [email protected] and @maddiemitch_ on X. SMS Facebook Twitter Email. Share your feedback to support improve our site! Share your feedback to support improve our site!

Taken together, the developments around these parents have a grim diagnosis. When should they tell their kids? Point to a situation that is still moving, and the coming days should bring more clarity.