My father-in-law was diagnosed with Parkinson’s disease nearly 10 years ago. His tremor is noticeable and my daughter has known there is something that makes her Papa’s hands shake. For years, my wife and I chose to leave it at that because no other symptoms have been apparent to her, and she has not asked.
Photo: Elva Etienne (Getty Images)
This winter he developed bouts of involuntary jerking and spasming, known as dyskinesia, which is often experienced by people with Parkinson’s. These attacks would take place in the middle of the night, compounding his Parkinson’s-related sleep issues, and result in his sleeping through our family’s Sunday morning FaceTime sessions.
My daughter seemed to accept our explanation that “Papa wasn’t feeling well” until one Sunday when my mother-in-law called after videochatting. She just found out her cousin had died from a stroke. During the phone call, my daughter played in an adjoining room.
A little later, my wife noticed our daughter was no longer working on her craft. She was restless, fidgety and unfocused. She would start something, stop, then move to something else. This wasn’t her normal behaviour.
We asked her what was wrong and, after a pause, she explained Papa was not on FaceTime and she had not seen him in a while. She said she heard my wife talking on the phone with Grandma about someone dying and she thought it was Papa.
My wife and I had the same thought at the same time: “Oh crap.”
There are many resources on how to talk to kids about death, but we don’t see a whole lot of advice on how to navigate disease and illness, which can impact family members of any age.
Adults, who are likely dealing with their own anxieties and emotions, often try to shield kids from the feelings they’re experiencing. But children often understand more than we give them credit for, and bringing them into the conversation can help them feel safe and included.
It took some reassuring and a quick FaceTime appearance, but we were able to convince my daughter that her Papa was OK. Here’s what I’ve learned about talking to kids about disease and illness.
Listen and Provide Space
I turned to the mother of one of my daughter’s best friends for help. Cheryl Mayer is a licensed social worker in a school district in Syracuse, New York. She’s had to deliver news to children that their parent or friend has cancer or has died. In each situation, she listens, provides space for the child to process the information, and affirms that whatever reaction they might have is perfectly OK.
Tanya Gesek, PhD, a New York-based psychologist, encourages parents to find out what the child already knows so that you can determine how much they will be emotionally prepared to handle.
Gesek, who works with children and adolescents, says the overall context of a disease is important, especially with younger children. You can tell them the name of the disease or illness, what changes might be happening (“Grandma will have oxygen with her”), and whether the disease is contagious (“It is safe to hug your uncle”).
“Focusing on helping them get comfortable with symptoms is the best thing,” she says.
Consider Their Age
Answering a child’s questions honestly is important – it teaches kids that you can be trusted and that they can feel safe asking questions. But Gesek says their age should dictate what comes next. You would talk to a 16-year-old differently than a kindergartner.
“I believe in honesty, but feel it should be developmentally appropriate,” she says. “Children under three won’t get much. Young kids are pretty resilient and can handle more than you think. Their matter-of-fact approach can actually be comforting to adults who have hang ups about discussing things like illness and disease.”
Bits of information over time can prevent a young child from becoming overwhelmed. Mayer added sometimes affirming the child’s feelings is enough. If they still seem concerned, she suggests asking them what they think of it, inviting them to share their feelings.
“I affirm, ‘Yeah, I get a little worried too,’ and then share how I am dealing with it as an adult. ‘But even though I’m worried, I know Grandpa is seeing the exact doctor who can help however possible.'”
Don’t Shelter Them
While adults and children will process sad news similarly, kids are limited in their information and their ability to understand. Mayer says it’s important for adults to model and walk them through ways of handling it. Above all else, both Gesek and Mayer stress tackling the situation head on.
“Kids build resilience from challenging situations,” Gesek says. “Hiding them from it takes away opportunities to build strength and grit.”
Mayer reflects on her own parenting in her approach. “Kids experience the greatest problems when we shelter them rather than helping them to understand,” she says. “I want my kids to experience disappointment and loss and frustration and anger and sadness and hurt while they are still children so they are better equipped to deal with all of that as adults.”
Let your kid continue seeing the friend or family member as long as it’s safe to do so, and find ways for your child to help. Perhaps they can push a wheelchair, make them a card, or just hold their hand.
When You Don’t Know Something, Say So
An important part of being honest is admitting when you don’t have the answer. “I have often said to my son, ‘I don’t know but will find out and let you know if I can.'”
If you feel your child could use extra emotional support, seek a children’s counsellor or other professional. And don’t forget to take care of yourself, too. Above all else, remember that you are human.
I don’t know, Mayer says, is a completely acceptable answer.