Child life specialist helps terminally ill parents answer the hardest question: ‘Are you going to die?’
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Jenni Rogers, a child life specialist at Mayo Clinic, helps children face many challenges — including the impending death of a loved one. She recently co-authored a book, "What Happens When Someone I Love Can't Get Better," to help parents prepare their children for loss.
"Are you going to die?"
That's one of the hardest questions a child can ask a parent, Jenni Rogers says.
Rogers, a child life specialist at Mayo Clinic, has helped many parents facing terminal illness find ways to answer. It's some of the most rewarding work she's done in her 32 years in the field.
"I love medicine and kids and the idea of being able to take really difficult conversations and break them down into manageable pieces, so families feel empowered," Rogers says. "Each time I come alongside a family facing a challenging situation, I try to learn something I can apply to the next family so their journey is just a little bit easier."
She recently turned some of those lessons into a book, "What Happens When Someone I Love Can't Get Better," which she co-authored with Sara Olsher, a mother and self-described cancer survivor.
"I came across a different book Sara had written, and it was the first time I'd encountered someone who approached hard topics with kids the same way that I do," Rogers says. "I reached out to her and told her that if she ever wanted to work together, I was interested."
When the body stops working the way it should
Before she began working with Olsher, Rogers was creating handouts to share with parents to guide them through difficult conversations.
"Parents often want to know how to start the conversation with their kids about serious illness or when time is short," she says. "So I started writing individual scripts they could use when they went home and talked to their kids."
Those scripts helped inform the content in "What Happens When Someone I Love Can't Get Better."
"The book is a way to make sense of the dying process from a scientific point of view," Rogers says. "If we tell kids their loved one is really, really sick they often think it's a bad flu. They don't naturally understand that it means end of life."
"What Happens When Someone I Love Can't Get Better," aimed at children ages 4-10, follows Mia and her curious stuffed giraffe, Stuart, as they learn about the body and why sometimes its parts stop working the way they should.
Neighbors or friends might bring dinner. Other people might take you to school or pick you up. This is kindness.
"What Happens When Someone I Love Can't Get Better"
"Kids need to know how the body is supposed to work before we can explain why it's not working," Rogers says.
Mia learns how doctors diagnose problems in the body and how they try to fix them but aren't always able to.
"Using medicine or surgery helps, but it can't fix everything," the authors write. "Sometimes medicine works for a long time, and sometimes only for a short time."
The book explains the big feelings and big changes that happen when someone is dying.
"A special bed might be in their house. Nurses or other helpers might visit," Mia learns. "They might get medicine to help them feel comfortable. This is called comfort care or hospice."
The authors also highlight the people who may step up to help when someone is dying.
"Neighbors or friends might bring dinner," they write. "Other people might take you to school or pick you up. This is kindness."
'No right way to feel or act'
In addition to explaining the physical and practical aspects of illness, "What Happens When Someone I Love Can't Get Better" addresses the emotional impact on children and their parents.
"Grief is not easy to understand or quick to go away like other feelings," Mia learns. "It takes time to get through it. With grief, there's no right way to feel or act. And it might change every day."
The book also provides suggestions for how to help a dying loved one.
The memories you share and how they made you feel becomes a part of who you are. And that never, ever goes away
"What Happens When Someone I Love Can't Get Better"
"We want to help families live during this challenging time," Rogers says.
One way to do that, the book suggests, is by sharing stories and learning about each other. Knowing Mom loved the Minnesota Twins, the color yellow and giving gifts can help keep her present in a child's life long after she's died.
"Every single person is special and different from everyone else," Mia learns. "They have cool and sometimes weird things that make them who they are. And the memories you share and how they made you feel becomes a part of who you are. And that never, ever goes away."
That, too, is a kindness.
Conversation starters for families
Rogers shares some conversation starters to help families learn about each other, below.
"None of us know when we will face the end of life, but everyone who loves us wants to know what makes us 'us,'" Rogers says. "I encourage these questions to be used at a family gathering or dinner table for a conversation among everyone."
Questions to deepen relationships:
What makes you laugh?
What does a perfect day look like?
What's your favorite:
- Comfort food?
- Movie?
- Junk food?
- Color?
- Song?
- Pizza toppings?
- Holiday?
- Smell?
When you're faced with a tough decision, what helps you move forward?
What are three words that best describe you?
Is faith important to you? Why?
When you're sad or mad, what helps you to feel better?
What are you most proud of?
What is something you love about each person here?
People who know me well and would be happy to tell you stories about me are:
And for parents:
- What do you love most about being a parent?
- What is the hardest thing about parenting?