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Telling Your Kids About Your Terminal Illness

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When Kids Are Scared | Tell Them the Truth | How to Tell Them | When to Tell Them | Keep the Changes to a Minimum | Stick to the Rules | Prepare for the Tough Questions | When It Is Time to Get Help | Life Lessons

After Dr. Elizabeth King was finished with her treatment—double mastectomy, chemotherapy, stem cell mobilization and reinfusion, and radiation—she sat outside her Atlanta home and watched her eight-year-old son, Mitchell, skate in the driveway. After more than nine months of dangerous and debilitating treatment for breast cancer, she enjoyed just feeling the sun on her face as her son showed off some new moves.

The conversation turned to Mitchell's request to play football in the fall. Given the injury rate in the sport, King and Mitchell's father were not keen on the idea. Mitchell skated over and sat down beside her.

"He looks at me and says, 'You know, I think I'm going to play football,'" King recalls. "'I want to scare you as much as you scared me.'"

When Kids Are Scared

A child psychologist, King told her son that she did not blame him for being mad and scared. While she was impressed by his ability to express his emotions so clearly, she was overwhelmed by the pain and fear her illness had caused him.

When a parent has a serious illness, it hurts children too. The American Cancer Society estimates that about a third of patients with cancer have school-aged or adolescent children. Fortunately, a host of resources are available to help parents help their kids.

Tell Them the Truth

First and foremost, tell your children the truth. If children are not told the truth, their imaginations are likely to conjure up even worse scenarios, and they may blame themselves. When a child is not told what is happening—but can see the evidence all around him—they cannot express how they are feeling. If children cannot trust what you tell them when the news is scary, they will question whether you are telling the truth when there is good news.

"When children are given the opportunity to put their feelings into words," says Allen Levine, assistant director of social service at New York-based Cancer Care, "they don't have to put them into fists, sleeping disorders, and eating disorders."

How to Tell Them

Obviously, telling a child about a serious illness can be very difficult for a parent. Izetta Smith, a cancer counselor with Kaiser Permanente in Portland, Oregon, says the important thing is to be honest.

"You don't have to have all the answers. You don't even have to talk about everything," Smith says. "Just say something that's an honest, connected communication." And because kids process information through repetition, be prepared to discuss the same topics over and over.

Parents may be surprised, Smith says, that children may cope with the news pretty well. "First of all, kids already know something is up so they may feel relief because they need to know you and they are close," she explains.

When to Tell Them

The best time to start a discussion is when the illness begins to affect the children, says Dr. Wendy Schlessel Harpham. A physician, cancer survivor, and mom, she used her experience to write When a Parent Has Cancer: A Guide to Caring for Your Children and the companion children's book, Becky and the Worry Cup.

The appropriate time is often when a parent is going into the hospital for surgery, and a relative is coming to take care of the children. Use this time to explain your diagnosis and treatment plan in age-appropriate language.

Smith recommends that you not break the news at bedtime. Children will need time to play and talk after they get the news. "For a little girl, the worst time of the day is the morning, when she's doing her hair and choosing her clothes for the day," says Levine. "It's ritualistic and it's very important."

Keep the Changes to a Minimum

Since children need and crave structure, try to keep things as normal as possible. If a relative offers to help with the kids, have her stay at your home instead of the other way around. The ability to stay in their own bed, play with their friends, go to school, and participate in extra-curricular activities makes a big difference in helping children cope with the other changes in routine, such as doctor's appointments or a parent who is too tired to play or is losing hair.

Stick to the Rules

Parents are not doing their children any favors if all the normal rules of behavior go out the window. "If the rules change too much, the children are frightened and they act out more to get limit-setting," says Levine.

Prepare for the Tough Questions

Be prepared to answer tough questions, because the experts agree that they are going to come. "The kinds of things they want to know are 'Are you going to die?' and 'What's going to happen to me?'" says King. "You need to communicate that you're there to talk about whatever they want to talk about, whenever they're ready. And they'll be ready at the oddest times—in the car, at church, or even while you're on the phone."

Harpham recommends that you rehearse some answers. She was glad she had planned ahead for the day her daughter asked if her cancer, a strain of non-Hodgkin's lymphoma known for recurrence, would ever come back. "I said, 'Darling, right now it's gone and we really hope it will never come back. But yes, it can come back. If it comes back, I can be treated again and we can get through it again. As long as I'm doing fine, let's focus on what we have now.'" "Don't say, 'I'm not going to die,'" says Levine. "Say, 'If I die, Aunt Carol will take care of you.' Most of the time that's all they want to know. If they make a big deal about it, pay attention to that."

When It Is Time to Get Help

Children experience stress and grief at significant moments, like when they get up and Mom is not there to make them breakfast. Social worker Allen Levine notes that while adults act sad when they are depressed, children become agitated; what parents and teachers might call "acting up" may actually be signs of depression.

Experts say that any significant change in behavior that lasts for more than two weeks may indicate that a child could benefit from counseling. Those changes could include acting-out behavior at school, changes in the way he plays with his friends, difficulty sleeping, and loss of appetite.

The following behavior problems require immediate attention from a professional counselor:

  • Dramatic change in school performance
  • Drug or alcohol abuse
  • Self-mutilation
  • Violent behavior toward others
  • Eating disorders
  • Criminal or risk-taking behavior (shoplifting, speeding, driving under the influence, picking fights)
  • Suicidal tendencies

Life Lessons

Regardless of the prognosis, parents can use the illness to teach their children positive life lessons. King's son Mitchell combined his experience with his mom's breast cancer and his love of art to create the Kemo Shark Comic Book, which has been distributed to thousands of children facing the same issues he did. He helped his mom put together a video called "My Mom Has Breast Cancer" that has helped other moms talk to their kids. He also plays baseball and basketball, but decided to pass on the football.

CANADIAN RESOURCES:

Canadian Psychiatric Association

http://www.cpa-apc.org/

References:

Helping children when a family member has cancer: dealing with a parent's terminal illness. American Cancer Society website. Available at: http://www.cancer.org/Treatment/ChildrenandCancer/HelpingChildrenWhenaFamilyMemberHasCancer/DealingWithaParentsTerminalIllness/dealing-with-a-parents-terminal-illness-intro. Updated June 2010. Accessed December 12, 2011.

Last reviewed December 2011 by Brian Randall, MD

Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.


 
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