Helping Children Cope with Behavior or Personality Changes in a Parent with a Brain Tumor

By Jean Hartford-Todd, CCLS, with Bebe Guill, MDIV, and produced by Pam Clair at the Preston Robert Tisch Brain Tumor Center at Duke University

The diagnosis of a brain tumor in a parent raises many thoughts and feelings in children.  When that diagnosis is made even more complex by changes in the parent’s personality and behavior, children can feel confused and distressed.  There are things you can do to support your children during this time.

Changes that may occur:

Memory loss—repeatedly forgetting recent events.

Irritability—being short-tempered and quick to criticize.

Aphasia-—having trouble finding words, using the wrong word, or not being able to say any words at all.   A parent may have trouble understanding what is being said or not be able to read or write as before.

Lack of initiative—loss of the ability to “get up and go,” such as just sitting and watching TV; being unable to get started on chores around the house or participate in children’s activities.

Decreased ability to problem solve—not being able to think through an issue and come up with an answer to a problem.  This may result in choices that are not safe for the ill parent or others, including the children.

Slowed thinking—taking longer to understand a question and provide an answer.   Keeping up with conversations may be difficult.

Lack of emotion—having a very flat affectation; that is, not showing the typical
range of emotions to things that are happening.

Difficulty multi-tasking—having trouble focusing or being unable to pay attention to more that one thing at a time.

Inability to recognize or acknowledge changes in behavior or personality—not being aware or able to acknowledge that changes in behavior have occurred. Public behavior vs. family behavior: behaving better “in public” than in “private” with family.

What you can do to help your children cope

Tell your children what is causing the changes.  Explain simply that the brain is in charge of all functions of the body.  If the brain is damaged, as it often is by tumor growth, it changes the way the brain works and causes behavior and personality changes in the ill parent.  Side effects from certain medications can also cause these changes.

Acknowledge the wide range of emotions your children (and you) may have.
Help your children express these feelings, especially those often viewed as negative, such as anger or frustration.  Help them focus these emotions on the changes that have occurred rather than on the ill parent.

Practice ways to answer question from friends or community members about the ill parent’s behavior.  This can help your children feel prepared if questions are asked.

Allow time away from the ill parent.  Children of all ages will benefit from normal outings with others, while the ill parent may also benefit from quiet time. 

Set limits with your children as you always have.  Require them to speak politely and with respect to all family members.

Provide extra opportunities for active and expressive play.  Children often release stress more easily running, jumping, or playing sports than by talking.  Pounding play dough, water play at the sink, or cotton ball ‘snowball fights” are examples of indoor stress-relieving activities.

Keep your children’s schools informed of issues your children are dealing with at home.   Be clear that your family is not only dealing with the diagnosis of a brain tumor, but also with changes in personality and behavior.  A school counselor or teacher can check in with your children and inform you if they are observing any signs of stress.

Model using humor.  If used in appropriate and respectful ways, humor can help everyone cope better.

Make an appointment for your children with a local counselor if you feel the stress of the parent’s illness is too great.  Ask your pediatrician, school counselor, local clergyperson, or any trusted individual to help you identify a counselor.

Seek support for yourself from family members, friends or a professional counselor.  You will be better able to support your children if you are getting the support you need from trusted and compassionate adults.

Responses children may have

Confusion—not understanding that these changes are due to the brain tumor.

Anger—believing that if their parent would just try harder, he or she could behave normally.  This can be a stronger emotion if the parent behaves better in public or with visitors than with immediate family members.

Sadness—grieving the loss of the parent as he or she use to be.

Embarrassment—feeling uncomfortable if the parent behaves strangely in front of friends or members of the community.

Guilt—feeling “not good enough,” especially if the parent criticizes frequently; feeling guilty because of feeling anger or embarrassment at the parent’s behavior.

Frustration—upset that day-to-day living is so difficult.  Children sometimes feel that no one realizes how difficult it is to live with their parent, especially if the parent does not display problem behaviors in front of others.

Desire to avoid the ill parent—not seeing their ill parent as a real parent figure.  Children often seek out the well parent to have their needs met and questions answered.

Being disrespectful to the ill parent—talking back to or ignoring the ill parent.

Worry—anxious that the ill parent will not make safe choices or that behavior changes mean that parent is getting sicker.