Tips for Speaking To Your Child About Your Terminal Illness

Most parents would agree that giving their children love and security are their biggest responsibilities.  This could not be truer when faced with having to share the news of a terminal illness with your children.   This discussion could be one of the most difficult things you’ll ever have to face, however, experts agree that being honest and open is the best way to ease your child’s fears.  Being included in this painful transition can help your child feel reassured that he/she is loved and that your family will go through the journey together.

“Children are very sensitive to the emotional moods and non-verbal communications of adults around them, and they sense when a parent is upset, even if the parent thinks that the child is unaware of what may be happening. So it makes sense to us to open communication rather than avoiding it,” says Joseph Nowinski, Ph.D., author and supervising psychologist at the University of Connecticut Health Center.

According to Dr. Nowinski, research shows that it is helpful for families to talk about death and dying as a normal part of the life process, especially when children are young.

Although harrowing for the parent, the open dialogue is a key part of preparing the child for what’s to come.  In time, he or she will accept the reality and through this process, the child can come to accept the painful truth that life can and will go on without the parent.

Depending on the child’s age and temperament, a parent will address coping with sickness and death differently, but we’ve compiled a few tips for talking to children in the 5-12 age range.

“This age group is beginning to understand death as permanent, universal, and inevitable. They may be very curious about the physical process of death and what happens after a person dies. They may fear their own death because of the uncertainty of what happens to them after they die. Fear of the unknown, loss of control, and separation from family and friends can be the school-aged child’s main sources of anxiety and fear related to death,” states Stanford Children’s Health.

When to Tell Your Child

There is never a perfect time to share the news of a terminal diagnosis, however, it’s best to inform your child as early as possible.  If your child has known the details of your illness you may be able to explain that what you have been doing in the past is no longer working.  It’s also important that your child hears the news from you versus overhearing the discussions about your illness. If this occurs, there’s a chance he/she may misunderstand the details and mistrust that you will share information easily with them.

Find a quiet time and place when you won’t be interrupted, trying to avoid busy household moments like getting ready for school or before bed at night.

The video below showcases how a mother shared the news of her terminal illness with her children:

Tips for Speaking to Your Child

Be Honest.

First and foremost, tell the truth.  It’s natural to want to protect your child from pain, however, if you’re not transparent, your child’s imagination may conjure up scenarios, and they may even blame themselves.  Honest and direct communication with your child will enable him or her to better express themselves and trust what you’re telling them.

Children this age will typically exhibit strong feelings of sadness and loss both during their parent’s terminal illness and after a parent’s death and may feel embarrassed about their outbursts of strong emotions. As long as they are given clear, honest information throughout the process they will have a deeper understanding of the seriousness of the illness and the finality of death.

Children, particularly around the ages of 9-12, can be given concrete details and information about the parent’s disease and treatment.  For example, children need to understand that there’s been a change in your response to treatment and what will happen next.

Be Clear & Specific With Your Communication.

When speaking to a child about your terminal illness avoid verbiage or language that makes death sound more pleasant.  As hard as it may be, it’s important to use the words “die” and “death” rather than “pass on,” “go away,” “go home,” or “go to sleep”.  Children may not understand what these softer words mean and what you’re trying to communicate.

Since a child’s understanding is based on what they can directly experience or may see in books or on television, death should be explained in very black and white terms such as:

• Death means that we’ll no longer see the person we love except in our hearts and minds
• Death means the person won’t physically be present in our lives
• When a person dies, they don’t feel anymore, their body doesn’t work and the person can’t breathe
• Death means that the person will not be coming back

If you haven’t already done so, refer to your illness by its medical name.  While it may sound confusing or foreign to them, it helps children process the information and avoid confusion.  And, although this may be obvious to you, clearly explain that your terminal illness is in no way their fault and they shouldn’t worry about getting it from you or passing on to other people.

Make Your Child Feel Secure.

Throughout your conversation, your child may question what will happen to them and how the illness will affect their day-to-day.  “What will happen to me?” or “Who will take care of me?” are questions that might come up.  Children rely on their parents for security and to make sense of life, so it’s extremely important to communicate what arrangements have been or will be made to keep them safe.  Handling the news of a parent’s illness is hard enough for a child to grasp, so it’s paramount that any fears about being abandoned by the people they depend on and love most are addressed.

Continuously comfort and remind your child that regardless of your illness, they will always be loved and provided for. Massachusetts General Hospital’s Marjorie E. Korff Parenting At a Challenging Time Program states,

“Balance uncertainty with reassurance…they need to know they will be taken care of, regardless of the course of the illness, and they need to appreciate the importance of life in the here and now.”

Prepare For The Tough Questions.

Experts agree that tough questions are going to come, so be prepared and welcome any topic that he or she may want to discuss.  Your child may ask direct questions about death, your illness, and next steps, so it might be helpful to rehearse some answers.  Always pay attention when the child talks about fears and concerns and listen for unasked questions.

According to Massachusetts General Hospital’s Marjorie E. Korff Parenting At a Challenging Time Program, “If your child appears to be having a difficult time stating a question, try to figure out if there is an underlying concern that the child feels unable to express. If you don’t have an answer to a particular question, it is often better to tell your child that you will seek further information from your doctors than to give immediate information that may not be accurate.”

Additional Communication Tips

• It’s ok to get emotional:  It’s natural for emotions to run high throughout the conversation, so it’s absolutely OK for your child to see you cry, get angry or be emotional as long as he/she understands that they’re not to blame for these feelings. Explain that it’s normal and healthy to have strong feelings and it’s good to express them.
• Follow their lead:  Your child’s temperament will affect how he/she copes with the news, so whether it’s doing a lot of listening as questions are fired off or simply allowing them to sit silently, you know your child best, so act accordingly.
• Always encourage:  Whether it’s during your conversation or throughout the process, encourage your child to express and talk about his/her feelings, especially anger, and safe ways to do so.  Assure the child that it’s OK and perfectly normal to be upset, sad, anxious, or angry and that their parents will always love and care for them.
• Be prepared to repeat this conversation:  Particularly with younger children in the age group, you may have to repeat this discussion a few times before they fully understand.  Your child may ask the same questions over and over again, often as if the conversation had never happened, somehow hoping that the answer will be different the next time

Other Ways to Support Your Child

Keep Your Child Close.

You may be tempted to have your child stay with a friend or relative to spare your child from witnessing death, but most experts say it is more upsetting for children to be sent away.  They encourage those with a terminal illness to spend as much time as possible with their children. School-aged children in this age range want to know that their parent loves them, so encourage affection through hugs, kisses, and hand-holding from parents.  Some children are comforted by exchanging gifts or cards with the parent, which can be become treasured memories.

Get The Support of Your Child’s Trusted Circle.

The ways children respond to a terminal diagnosis is largely shaped by their social environment, so talk to your child’s teacher, coaches, and social network and let them know what is going on.  Consider talking to the parents of your child’s close friends, as it may help if your child has friends to support him/her.

Keep Your Child Involved in Their Normal Routine.

Children thrive in and need structure, so try and keep their routine and schedule as normal as possible.  The ability to stay in their own bed, play with their friends, go to school, and participate in their typical activities make a big difference in helping children cope with the other changes in routine.  The same applies to sticking to usual household rules, including chores and discipline.

“While there will inevitably be unavoidable changes in your child’s schedule at times during your illness, familiar routines can provide children with a sense of security in the face of many confusing and unpredictable changes in their lives,” says MGH’s Marjorie E. Korff Parenting At a Challenging Time Program.

When It’s Time to Get Help

Children experience stress and grief at varying moments and the way they cope is different depending on his/her temperament.  Experts say that any significant change in behavior such as acting-out at school, loss of appetite, social changes or difficulty sleeping that lasts for more than two weeks may indicate that a child could benefit from counseling.

As a parent it is natural to want to shield your child from hurt and distress, however honest and open communication will provide them the love, comfort, and security they need now more than ever.

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