How do I speak with my child?

Who could think of a more difficult task than talking to your child about the fact you may soon die? This presents a complex situation as you are coping with your own illness and reaction to it. You may feel you want to protect your child from this knowledge and the challenges that would follow, but please consider the following;

Children are smart, intuitive, and they can sense something is wrong within the family. They will cope better, as difficult as it may be, if they know what is happening.

If they know when and what you know along with you, they will feel less alone. In general there is an opportunity to have a profound experience of being able trust adults at a life-changing time, and they will become more trusting of their own feelings as theirs are validated alongside of yours.
 

Guidelines

In addition to the suggestions below, remember you can also seek out assistance and support from your health care team members who have skills in this area.

Try to find out what your child already knows about your condition. Then correct what might be misinformation or misunderstanding.

Tell your child about the illness as soon as you can, rather than having them hear about it from someone else, or through an overheard conversations. When children are not told, they feel excluded, and they may make something up in order to make sense of the changes they feel. Telling them allows them to ask questions. How others are behaving will make more sense to them. They will feel included, trusting and trusted.

Take cues from your child and give as much information as they seem to be able to take in. Talk in a language they can understand. Typically they will ask questions about things they are wondering about. You might start off by telling your child the name of the disease, and the area of the body that is affected. Give them a chance to respond. You may not need to tell them much more than this.

Encourage your child to come back to you if they are confused about anything, or have more questions once they think about things, or if they hear something different from other people. Expect that they will return with more questions after the information you give sinks in.

Tell your child what your plan of care will be. Keep language simple and focused on what the child may observe as a result. Children need to know what to expect and where to expect it, what kinds of treatment, medication and even side effects are expected. For example; after a treatment, I won’t be able to get out of bed by myself for a few days, or, the medication might make me sleepy.

Tell your child who will be looking after them, where they will be cared for, and what will change in their day-to-day routines. Review this essential information with them on a regular basis, especially if your condition is changing.

Reassure your child that you will talk to them regularly about what is happening and how you are doing. Encourage your child to ask questions of you or any other trusted person at any time.

Your health care team will be naturally aware and inclusive of children involved in
your situation. Take advantage of their knowledge and expertise.