What Do You Do When You Need To Tell Your Children You Have A Terminal Illness?

Never say goodbye because goodbye means going away and going away means forgetting.

— J.M. Barrie, Peter Pan

How do you tell your children that you have a terminal illness? 

"I have got something important to say to you."

End of life planning conversations could not be harder, could they?

My dad died when I was around 14. He had been ill for many years, and then suddenly he died. 

A part of my world collapsed that day. Ever since then part of it has been broken. 

Dad and Mom never told me how ill he was. He was a fighter. He was a very brave man. It must have been a challenging, heartbreaking and scary time for both of them too. It was not a lack of fortitude that prevented them from telling me I am sure. I'm sure they didn't know what to do. What do you do?

What would you do If You Were Terminally Ill?

I have often been left wondering, especially when I had children of my own if the same situation had arrived, would I tell my kids? What an agonising spiral of worry, sadness, and pain that process of choice would be? My heart goes out to any parent who finds themselves that circumstance.  

Being a child of any age is a process of learning about the world. Part of that, as tough as it is, is learning about life and death. That is why the changes we are experiencing with conversations around death and dying are so helpful. When it happens to your hamster; that is tough enough. However, how do you navigate those stormy waters learning that one of your parents is going die? 

What if the power of digital technology could change that?

An incredible use of digital technology is heading into its final phases of testing to do just that. Apart of Me is an interactive game that provides a safe space for children to explore when someone they love suffers from a terminal illness. Digital end of life planning for children and young people has never been approached like this before.

The brainchild of Louis Weinstock and Ben Page, Apart of Me has recruited a team of individuals to test the program ahead of the launch in Sping 2017.

"I was working in St Joseph’s Hospice in Hackney supporting children, young people, and their families, explains Louis Weinstock. I repeatedly saw how young people – when they did not have an outlet at that time when someone they loved was dying – would go off the rails, be excluded from school, turn to drink and drugs, and develop mental health problems. But I also noticed that how young people are already using their digital devices in unstructured ways to curate memories of their loved ones who were dying."

He and Ben Page teamed up to launch Bounce Works. Bounce Works is a social enterprise.

What Is Apart Of Me?

When children open this app, they will see a peaceful island that is theirs to explore. They are encouraged to visit different parts of the island and are responsible for looking after some of it. The strongest feature is the ability to curate memories of a loved one in a beautiful and engaging way. 

Apart of Me provides a way to facilitate the difficult conversations the child may have with their loved one and also with their teachers and peers. 

Apart of Me provides a way to curate digital memories of their loved one via photos, videos, and audio recordings. This provides the children with a secure, reliable single-purpose store of the media they chose to remember their loved ones.

Apart of Me provides access to helpful, practical information and advice about all aspects of terminal illness.

Here are some screenshots of the game and how it will help young people. 

Taking digital technology into unconventional areas like this is challenging, but criticlaly needed at the same time. It will be very interesting to see the project launch and change the lives of hundreds of young people around the world. Digital end of life planning can help in ways that would have significantly helped me growing up. 

What do you think about this idea? Do you think the end of life planning can benefit from games such as this? I would love to hear from you.

Looking for a speaker for your next conference on End Of Life Planning? Please check out my SPEAKING page or contact me for more details of the subjects and to chat about what you are planning.