Dear Annalisa

My beloved father has just been diagnosed with a terminal brain tumour. It is early days and, as yet, we have no idea about timescales or treatment, although we believe it is quite advanced. After a terrifying few days, he is pretty much as he was before his collapse. I don’t know how long this may last.

My husband and I have two sons, aged eight months and four. Our elder son has a wonderful relationship with my dad. We live near my parents and he sees them regularly. He loves both grandparents dearly, but is particularly close to Dad, who adores him in return. 

It is very important to me to be honest with my kids, so we have told my son that Grandad had to go into hospital because he is poorly, that there is a problem in his head and that, although he seems OK at the moment, the doctors can’t fix the problem so he will get poorly again.

As yet we have not said that Grandad will die, as I don’t want to overburden him too soon. I think Dad will be happy to discuss his illness with my son when he has had a chance to process things for himself. My son does have an understanding that dying means going away and never coming back, as he remembers the death of our much-loved cat. 

I know we can’t entirely protect my son from the upset to come, but would really appreciate some guidance on how to support him as Dad’s illness progresses and after his death, as there will be a gaping hole in my son’s life. Should we let my son see his grandfather in the late stages of his illness? Should he go to the funeral? I don’t really know where to start, and I know that Dad is worried about how to handle this too.

I’m so sorry about your father. What a lot for you to have to deal with yourself, as well as trying to do right by your sons. Apologies for cutting out a lot of detail from your letter: it is important, but I wanted to cram in as much of an answer as possible.

I spoke to two people on your behalf, Brett Riches, family services team leader at Winston’s Wish (winstonswish.org.uk, 08452 030405) and someone from Macmillan (macmillan.org.uk, 0808 808 0000). They deal with situations very similar to yours every day and have helped me form my answer.

The first thing to say is that both said you sounded as if you were already handling things really well. There are two main things for you to remember here: be factual but keep it simple and make sure your son can ask you questions – both of which you are already doing. He is already able to tell you how he feels (your longer letter makes clear), which is amazing. Well done. The inclination with scary news is to shield children, and sometimes we do have to, but it is important not to give them half-truths, as half-truths get filled by a child’s imagination, often with things more terrifying than the reality. And if you actively lie, when the child finds out the truth (as they inevitably will), they will think you are not trustworthy.

When you are overwhelmed, no matter what the situation, the advice is the same: break things down into manageable chunks. Deal with the here and now and, if you don’t know something, it’s OK to say so. As things progress, involve your son in the decision-making process. So, for example, should he visit Grandad in hospital? Riches advises taking a photograph of your dad in hospital and explaining that he may not be able to play or talk. Say that there may be some hospital equipment and ask: “Do you think you’d like to go and see Grandad there?” The same with the funeral (which I hope is a long time into the future). I know people seem terrified of giving children choice, but it will really matter to your son that he feels involved. Explain what a funeral is, what will happen, and who will look after him if he doesn’t go, and then ask him what he thinks.

Children deal with grief differently from adults. Riches calls it “puddle jumping” (the puddles being the grief) compared with adults who “wade through a river of it”. This will become important in future as you and your son will deal with things differently.

There are resources to help you further. You can ring either of the organisations I mentioned above for a chat – Macmillan will be particularly helpful at this stage; there is also lots of information on the sites, such as Macmillan’s brochure “Talking to children and teenagers when an adult has cancer“, which you can download free. Riches of Winston’s Wish recommends two books for you: Supposing by Frances Thomas, and When Dinosaurs Die by Laurie Krasny Brown.

This article was first published in The Guardian Family section on 7 February 2014.