PSP Association

When should a child be told about her father's terminal illness?

My husband has been diagnosed with PSP since 2012. We have a twelve year old daughter. I was just wondering if I should let her know about her father's illness. Although I do not want to upset her unnecessarily, I believe she has a right to know about it. I would appreciate it if you would give me your thoughts.

8 Replies

Hello elliemylove

This must be a very difficult decision for you and it is a personal choice. However, children are more resilient than we think, and at age 12, your daughter should really be informed of her father's illness. There will be some sadness and confusion at first, but by talking through all the issues, I'm sure, as she grows older, she will thank you for sharing this sad news with her. It would be quite awful if your daughter finds out much later (from you or others) that her father has a progressive terminal disease.

I was the youngest of nine children and never told of such matters in our family. My sister died at 31 of a brain tumour and I was kept in the dark about her prognosis until the day she died. I still cannot believe why they kept this from me. While their intentions might have been to protect me from any anxiety, it just created a lot of resentment and shock when she passed away.

I do wish you all the best in making this decision. Remember, your husband may have quite a few more years ahead of him, and still be able to share many golden moments with you and your daughter.



A horrible job telling your daughter but personally I would before he shows a sympton that your daughter notices and will worry her.I am sure a twelve year old uses the web and she can find out in her own pace what this horrible disease does, then she can switch off when she has heard enough for that day.It is progressive the word we use at home more than terminal. Really sorry you have the job,she will probably want to be there for you when she knows.P


Good morning, Elliemylove,

I agree wholeheartedly with Strelley, in particular the last sentence. Also, the need to avoid the risk of your daughter discovering from another source, including perhaps her own research on the internet, something that really should come from you. My father died suddenly of a stroke when I was 11; it was a terrible shock to all the family but by the nature of his death no one could have been forewarned. However, three months later my mother was diagnosed with cancer and seven months later she died. I am certain the fact that I was told about her illness and prognosis almost as soon as she was diagnosed was a great help to me - not least because it meant I could see her to say goodbye the day before she died, without being traumatised. I was also able occasionally to talk to her about her illness which probably also helped though I seem to remember it was a bit like sparring - I asked direct questions but the answers tended to be opaque! But at least I never felt excluded.

My best wishes for you and for your daughter.



A very difficult decision I know as it was one we had when my husband was diagnosed,with us it was wether or not to tell the grandchildren, after a discussion with our daughters we decided to tell them, they range in age from eight down to three. They obviously don't understand the ins and outs but have grasped the basics and when anything new comes up they feel able to ask questions. I think it was one of the best decisions we made, they took it all in their stride and as young as they are go out of their way to help gramps and give him some nice memories to take with him when the time comes ( their words not mine).

Hope you get through this and remember there are people on here to talk to or just listen when you want to vent, I know they have kept me sane over the last year.

God bless you all and a very Merry Christmas

Carol x


Hi everyone,

Thank you very much for your warm words. I apologize for my poor English but I really appreciate it. I was thinking that my daughter will be unaffected if nothing is said. But, having read all your messages, I realized this can have a negative effect on her as she may begin to blame herself in future. Not talking about her father's illness might make her feel more afraid. She will perhaps feel much better if she is included. It's a very scary and responsible job for me to tell her, as she is such a happy and cheerful girl. But, I now feel that I am not alone as people on this forum are with me.



Hi, I agree with everyone, you can't keep your daughter in the dark. Equally, you don't need to tell her everything. I think I would go with the line, that this a life changing illness and answer her questions when she asks them. Children have a knack of only asking questions, that they want the answer to and able to understand. If she is not ready to hear all the gruesome details, she won't ask!

Best of luck, it's hard to tell anyone, but a young child, that's got to be hardest. Thinking of you and sending lots of love.

Lots of love



What a difficult position you are in. I do feel strongly that children need to know that things can be talked about. They sense there is a secret and pick up that it is too dreadful to be mentioned. With our grand children I just said he had a disease and we had to manage it. As time passes they ask questions as they occur. I always answer truthfully but no more than they ask. It is very touching to see how our 8 year old grand children are very tender with their granddad. The older ones are very accepting when he is grumpy. It is usually better for things to be in the open, I find. My thoughts are with you at this difficult time. Best wishes. Jean


Thank you very much again for the kind words! I am still struggling but I am determined to be brave.



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