Telling my mother who has dementia about my bowel cancer

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I've been searching on the forums but it's all about caring for people who have both cancer and dementia.

Mum (who is 88) knows that I'm not well. She usually remembers that I told her I've been very constipated and tired (because I needed to explain why I couldn't visit as much). But I haven't told her about the cancer diagnosis, which I had about ten days ago.

When I tell her she will have a complete meltdown, and I will have to talk her through the whole thing Every Single Day. She is also deaf so it's a struggle to explain things to her on the phone (she lives 100 miles away).

If she had more severe dementia I'd just gloss over it  and not tell her, but she is 'with it' enough to realise something is very wrong, and will probably remember what is wrong, but not the details, and she will have no insight into how I feel. I'm dreading it.

My current plan (agreed with my brother), is that we proceed on a need to know basis. So she currently knows that I'm not feeling well and that my first set of tests weren't completely useful (true) so I have to have some more. I plan to tell her the date of the second colonscopy when I get it. Then the date of the appointment with the surgeon when I get that. Then after I've spoken to him to tell her that I need surgery without specifying why. etc.

She has a carer come in twice a week (she won't accept any more) so I will tell them at the same time as I tell her.

Has anyone else got any tips? I can't be the only one! It is REALLY stressing me out.

  • Hello  

    I am Brian one of the Community Champions here on the Online Community. I have just noticed your post has gone unanswered. I can't answer it myself as I have a different cancer however by me replying your post will be "bumped up" to the top of the page and I hope seen and answered by other members of the Bowel cancer group.

    Even though I have a different cancer my sympathy goes out to you - I have just had my 3rd regular colonoscopy and I know just what you are going through!

    It might be an idea to contact our Support Line on 0808 808 00 00 (8am to 8pm 7 days a week) - they may well have some ideas of how to break the news to your Mum.

    I wish you well moving forward.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

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  • Hi  As you say all the guidance seems to be in telling the person with dementia that they have cancer although I’ve found this on the board

    https://www.macmillan.org.uk/cancer-information-and-support/diagnosis/talking-about-cancer/how-to-tell-people-you-have-cancer

    I think the idea of a need to know basis is a good one and play things down a bit? My consultant told me that they were treating me with a ‘view to cure’ which I was able to tell people. How is your mum with technology? Could you set up a family WhatsApp chat to update daily as I can appreciate it’s not something that you want to discuss every day in a phone call when you’re struggling to deal with it yourself. You could also maybe give a dementia charity a ring for their advice.

    Sorry not to be much help but I hope it goes well x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Current status is that I’ve told her I need an operation to remove part of my bowel, and mysteriously didn’t get around to telling her why. She is delighted! Joy who knew? I am hoping I can get away with never mentioning the ‘c’ word unless I need chemo, Fingers crossed