How to tell mum with dementia about my breast cancer diagnosis?

[Weirdconditionaltense]

I'm going to give the background first. My mum has dementia which was diagnosed about 18 months ago, She lives alone, with carers twice a day, which she still doesn't seem to understand, as in she often asks me what their role is.

So in the last week I've had the results of a biopsy and I have breast cancer. Caught fairly early soon so hopefully after the treatment it's going to be ok. I live half an hours away from mum and I go to see her usually about 3 times a week.. My brother sees her about as often as me, He's a vulnerable adult, suffered with psychosis but these days it's under control. I work 3.5 days a week, some pressure in the job but I think my employers are going to be understanding since I gave them the news.

Have told my 3 adult kids, my in-laws, various close friends, but now don't know how to tell my mum. Or my brother.

Does anyone have similar experience please? It's mainly telling my mum, the issue.

She was a nurse, and has nursed lots of people in the 60' s and 70's although mainly children, with cancers. I don't want her to feel really bad about it. I can't face her questioning me about it every night on the phone...Any response, any ideas how to approach it would be great. Thanks.

Sorry OP.
I would not tell her in case she becomes too anxious. Or your brother.

Hey OP, I have BC as well. You don’t have to do anything just yet, I think it’s wise to just do what will support you at the moment, you’ll get the hang of it all but you have time to digest.
if it’s any comfort at all, I’ve had over a year of chemo so far and more to come, I always say to people if I’d realised what it would be like I wouldn’t have been so frightened. People have been lovely, the treatment has been manageable, staff feel
like family and I managed to keep enough of my hair with the cold tap to never have to do the skinhead thing, which personally I didn’t want to do although everyone I know who has done it looks fabulous.
we are living in a golden age of cancer treatment, statistics online are rapidly out of date as survival rates increase. It’s frightening but there’s much to be positive about. You just need to really prioritise soothing your own nervous system for now.

Will she remember @Weirdconditionaltense ? If not, she'll just get distressed every time you have to repeat the news. Maybe leave it a while and see how she is when it gets to be noticeable? Then you can always decide whether to tell you're feeling a bit poorly, but things are ok.

My late father used to ask about my husband as he couldn't remember I divorced a while back. I stopped correcting him as he worried about me being single. When he asked, I would just say husband was busy working so me spending time with DF wasn't a problem. It kept him from getting upset and anxious, which ultimately is what you are aiming for with dementia. It's OK to protect them from the truth if there is no benefit to them.

I hope your treatment goes smoothly. 💐

Thanks Drifting. That's a lovely post. yes I know I have to prioritise myself and I'm glad I started the thread now because I've had lots of helpful perspectives..

I won't be telling my mum anything anytime soon, I know that now.

Thanks for your notes on the chemo especially..I am very apprehensive about it so it's good to read what you say about your experience. Best wishes. :)

I have just been through breast cancer treatment and never told my parents. I cold capped through chemo and so visibly I looked fine, and I didn’t have many side effects. Saved a lot of stress and worry for all, it’s not for everyone but I’m glad I kept it to myself

@Fushia123 thanks for your post. I've come round to the idea of delaying saying anything to her and also keeping it from my brother for as long as I can. I'll see about increasing the number of visita from carers or possibly a befriender.

Sorry that you've also been through the same and you couldn't tell her for a long while but i can see why you wanted to wait for the right time..Thanks for your advice .

My mum is in the same position and I definitely wouldn't tell her. She wouldn't hold on to the information and would not be able to support in any way. Re the hair, I'd just wear a scarf, hat, wig, whatever. We don't tell mum anything that would upset her anymore. Tbh even family members who have died since her diagnosis, she doesn't ask after them or seem to miss them, but if we told her they had died she would be distraught (briefly) each and every time we told her.

@Daisy03 can I ask - without asking for too many details - how you think you managed to get through the chemo without too many side effects? Was your health very good to start with, or do you think it's all about the specific chemicals they used or any other factors please? I still haven't really accepted it I suppose in my heart. Thanks in advance.

I was very fit and healthy when I was diagnosed(apart from the cancer obviously). I was on weekly paclitaxel and I tried to keep as fit as I could throughout. I strength trained throughout and although I cut down on cardio I walked a lot. I know I was lucky compared to a lot of people, I tried to look at it as positively as I could (while acknowledging it’s a truly shit situation).
steroids made me very hungry but I tried to ignore that and eat healthily.
have you been told what type of chemo they’re suggesting?

I would tell her you are poorly if you need to but keep the detail / frame it more vaguely as a stomach issue or cyst on you breast which is under investigation or need a course of medication etc…The reason being that she may understand but relate it to her previous nursing experience before modern treatment, and this would be distressing for her and you.

Ok thanks I'm glad you could keep the walking up..can't imagine how much energy I'm going to have.

No, I don't know yet about the chemo regime. Thought I'd have an appointment with an oncologist this week but I seem to be wrong there. Got a feeling they are still waiting on something from Pathology about the Her 2 business. I'm a bit scared to Google that. Just hope to hear more from them before long . Kind of desperate to get the chemo started if that's what is needed.

@Ritasueandbobtoo9 thanks yes that makes a lot of sense. Cheers.

Op, you are honestly at the worst part- waiting, uncertainty, fear. Once you know the plan, it does get better. Treatment is tough, but so are you.
I really recommend the brilliant carolyn garritt https://oomph.london .
please search for support from breast cancer now- excellent helpline, and macmillan.
and certainly keeping as active as you can before treatment( and during when you can) helps massively.

I was faced with telling or not telling my mum something important. She had dementia, too.

I decided to tell her once because I felt it would be morally wrong not to tell her. But after she forgot a couple of weeks later, I never mentioned it again.

My case is different because there weren't other people around to bring it up. I think you're wise to not mention it just now.

I assume you don’t know your her2 status yet? I was triple positive so it did take a long time of treatment, though to be fair a lot of that was just injections every 3 weeks, and I’m still on tamoxifen. Hopefully as you’re caught early it won’t be too bad. As someone else said the hardest part is waiting once you know what it is you just kind of get on with it

Hi @Daisy03 I'm sure they will explain the HER thing soon..to be honest I don't want to know about it at the moment, still processing things. all I know is my cancer would not respond to tamixofen..How that affects the chemo treatment I wouldn't know. Apologies if this comes across as rude. I'm just limiting what I have to think about for now..Thanks again..

I had a very similar experience with my DM who also had mixed dementia and had also been a nurse.

She had been aware of the thing I was concerned about in the early stages but I was fobbed off by GP for a very long time and DM forgot about it. By the time I finally got diagnosed, my cancer was more advanced so required lymph node clearance and a year of further treatment. However, by then my DM had moved to a care home several hours away to be near to my sibling so the only contact I had with her was by phone and Skype calls. Fortunately I was able to hide it all from her and she died never having known.

I am glad to have spared her the upset and worry as I know it would have tore her apart.

@thesandwich,thanks for your post. yes I'm sure it will be better when I know what they're going to do with me. Thanks for the link as well. Yes I'll look into some support groups online or in person..Many thanks.