Should I tell Mum she has Dementia?

Bailey Bobs

New member
Jan 29, 2020
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Hi, my mum has been looking through the file which the carers fill in each morning. She has been reading the notes and seen the entry stating she has Dementia and has asked me about it. Should I tell her the truth knowing that she will forget about it. I have tried in a roundabout way of saying 'well everyone forgets things once in a while' to that she replies 'I don't forget things'. Any help would be appreciated. Thank you.
 

cobden 28

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Dec 15, 2017
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I was present at my late mother-in-law's hospital bedside when she was given the diagnosis of vascular dementia and she didn't seem too upset about it at the time. For the rest of her life we carried on treating MIL as normal, not mentioning dementia so as not to upset her. She eventually died of a heart attack.

Only you know how your Mum will react, but if she's seen her hospital notes I'd suggest not mentioning the dementia again so as to not upset her.
 

Canadian Joanne

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Apr 8, 2005
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Toronto, Canada
If it were me in your situation, I wouldn't tell her and I would have the file quietly moved where she couldn't see or access it. The very nature of the disease means that most people cannot comprehend the nature of their disease. I have met only one person who was aware he had AD and it was a revelation and a marvel to me.

I think it would only upset your mother. She may well be aware of her mind's shortcomings and is desperately trying to deny it.

We never told my mother she had Alzheimer's but if ever the word were brought up in her presence, she would immediately say "No one in my family has ever had Alzheimer's". The closest we got was that "her memory wasn't what it used to be".
 

Pete1

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Jul 16, 2019
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Hi @Bailey Bobs, welcome to the forum. It is a dilemma, it really depends if it upsets Mum or not. If it causes distress to mention it then don't, generally I found it served no purpose. I would just say that Mum ' just got into a pickle' occasionally when she questioned what was wrong with her (initially I used to explain in detail, she had normally forgotten the next day and it seemed to serve no purpose other than create increased anxiety). If you feel it is important for Mum to have access to the carers notes, perhaps speak with the company and advise that Mum reads through the notes and not to mention dementia in the daily notes as it causes her anxiety (not sure they should be anyway). In short there is no wrong or right approach, it really depends on your Mum, and you know her better than anyone. I hope this helps a little. All the best and keep posting.
 

Bailey Bobs

New member
Jan 29, 2020
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Thank you everyone for taking the time and for quickly answering my question. I am know going to remove the notes from the file so Mum cannot see them. She does get really upset and anxious all the time and I know that this isn't doing her any good. Wish me luck tonight (as it's my turn to call after work to give her tea). Thank you again for all your advice and support. x
 

mancmum

Registered User
Feb 6, 2012
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We always said your memory's not good, or later your memory is rubbish...but hey that guy in the next door room has only got one leg....everybody is falling to bits.
 

Sirena

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Feb 27, 2018
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Good idea to remove the notes. She probably won't remember asking the question if there is nothing to prompt that memory again.

@Canadian Joanne my mother knew, in the early stages, that she had dementia. In fact she went to the GP and asked to be referred to the memory clinic. That knowledge began to escape her at some point, and five years later her cognitive faculties are so reduced she certainly has no idea (she's late mid stage and in a CH) - but yes, it was pretty remarkable that she realised.
 

Bea69

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Feb 4, 2020
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I didnt tell my mum, I felt it would have been to much for her to handle and would have become very upset, I think not telling your loved one is the right thing, but what is right for me and my mum may not be the case for everyone.
This illness is cruel, robs you of everything that makes us human.
There was a point when mum said to me something is wrong and I am very scared, I held her and promised her I would always look after her and she never had to be scared again as I will always be here for her, she cried and then fell asleep in my arms, that was 13 years ago and she is still with us now, not sure how long for as she has stopped eating and drinking.
 

Wildflowerlady

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Sep 30, 2019
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A bit of a late reply but my dad was told at the memory clinic in front of sister and I he had dementia ( mixed ) it didn't really sink in and the specialist said it was only a word given to his issue and for him not to worry he appreciated that dad had the support from sister and I.
Dad would hit the roof if its mentioned now such as the other week when a letter arrived from his GP surgery headed Dementia Review and for an appointment to be made. Dad said some rather threatening things about what he would do if anyone said he had dementia including what he would do to the GP.
We do not mention the word dementia to him in fact we don't tend to mention his problems to him at all if possible just saying everyone is there to help him but he does get fed up with all the coming and goings into his home and can get pretty annoyed at times.
In dads eyes anyone with THAT 'his words' (dementia) is absolutely mad and he wasn't letting anyone say that about him.
Fortunately the appointment which was with a nurse at his normal GP surgery didn't go too bad although her suggestion he perhaps had a little break/holiday from his home didn't appeal to him at all.
Dad can get quite verbal with his carers so she was thinking it would be a good time to try and introduce dad to the environment of a Care Home for at least a bit of respite on the basis it might be more acceptable should/when he may need to go into 24/7 care. Dad currently lives alone with 4 care visits per day plus a fair amount of support from sister and I.
 

Shedrech

Registered User
Dec 15, 2012
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UK
hello @Bally Gill
just to offer a warm welcome to DTP
sorry to read that your mum is not eating or drinking ... she is fortunate to have you standing by her
I hope DTP will be a support for you