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telling parent they have dementia - Carers UK Forum

telling parent they have dementia

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hi ,mum has her brain scan 29th january,to see if she has dementia.i think all of us close to her already know the outcome with her strange behaviour.right now she has gone to bed earlier than usual , and is seeing faces on the curtain and in the lights.she says there is a cat on the curtain too.when the time comes we dont know whether to tell her she has it ,because at the minute she thinks she is the normal one and we are the strange ones because we cant see what she can see.sometimes we just say the things have gone now but she still says they are there.dont know what to do to make her believe that there is nothing to hurt her and she is safe.it doesnt get any easier.she is 85.regards jane
Jane, hi - this is only my own personal opinion, but I don't think there is any point in telling someone they have dementia. It doesn't stop it progressing inexorably, and there is neither treatment nor cure. In fact, for that very reason, personally speaking, I think it even be regarded as 'cruel' to tell someone they have an incurable, progressive and in the end terminal condition.....???

Also, and this is the intractable paradox of dementia, I doubt she would either (a) understand or (b) believe it - ie, the dementia itself would make it impossible for her to process this information. As you are already discovering, 'her truth' is more real to her (the 'invisible cats') than anyone else's truth.

if you tell her, what do you hope will be the outcome of her knowing? Do you hope that she'll say 'Oh, I see now - that/s why I've been behaving oddly.' Because I truly don't think she will.

Of course,. it does all depend on just how the dementia is affecting her cognitive abilities, her ability to 'be aware of herself'. Some patients DO understand they have it, but is that only when it is very 'mild'?

With my MIL, her dementia clearly, with hindsight, was 'inching forward' - I used to think it was just old age in general that was 'slowing her down', and making her a bit more 'clingy' or 'dependent' on me (she was 89 after all!). But as I took over her care, what I....eventually....came to realise that her very 'passivity' about her own life....she simply did less and less - she didn't even go and make herself f a cup of tea, was not (just!) because it was much nicer for her to have ME go and do everything for her (I waited on her hand and foot!), but because she was actually forgetting how to do it. For a while she could do things, such as make herself toast, with 'guidance' and me standing there, saying 'Let's put the bread in the toaster, let's get the butter on the toast', that sort of thing - sort of, really, like teaching a little toddler how to do things.

Dementia does take people in different ways. With Alzheimers dementia, it progresses, so I have read, in a particular way, affecting the brain;s ability in an 'ordered progression' of worsening abilities. With vascular dementia, which is parts of the brain dying through lack of blood supply (I think!), it can be more random as to which bit of the brain is impacted, For example, my MIL never had delusions, the way your poor mum has.

Overall, when it comes to caring for those with dementia, many on this forum advocate a policy of 'Kind Lies' - we don't 'force the truth' on them, as it can be unkind, hurtful and, to be honest, pointless as they can't take it in anyway. When it comes to 'delusions' or 'confabulations' (where they tell you people who are long dead have been to see them, or that people are doing thigns they are not) the explanation, apparently, is that the brain is trying to 'compensate' for the fact that it is losing touch with reality - it 'invents' another reality instead.

With the 'Kind Lies' strategy, we don't say to them 'That's not true, Mum, because Uncle Bob died forty years ago!' etc, we simply try and change the subject, not actually 'agreeing' with them, but not 'disagreeig' either. It's a bit of minefield, and sometimes walking a tightrope.

The main goal is to keep them as happy, as least distressed as possible - whether they are living in the 'real world' or not is less important???

If your mum is diagnosed with dementia, it's obviously very distressing to YOU, but it may not, you know, be that distressing to HER...an that, surely, is something to be glad about....?
thanks jenny,you are so right ,it is a minefield trying to say the right thing all the time,it gets very tedious.we have only been dealing with this since october 2017,so it is very early days.the reason i said about telling her or not was because she will probably say i never tell her whats going on,when i usually do,even if i have to be economical with the truth so she doesnt keep asking the same questions,for example about appointments etc.i havent told her about the scan yet and probably wont until the day before.as a friend said to me , think of it as an adventure with dementia.sometimes its not easy to keep a sense of humour,but i think you have to try.regards jane
Yes, definitely a minefield! We learn as we go, alas, and there is always 'hindsight' - I look back now and see there were things I should have done I didn't, and not done things I did, but, hey ho, that's the nature of it...(sigh)

Re the scan, you could always tell her, if she asks, that the doctors were worried she might have had one of those 'mini strokes' that would show up in the scan on her brain. (Which, indeed, she might well have, as they can be the 'cause' of vascular dementia in the first place, damaging portions of the brain)

Do take advantage if the forum - there's a wealth of cumulative experience here of all of us who have the Dementia Care T-shirt! And lots of practical advice too, and financial (eg, from the team of experts at Carers UK itself, whom you can contact best by email - the helpline is often busy)

Lots of things we learn as we go financially as well - for example, on this forum I learnt that someone with dementia is exempt from paying council tax if they are still in their own home. I never knew that!
Hi Jane.
My husband is in a nursing home because of strokes and vascular dementia.. He sometimes accepts he has had strokes,( not always,) but wouldn't believe he has dementia even it I told him. None of the residents in middle stage do. It's possibly a blessing that they don't?? Not many blessings in this awful illness.
You will find your way of getting through. It's not easy,I wouldn't dream of saying it is. However, in my opinion, the kind lies are better and it's easier to go along with what they say..
This is assuming that dementia is diagnosed.
My thoughts are with you.
Has anyone told you that mum is now EXEMPT from council tax? Eligible for Attendance Allowance. This could be a good time for a family conference to agree how to manage this, and plan for tbe future. Does anyone have Power of Attorney?
Hi Jane, I just read your post in isolation from any of your previous posts. The symptoms you describe here, seeing things that are not present in reality, seem to be signs of psychosis (that i understand can be treated by medication). Are the doctors performing the scan to help distinguish between dementia and psychosis and then determine the best treatment?
Good point!

'Scanxiety' - ie, waiting for the results of a scan, is always a trying time. Have you asked the doctor what they are looking for, and what the options on what they may find, may be? Then, at least, you are better prepared for the results, and what to do about them.
hi jenny , mum had the memory tests and the doctor referred her for a brain scan after those.she said if it is dementia at least we will know what we are dealing with , although there is not much that can be done , only pills for slowing it down,depending on the type of dementia.thanks jane.
The scan is important, as it will show the type of dementia, I read somewhere that there are 200 different types! Treatment varies depending on the type.