Should I tell her it's dementia?

[Louise83]

I see this question has been asked on here before but looking for some advice re my own situation with my mum.

She was diagnosed with mild dementia a few months ago. She is aware that she has memory problems and confusion, but it's never bothered her and she's never seen the need for all the tests etc, she's just gone along with it. She always put it down to old age. She's 73.

Obviously the day she was diagnosed she became aware, and was understandably upset and quiet. Since then I haven't mentioned it again and nor has she.I refer to her new medication as the 'memory pill'.

There have been a couple of times recently where she has been upset when I've had to explain that she's mixed something up (I try not to bother pointing things out unless it is absolutely necessary). On the occasions she has became upset she moans 'what is wrong with me' etc, and this morning she was in tears saying that she felt useless, both to me and to herself, and apologising for the 'burden'. She also mentioned that she's not been sleeping well as she lies in bedding worrying about being 'useless'.

I have explained that it is something in her brain making her like this and it's not her fault, but wondering if I should just come out with it and use the word dementia, so she knows exactly what is causing this in the hope it brings some clarity for her. I don't want to upset her even more, although the chances are if I tell her she will have forgotten about it in the next day or so.

It's such a tough one and I can see from previous threads that people have struggled with it. I guess there is no definitive answer!

 

[northumbrian_k]

I'm not sure that telling her that she has dementia will do any good. When she was first diagnosed my wife used to ask me what was 'supposed' to be wrong with her. If I said that she had Alzheimer's Disease she would either say that I had made this up or ask 'how long have I got?'. Hours on end of that question put me off ever mentioning it again and I gave up on any attempts to get her to read the booklet we had been given on 'living well' with dementia. Giving a name to something may cause more worry than trying to skirt around it as you have been doing.

 

[Sirena]

My mother was one of the very few who knew she had dementia in the earlier stages, and it certainly wasn't any comfort to her. It's the illness which is causing the problems, and it won't be resolved by telling her she has dementia. It will either terrify her, or she'll forget. I don't think I'd use the word, I'd carry on as you are, referring to it as general memory problems.

 

[canary]

Mum never understood that she had dementia, even though the consultant told her when she was diagnosed and several doctors have said that she had dementia - it just seemed to go right over her head as if they were talking about someone else. She would accept that her memory "wasnt as good as it had been" so I just referred to it as her "memory problem".
Occasionally she would have a flash of insight, get terribly upset, tell me that she had lost her memory and ask what was wrong with her. Even then she didnt seem to understand if I told her it was dementia, so I just used to give her a hug and say "I know, we are all looking after you"

 

[mickeyplum]

My mother was one of the very few who knew she had dementia in the earlier stages, and it certainly wasn't any comfort to her. It's the illness which is causing the problems, and it won't be resolved by telling her she has dementia. It will either terrify her, or she'll forget. I don't think I'd use the word, I'd carry on as you are, referring to it as general memory problems.

It was like reading about my husband and me. From the diagnosis I always asked the doctors not to use the word dementia to him. This was against my family's wishes as they said if I had an illness I would want them to tell me. Not if it was dementia and I couldn't understand it, I wouldn't.

At first when he said his memory was worsening, I would say that mine was too and not to worry. As time has gone on and he's mentioned it I've tried to explain that as we get older changes happen in our brain, as they do in our heart and kidneys etc, and that it's the changes in his brain that are affecting his memory but it's nothing to worry about.
I don't think he retained what I said for longer than 2 seconds so I've since reverted back to just saying, 'It's not important, don't worry about it.' which seems to soothe him.
We just have to do what we feel best for each individual and hope we get it right.

 

[Rosalind297]

Mum frequently asks what is wrong with her and if there are other people like her. I just say, quite honestly that there are hundreds of thousands of people like her and, not so honestly, that it’s just the ageing process (she is 92). She often asks why she is being punished too and we have to re-assure her that that has nothing to do with it. She also calls herself a “stupid old woman”, “half sharp” and “going doolally “. Her mother had vascular dementia too so we occasionally say that she is just taking after her Mum. She was diagnosed in 2007 and we have never once used the word dementia. It used to frighten her before the diagnosis (because of her mother) and she wouldn’t understand it now.

One day the word itself will be meaningless to her so why use it now when all it can do is cause fear and upset? Gentle white lies are what is called for. As time goes on you will get used to telling them in all sorts of circumstances.

 

[Sirena]

At first when he said his memory was worsening, I would say that mine was too and not to worry. As time has gone on and he's mentioned it I've tried to explain that as we get older changes happen in our brain, as they do in our heart and kidneys etc, and that it's the changes in his brain that are affecting his memory but it's nothing to worry about.
I don't think he retained what I said for longer than 2 seconds so I've since reverted back to just saying, 'It's not important, don't worry about it.' which seems to soothe him.
We just have to do what we feel best for each individual and hope we get it right.

I agree, the important thing is to reassure. A person with dementia is often unsure and anxious without being able to understand why.

I remember a member recently saying that her husband kept waking her up at night and saying "sssh it's alright'. He only stopped doing when she realised that he was not trying to reassure her, he wanted reassurance himself - as soon as she repeated it back to him, he settled down.

 

[Louise83]

Thanks for all the replies, I knew the answer deep down is to carry on as I am and skirt around it.

 

[Champers]

By coincidence, I got an very anxious phone call from my my mother early this morning absolutely distraught that, when I took her to the memory clinic last week, someone had snatched her handbag. That certainly didn’t happen as we actually had a discussion before we attended, about her not needing it and to leave it at home.

I realised, when my post was delivered just before lunch, why she had got herself in such a state. I received a copy-in letter that she had clearly also got from the memory clinic today which specified her condition, what had been observed and what the recommended follow up actions were to be. She never mentioned it at all on the phone but she was very, very fixated on events on that day so I’m pretty sure seeing the diagnosis in black and white has terrified her and she’s still vaguely aware enough to grasp the reality so she’s focused her fear on a “missing” handbag.

 

[canary]

@Champers I think you are spot on.
People with dementia forget what has happened, but they remember the emotion. When she phoned she had probably forgotten about the letter, but remembered that she was upset and it was something to do with going for that appointment- so confabulation took over. Hence the "snatched" handbag.

Im sorry she got so upset. Try and remove that letter.

 

[Rach1985]

This is something we’ve been dealing with with my dad. He is adamant he didn’t get his memantine from the chemist and the chemist is adamant that he did. I made the mistake of saying to him Dad you have Alzheimer’s you need us to come chemist with you now. He snapped back I know what I have, I said well let us help you then. The whole conversation was a disaster and I wish I’d never said it. He told my mum this morning that he doesn’t have dementia he isn’t an idiot and doesn’t need his memantine anyway he just has some memory problems. My mum said yes those tablets will help with the memory. I’m not sure he comprehends what’s happening to him and I feel like I messed up by saying he has Alzheimer’s. I won’t make that mistake again.

 

[Grahamstown]

Even though you told him that, if he is anything like my husband he will forget about it and later on completely deny he has anything wrong with him at all. Even though he behaves like a complete invalid he thinks he is perfectly fine and that keeps him contented. If I say that he is not well as an excuse for him not to do something, he gets quite upset and denies it strongly.

 

[Louise83]

We had a visit from one of the support workers from the clinic this morning, she comes regularly to check mum's blood pressure etc while she is trialling new medication.
I had the chance quickly to advise her that mum doesn't know it's dementia, then the 3 of us had a chat about how mum is feeling useless, not understanding why she is like this etc. We got some helpful advice, such as leaving a visual aid like a simple note outlining that something in her brain in causing her forget things etc, so mum can see it when I'm not there and be reassured she is not "stupid" or "useless". Worth a go.

 

[Dunroamin]

I think this is difficult for many people. I have an early diagnosis of Alzheimers and am very aware of both diagnosis and implications for the future. I have professional knowledge and insight which is a double edged sword for me. However, knowing my diagnosis ensures that I can get everything in place as I want it to be (funeral plans, POA, DNR and so on.) I am also planning a final trip to the antipodes. Being aware also means there are no elephants in the room with either family or friends.

Every person is different and on a different road and there is no easy answer to your question. Trust your instincts and stay strong if you can.