Im sorry to hear about your mum, I am also sorry because I don't feel anyone can answer your question for you. Some people choose not to tell there loved ones and others do tell them. Only you as a family unit can choose the path you need to take on this one. If you were your mum would you want to know? Read through some of the threads which I'm sure you already have done, then ask youself the question again. Would you want to know?
Sorry this may not be of much help to you, please keep posting and we'll help you as best we can.
Mum's GP eventually told her because she kept asking why she was tired and forgetful (it was a lot worse than that by then!!!). She came and told me with a big smile that she had dementia. I still remember her being happy that she had a name to explain why she felt so bad. However by then she had lost her understanding as to what this might mean something for which I am truly thankful as I would have hated her to be by herself when she got this diagnosis. (my Dad was on his own in hospital when he was told he had cancer, again, because he asked)
I don't think that there is any right answer to your question, it is as people, time and circumstances dictate.
As everyone else has said - it very much depends on the person. My mother was actually comforted by being told that the reason she felt as she did was because she had had a stroke. Now I didn't keep on about the deficits it had left her with, but yes, she did find it comforting to have a name for it. Mind you she also found it comforting to be reminded how old she was (88, 89, 90) since she kept sliding back in time and thinking she had to go to work and worrying about how tired she was. Being told how old she actually was normally resulted in a smug smile and a "well no wonder I feel tired - that's quite a good age". However, she was prepared to accept what I told her - some people might find it impossible to believe this information and would be unduly depressed or angered by it.
Everybody is different. Would your mum benefit if she knew what she was suffering from, and what was likely to happen ?
My mum would not have benefited from being told she had AD, so we didn’t try to make her understand she had the disease. She was more than happy to continue thinking she was just a little forgetful. We used the old joke about remembering to put on clean knickers in case she got knocked down by a bus to cajole her into putting her affairs in order. Making sure she made an Enduring / Lasting Power of Attorney was most important, so we could keep the home finances under control.
As mum progressed through the stages I worked hard at entering the world that she was in. I had been her son. I became her husband and then her father. In my mother’s case I thought this was a far more appropriate way of carrying on than trying to explain to her that she had this disease.
I am sure you will make the right decision for your mum.
In the early stages, before I understood much about dementia, I felt compelled to tell my Mum the truth - ie. "you have AD". She was HUGELY distressed and denied it categorically - absolutely could not accept it and was FURIOUS with me for suggesting she had it.
I learnt from that, and many other experiences, that our "truth" is not always "truth" for the dementia sufferer. We have to enter their world - accept that for them, the truth is sometimes different.
Mum still complains about being "mad", "stupid", "lost my marbles" and is very unhappy (though getting less aware, thank goodness!) of her problems. But she will NEVER accept the diagnosis.
So we just talk about "memory problems" (which, as Hazel said, is still true) and she copes with that.
You know your Mum best - the choice you make (as Hazel said) is : 'Which would be kinder to your mum?'
You are facing a long and difficult road ahead. I'm so sorry for your Mum, and for you. Please come to TP whenever you need support, comfort, solace, a laugh or somewhere to "rant"!
When Mum say she cannot understand what is wrong it seems to calm her to be told it is just memory problems - part of an illness which she cannot help having. For a while she seemed to think how she felt was some type of punishment for something so I feel it helps her to know that it is an illness and reassure her that it is not her fault. We have this conversation very regularly.
As with so much with Alzheimers I do not think there is right and wrong answers and you have to try to say what the sufferer needs to hear at that time. For some reason I know telling my Mum she has Alzheimers would really upset her - a big strange word which would no mean anything to her and would make her anxious. Part of her can at least temporarily accept memory problems as something that might happen with age. That is part of the repeated conversation which includes the information that she is now approching her nineties. (She cannot believe she is this age or that I am so old)
The most important thing is to try not to say anything to upset the sufferer more than possible but it all depends on them and it will change with time.
When the Consultant confirmed that my husband had Alzheimer's, he was relieved to know that there was a name to it and he was not going mad. Although I took my husband though each question that he asked and he wanted the truth. But that was my husband and although he did not realise that I was his wife, he just saw me as someone there every day caring for him.
On one occassion when we were with my 2 daughter(his step children) he told then that I was so kind towards him and protected him. So that was four and a half years ago. I lost my husband from the time of diagnoise.
It is really how would your Mum react?
It is such a difficult question to answer as like the illness, everyone is different.
I wish you sincere best wishes in finding your answer.
I had another thought after posting regarding my Mum. She is quite far down the road with AD and your mum may be at a completely different stage. I know another suffer who is very aware she has the disease and is trying to use the informtion positively to take any action she can to slow progression and also to get her affairs in order eg set up POA. She seems to have been strong enough to be able to accept the diagnose and do what she can at this point to plan for the future. As several people have said it depends on your situation.
Sorry to ramble. There are so many people on TP who will be able to help you more than I can. It has been a great source of information and support to me for the last 6 months.
I'm so pleased I found this site your comments have been so helpful. I didn't expect 'the answer' as I know it depends on the individual my concern is that family members are divided on the issue. Initially I took the position that Mum had a 'right' to know and that if I was in her position I'd want to be told, however, I remember a good friend of mine once saying 'don't do what is right do what is good'. This has stuck in my mind over many years and now it has given me cause to pause. I will pass your comments on to my family which will help us to decide what is best for Mum. Thanks again.
For a while she seemed to think how she felt was some type of punishment for something so I feel it helps her to know that it is an illness and reassure her that it is not her fault. We have this conversation very regularly.
Thank you so very much. I was quite tearful to read your paragraph above. It is EXACTLY what happens with Mum. I'm sure this must be common with dementia patients, but this is the first time I've read it on TP (as far as I remember!!)
It is amazing how helpful it is to read something that so exactly reflects one's own experiences. Thank you from the bottom of my heart.
I think this attitude (that it is some how her "fault") lies in the old fashioned view of people with mental illness and people with disabilities. Sad to say, I think many of the oldest generation still believe (in their hearts if not openly) that people with disabilities or people with mental illnesses have somehow brought these conditions on themselves.
My beloved Mum (my patient with AD) still thinks that my sister (a nurse) and me (a teacher) must not be very good at our jobs because we work mostly with people with disabilities. Mum used to ask me why I didn't work with "proper" people?!!!!
From Mum's perspective, people with disabilities or with mental illnesses were / are somehow "lesser" people. She would never accept my long term diagnosis of "depression", always insisting I was just "a bit down".
No wonder when it is they who are the patients , people like my Mum feel they have somehow brought on this disease by their own faults.
Like you, Christine, I used to constantly reassure my Mum this was not the case. Fortunately, in the last few weeks/months, Mum has been complaining less of this. I think she is getting less aware - altho' yesterday she had a weeping session over it all, so she still realises there is something very wrong with her thinking. Poor darling.