I have just joined the group and this if my first post. My mum was diagnosed with Alzheimer's a year ago, probably a year after the family began to suspect something wasn't right, although Mum was in denial there was anything wrong with her memory. The diagnosis came as a shock to us all and my dad felt that we shouldn't tell mum the full story as it would distress her and have a negative impact on her well-being. She has always been reluctant to confront health problems and tends to bury her head in the sand. At our request, her consultant at the memory clinic explained her diagnosis using the term "memory problems" rather than the words dementia or Alzheimer's and we have all continued in this vein. Mum is now on Donapezil and Memantine and has continued to deny there is any issue until very recently, when she has gone quite sharply downhill. Both her short-term and long-term memory are poor and she can't remember large chunks of our family history, and the other day asked: "What is wrong with me? Why can't I remember?" It caught us completely off-guard and we don't know how to deal with the questions, as she has never been interested in knowing the answer before. I just replied that she's getting older and her memory is poor and not to worry. We have decided it's better to try to keep things in present tense, rather than talk about the past, but she often asks questions about where we used to live etc. Have others here not been entirely open about naming the diagnosis or do most of your loved ones know exactly what their condition is? I worry that telling her she has Alzheimer's will be really upsetting to her but want to be as honest as I can without distressing her unnecessarily. Any advice gratefully received. Thanks
How honest should we be?
- Thread starter TracyS
- Start date
Hi @TracyS and welcome to DTP. I think the way you have handled it is spot-on
It is very common for people with dementia to be unable to understand that they have anything wrong with them. Mum was the same. The doctor did, in fact use the word "Alzheimers" when he gave us the diagnosis, but it seemed to go right over her head and she got annoyed if I said she had Alzheimers, so I stopped and just referred to her "poor memory", which she would accept. Occasionally, though (only a couple of times) she had a sudden flash of insight and said "Ive lost my memory. What is wrong with me?" I did not tell her that she had Alzheimers as I knew that this would upset her further, so I just said "I know, mum. Your memory is getting quite bad, isnt it?" and then made her a cup of tea, or suggested that we went out (she loved going out) and it was forgotten again within minutes.
When someone with dementia is unable to understand the truth, then being honest with them does not work - usually they either get very upset, or annoyed. This doesnt help anyone, so sometimes you have to use "love lies" (or "therapeutic untruths" if that concept is easier for you) so that you can give them an answer that will meet their need and not cause distress.
It is very common for people with dementia to be unable to understand that they have anything wrong with them. Mum was the same. The doctor did, in fact use the word "Alzheimers" when he gave us the diagnosis, but it seemed to go right over her head and she got annoyed if I said she had Alzheimers, so I stopped and just referred to her "poor memory", which she would accept. Occasionally, though (only a couple of times) she had a sudden flash of insight and said "Ive lost my memory. What is wrong with me?" I did not tell her that she had Alzheimers as I knew that this would upset her further, so I just said "I know, mum. Your memory is getting quite bad, isnt it?" and then made her a cup of tea, or suggested that we went out (she loved going out) and it was forgotten again within minutes.
When someone with dementia is unable to understand the truth, then being honest with them does not work - usually they either get very upset, or annoyed. This doesnt help anyone, so sometimes you have to use "love lies" (or "therapeutic untruths" if that concept is easier for you) so that you can give them an answer that will meet their need and not cause distress.
My Mum is very aware that she cannot remember anything (and I mean anything!) and that she cannot process things people say very easily. Several times a day she will get upset and ask what is wrong with me? What can I do to get better? What did I do to deserve this. It is extremely traumatic for us all but part of our experience with this dreadful condition.
Her mother had vascular dementia too so we say that she has what her Mum had which is a memory problem. We try to use a tone of voice that is as reassuring as possible. It makes her feel a bit better about her situation knowing she takes after her Mum. We have never once used the term dementia as in the early days (diagnosed 12 years ago) it would have terrified her and know she wouldn’t understand what it means.
It has taken some of us a long time not to say “Do you remember ...” or “You used to ...” etc to her so as not to remind her that she can’t remember. It is quite a hard thing to avoid particularly when the PWD’s conversation is limited but one learns. She does like looking at photos though so that is a gentle way to remind her of people she has forgotten.
Your desire to be truthful with your mother shows commendable respect towards her but it won’t help her and may do more harm than good. “Memory problems” is actually accurate (although it is so much more than that too) so stick to that.
Her mother had vascular dementia too so we say that she has what her Mum had which is a memory problem. We try to use a tone of voice that is as reassuring as possible. It makes her feel a bit better about her situation knowing she takes after her Mum. We have never once used the term dementia as in the early days (diagnosed 12 years ago) it would have terrified her and know she wouldn’t understand what it means.
It has taken some of us a long time not to say “Do you remember ...” or “You used to ...” etc to her so as not to remind her that she can’t remember. It is quite a hard thing to avoid particularly when the PWD’s conversation is limited but one learns. She does like looking at photos though so that is a gentle way to remind her of people she has forgotten.
Your desire to be truthful with your mother shows commendable respect towards her but it won’t help her and may do more harm than good. “Memory problems” is actually accurate (although it is so much more than that too) so stick to that.
The memory clinic consultant and the nurse told dad his diagnosis straight to his face and asked if he understood, dad said yes then immediately forgot so I stick with the memory problem as it seems to work best.
Dad has occasionally asked me if there is something wrong with him and I just perhaps he has a bit of a fuzzy head today, which he is happy with.
Dad has occasionally asked me if there is something wrong with him and I just perhaps he has a bit of a fuzzy head today, which he is happy with.
The Banjoman has Lewy Body Dementia also named as Lewy Body Disease so that is the version I used with him and when he was having difficulties with memory or struggling with something I would say that his brain wasn’t working properly because of the Lewy Body Disease. The Memory Clinic Dr. told him he had dementia but I don’t think it really clicked with him.
We never told my mother she had Alzheimer's, as she would get angry if the A word was used, or dementia. I would say "Your memory isn't what it used to be" and that was okay. A few times she said she thought she was losing her mind. I told her no, she was simply losing her memory. For some strange reason that seemed to comfort her.
When it comes to dementia, I firmly believe that honesty is a vastly over-rated virtue.
When it comes to dementia, I firmly believe that honesty is a vastly over-rated virtue.
My mum refuses the diagnosis of dementia but accepts the “loss of short term memory” which the consultant explained the dementia as. She still remembers this phrase after two years, and trots it out regularly. When she says, why can’t I remember things, I remind her of what the consultant said and tell her “it doesn’t make any difference to me mum, I still love you”. All I can do is say “it must be awful mum, but remember we still love you, and we always will”. I’m not sure it makes her happier, but it settles her.
Honesty, with Dementia, is a very moveable set of goalposts.
With the likes of GP's, Consultants etc. then the truth must come out quickly, in order to get the best results, even if this upsets the person.
Other decisions, regarding safety, both of the person, and others, then what has to be said or done to achieve that goal is correct.
Then at times you just have to do, what you have do, regardless.
Do not give choice in important matters, this is where it is best to say nothing, just make the arrangements, and at the very last moment take action.
Given time or choice, the dementia sufferer will not either agree, or make a sensible choice, the default position is always to stay the same, "I am managing perfectly well, and don't need help!" This from a person who has not left the house, made a meal, had a bath etc for more than 2 years without a lot of help, from usually 1 family member, who is now at the point of collapse.
Bod
With the likes of GP's, Consultants etc. then the truth must come out quickly, in order to get the best results, even if this upsets the person.
Other decisions, regarding safety, both of the person, and others, then what has to be said or done to achieve that goal is correct.
Then at times you just have to do, what you have do, regardless.
Do not give choice in important matters, this is where it is best to say nothing, just make the arrangements, and at the very last moment take action.
Given time or choice, the dementia sufferer will not either agree, or make a sensible choice, the default position is always to stay the same, "I am managing perfectly well, and don't need help!" This from a person who has not left the house, made a meal, had a bath etc for more than 2 years without a lot of help, from usually 1 family member, who is now at the point of collapse.
Bod
What you are doing sounds absolutely right, Tracy. My mother did know, in the early days, that she had Alzheimers, and she would mention it sometimes but that is quite unusual. If she hadn't, I would have done the same as you and just refer to memory problems/getting older.
@Rosalind297 I agree, I still find that difficult even now (my mother is getting towards late stage with very limited conversation). It's just a common thing to say, particularly with parents because of your shared history - which of course your parent no longer remembers.
@Rosalind297 I agree, I still find that difficult even now (my mother is getting towards late stage with very limited conversation). It's just a common thing to say, particularly with parents because of your shared history - which of course your parent no longer remembers.