My mum doesn't want my dad to know he has dementia

[Pinenut]

My mum believes that my dad (who has LBD) is not aware that he actually has dementia.
She want's to protect him by not explicitly telling him he has dementia
I don't agree with this but am not an expert so am currently not disagreeing with her directly
I have expressed that I feel he may benefit by knowing so that he can have information and understand more but she disagrees
Is there a school of thought on this? Is it better to know? Or is ignorance bliss?

 

[Tin]

Personally "Ignorance is bliss". I have never told my mother that she has Vascular Dementia, even if she forgot our conversation the next day, that time of telling her would just be too stressful for her and this illness creates all its own stress, anxiety and confusion, so why add to that. Dementia is something that has always frightened my mum.

Although if your mother has to get things in place like a PofA, then the dreaded conversation may have to take place. There are members here that know of their diagnosis and seem to be coping well - life still goes on. Hopefully they will answer your thread.

 

[Bunpoots]

My dad has forgotten he has dementia and I don't remind him.

 

[margherita]

What advantage would there be if he knew?

 

[karaokePete]

I think Tin has said it all.
Knowing that you have dementia can cause stress and depression that many couldn't handle so for them not telling may be best if there is nothing to be gained.
The other side of the coin involves people like my wife. She is the type that wouldn't engage with doctors and therapists, attend scans, take meds engage in any of the therapies that we do together unless she knew why she had to and what good they may do. I told my wife because the positives outweighed the negatives.

 

[karaokePete]

BTW @Pinenut, welcome to TP.

 

[Amy in the US]

Pinenut, hello and welcome to TP. I'm sorry you have needed to find your way here.

In your other post, you mentioned your mother has no help and doesn't seem to want any. I assume this means no care package, no carers, no support group, no day care, and so on? That is a separate topic we would address, as you also state she is in her 80s, as is your dad, and we will get to that.

I am bringing this up as I wonder, from your other post, if there is an element of your mother not wanting to discuss the LBD diagnosis at all, not just with your dad. I am basically wondering if there is a bit of avoidance or denial about the illness, on your mother's part, and if that is where some of this reluctance originates.

I may be mistaken and if so, my apologies. I do not mean to be offensive or accuse your mum of anything.

Sometimes this is also a matter of privacy, in that parents may wish to spare their children this information, or don't want to discuss their medical issues.

If it's simply a matter of not wanting to discuss it with your dad, well, there is no one school of thought on this, but I incline towards not discussing.

Many people with dementia have anosognosia as part of the disease. This is a lack of insight. The brain has been damaged in such a way that they cannot comprehend there is anything wrong with them. My mother has this, and so trying to discuss her dementia with her, or her broken knee last year, is pointless. In her reality, nothing is wrong. Her knee isn't broken, she didn't have surgery, she can walk just fine. Challenging, to say the least.

So that is something to consider.

I am sorry that I don't know much about Lewy Body dementia and can't be a huge help there, although we can point you towards resources.

On your other thread, you ask about resources and support in your area. You might contact the Alzheimer's Society as a place to start. You are very wise to get information and help. Please remember that dealing with dementia is a marathon, not a sprint, so be sure to pace yourself.

Very best wishes to you and your family.

 

[Pedleywe]

My mum believes that my dad (who has LBD) is not aware that he actually has dementia.
She want's to protect him by not explicitly telling him he has dementia
I don't agree with this but am not an expert so am currently not disagreeing with her directly
I have expressed that I feel he may benefit by knowing so that he can have information and understand more but she disagrees
Is there a school of thought on this? Is it better to know? Or is ignorance bliss?

I think information is power, I don't tend to go on about dementia but describe to Mum more about her"forgetfulness"and that she has medication to help her memory.Its difficult ,I was in Denial for a longtime and I'm a Nurse who works in mental health!

 

[love.dad.but..]

My dad was never told although he probably knew something wasn't quite right and became a little frustrated in the early stages he never asked. So for me that is quite a key thing...has your dad either asked or stated he thinks he has dementia? If medication is not being offered and it is only helpful for some types and stages then I wouldn't bring it up. Is it going to make him less or more anxious if he knew? Is it going to make it less or more difficult for your mum as his main carer if he knew?

 

[Beate]

I'm completely with you mother on this. OH was told once he had it. He nodded and never mentioned it again and so neither did I. There is nothing to be gained by telling someone with dementia that there is something wrong with their brain. They often can't process it nor might they believe it. Not telling them is called "love lies" for a reason because it protects them and can make them less anxious.

 

[Pinenut]

Thanks for al your replies
My dad is currently in early stages of dementia so still aware and with it
He has asked recently what the outcome of his illness is
He thinks it’s parkinsons but we’ve all discussed dementia in his presence including the consultant
It’s didfi to know what the best way to deal with this but your comments are reallly helpful
Thank you

 

[Tin]

Thanks for al your replies
My dad is currently in early stages of dementia so still aware and with it
He has asked recently what the outcome of his illness is
He thinks it’s parkinsons but we’ve all discussed dementia in his presence including the consultant
It’s didfi to know what the best way to deal with this but your comments are reallly helpful
Thank you

So it has been discussed then no need to bring it up again. "he has asked recently what the outcome of his illness is" For me there is only one answer to this one, that he will be loved and cared for and whatever comes will be faced together.

 

[Duggies-girl]

My dad has been told twice by professionals and each time he accepted it quiet matter of fact. As soon as they were out of earshot he told me that 'they don't know what they are on about and his memory is normal for his age' then he promptly forgot about it.

Now we talk about his bit of forgetfulness.

 

[yak55]

My mum believes that my dad (who has LBD) is not aware that he actually has dementia.
She want's to protect him by not explicitly telling him he has dementia
I don't agree with this but am not an expert so am currently not disagreeing with her directly
I have expressed that I feel he may benefit by knowing so that he can have information and understand more but she disagrees
Is there a school of thought on this? Is it better to know? Or is ignorance bliss?

I don't mention the word Alzheimer's to my Mum who has it but I do try to explain that she has something wrong here and I tap my head because she keeps saying, since she has been in a care home, that she hasn't seen a Doctor yet!
I say all the ladies that you live with have the same thing and that you have lots of new friends.
She seems ok with that.
Mum doesn't know she is in a care home and I've never mentioned that she is.
She thinks she's on holiday, Butlins usually, or staying somewhere for a while so we can finish decorating.
I say anything that I think Mum wants to hear at that moment in time.

 

[LynneMcV]

Everybody is different and you can only judge what steps to take by knowing the person affected.

In my husband's case it came as a big relief to him to know that there was a medical reason behind his struggle in day to day things - until then he had begun to feel 'stupid' and was losing his sense of self worth - particularly at the way he was treated at the job centre after being made redundant from his last job. They made him feel lazy and obstructive because he struggled to keep records of when, where and what jobs he had applied for.

He had insight into his diagnosis. That in itself can cause issues - but these were outweighed by the fact that we could openly reassure him as a family that various mishaps were as a result of his condition and that he was in no way to blame . It also allowed him the chance to be involved in the practical side of things - getting Wills done, arranging PoAs, deciding who was to be told and when, arranging trips and holidays to places he wanted to go while he could still enjoy them.

We never harped on about the disease. He remained aware of his diagnosis (but not necessarily what was to come) for at least five years and we went about life as normally as we could - giving reassurance as and when necessary.

He is now in his sixth year since diagnosis. As I have never asked him outright if he remembers his exact diagnosis I do not know if he is aware of not, though I suspect not. However, I do continue to reassure him that it is not his fault when things go wrong, that he has an illness and the doctors are helping us take care of him.

He accepts that reassurance - but I certainly wouldn't take it a step further by asking him outright if he knows he has dementia. He is no longer at a level where the information would help.

It really does come down to knowing the PWD, what stage they are at and whether knowing will make things fall into place and help bring some degree of relief in knowing that there is a medical condition to blame and to plan for- or if it would be detrimental to them and their well-being to be informed.

I am assuming your dad would have been present when the diagnosis was made. If he does not remember it then he might well be beyond the stage where being reminded would help.

 

[Pinenut]

Everybody is different and you can only judge what steps to take by knowing the person affected.

In my husband's case it came as a big relief to him to know that there was a medical reason behind his struggle in day to day things - until then he had begun to feel 'stupid' and was losing his sense of self worth - particularly at the way he was treated at the job centre after being made redundant from his last job. They made him feel lazy and obstructive because he struggled to keep records of when, where and what jobs he had applied for.

He had insight into his diagnosis. That in itself can cause issues - but these were outweighed by the fact that we could openly reassure him as a family that various mishaps were as a result of his condition and that he was in no way to blame . It also allowed him the chance to be involved in the practical side of things - getting Wills done, arranging PoAs, deciding who was to be told and when, arranging trips and holidays to places he wanted to go while he could still enjoy them.

We never harped on about the disease. He remained aware of his diagnosis (but not necessarily what was to come) for at least five years and we went about life as normally as we could - giving reassurance as and when necessary.

He is now in his sixth year since diagnosis. As I have never asked him outright if he remembers his exact diagnosis I do not know if he is aware of not, though I suspect not. However, I do continue to reassure him that it is not his fault when things go wrong, that he has an illness and the doctors are helping us take care of him.

He accepts that reassurance - but I certainly wouldn't take it a step further by asking him outright if he knows he has dementia. He is no longer at a level where the information would help.

It really does come down to knowing the PWD, what stage they are at and whether knowing will make things fall into place and help bring some degree of relief in knowing that there is a medical condition to blame and to plan for- or if it would be detrimental to them and their well-being to be informed.

I am assuming your dad would have been present when the diagnosis was made. If he does not remember it then he might well be beyond the stage where being reminded would help.

Thank you lynne
Yes he was origin misdiagnosed with Parkinson’s and yes was in the room both times when consultants have explained it is in fact LBD but he still referee to it as Parkinson’s. I can understand how this could be confusing for him
I think he would benefit from being told what to expect regardless of what it’s called, just because he is asking questions
I’m considering getting him to tell me what questioned he’d like answered and then having these put to the consultant at our next visit
I really appreciate your comments above
Thank you

 

[Shedrech]

hi @Pinenut
whatever you consider doing, talk with your mum before you actually do anything - she is the one who knows her husband best and is the one with him constantly - she isn't herself ignoring the diagnosis and your dad was present when the diagnosis was given - maybe write down any questions you hear your dad asking but don't put any pressure on either of them right now - give them time to find their way of coming to terms with this news - if your dad copes with the term Parkinson's but has not taken on board LBD, that in itself may be an indication that your mum is right - this is a tough time for her; not one to be going against her wishes
as to organising LPAs - it would be wise to have these arranged for both your mum and dad and could be 'sold' to them as simply the sensible measure anyone puts in place in later life - you could refer them to Martin Lewis, who recommends this - and there's no reason why they shouldn't be an Attorney for each other with another named Attorney to act jointly and severally and even a named replacement for just in case - your mum can always change hers later if she wishes
https://www.gov.uk/government/publi...ing-power-of-attorney-a-guide-web-version#A10

 

[love.dad.but..]

From your first post you have subsequently given much more information of the circumstances and reason for your question. If he believes he has Parkinson's and you now tell us that he is asking questions I wonder whether it will be more worrying for him to become anxious about future distressing Parkinson's symptoms rather than the dementia ones so maybe that also now has to be considered depending on his level of understanding and how much your mum feels he wants to know. Either way I am not sure that he would benefit as you say from knowing what to expect in any progressive illness if he hasn't indicated that he would ask that particular question or search the info for himself. For some people they cope better on a day to day basis not looking or knowing too far ahead other than being encouraged to take practical steps ...wills power of attorney etc. However..I think it is your mum who should decide the best course of action whilst taking your thoughts into consideration but if she is adamant then I don't feel even as a concerned daughter you should intervene

 

[Canadian Joanne]

We could not tell my mother she had Alzheimer's, as she would vehemently deny having AD, even though she had never been told. Obviously, in her heart she knew. But she would accept, albeit reluctantly, that "her memory wasn't what it used to be". We used that as a reason for many things.

 

[nicoise]

Thanks for al your replies
My dad is currently in early stages of dementia so still aware and with it
He has asked recently what the outcome of his illness is
He thinks it’s parkinsons but we’ve all discussed dementia in his presence including the consultant
It’s didfi to know what the best way to deal with this but your comments are reallly helpful
Thank you

My mum had LBD after suffering from PD for a few years, and she was also very aware of her problems and had insight having worked for many years as a nurse.

When she asked me what was going to happen, my answer to her was always

“ I don’t know, Mum, but we’ll make it as good as we can...”

And that was enough for her - of course she was afraid, but she didn’t need the full facts in technicolour, she just needed reassurance that she would be cared for kindly.

I don’t think this is about lying or withholding information, it is about being kind to a person who can never recover, and needs to be lovingly looked after.