Awareness of dementia diagnosis

[LunaJ]

My Mother was diagnosed with dementia about 3 weeks ago. She can often be quite clear minded early on in the day, although this can vary, and later in the day is usually more confused.
At her diagnosis appointment, although the doctor told us both the dementia diagnosis, I don't think my Mother understood it at all. She's never mentioned it since, and she thinks she really just has some normal age related memory problems.
My quandary is whether to pick a moment when she's relatively clear minded and try to explain it to her in terms she might understand, or just to leave her as she is. I know if she does really understand it, she'll be horrendously upset, to the point where I don't know if she'd be able to carry on with any semblance of a life. I think she'll basically give up. There are already many days where she feels there's nothing to live for and I think understanding her diagnosis fully would tip her into possible depression. It feels an endless battle for me as it is trying to keep her spirits up and keep her motivated.
On the other hand it doesn't feel right for her to not grasp her own diagnosis and underhanded of me to speak to healthcare personnel about her.
Any advice please?

 

[Shamus]

I understand your issue all too well. My Mum was diagnosed 3 month ago and my Dad 2 weeks ago. Mum has an understanding of her condition in the periods that she is lucid and gets distressed as she does not want to carry on and feels she is a burden on me. If you talk to your mother about her condition you have to be prepared for her reaction and your own as I Khoi my own emotions are in turmoil frequently.

 

[karaokePete]

Hello @LunaJ and @Shamus. Welcome to the forum to you both.

This issue is one that's often raised on the forum and I know that many forum members never mention Dementia to their loved ones, often preferring to simply refer to a dodgy memory, or such. There may be two reasons for this, the first being a wish to avoid causing upset, and the second being the fact that many people with dementia won't either comprehend or remember the diagnosis.

In my wife's case the Consultant told her the diagnosis and I never shy away from the issue if she asks me about it. I can confirm that the telling can cause upset every time it's told, and that the information isn't retained. I wouldn't see any benefit, or point, in sitting down with my wife to deliver the diagnosis.

Please don't think that it's underhand to speak to the health services as that is a part of looking after, and doing our best for, our loved ones.

You may both be feeling what is known as 'anticipatory grief' at the moment as that is common after diagnosis. This type of grief is felt when the person may still be alive, but a profound change to life has occurred. If you want to do some reading on this and all other aspects of dementia the Publications List that is attached to the forum is a valuable resource which can be reached by clicking the following link

Print and online publications about dementia: Full list

Here, you will find our full list of publications that you can download or order as printed copies.

www.alzheimers.org.uk

As to how to best communicate with a person with impaired memory, a few handy tis can be read in the thread that can be reached by clicking the next link

Compassionate Communication with the Memory Impaired

The following piece was posted a while ago on DSF and made a big impression on me. It is something I have referred to time after time and tried hard to follow. We have many new members who may not have seen it before. Yesterday I posted it on another Thread but thought it might be helpful if...

forum.alzheimers.org.uk

I hope some of that helps and I wish you both strength.

 

[Duggies-girl]

My Mother was diagnosed with dementia about 3 weeks ago. She can often be quite clear minded early on in the day, although this can vary, and later in the day is usually more confused.
At her diagnosis appointment, although the doctor told us both the dementia diagnosis, I don't think my Mother understood it at all. She's never mentioned it since, and she thinks she really just has some normal age related memory problems.
My quandary is whether to pick a moment when she's relatively clear minded and try to explain it to her in terms she might understand, or just to leave her as she is. I know if she does really understand it, she'll be horrendously upset, to the point where I don't know if she'd be able to carry on with any semblance of a life. I think she'll basically give up. There are already many days where she feels there's nothing to live for and I think understanding her diagnosis fully would tip her into possible depression. It feels an endless battle for me as it is trying to keep her spirits up and keep her motivated.
On the other hand it doesn't feel right for her to not grasp her own diagnosis and underhanded of me to speak to healthcare personnel about her.
Any advice please?

Hi @LunaJ I would forget all about the diagnosis as far as your mum is concerned. There is nothing to be gained by reminding her and it is liable to cause her distress. My dad never accepted his diagnosis 'doctors don't know what they are talking about' was his response and I left it at that. He did however accept that he had a slight memory problem that should be expected at his age and he was also happy to take his memory tablets which I think was good enough. I spoke to all healthcare personnel about dad and he was quite happy about it as were they although they would usually ask dad for permission first which he always granted.

I think most people are diagnosed at a stage where they are beginning to experience confusion and in dads case I think he was quite happy to just hand things over to me because it was easier for him, he didn't have to think too much or make a difficult decision. Fish and chips or meat pudding dad, was a huge decision for him to make and in the end he would have what I had so we always had fish and chips.

Just do what makes her happiest and forget about what feels right and wrong to you because it doesn't matter in the end. This disease is hard enough to deal with on the best of days so go with the flow if possible for both of your sakes. It's hard so don't make it harder.

 

[Sarasa]

Welcome to Dementia Talking Point @LunaJ and @Shamus. My mother refused to engage at all with the memory clinic process though it was obvious that she had some sort of dementia. In the end a psychiatrist visited her at home and diagnosed vascular dementia. Mum thought he was mistaken, so there seemed little point in trying to convince her he wasn't. I just started to put things in place to support mum, which in her case meant a move to a care home as she was beginning to be a danger to herself and others.
Do you have Lasting Power of Attorney (LPA) set up. This will be invaluable later on when you will need to help with money matters and making health care decisions. The fact your mothers have a dementia diagnosis shouldn't stop them from being able to set up an LPA as long as they understand what it's for in the moment they do it. If they have lost capacity then you or another family member can apply to be your mothers' guardian. Details of both are here https://www.gov.uk/government/organisations/office-of-the-public-guardian
I know it feels awful when you have to start doing things behind a parent's back, but sometimes it is necessary. Dementia leads to a whole change in the child/parent relationship. The Compassionate Communication thread is full of excellent ideas. Don't beat yourself up if you can't always manage it. I found it very tricky with my mother sometimes, but things ran much smoother if I did use some of the techniques mentioned.
Keep posting you'll find lots of advice and support here.

 

[Countryboy]

Sorry just don’t understand that people aren’t Aware of dementia ??

its 2021 dementia has been advertised on TV in media , information pamphlets in GP surgeries , documentaries how wouldn’t any person not Know they might have a problem in this direction OK they may not want to believe or accept it but as I said its 2021 not 1901 maybe been different then of course there are exceptions if some has an head injury or stroke they may lose memory ( but there again that’s not dementia ) it's brain damage

 

[karaokePete]

The most common type of dementia usually results in the loss of the ability to make new memory as the relevant part of the brain gets damaged in the early stages. My wife falls into that category and every time she hears something it's like it's her first time of hearing it, with the emotional turmoil that may go with the news. Old memories then start to drift away as the brain damage spreads.

I know that you have dementia @Countryboy but judging by your posts your abilities are not even remotely like my wife's, or many like her. I hope you remain as good as you are for a great many years. My wife was educated to degree level and was a very intelligent individual, but now, some 5 years post diagnosis, often has to be shown the way to the rooms in her own home.

 

[Miss Elli]

I remember very clearly Mum's consultant confirming the diagnosis of part vascular dementia and Alzheimers and he said to Mum 'unfortunately the reality is you won't remember this conversation tomorrow', Mum actually didn't even remember the conversation an hour later and we have never had the dementia chat since.

Mum is living in her own little world and is oblivious to the problems and the fact that we are now running that world for her. We have chosen to never mention the D word as personally I don't see the point in upsetting her, on bad days I may say 'but you are ill Mum' but that's as far as the conversation goes.

Don't beat yourself up or feel guilty about dealing with health professionals on your Mum's behalf, don't forget you are helping her and those conversations are happening because the reality is your Mum is probably not capable of making any decisions about her own health and wellbeing. Social Care reached that decision about my Mum very quickly and with LPA's in place I now run her life including her home, finances and anything to do with health and wellbeing.

I think we all have to find our own way to deal with these things and no one knows your Mum better than you.

 

[Miss Elli]

The most common type of dementia usually results in the loss of the ability to make new memory as the relevant part of the brain gets damaged in the early stages. My wife falls into that category and every time she hears something it's like it's her first time of hearing it, with the emotional turmoil that may go with the news. Old memories then start to drift away as the brain damage spreads.

I know that you have dementia @Countryboy but judging by your posts your abilities are not even remotely like my wife's, or many like her. I hope you remain as good as you are for a great many years. My wife was educated to degree level and was a very intelligent individual, but now, some 5 years post diagnosis, often has to be shown the way to the rooms in her own home.

That is so right karaokePete on diagnosis my Mum was told outright that she no longer had the capacity to make new memories, she has atrophy of the brain so her brain is actually shrinking and now 16mths after her diagnosis she's also losing her old memories or mashing things together so they no longer make sense. It's such a cruel, nasty illness, personally I find the speed of change the most frightening.

 

[Countryboy]

The most common type of dementia usually results in the loss of the ability to make new memory as the relevant part of the brain gets damaged in the early stages. My wife falls into that category and every time she hears something it's like it's her first time of hearing it, with the emotional turmoil that may go with the news. Old memories then start to drift away as the brain damage spreads.

I know that you have dementia @Countryboy but judging by your posts your abilities are not even remotely like my wife's, or many like her. I hope you remain as good as you are for a great many years. My wife was educated to degree level and was a very intelligent individual, but now, some 5 years post diagnosis, often has to be shown the way to the rooms in her own home.

Hi KaraokePete I know because I’ve dealt well with my dementia for years I maybe a little biased at times but please believe me when I comment on dementia its mainly from my own experiences and are in No way meant to be disrespectful or degrading to any other person with dementia or play on their emotions because they are not coping as well as I have with dementia

I do understand both my parents had dementia before it’s was mainstream news Dad knew he had mental problems and would say he couldn’t remember things because he was punch drunk after so may head blows when in the ring he was a professional fighter/boxer whereas mum never admitted she had dementia and would be annoyed if it was suggested she did.

KaraokePete I note you said your wife was educated to degree level, well I started school aged 5 and I left aged 15 with no qualifications what so ever actually I only attended school for 9 of those years maybe less because of WW2 than days / weeks off school working on farm so I had virtually very little academic education but vast knowledge of farming life

I still believe even with a very basic education a person could realize they have a problem if their being forgetful or miss placing things or have memory problems
if they haven't seen or heard about the effects of dementia must be living a very sheltered life away for media news

Just got back from 3 hours coastal ride on Kawasaki 1000sx bit cold and very windy now my back is aching that’s old age or not being on bike for almost a year maybe { ps kep to speed limit }

 

[AztecCamera87]

My dad isn't aware he has dementia, despite it being mentioned in conversation many times. We don't mention it to him anymore, no point and just distresses him. He also does not seem to have any memory of his diabetes (he's been type 2 for 20 years or so), so he can get a bit confused when we need to check blood sugars and give insulin. This can be a bit of an issue from time to time.

 

[My Mum's Daughter]

The doctor told Mum that she has Alzheimer's but she'd forgotten by the time she got home. She's fully aware that she has no short term memory; over a year of taking her "memory tablets" and she's still surprised when she's given her morning pill.

 

[CardiffGirlInEssex]

When my mum was diagnosed, the memory clinic asked me if I thought she would want to know. I said yes, because she had always been one to want to know about her other medical conditions and she knew she had been to the Memory Clinic and for a brain scan, so why would we not tell her.

The memory team nurse saw her at home and explained the diagnosis and what it was based on. For some months afterwards mum was very angry with me and with the diagnosis. She didn’t challenge it but said she would rather not have known, she thought it was cruel to tell her when they couldn’t do anything to make it better. This was in summer 2017.

However, she has now forgotten all about the diagnosis as her dementia has progressed. She doesn’t seem to be aware of her problems. She will say that her memory is great because she can remember things from her childhood, but in the next breath she is no longer sure of her age or mine, and is very surprised to hear that my dad was in hospital for four months (September to December 2020) because she does not remember that at all, nor that she was mostly alone in the house during that time. She doesn’t appear to be distressed about it, just wonderfully vague.

So I guess what I’m trying to say is, don’t worry about telling your mum. It will possibly distress her in the short term and she will most likely forget anyway in the medium to long term.

 

[Eddiep]

My Mother was diagnosed with dementia about 3 weeks ago. She can often be quite clear minded early on in the day, although this can vary, and later in the day is usually more confused.
At her diagnosis appointment, although the doctor told us both the dementia diagnosis, I don't think my Mother understood it at all. She's never mentioned it since, and she thinks she really just has some normal age related memory problems.
My quandary is whether to pick a moment when she's relatively clear minded and try to explain it to her in terms she might understand, or just to leave her as she is. I know if she does really understand it, she'll be horrendously upset, to the point where I don't know if she'd be able to carry on with any semblance of a life. I think she'll basically give up. There are already many days where she feels there's nothing to live for and I think understanding her diagnosis fully would tip her into possible depression. It feels an endless battle for me as it is trying to keep her spirits up and keep her motivated.
On the other hand it doesn't feel right for her to not grasp her own diagnosis and underhanded of me to speak to healthcare personnel about her.
Any advice please?

My mum was diagnosed about 4 weeks ago with mixed dementia, she is the same as your mum says she is fine and there is nothing wrong. The consultant told me not to tell her as she would be to upset and she wouldn’t remember anyway so it wouldn’t be helpful. I know she knows deep down but she says as long as she keeps doing things she will be fine. What she doesn’t see is all the things that go on in the background that I have to deal with. I just tell her that she doing fine at the moment and not to worry. Hope this helps

 

[LunaJ]

Thank you everyone, that's been extremely helpful.
I really feel that in her lucid moments if she understood her diagnosis, and the likely path ahead, it would only destroy any quality of life she might get from those still lucid times.
I still worry though that the health professionals involved in her care will openly talk about dementia to her, and she may get a sudden shock at some time. I think I'll just have to deal with that if it happens though.
Thank you.

 

[My Mum's Daughter]

@LunaJ to avoid health professionals putting their foot in it, I speak first and say "Mum has a few problems with her memory so I'm here to help with any questions".