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Help needed with talking to friends and relatives

WJG

Registered User
Sep 13, 2020
105
0
I wonder if anyone can help?

I have Mild Cognitive Impairment with clear signs of atrophy in frontal and parietal lobes. This affects my motivation, and memory. Tests show my verbal memory is suffering but visual memory remains intact. And MCI (I hate this term) means I have problems greater than are normal for someone comparable of my age.

But I struggle to communicate this to close friends and relatives who deny that my memory has any particular problems, seem to think my lack of motivation can be overcome by 'just doing' and who keep pointing out that at 67 I must expect not to be as sharp as I once was - as memory problems are just what happens when you get old.

They pay little credence to what imaging and neuropsychological tests say about me - despite some of them having backgrounds in psychology and mental health themselves.

I don't really know what to say or how to respond. Any ideas?
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,374
0
High Peak
I think whatever your tests say, your friends are trying to be positive and reassuring. And they don't know what else to say because they don't understand anything about dementia, nor do they have your considerable insight.

I wonder what response you are looking for? What would you say to a friend who told you the same? Do you want some feedback on your behaviour, e.g. 'I noticed you struggle to find the right word sometimes' or, 'You told me the same thing twice last week,' or, 'You seem a bit moody sometimes.'

I think they are basically saying, 'Don't worry - you seem fine to us!' But it also reflects the fact that most of us start to struggle with/worry about certain things as we get older. e.g. women going through the menopause often have memory problems, mood swings and a lack of motivation. Perhaps some of your friends have their own concerns and to them you seem no worse!
 

Bunpoots

Volunteer Host
Apr 1, 2016
5,379
0
Nottinghamshire
I was going to say what @Jaded'n'faded has said but got beaten to it!

Eventually the people that are willing to step up when you need them will be there for you whether they are willing to talk about it or not. Try not to worry about making them understand now, although I can imagine how frustrating this is for you.
 

Weasell

Registered User
Oct 21, 2019
1,282
0
I just think your friends are trying to be kind ! I think they are worried about saying the wrong thing so lapse into this kind of ‘ denial speak’ !

If well educated in this subject they will have read about concerns of depression raising the odds of dementia later on, so will be very cautious about saying anything to add to your worries.

It must be frustrating for you when you want a genuine discussion, but I really feel you just need to value their kindness and forgive them. As time goes on they may well relax and become more open to real discussions.

Wishing you well, it must be difficult to navigate this one.
 

karaokePete

Registered User
Jul 23, 2017
6,026
0
N Ireland
I agree with what has been said already.

The comments that are being made to you are the same as those made to my wife when she was diagnosed with MCI some 5 years ago. At that time I knew people were trying to be positive in a situation where they didn't have any insight into the bigger picture.

I wish you all the best.
 

WJG

Registered User
Sep 13, 2020
105
0
Thank you all for your thoughts.

I guess that what I hoped they would say is 'tell us what your tests have found out, and we will try and help accordingly'

But instead they are, in effect, denying my reality. I have told them all the results of my scans and tests - and my current diagnosis. But none of these seem to make any difference.

I guess part of the problem is that I don't come across as having particular memory issues. I have a wide vocabulary so even though I can't remember new words and sometimes forget where things go in the kitchen this doesn't present as if there are major difficulties.
What does puzzle me is that with this particular couple she has a degree in psychology and he is a mental health social worker. But neither seem to lend credence to what neurologists and psychologists know about me.

For instance I keep being told that I should return to my hobby of drawing, despite having lost skill and enthusiasm for this. Now I know that there's a Big Black Hole in my right parietal, love that is responsible for my loss of interest. But when I have tried to explain this, I'm told I should persevere as 'new neural pathways will develop, the brain is plastic'. Well, in my plastic Airfix kit of a brain bits have started to fall off , and they're not going to magically regenerate.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,374
0
High Peak
People just want to be positive and helpful. Often the suggestions made are not helpful at all but the person meant well! And maybe they don't want to discuss it in the way you want because it scares them silly.

For what it's worth, my boyfriend is a doctor of psychology but I had a hell of a time convincing him my mum had dementia. I had to endure his ridiculous comments about 'she's just getting a bit old. We all forget things at times or repeat stuff - you do it! Does that mean you have dementia?' for years and it drove me bonkers. It was as if he didn't even believe in dementia. Even now he has a very skewed idea about it, firmly believing that only 'closed-minded' people get it. I don't think I will ever convince him otherwise. I can name lots of erudite scholars/philosophers/inventors/philanthropists and generally good eggs who have all succumbed to dementia but he ignores this together with any medical evidence about possible/probable causes. All of which is an excellent example of cognitive dissonance which he also harps on about ad infinitum. Go figure... I really hope he doesn't get dementia because he would be impossible to deal with!
 

WJG

Registered User
Sep 13, 2020
105
0
People just want to be positive and helpful. Often the suggestions made are not helpful at all but the person meant well! And maybe they don't want to discuss it in the way you want because it scares them silly.

For what it's worth, my boyfriend is a doctor of psychology but I had a hell of a time convincing him my mum had dementia. I had to endure his ridiculous comments about 'she's just getting a bit old. We all forget things at times or repeat stuff - you do it! Does that mean you have dementia?' for years and it drove me bonkers. It was as if he didn't even believe in dementia. Even now he has a very skewed idea about it, firmly believing that only 'closed-minded' people get it. I don't think I will ever convince him otherwise. I can name lots of erudite scholars/philosophers/inventors/philanthropists and generally good eggs who have all succumbed to dementia but he ignores this together with any medical evidence about possible/probable causes. All of which is an excellent example of cognitive dissonance which he also harps on about ad infinitum. Go figure... I really hope he doesn't get dementia because he would be impossible to deal with!
That's really interesting: good luck with working on his dissonance!

I guess most psychologists study normal human behaviour, and some of its aberrations - so may well never consider neuro-degeneration. And they won't need to consider the behavioural and cognitive effects of physical brain damage. So will tend to look for explanations of behaviour that fit with the neuro-normal.

I guess that's what my friends are doing. They work on the idea that I'm conventionally motivated by pain or reward, but those circuits have been disrupted. And each person with neuro degeneration is disrupted in a different way.

I'm starting to realise that there's a lot of segmentation - the psychologists I've seen apparently know little about which areas of the brain control which behaviours, and the medics know little about psychology. I found myself the other day saying 'but surely the reason for my disinterest in drawing is due to my right parietal lobe damage' to a psychologist - only to be met with a completely blank stare. Only the neurologist I've seen seems to have a total sense of things.
 

Jaded'n'faded

Registered User
Jan 23, 2019
1,374
0
High Peak
That's really interesting: good luck with working on his dissonance!

I guess most psychologists study normal human behaviour, and some of its aberrations - so may well never consider neuro-degeneration. And they won't need to consider the behavioural and cognitive effects of physical brain damage. So will tend to look for explanations of behaviour that fit with the neuro-normal.

I guess that's what my friends are doing. They work on the idea that I'm conventionally motivated by pain or reward, but those circuits have been disrupted. And each person with neuro degeneration is disrupted in a different way.

I'm starting to realise that there's a lot of segmentation - the psychologists I've seen apparently know little about which areas of the brain control which behaviours, and the medics know little about psychology. I found myself the other day saying 'but surely the reason for my disinterest in drawing is due to my right parietal lobe damage' to a psychologist - only to be met with a completely blank stare. Only the neurologist I've seen seems to have a total sense of things.
Well, you are right - you should talk to my psycho-boyfriend! He'd be the first to tell you that medics know nothing about psychology. He'd also say that you can't 'diagnose' what is not normal unless you understand basic psychological principles and know that the range of 'normal' is far, far greater than people think. That's why he thought mum's behaviour in the early stages was completely 'normal'.

Well, yes, it was, but... I knew a lot about dementia because I'd researched it in depth years before when I thought I had it. I'd lost all motivation, couldn't find words, started making spelling mistakes, had an appalling memory, etc. Long story short, but it turned out (thanks to my further research!) that I was actually going into early menopause. Fortunately HRT has sorted me out. But it meant that when mum started with dementia, I immediately recognised the signs.

Psycho-boyfriend would also advise you to take anything 'neuro' with a pinch of salt. Neuroscience is really in its infancy, despite what they'd have you believe. Yes, brain imaging is much better than it was but they still can't point to a bit of brain and say, 'he's thinking about the thermostat on his fishtank' or ''he's about to get up and leave the room.' And what's more, they never will be able to. They can see what they perceive as damage to the right parietal lobe but they can never say exactly what that will mean for you - you are unique and the way we react and behave is down to our personal make up which comes from our upbringing and individual life experiences.

Enough waffle - I'm starting to sound like him!

I have a question for you: would you like your friends here on TP to feedback on your posts and point out... anything we see (or think we see)? Can we help you in any other ways? I'd like to add that you seem a very likeable, engaging and interesting person and I am really enjoying our discussions - it's also very enlightening to hear what it's like from 'the other side'... I hope you will continue to post and update us.
 

jennifer1967

Registered User
Mar 15, 2020
3,566
0
Southampton
i did a course once on the history of dementia and its beginnings in 1906 by alois alzheimer who did a post mortem on a 50 yr old womans brain and found signs of it.
 

DreamsAreReal

Registered User
Oct 17, 2015
79
0
I guess part of the problem is that I don't come across as having particular memory issues. I have a wide vocabulary so even though I can't remember new words and sometimes forget where things go in the kitchen this doesn't present as if there are major difficulties.
What does puzzle me is that with this particular couple she has a degree in psychology and he is a mental health social worker. But neither seem to lend credence to what neurologists and psychologists know about me.
I think you’ve hit the nail on the head there. They can only see their very smart friend - they can’t see what you’re feeling. Perhaps they’re in denial or just trying to sound positive - but either way they’re ignoring your reality. Very frustrating for you. I wonder if they think you’re a bit depressed? Telling you to draw and the comment about new neural pathways - reminds me of when I had depression & anxiety and got CBT.

@WJG Just out of interest, is it a fact that a person with dementia’s brain can’t form new neural pathways? Or can’t form them in the areas that are damaged by dementia? Or just a belief? I have no idea. Something I’ve never even thought about before, but very interesting.

My very best wishes to you, WJG. Do keep posting.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,877
0
Hi @WJG I wonder if you and your friends might find these courses from the Wicking Dementia Centre interesting. There is one on Understanding Dementia and another on Preventing Dementia. I've done both and they are excellent. They run the courses a couple of times a year and the latest presentation of Understanding Dementia started last month, but you can still join. The next Preventing Dementia is in May,
Both courses might help provide some insight as to what dementia is and how it affects people.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,377
0
69
Dundee
I agree with @Sarasa that these courses are excellent. I did them both whilst caring for my husband and found them really good. They would certainly provide a really good insight into dementia.

This is the link for the Preventing Dementia one.

 

Bantam

New member
Oct 22, 2020
1
0
I wonder if anyone can help?

I have Mild Cognitive Impairment with clear signs of atrophy in frontal and parietal lobes. This affects my motivation, and memory. Tests show my verbal memory is suffering but visual memory remains intact. And MCI (I hate this term) means I have problems greater than are normal for someone comparable of my age.

But I struggle to communicate this to close friends and relatives who deny that my memory has any particular problems, seem to think my lack of motivation can be overcome by 'just doing' and who keep pointing out that at 67 I must expect not to be as sharp as I once was - as memory problems are just what happens when you get old.

They pay little credence to what imaging and neuropsychological tests say about me - despite some of them having backgrounds in psychology and mental health themselves.

I don't really know what to say or how to respond. Any ideas?
Hello I’m sorry to hear of your feelings of frustration towards family and friends who you feel do not respond as you wish they would to your memory problems. I wonder if perhaps you have unrealistic expectations? Please consider that we all have limitations none of us is perfect and even the professionals can come across as insensitive or naive simply because they don’t use the appropriate words. In addition please also keep in mind it’s a sensitive subject to discuss for some people and having to ‘think on the spot’ or under pressure to say the right thing may cause a person to say something ‘safe’ or instinctively reach out to reassure you rather that answer using medical terms or seek to impressive you with how knowledgeable they are on the subject. Your family and friends come across as loving, caring and supportive which will always be a comfort to you whenever you might need them, perhaps they may sometimes wish for you to show warmth and acceptance for what they are dealing with too. One other suggestion comes to mind which is to start a sentence with, ‘I feel.......’. Good luck and I hope you find peace of mind. Just my own thoughts.
 

Pots and Pans

Registered User
Jan 13, 2020
52
0
I think you’ve hit the nail on the head there. They can only see their very smart friend - they can’t see what you’re feeling. Perhaps they’re in denial or just trying to sound positive - but either way they’re ignoring your reality. Very frustrating for you. I wonder if they think you’re a bit depressed? Telling you to draw and the comment about new neural pathways - reminds me of when I had depression & anxiety and got CBT.

@WJG Just out of interest, is it a fact that a person with dementia’s brain can’t form new neural pathways? Or can’t form them in the areas that are damaged by dementia? Or just a belief? I have no idea. Something I’ve never even thought about before, but very interesting.

My very best wishes to you, WJG. Do keep posting.
@DreamsAreReal Am interested too in whether new pathways can form. With arterial blocks in legs, blood can avoid blocked area and the littler arteries can gradually strengthen and take more flow, hence resolving problems of not enough oxygenated blood reaching lower limbs.. I have wondered if something similar could happen in the brain eg: plaque or vascular blockage cuts off an area of functioning but if that function still performed, at a lesser level, then perhaps new pathways can form and help that function still be available to some degree? Have tried to get OH with AD to try and write something most days as the ability to write has deteriorated. But might be wasting our time! Interested if you know of any research into this sort of thing @WJG
 

Alder

New member
Mar 27, 2021
2
0
@Bantam
Hello there. I have brain atrophy greater than expected for age. Also mild small vessel and have been diagnosed with MCI after small strokes.
I can understand your frustration and difficulties. I feel very much affected by it, slow, confused, loss of memory mid sentence( a total blank like space with nothing to grab on to)
I feel embarrassment because I can not remember what people have told me or what I have told them!
I think friends and family want me to feel upbeat and mean to be supportive, but the reality is I am aware of great changes in myself.
In order to help myself now I will say, ‘I cannot follow what you say, please speak slower and say less!’ I say sorry I cannot interact at the moment because I feel so tired.
I also say ‘I’m sorry I have forgotten what you just said’
The thing is I am trying but unless you walk in anyone else’s shoes you just don’t know how their experience is.
I have worked on different things though. For example I have re learnt how to make a sponge cake by breaking the task down.
I have put my tooth paste and brush into a box so I know when I have actually brushed my teeth.
I rely on a dementia click and Alexa and try and get some routine.
Funny enough I’m better at writing than talking.
Some days I can’t read well if there is too much print to deal with.
Sometimes I can not bear noise or being moved around for example on a bus.
I’m slowly getting used to things and trying to adapt.
My advice to you would be to tell your friends and realatives how some things affect you now and ask them to be patient because these are new limitations.
We are working on things the best we can.
With very best wishes to you and I hope you find something of use in my reply.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,377
0
69
Dundee
Welcome to the forum @Alder.

Thank you so much for sharing your experience with us. I’m sure it will be really helpful for others to read that.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,877
0
Hi @Alder, thank you so much for that post. I found it very enlightening.
@Pots and Pans you may be interested in this course Preventing Dementia run by the Wicking Dementia Research and Education Centre at the University of Tasmania. There is a section likening blocked pathways in the brain to a road network. A lorry is going to have more difficulty getting through if there are only a few roads to its destination and one of them is blocked. If they all become blocked the lorry won't be able to get there at all. The same is true with the brain and vascular dementia. Someone with a lot of neural pathways due to education and keeping learning new things may be more easily able to find a way round blockages even if the damage to their brain is quite severe. That is very simplistic of course, but I thought it was an interesting analogy.
 

WJG

Registered User
Sep 13, 2020
105
0
I think neuro plasticity is interesting. I had completely lost interest in painting until I put some music on....now the interest has returned, but only while I'm listening to music!
 

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Lawson58

Registered User
Aug 1, 2014
2,331
0
Victoria, Australia
Thank you all for your thoughts.

I guess that what I hoped they would say is 'tell us what your tests have found out, and we will try and help accordingly'

But instead they are, in effect, denying my reality. I have told them all the results of my scans and tests - and my current diagnosis. But none of these seem to make any difference.

I guess part of the problem is that I don't come across as having particular memory issues. I have a wide vocabulary so even though I can't remember new words and sometimes forget where things go in the kitchen this doesn't present as if there are major difficulties.
What does puzzle me is that with this particular couple she has a degree in psychology and he is a mental health social worker. But neither seem to lend credence to what neurologists and psychologists know about me.

For instance I keep being told that I should return to my hobby of drawing, despite having lost skill and enthusiasm for this. Now I know that there's a Big Black Hole in my right parietal, love that is responsible for my loss of interest. But when I have tried to explain this, I'm told I should persevere as 'new neural pathways will develop, the brain is plastic'. Well, in my plastic Airfix kit of a brain bits have started to fall off , and they're not going to magically regenerate.
From what you write, you are obviously a high functioning individual and you are devising strategies to cope with the gaps you are experiencing.

You also say that your diagnosis is of MCI and though there is an increased risk of dementia, you are not there yet. My guess is that your friends are responding to both your current diagnosis and to your success at coping with your present situation.

My own personal experiences of psychologists is that some of them get it and others don't, depending on their field of expertise, and I suppose the same could be said of mental health workers.

I think your friends are not seeing the expected signs of dementia in you but are trying to reassure you so don't get too anxious as that stres will have an effect on your general well being. You are lucky to have such supportive friends.