Anosognosia: an important insight into Mum's dementia

Wirralson

Account Closed
May 30, 2012
658
0
BigEffort,

Thanks for posting this. My mother suffers markedly from anosognosia, although one psychiatrist thought she did not, three others agreed she did. What you posted about the distinction between denial and anosognosia is also important. And it is terrible to deal with.

Wirralson
 

Forestridge

Registered User
Feb 10, 2013
114
0
I am truly sorry for what you are going through BE. I am very new to this whole Dementia thing as Mum's diagnosis was only mid march, though there have been problems for much longer. I so feel for all of you who have been living this for years and especially for you and anyone else with Anosognosia to deal with too.

There are some very wise words from others about the care situation. I just want you to know that this thread you have taken the time to research and post is very appreciated. I've noticed how often I find threads on this forum appear pretty high in Google when I'm searching for various things and I have been helped a lot by older threads that just keep on being helpful to newer members like me. I'm sure this is one that will help lots of people now and also in the future. Wishing you all the very best.
 

Big Effort

Account Closed
Jul 8, 2012
1,927
0
Dearest Jay,

Your two PMs await me.... unread because my inner sense knows I will cry. I wanted to get this Anosognosia thing written and absorb its implications first.

I am not being rude by not replying to those PMs. I have kept them as a gentle if tear-provoking reward for taking another step with Mum along the Dementia Route.

Soon our paths will come to a fork. Separated by dementia. And she'll not forgive me.

But you got to me anyway, Jay, by posting here. And you have held out the hand of understanding. And I can't cope with that just yet, because it makes me cry.

Mum is fighting me so hard right now. She needs a cushion to prop her head when watching a DVD on TV. Twice I found the cushion on the floor. Just went in now and saw her sitting, head unsupported, cushion back on the floor. "I'm not using that thing any more!" Why? Because I bought it for her, because I remind her to use it. Without it she will have days and days of neck pain..... endless complaining. Then the shouting that she is sore and I refuse to bring her to the doctor. I did suggest she use the cushion so as to avoid the neck pain. She threw me a look as if to say she dispises me.

Off to have tea and a fruit tart that I made with our good, supportive friends. She will fake it again, pull the wool over their eyes. The tart will be good. Apricots, red-currants that Mum helped de-stalk, cherries off our tree (hanging in thick clusters, sun-warmed) and a few late strawberries. All in a kind of creamy custard that my neighbour here taught me.

So, sanity beckons. Thank you for your support, Jay. I know you have walked this particular walk so you can be my guide. I 'hear' what you say. My body is warning me (amnesia and a boil), my gut/soul with being wakeful and anxious, and my business brain is warning me to get my house in order before September or I will be out of business.

Love to you. May your visit with your Best Beloved be sweet today. I think of you lots and lots. Hugs BE
 

loveahug

Registered User
Nov 28, 2012
1,071
0
Moved to Leicester
Aaaah BE, you epitomise the true nature of love, to love while being despised with no chance of reward or acknowledgement. Why do you beat yourself up so? The person to whom you made those long ago promises has been destroyed. Denial or anosognosia, it makes no difference, the personality has been shredded by this long slow drawn out death sentence. And we die with them, slowly, painfully and guilt ridden to the last that we could not bring them succour and comfort as they did to us when we were children. As human beings that is what we are condemned to do as we are able to love, so can we suffer. BUT you have insight, intelligence and a thirst for knowledge, for knowledge is our weapon against it all.

So we all thank you for using precious time to enlighten, stimulate and educate to help erase the shadows in our understanding.

Many hugs x
 

Sue J

Registered User
Dec 9, 2009
8,032
0
I will fail her by keeping her at home, as she grows to hate me.
I will fail her by putting her into care, as she will not adapt, nor will she accept it.

Dearest BE

I can read a little only, you know I'd love to read more but my brain is struggling but thank you for trying to understand and help us all to understand.

You haven't failed your Mum and you wont because you will make the right decision for her when there seems to be no decision that seems right. Your love and care has brought you to this point and it is that same love and care that will make the necessary heart rending decision that you know you must - but you will not be failing her.

Love
Sue
 

Carara

Registered User
May 19, 2013
283
0
West Mids,Uk
Oh BE

Just want to add what an interesting but lovely thread...

You`ve said what alot of us feel but can`t put into words


My mil sniggered when hubby one day told her he was ill,she snapped at him saying "Its not me who`s ill its her" meaning me

Have to add that I absolutly despise this illness with a passion

(((((Big hugs )))))
 

Fed Up

Registered User
Aug 4, 2012
464
0
Hi BE

I read your post to the end and it was a hard read. So fluent yet so jittery, you explained it well.I think you are right to at last realise that our bodies and minds have to cope as carers with huge pressures and too admit that you need help is simply only proper.
Because you have to have a life as well, your mum like mine has gone really, we care for a physical presence being but the spirit and personality has gone. Children give back smiles to reward parents who care for them. When the child returns with Dementia, their is no rewarding smile its an ever increasing uphill struggle and throw into the mix, rudeness, problems with confusion and all the rest its only normal to feel as you do.
So having done your very best over such a long time perhaps my dear its time to say 'what about me" and look for a place for mum in a care environment. Don't leave it until your broken and you become more depressed and ill. Do accept what you can't change, accept the inevitable and look after yourself for a while and most definitely not mum.
I'm sure that others may not agree but in your place, I'd have hit out or hurt myself years ago. I once thought a minor accident and a few days in the local A&E would give me a break, the pain of a broken arm was worth the peace for 6 weeks. So don't feel alone you aren't, your human and hurting. Very big hugs and best wishes.
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,167
0
71
Dundee
Strangely my husband has never gone through a 'denial' stage. I wonder why. He was unhappy when he first had the diagnosis. He was depressed for a long time after that. He did have insight into his condition then. He doesn't have any insight now. He just seems to accept what's happening is happening.

Today I noticed some major changes in his capabilities. I asked him to close a door - he had no idea what I mean. He went to the light switch. I showed him a photo I had just taken of him in the garden 10 minutes previously and he didn't know who was in the photograph.
 

Big Effort

Account Closed
Jul 8, 2012
1,927
0
Oh Izzy,

Today I noticed some major changes in his capabilities. I asked him to close a door - he had no idea what I mean. He went to the light switch. I showed him a photo I had just taken of him in the garden 10 minutes previously and he didn't know who was in the photograph.

This is heart-breaking. Nothing in our previous lives prepared us for standing tall at times like this. In one sense, it is just the illness gnawing away at brain modules, and in another sense the loss, each loss, is simply devastating. So we hurt anew each time.

How brave and uncomplaining you are. What courage it takes to be there and observe this, and then just make kind and gentle conversation so they don't pick up on their failing.

Like I just wrote to Pross, lets all drink a toast, join in a virtual aperatif, health and strength and courage to us all. Sante, Izzy. Your quiet coping makes me feel like a yelling hyena - so much noise and bluster issuing forth, while you cope in quietude.
Sending my empathy at a time like this. Cheers, now, and thinking of you and him! xx BE
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,167
0
71
Dundee
Now stop it BE - you're bringing a tear to my eye!!

Well it just so happens we are sitting in front of Raiders of the Lost Ark (Bill is engrossed) with a nice bottle of Cotes Du Rhone Village - not a supermarket bottle but from a nice local wine shop. It is so nice!! To all on TP - sante; salute, slàinte mhath or indeed - 'here's tae us, wha's like us?'! x

By the way that photo of him is on his thread (Update on Bill) in the tea room.
 
Last edited:

PeggySmith

Registered User
Apr 16, 2012
1,683
0
BANES
Hi BE,

Just to say that your research was well worth it. I wish I'd known this 18 months ago, it would have made life a lot easier for both of us (me & MIL, I mean).

Like so many other posters, the "stages" of Alzheimers made no sense at all, but I put it down to MIL having vascular dementia.

Thank you.
 

gringo

Registered User
Feb 1, 2012
1,188
0
UK.
My Dear BE.
How well your TP. name describes your post! I have read it several times, if I had come upon out it, in the dark as it were, I should have known right away that it was written by you!
But I don’t think that, apart from the lovely greek name, there is anything that you weren’t aware of before. There’s still no treatment that will help. The cold water in the left ear only has a momentary effect!
I am so glad that finding the nice old greek word to describe your Mother’s condition, has finally led you to reach a decision to look for a place, for her, in a CH.
I believe it has value if you can now come to grips with the fact that you have gone way past your tipping point. It is so obvious to me ,as a concerned bystander that you will come to grief if you do not act very soon.
To make the decision to place your Mother in a CH. is not, by any means, taking the easy option. As you rightly said on another thread, it is just one step, the first one. You will not find this easy. The pain will stay with you but it will not break you. As your current arrangement could easily do.
I feel for you and send my very best wishes.
 

CollegeGirl

Registered User
Jan 19, 2011
9,525
0
North East England
Hi BE,

Thank you for doing this research. I think my mam may have this Anosognosia, it would certainly explain why she would laugh derisively at the idea of my dad doing the shopping and cooking the tea - 'Him? Pah! He does nothing!' - even while watching him cook said tea.

I could never understand it.

Now I can, a little. I still don't know how to deal with it.

With love and hugs from one broken heart to another.

Xx
 

Pheath

Registered User
Dec 31, 2009
1,094
0
UK
Dear BE
I’m truly sorry for the pain you’re feeling at present as you come to the realisation of your only course of action, I know it’s something you’d never be contemplating if there had been any other way - we were the same. Was incredibly interested to read about Anosognosia. It makes total sense really as Denial is more a psychological mechanism requiring some degree of mental wherewithal and sophistication, something I doubt many dementia suffers have the capability of at least at advanced stage. If and when you do have to take that necessary step I just wondered if you could enlist the help of somebody else who isn’t the target for your mum’s rage, is there anybody she trusts and has positive feelings towards? Perhaps this would dilute her reaction solely towards you? Remember there is also the chance she might even eventually like a CH, I recall you saying how nice they were in France and there have certainly been instances in my dad’s CH of residents who arrived kicking and screaming and are now as happy as larry. The instruction and guidance which she takes so badly from you, might seem more palatable when coming from someone else. Even though the road ahead will be extremely bumpy and emotional I’m dearly hoping that once you’ve traversed this part of it, both you and your mum will reach a safer and more stable stretch.
Love Px
 
Last edited:

Miss Merlot

Registered User
Oct 15, 2012
3,262
0
Thank you BE for yet another informative post.

I think there are two types of people on this forum - those who put up with the reality as is, and those who feel they have to challenge it, either by challenging the sufferer to change their behaviour, or by researching it to such a point that the behaviour is "explained".

I am the former, my husband is the latter.

I have always accepted that there is no way to pierce MIL's denial (or at least not without being horrendously cruel in the process - and even then it would all be "lies" of course), but OH struggles more with this. I think he will find this explanation extremely helpful.

Thank you for your time and effort in communicating this to the rest of us!
 

Donbon79

Registered User
May 26, 2011
48
0
Blackpool, Lancashire
To start: my heart is broken. Despite years of kindness from me, Mum KNOWS all this chaos is due to me, caused by me. Here is the anatomy of Dementia with Anosognosia.

Denial
I used to marvel at her powers of denial. When she was less ill, she bristled at every criticism, or perceived criticism, and despite having very signficant difficulties expressing herself (initially finding the right word, and later having an attention span long enough to complete a thought and express it without drifting off to another topic), she always had a fluent, forceful comeback.

And she had the memory capacity to 'remember' all these bad things I have done. For the past 6 months her fallback refrain is "You are a horrible, horrible woman." "You are so cruel. You should be ashamed, so ashamed." "If Dad could see this he would be horrified, horrified at what you do to me, say to me." These phrases are written intelligibly because when in defense mode she can speak as fluently as I can. It is extraordinary, a trick of mind, something any psychiatrist would be fascinated to see.

So for four years she has maintained a total wall of denial around dementia. She is well, healthy and so on. Right now she can't dress herself, she can't express herself, she doesn't garden (a life-long passion), and she gets the wrong end of the stick about everything, so I think word comprehension is a major issue too. My mind has always boggled at how someone incapable of showering (what do to with shampoo, conditioner, what's that? now rinse your hair. How do I do that? Wash between your legs with this gentle soap? Do you mean here?) can actually believe they are fully mentally competent. Isn't there some inkling that something is amiss? Apparently not, not with Mum. Her denial is total. Complete. An effective shield against dementia.

Mum's world view: There is nothing wrong. She is totally mentally fit. She works hard all day, gardening, writing letters, helping me, cleaning and so on. Invariably she claims she is tired because she has had a very busy day.

BE's view: I do every single task. She has the IQ now of perhaps a 6 month old baby. She does nothing at all, no interest in her garden whatsoever. Our lovely nieghbour does all the weeding out of kindness to Mum, Mum watches, and STILL KNOWS she keeps her own garden immaculate. At best Mum's day consists of eating (with little pleasure as food is complicated), watching Jane Austen DVDs (which she invariably calls "interesting"), a little reading of Mills and Boon books.

Critical here is the error in thinking of both my husband and I. We were certain that as her skills and capacity dropped, that at some point this protective veil of denial would be pierced. That she would have insight and no longer deny the obvious.

I now know this will never happen. Why?
Anosognosia - a particular form of brain damage. Very different from denial.


* * * * * * * * * *

ANOSOGNOSIA



As I read this different reactions well up. Damn those incompetent Alz specialists with their politically correct, watered-down data and factsheets, i.e. stages of Dementia stuff. Who needs to know about stages. For a carer or sufferer, has a stage ever come into the frame. My god, even the specialists can't pinpoint the stage of the disease.

How is it possible that a Wikipaedia article is more content-rich than that produced by experts? More honest? More useful?

Also a sense of relief. Things fall into place. This is why Mum has always insisted she is right. Her conviction that I tell lies, that I have memory problems has never wavered. It is consistent. She doesn't have ANY AWARENESS OF HER DISABILITY. Not one iota. Not one wrinkle of concern that something is going on. A skill lost is a skill that never existed for her: there is no mourning her losses.



Now this visio-spatial thing I can relate to. Dad had a stroke. He neglected one side of his visual sphere. He ate off one side of his plate, not seeing the left side. To get him to finish his meal, we had to turn his plate and the remaining food came into view.

Mum has a similar disorder. She can see my deficiencies. She can criticise others to beat the band. But she cannot perceive her own limitations. She cannot. Of this I am absolutely certain. This is what keeps me worrying at night. I know that she is unable to perceive her mental demise. She insisted on writing for newspapers until 2 years ago, and I edited, and she fought every correction tooth and nail. Fought is the operative word. She knew she was right and I was lying. When things are missing, I threw them away. How does she know? Because she saw me. Total conviction. Any protest on my part is deemed a lie. She hasn't been able to use the phone for 18 months. Why? Because I have given her a phone that doesn't work. Every time she dials a number "that stupid woman starts talking in French". The stupid woman is a recording to say the number she is dialling is either incorrect or incomplete and to try again. My explanations fall on deaf ears. The stupid woman is evidence the phone doesn't work. I should replace the phone. On and on this type of self-serving justification goes.

Signature example.
She couldn't sign her name, wrote it with a spelling mistake. An immediate and fluent justification: "How can anybody be expected to write their name correctly if they don't get practice, and I don't get practice because you won't let me." On the surface it sounds plausible, it sounds reasonable, BUT it isn't. It is brain damage. Reasoning through an Ansosgnosia lens. It seems real to her (as not seeing one side of the plate was real to Dad), but it isn't real. It is a trick of perception. A form of delusion. Key being it seems real to her, thus she genuinely does believe it is others who lie, who give her faulty phones, who give her trousers with zips that don't work.

Garden example.
"Look at my garden. Look at how beautiful it is. I did that. I did all of that." (How does she manage to edit our kind neighbour out of this frame, when Mum sits watching her in her chair, sipping tea and biscuits together during breaks, and being grateful to the neighbour for her help at the time???????)



How is it that Wikipaedia can have all this data, and yet it is not in the commonly available literature to carers? Mum's denial has been the biggest issue. It has led to so many arguments. It has caused endless hurt for me as I was accused of lying, hiding things, and her accusations are so damn plausible. 100% credible to an outsider. Reasoned thought.

She is exactly like the patient with hemiplegia, using their right hand to do the task of the left hand and swearing that they have used their left hand to complete the task. It may seem real to them, but it isn't real.

Conclusion:
The saddest thing is that Anosognosia continues to insulate Mum from reality. She is impossible right now. I go back to work in September and I know, I know, I know with an inner certainty that the only option for her is a home. Her Anosognosia is convincing her that I am wicked, a liar, stealing her money, creating endless problems, I have provided her with a phone that doesn't work (isolating her from friends and family), a toilet that flushes before she sits on it.......

Anosognosia is the cause of a break down in trust. Mum isn't heavy care, she is compliant and very loving unless she feels provoked. However as she can't do anything for herself, she feels provoked all the time. Zips that don't work, getting up at 5 in the morning (I called her, she'll say), putting pate in her fruit salad (it tastes better that way, she says with conviction), she is sweet tempered and mild (any upsets are caused by me). I showed her the bruise on my arm last night, as she so often claims I hit her. She remembered pinching me - "You deserved that, you are a horrible horrible person. Yes, I remember doing that, and you deserved it." Justification complete, and I genuinely believe an outsider would probably believe her.



Now that is a load off my chest.
If you managed to read this to the end, and found it helpful, please say so. Posts like this take a lot of time and effort. I wanted to help others. And I greatly value your feedback.

End Note:
This diagnosis is why I have decided not to keep Mum at home. The insight battle will never be won. Keeping her here while her competencies fail is adding fuel (evidence) to her fire: in her view I am a "horrible, horrible woman". I now know why. Unfortunately from her persective, she is 100% in the right. That effectively makes me the cruel monster she knows me to be.

Thank you so much BE for writing all this down. Sadly the things that you have described about how your mum views you is almost a carbon copy of my mum and me especially with the denial and delusion about you. Even after over 2 years and EVERYTHING else from her life being forgotten, she still hasn't forgotten that she hates me. I hoped that this may change with time but maybe it won't. I haven't had any direct contact with my mum because of it for over 2 years but as you can see from my other post you commented on, I'm still the one and only person dealing with everything for her albeit from afar.
 

Delphie

Registered User
Dec 14, 2011
1,269
0
Hi BE. :)

Some of your recent posts have definitely resonated with me. I too found/find my mum's lack of insight (and the attendant accusations, false memories and confabulations etc) very difficult to deal with, and I'm certain that it was one of the main factors in her being unable to carry on living 'independently'. Her refusal to engage with any support and her increasing risky behaviours all stemmed from her sincerely believing herself to be entirely well while the rest of the world was at fault for any (many!) problems she was having. Months, years actually, of this took their toll on both of us, and while residential care hasn't made her happy 100% of the time she is definitely 'better', as in clean, well fed, safe and actually much calmer than she was when battling the world without that safety net of full time company of people who know how to handle her illness.

One thing about this thread really surprised me, though. You write:

As I read this different reactions well up. Damn those incompetent Alz specialists with their politically correct, watered-down data and factsheets, i.e. stages of Dementia stuff. Who needs to know about stages. For a carer or sufferer, has a stage ever come into the frame. My god, even the specialists can't pinpoint the stage of the disease.

How is it possible that a Wikipaedia article is more content-rich than that produced by experts? More honest? More useful?

Also a sense of relief. Things fall into place. This is why Mum has always insisted she is right. Her conviction that I tell lies, that I have memory problems has never wavered. It is consistent. She doesn't have ANY AWARENESS OF HER DISABILITY. Not one iota. Not one wrinkle of concern that something is going on. A skill lost is a skill that never existed for her: there is no mourning her losses.

Lack of insight (the everyday phrase for anosognosia) is very well documented in dementia related literature, so I don't really understand your reasons for the bit I quoted, especially the bolded bit. Alzheimer's specialists know and talk about it freely. This is not news. Many people have posted about it on this very forum. The stages information is not an instead, it's an as well, and many do find it useful. They need to know about stages, just as you need to know about anosognosia right now.

Sorry if I sound critical, especially as I know you're having a hard time. I just felt you were being unfair. Educate yourself, even educate others if it helps, but please don't direct your anger at targets that don't deserve it.
 

Salli

Registered User
May 15, 2012
119
0
If you managed to read this to the end, and found it helpful, please say so. Posts like this take a lot of time and effort. I wanted to help others. And I greatly value your feedback.

Hope I don't come over as unsupportive, but all this analysis of what is basically just a word? It doesn't matter what you call it, how it manifests, it's just part and parcel of dementia, par for the course.... Yes, it's an insight into insight but there is no solution, no understanding - just acceptance. My mother was never wrong, never doubting of anything. Adamant and convinced. Hurtful and spiteful. My mother blamed me for everything, hated me, ridiculed me, accused me, belittled me. I was the enemy, yet I did everything for her. Absent son? Perfect. It hurt, but now mum has died (10th) I can reflect on it as it was. An illness without a cure with the capacity to break down the will and fortitude of those providing the care.

Please take care of yourself, your health, your immediate family, because in reality your mum is some place else, and reality does not feature in her life. and there is b------ all you can do about it however much you delve into the disease.

Sorry if I've said the wrong thing, but I honestly believe in hindsight (not such a wonderful thing) that my walking away and preserving sanity would not have affected end outcome - mum's cognition, her perception of me, her daily life, whatever. So - please put yourself first. It is out of our control, whether the person is 'aware' or not.
 
Last edited:

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
17,546
0
68
Toronto, Canada
I've got something here which may be helpful and/or enlightening for some.
http://www.alzheimer.ca/en/About-dementia/Dementias/What-is-dementia/Seven-A-s-of-dementia

I did find the stages useful in giving a general idea of what was going on with my mother. But dementia is so very individual (as my signature says) that I think it's more about guidelines rather than an exact prognosis. The very nature of dementia is the erratic and unpredictableness of it.
 

garnuft

Registered User
Sep 7, 2012
6,586
0
I think a mistake is made if anyone imagines the person suffering the disease has power over behaviour, makes choices, can learn from mistakes or exhibit deliberate uncharacteristic unkindness.

It is a fundamental misunderstanding of what dementia is, how wide, deep and progressive it's effects.

I know my Mam loved and adored me and all her family.... never, never would she be the person she sometimes is.
This is because her brain is losing it's ability to function.
She has Alzheimer's Disease and Vascular Dementia.
She is the victim.
I wonder who is in denial?