Anosognosia: an important insight into Mum's dementia

Big Effort

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Jul 8, 2012
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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

Anosognosia (/æˌnɒsɒɡˈnoʊziə/, /æˌnɒsɒɡˈnoʊʒə/) is viewed as a deficit of self-awareness, a condition in which a person who suffers certain disability seems unaware of the existence of his or her disability. The word comes from the Greek words nosos, "disease", and gnosis, "knowledge", with an- or a- as a negative prefix. It was first named by the neurologist, Joseph Babinski, in 1914.[1] Anosognosia results from physiological damage on brain structures, typically to the parietal lobe or a diffuse lesion on the fronto-temporal-parietal area in the right hemisphere.[2][3][4] Whilst this distinguishes the condition from denial, which is a psychological defense mechanism, attempts have been made at a unified explanation.[5]

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.

Anosognosia is relatively common following different etiologies of brain injury, such as stroke and traumatic brain injury (e.g. 10%–18% in the case of anosognosia for hemiparesis with onset of acute stroke[6]), but can appear to occur in conjunction with virtually any neurological impairment.

Anosognosia can be selective in that an affected person with multiple impairments may seem unaware of only one handicap, while appearing to be fully aware of any others.[8] For example, anosognosia for hemiplegia may occur with intact awareness of visuo-spatial unilateral neglect, or vice versa. This phenomenon of double dissociation can be an indicator of domain-specific disorders of awareness modules, meaning that brain damage can selectively impact the self-monitoring process of one specific physical or cognitive function.[

Those diagnosed with dementia of the Alzheimer's type often display this lack of awareness and insist that nothing is wrong with them.
Anosognosia may occur as part of receptive aphasia, a language disorder that causes poor comprehension of speech and the production of fluent but incomprehensible sentences. A patient with receptive aphasia cannot correct his own phonetic errors and shows "anger and disappointment with the person with whom s/he is speaking because that person fails to understand her/him." This may be a result of brain damage to the posterior portion of the superior temporal gyrus, believed to contain representations of word sounds. With those representations significantly distorted, patients with receptive aphasia are unable to monitor their mistakes.

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???????)

Clinically, anosognosia is often assessed by giving patients an anosognosia questionnaire in order to assess their metacognitive knowledge of deficits. However, neither the existing questionnaires applied in the clinics are designed thoroughly for evaluating the multidimensional nature of this clinical phenomenon nor the responses obtained via offline questionnaire are capable of revealing the discrepancy of awareness observed from their online task performance.[7][13] The discrepancy is noticed when patients showed no awareness of their deficits from the offline responses to the questionnaire but demonstrated reluctance or verbal circumlocution when asked to perform an online task. For example, patients with anosognosia for hemiplegia may find excuses not to perform a bimanual task even though they do not admit it is because of their paralyzed arms.[13] Similar situation can happen on patients with anosognosia for cognitive deficits after traumatic brain injury when monitoring their errors during the tasks regarding their memory and attention (online emergent awareness) and when predicting their performance right before the same tasks (online anticipatory awareness.[14] It can also occur among patients with dementia and anosognosia for memory deficit when prompted with dementia-related words, showing possible pre-attentive processing and implicit knowledge of their memory problems.[15] More interestingly, patients with anosognosia may overestimate their performance when asked in first-person formed questions but not from a third-person perspective when the questions referring to others.[2][4][13]

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.

Treatment.
In regard to anosognosia for neurological patients, no long-term treatments exist. As with unilateral neglect, caloric reflex testing (squirting ice cold water into the left ear) is known to temporarily ameliorate unawareness of impairment. It is not entirely clear how this works, although it is thought that the unconscious shift of attention or focus caused by the intense stimulation of the vestibular system temporarily influences awareness. Most cases of anosognosia appear to simply disappear over time, while other cases can last indefinitely. .......
Another commonly used method is the use of feedback – comparing clients' self-predicted performance with their actual performance on a task in an attempt to improve insight. [This has never once worked with Mum. Confronting her with facts invariabley produces rage and tantrums.]
Neurorehabilitation is difficult because, as anosognosia impairs the patient's desire to seek medical aid, it may also impair their ability to seek rehabilitation. A lack of awareness of the deficit makes cooperative, mindful work with a therapist difficult. In the acute phase, very little can be done to improve their awareness.....
[Is this more common than we think? Why do so many people with dementia deny their condition, refuse medication, refuse household help and carers?]
Since severity changes over time, no single method of treatment or rehabilitation has emerged or will likely emerge.[19]
In regard to psychiatric patients, empirical studies verify that, for individuals with severe mental illnesses, lack of awareness of illness is significantly associated with both medication non-compliance and re-hospitalization.[20] Fifteen percent of individuals with severe mental illnesses who refuse to take medication voluntarily under any circumstances may require some form of coercion to remain compliant because of anosognosia.[21]
One study of voluntary and involuntary inpatients confirmed that committed patients require coercive treatment because they fail to recognize their need for care.[22] The patients committed to the hospital had significantly lower measures of insight than the voluntary patients.
Anosognosia is also closely related to other cognitive dysfunctions that may impair the capacity of an individual to continuously participate in treatment.[22] Other research has suggested that attitudes toward treatment can improve after involuntary treatment and that previously committed patients tend later to seek voluntary treatment.[23]

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.
 

Noorza

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Of course it helps, I don't want anyone going through the same thing but it does help knowing i am not alone.
 

Pennie

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Jun 16, 2013
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OMG BE, that is striking such a cord with me - thank you, thank you so much xx

My mother is also in complete denial, gets furious when the doctor visits "there's absolutely nothing wrong with me" (more coherant when angered).

She also can do nothing for herself, loo, feeding, dressing, washing - nothing!

I am also that "stupid, stupid woman" who is out to make trouble, make things difficult etc. etc. Muttering under her breath loud enough to be heard. The other day I had a complete teary melt down and she still didn't get it, that I was doing everything to help her and I just abuse and rejection.

I wish I had time for more but need to go just now - will re-read yours again when I can, but thank you so much for another angle of thought.

All the very best to you in your struggle and hope that you have a good day today.
 

bemused1

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Mar 4, 2012
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It makes hard reading BE but a very valuable insight. For everyone of us who start to wonder if perhaps they are the monster they are deemed to be, it puts things in a different perspective.

You know you have gone as far as you can and have to take control of your own life. Maybe things will improve who knows.
 

LYN T

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Aug 30, 2012
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Brixham Devon
Hi BE

Thanks for this. This could have applied to my Husband 2 years ago-which was a year before he was officially diagnosed.(mis diagnosis 4 years ago). Everything was my fault because I was 'stupid'. Denial of symptoms etc. Now he has progressed he doesn't realise that he has ANY symptoms of AD let alone saying it's someone else's fault.

Interesting about the food on the plate; my husband has to have his plate turned or he thinks he's finished his meal. My Pete hasn't been able to sign his name for 4 years (well not as he should do) now he doesn't know what a pen does. At around the same time he used to tell me he didn't have time to follow lots of his hobbies as he was 'so busy'! Doing nothing I'm afraid.He has also been diagnosed with expressive and receptive asphasia

I agree the stages on the internet are at times no where near reality. It took a social worker friend of mine to email me the future that Pete would face-after I had asked him what to expect. I can face reality-I find it difficult to face a watered down scenario.

Your decision to face the CH route must have been hard for you (take it from someone who knows) but in a strange way you may be able to get some kind of relationship with your Mum. Now I'm removed from the violence/agitation and all the other behavior/understanding problems that I faced with Pete I am able to be 'the nice person who visits'.Little walks and listening to music is the sum total of our life-but at least it is a life of sorts.

The carers generally see a much better behaved Pete than what he was like when he was at home. They actually can see (mostly) a placid well mannered man. I hadn't seen that for at least 18 months when he was at home.

Take care BE.

Love from Lyn T
 
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nicoise

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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.

Hi BE - yes, I've read it all to the end, and as always your posts make for interesting and thought-provoking reading. And I appreciate that you've tracked down and presented all this information which helps me to understand a little better. The brain is indeed a complex organ.

I can relate to the utter frustration of dealing with someone who is in denial, whether through an organic disease/damage issue such as anosognosia, or psychological.

Ultimately I have decided that whilst their view might differ from mine, there is little I can do about the whether the other person's view can take into account my view, and that therefore I have to alter the way I feel to cope. So thus if it is due to organic disease issues I have to accept that there is little likelihood of that changing, and I must temper my response. If it is of the psychological variety, I can take the decision whether to remain in the situation or walk away.

At the same time, and this is something you are obviously working through, there is also the reality that you have to protect your own mental and physical health. That whilst you have done and are doing all you can to care for your mother at home, the decline pathway is such that it will probably mean you can no longer keep her safe in the environment that is "home" with a level of supervision that means you can still have a semblance of independent living of your own.

And that whilst your mother's brain may now tell her that all her problems are down to you, you know that it is lying to her, but there is little hope that she will see past that. That is why you need to keep your independence, and get out into the real world with other people who aren't suffering from a brain disease, to keep your sense of perspective about what is real and what is imagined. Too much isolation locked in with the world of dementia can drag us down too... :eek: not that you need me to state the bl**dy obvious!

Keep going, but keep stepping away when you can; and keep up the interesting posts when you have the energy! ;)
 

Butter

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Jan 19, 2012
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NeverNeverLand
Yes. This makes sense to me. With knowledge comes understanding. But that does not mean we are personally 'better' people.

I am sure there are many people working on this at the moment .... research projects and academic papers and clinical work and and and ..... even my son with his mini-project for his first degree found himself caught between disciplines: psychology thought he should be with biology and biology was certain he should be with psychology. Then there was a row about who was providing the labs and doing the funding...... and securing the rats (literally and biologically) until my son found his supervisor (distinguished biologist) was not allowed in the psychology labs ...... without going through security vetting procedures .....

So yes - we are all tying ourselves in knots trying to get this right and learn and look after people ...
 

Noorza

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Jun 8, 2012
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Hi BE - yes, I've read it all to the end, and as always your posts make for interesting and thought-provoking reading. And I appreciate that you've tracked down and presented all this information which helps me to understand a little better.


I could not agree more. :D
 

Pross

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Mar 2, 2013
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BE, of course I read through to the end of your post. What comes through for me however is your overwhelming anguish at your Mothers's decline. You love your mother so much and really can hardly bear that she's not the person you knew and want still to be around. In the last analysis I'm not sure how much labels matter - in my experience they tend to be a reason to file and forget.
I'm worried about you - I feel you need more distance from dementia, not more research and immersion in the subject. Slap me down if you feel I'm speaking out of turn. I'm old enough and tough enough not to mind.
Big hug. Pross. X
 

Noorza

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BE, of course I read through to the end of your post. What comes through for me however is your overwhelming anguish at your Mothers's decline. You love your mother so much and really can hardly bear that she's not the person you knew and want still to be around. In the last analysis I'm not sure how much labels matter - in my experience they tend to be a reason to file and forget.
I'm worried about you - I feel you need more distance from dementia, not more research and immersion in the subject. Slap me down if you feel I'm speaking out of turn. I'm old enough and tough enough not to mind.
Big hug. Pross. X

For me the "labels" bring understanding, bring compassion where there could be hate, a safety shield that helps me to continue caring where the onslaught of abuse without the diagnosis and therefore understanding would have me running for the hills.

If my mum was in her right state of mind and hit me, slapped me, kicked me, accused me of all kind of abuse, then I would have left, then I would have "filed and forgot" but having the "label" means that I can research, I can find out what is really happening inside her brain, why she acts as she does and why she's changed, it gives me the strength not to file and forget but empowers me to battle another day to get the best treatment for my mum.

I am hugely grateful to BE for sharing their insight. Ultimately, there is no right or wrong way to cope with this hideous disease, we each find our own way through to manage for another day.
 

Big Effort

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Jul 8, 2012
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Dearest Pross,

I'm worried about you - I feel you need more distance from dementia, not more research and immersion in the subject. Slap me down if you feel I'm speaking out of turn. I'm old enough and tough enough not to mind.
Big hug. Pross. X

Do I look like someone who would slap a friend, even an online friend? No, Pross. No slaps, virtual or other.

What you are reading is a process. My process. This is Mum's and MY Dementia Journey.

Here is what is going on for me:
One instance of amnesia and 12 hours in hospital. Harmless but still an indicator of my uphill battle to maintain decent life despite dementia, for all of us.
Boil, not huge, residing under my left arm on ribcage. Also a sign of being stressed and run down.
Invisibles not there at all.
Mum slipping faster than I can catch her and she is behaving so like a trapped tiger and lashing out.

I will work in September. I love the work, and have given up 4 years to be at home. Now I am struggling to get a live in carer, have one coming in mid-August to Xmas. I have been so sad and tearful for months now. I believe that subsonsciously I knew I would not manage to keep her at home to die a home death.

The Anosognosia stuff has helped me understand why Mum is always right and so perfectly convinced all is well. Her conviction she is not ill nor does she have any memory problems at all ("Just ask the doctor, he'll tell you I'm fine") is very very wearing. The charade wears thinner and thinner and gets more contorted and bizzarre with every passing day.

This charade is frightening. An imbecile would realise they can't do up a button or answer a phone, or know how to unbuckle a seat belt. Not Mum. I cannot sleep at night leaving an inbecile alone to fend for herself (and in denial). I cannot go to work and leave my husband to deal with this. And for my own sanity, I cannot deal with this on my days off. It is a big job, lots of personal engagement and public performance, so I suddenly know why I was so upset all these months.

Mum has reached the end of the time when she can live in her own home.
I have reached the end of my tether because I know she will never acknowledge any illness due to Anosognosia. So it will always be me who fails her.

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.
Dementia 1, BE 0.
Time for me to face there won't be a party with pretty music.
I must prepare for very difficult times ahead for me personally, emotionally.

Where the hell are my invisibles?
Love BE
 

Noorza

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BE For what it is worth, becoming educated on the condition for me is vital, my son has OCD and my mother dementia. To help my son I had to understand his condition and that wasn't something I decided, it was something the psychiatrists decided was so important that they arranged for Cognitive Behavioural Therapists to teach the family alongside the children with the condition.

I now have to do the same with Mum, and your posts are hugely beneficial and informative for me. Knowledge for me is power.
 

Big Effort

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Ah Noorza,

becoming educated on the condition for me is vital
A woman after my own heart (and mind).
I agree, knowledge is power. That is one side of the coin.
The other side is Dementia knows no limits, no bounds, no rules. So even with Knowledge, failure to manage and cope is all too frequent.
As I have come to realise.

Thanks for all your encouragement though. It feels good that you and so many others understand.

xx BE
 

Noorza

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Jun 8, 2012
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Ah Noorza,


A woman after my own heart (and mind).
I agree, knowledge is power. That is one side of the coin.
The other side is Dementia knows no limits, no bounds, no rules. So even with Knowledge, failure to manage and cope is all too frequent.
As I have come to realise.

Thanks for all your encouragement though. It feels good that you and so many others understand.

xx BE


Dementia is a nasty vicious disease where the sufferer hits out at the only people who help them. The invisibles get off scot free as they're not there. If we as the carers walk away they have no one. What other kind of illness rejects the people who are trying to help?

For me the only way to cope is to try to get some understanding of what is happening inside their heads. If I thought it was "my mum" and not "dementia mum" who was doing all of these vile things, I'd have walked away well over a year ago.

The knowledge gives me the strength to stay and keep taking the abuse.
 

Big Effort

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Dementia is a nasty vicious disease where the sufferer hits out at the only people who help them. The invisibles get off scot free as they're not there. If we as the carers walk away they have no one. What other kind of illness rejects the people who are trying to help?

For me the only way to cope is to try to get some understanding of what is happening inside their heads. If I thought it was "my mum" and not "dementia mum" who was doing all of these vile things, I'd have walked away well over a year ago.

The knowledge gives me the strength to stay and keep taking the abuse.

Noorza, we are birds of a feather. This is exactly my strategy. I just didn't have the insight to explain it like you do. I am not obsessing about dementia. I am trying to understand it so I can better support Mum.

Now..... picture me in the garden, for I am already there under the cherry tree. xx
 

Forestridge

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Feb 10, 2013
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Ah Noorza,


A woman after my own heart (and mind).
I agree, knowledge is power. That is one side of the coin.
The other side is Dementia knows no limits, no bounds, no rules. So even with Knowledge, failure to manage and cope is all too frequent.
As I have come to realise.

Thanks for all your encouragement though. It feels good that you and so many others understand.



These are very wise words indeed. Thank you for taking the time to post all this. I don't think I've done the quote bit quite right.

I'm not sure it applies to my Mum though I know there is some damage in the frontal lobe. She does know some of the time she has a problem 'holes in my brain as she puts it'. I think she probably fluctuates with varying degrees of denial plus break downs in communication between areas of the brain as she progresses. Eg. I last saw the remote when Forest was here. Forest has gone and the remote has gone so Forest has taken it . I guess it is logical in one way.

I too find I have to inform myself to cope. It's a form of control I guess. Dementia can't be beaten but knowing what to expect does mean you are ready for some behaviours when they crop up. There's a whole host of others who creep up and catch you unawares though .
 

Big Effort

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Jul 8, 2012
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Hi Forestridge,

Thank you for taking the time to reply.
Your quote worked fine. To make it come up in a quote box, all you do is copy the bit you want to quote, look at the top of the Message Box and you will see pretty daft symbols just above the space for writing in. The quote symbol is the fourth from the end on the right. Click on that. It will post this:
Now put your cursor in between the two quote signs and click. Finally post in your quote. Done.

I'm not sure it applies to my Mum though I know there is some damage in the frontal lobe. She does know some of the time she has a problem 'holes in my brain as she puts it'. I think she probably fluctuates with varying degrees of denial plus break downs in communication between areas of the brain as she progresses. Eg. I last saw the remote when Forest was here. Forest has gone and the remote has gone so Forest has taken it . I guess it is logical in one way.

If your mother knows she has holes in her brain she doesn't have Anosognosia. She is using the common defence mechanism of denial when she blames you for the missing remote control. I use denial all the time. My favorite form of defence/escaping reality. That is why I post, to force myself to see reality.

My sadness is the realisation that Mum's denial, is not actually denial. She has a rock hard certainty that all is well with her. She knows this. She will not entertain the error could ever, ever lie on her side. So we are all forced to dance a merry dance. The more that goes wrong in her world, the more she has to blame others. Right now every word that comes out of her mouth is blame.

I would choose denial every time. Anosognosia is a particularly cruel twist to an already cruel disease.

Bottom line is Mum will need more care than I can give her. She will 'know' this not to be true. She will blame me for putting her in a home. And that memory will never fade. Her daughter put a perfectly healthy, happy woman in a home against her wishes.

This is devastating and far, far, far from reality.
Very sad about this, I am. Keep posting, it helps us all. Love BE
 

jaymor

Volunteer Moderator
Jul 14, 2006
15,134
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South Staffordshire
Dear BE,

Right now in this moment in time no one on this earth can beat dementia in any of it's sickening forms. So none of us fail our loved ones when we have to surrender to it.

We are not responsible for the condition we find our cared for living with. We cannot take away their Anosognosia, in fact we can do very little other than care for them and care about them until we can do it no longer. I fought Alzheimer's and my husband for 7 years and would have carried on despite 3 separate crisis. I needed to be sat down and told his needs were greater than I could deal with. How right they were and how bl##dy wrong was I. My one regret in all this was I thought I was invincible.

My husband has been in care for 12 months now and I attend monthly relative meeting and I so want to scream at some of the relatives who have no insight what so ever into dementia. They have just not bothered. How can you care for someone and have no idea of what they are going through? So many of us on this site could give lectures on dementia. We have taken the time and trouble to read, research etc. You above everyone have added so much to the knowledge we already have and yes I have read your latest discovery all the way through but will need to read it several times through to be sure of understanding it completely.

So please have no doubts that you are taking the wrong route when you say care is now to the fore of your thoughts. We do not live in a perfect world, we can not give everyone what they think they need, if we could then dementia would certainly not have been the problem in the first place for us all.

Take care,

Jay x
 

Austinsmum

Registered User
Oct 7, 2012
304
0
Melton Mowbray
So please have no doubts that you are taking the wrong route when you say care is now to the fore of your thoughts./QUOTE]

I’ll second that Jaymor. BE, when you made that promise to yourself that your mum would die at home, you weren’t in possession of all the facts. You didn’t know about Anosognosia, and how it would impact on your world. Now, you are aware that your mum will be more settled if there is some distance between you. It’s you she doesn’t trust, so this new development is ‘giving you permission’ to proceed down the Care Home route.

Stop torturing yourself. XXX