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.
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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.
