Friday, July 26, 2013

My Mother’s Memory: The Effects of Delaying an Alzheimers Diagnosis

Could the human capacity to remember be imagined as a shelf on which rest the things we know of the world? And if the shelf disintegrates, our memories have nowhere to rest?

That’s a poor analogy in some ways, because the shelf itself holds the kind of basic memories that tell us who we are and where we belong in the world. It seems to me that some of the less important understandings – the items on the shelf – dissolve or disappear before the shelf itself completely gives way.

My mother has cognitive impairment. Her short-term memory is terrible and continues to get worse. She is fast losing her understanding of how the more complex aspects of the world work. She probably has the beginnings of Alzheimers or some other form of dementia, but until she gets tested, nothing can be done. Yet she doesn’t care whether or not she gets tested, and my father is in a state of active denial. The more you try and bring him around to the need for testing, the more defensive he gets.

My mother knows who she is, that she has daughters and grandchildren. She drives to Chadstone alone and walks up and down the main walkways; she doesn’t buy much, but she says the walking is her form of exercise. She rings me and leaves messages saying ‘This is your mother here’. She complains about finding it hard to buy clothes because she’s so short; she recently found a new skirt that she likes, and showed it off to me with great delight. She is as obsessive as she ever was about keeping the house tidy.

But her short-term memory is terrible. She’ll remember some of what she did the night before, but specific details get wiped. Visiting my sister one night she commented on the large, efficient clothes airer that sat in front of the fire. A week or two later my sister found an identical one in a hardware store. She rang my mother to ask if she should buy it for her. My mother had no recall of admiring my sister’s clothes airer, and no interest in the one my sister had found. ‘We don’t really need clothes airers’, she said.

More serious than that, she’s losing her grasp on the world’s complexities. She could probably no longer explain distinctions such as the difference between state and federal, a premier and a prime minister. And while she is still aware of the things that affect her life – her grandchildren, her friends and so on – she finds it hard to follow the thread of conversations that go beyond the basic.

Her memory continues to get worse. A few months ago, in her own kitchen, she began cooking a birthday dinner for one of her nephews. Soon afterwards, she forgot that she’d already started the cooking process.

Memory also includes what goes where. Months before that, another of my sisters dropped over at dinner time one night. Mum was in the kitchen, having just put the electric kettle on the lit stove. When my sister’s horrified eye moved towards the stove and saw what had happened, Mum saw too, and understood right away what she’d done. But it was the fact of her doing it that was the problem.

Yet to my knowledge she’s never had one of those catastrophic existential moments that can confront sufferers with the reality of their illness – the ones where they suddenly become so disorientated they don’t know where they are or what they’re doing.

Such a moment is dramatised in the biopic Iris, about the life of the philosopher and novelist Iris Murdoch, an Alzheimers sufferer. Murdoch is in the middle of a pre-recorded television interview when her magnificent brain fails her. She’s talking about education when she halts – what was she going to say? What’s going on? What is the meaning of the camera, the interviewer, and who is that person on the array of television screens? On the way home she gets hopelessly disorientated.

At the possibility of this happening to my mother, it is tempting to join my father in his denial. There are a couple of factors that encourage such a stance.

Factors that can cause poor memory

My mother is on a few different drugs for her ailments, which include high blood pressure and osteoporosis. Many drugs can cause forgetfulness. One researcher even developed a questionnaire to determine whether a drug regime was causing toxicity. This is something I would like a specialist to look at, but I realise it can’t, at this point, be the whole story.

The other factor is diet, but as I am the only one in the world who perceives this, there’s a fair chance that it is delusional thinking on my part. For Mothers Day this year my sisters pooled their money to buy my mother a coffee maker. I was horrified.

Ever since I was diagnosed with the little-known and incurable condition of low blood sugar, or functional hypoglycaemia, I’ve thought that this condition was implicated in my mother’s long-term fatigue, forgetfulness and low-level depression; caffeine and concentrated sugar, both dear to her heart, are the worst things for this condition. Her memory’s been poor for years, and she’s always useless in the afternoons, slightly better after her obligatory nap. I can’t count the number of times, even before her memory problems became serious, I’ve suggested she give up sugar and caffeine. Each time in her airy way she acts as if it’s the first time she’s heard of it. This is understandable now, but she’s always been completely uninterested when I broached the subject in investigating diet for her fatigue – she’s a long-time foodie.

However, I am fooling myself that Alzheimers or some form of dementia isn’t the culprit. Research shows that mild cognitive impairment can be a precursor of Alzheimers by many years. And Alzheimers is ‘by far the most common cause of cognitive impairment’.

An incomplete diagnosis

About two-and-a-half years ago my mother did get tested. The specialist told her she was on the borderline, could take anti-Alzheimers drugs if she wanted to, and should come back again for another test in two years time. I didn’t find out about this until almost a year later – my elder sister deliberately lied about the results to shield me. However, it wasn’t, in my understanding, a diagnosis of Alzheimers but of cognitive impairment. 

Even once mild cognitive impairment has set in, much can be done to halt and even reverse it and perhaps actually prevent it from sliding into Alzheimers. I curse the specialist and all my mother’s doctors for their slackness. Did the specialist tell her to do brain exercises? Watch her diet? Walk regularly? That she could arrest or at least slow some of the decline if she wanted to? Not by the sound of it, apart from offering the drug option. She was, it seems, just another bumbling 76-year-old woman. Next, please.

When my sister told me the truth about these tests – about a year ago now I suppose, I am vague myself – I wandered around in a daze of low dread, of loss and helplessness. It was as if I was feeling my mother’s loss of mental power in my own head. This laid bare, mercilessly, how bound up my identity is with my mother’s. It was as if my own brain, my own self, were under threat. In a way it was. I had never escaped the over-identification with the mother that is the trap of poorly mothered women.

Yet I don’t want this to sound as if I have come to terms with my mother’s illness. The move towards acceptance of Alzheimers in a parent seems to come in increments. I cannot properly grieve for my mother’s Alzheimers because there has been no proper diagnosis.

Of course, that dark dread, which returns periodically, is not just about over-identifying with my mother’s brain. There is a much more prosaic way in which it translates to my own experience. If she has Alzheimers this means it runs in the family, so I have a greater chance of getting it.

And this is ironic too, because mental debilitation of different sorts was an early symptom of what I now see as my OCD. I spent my twenties and to a much lesser extent early thirties dreading the onset of hallucinatory schizophrenia, and the future risk of Alzheimers. I had no idea that these lonely worries were part of a completely different disorder that was not in my future but very much in my present. I have always been a vague person, and worry about my vagueness came second only to concern about my social anxiety symptoms.

My identification problems with my mother make it difficult for me to witness with any objectivity her poor management of her debilitation. At the same time her shortcomings seem too conveniently related to her illness (a selfish stance I know, reflecting my own damage).

There have been so many ways she could have improved her memory, and even at this stage she could do more to preserve what she has. Frustratingly yet predictably, everything about my mother’s character that complicated my own development is writ large in her failure to take control of her cognitive impairment to the extent possible. This failure is all too consistent with her careless attitude to not only my illness as teenager, but her own physical health.

My mother’s identity has always been weak. Her lack of a strong sense of self, her utter emotional slipperiness, her reliance on others for affirmation – all these have been bound up with a chronic lack of attentiveness, resulting in an inability to shield her children from nutty relatives, poor teachers, the ravages of neurosis. Now these same weaknesses impact on her own ability to hold off some of the effects of her illness. And the illness accentuates those weaknesses to strengthen its hold on her, encouraging her not to care.

More than that, the cognitive impairment itself seems to be all of a piece with these weaknesses, a natural outcome of a lack of attentiveness to self and others. It seems as if my mother is making the ultimate escape. How dare she leave when she has never been fully present? And what does it say about me that I am incapable of viewing her dilemma except through the lens of my own needs?

The upside

I don’t want to be completely negative. My mother’s excessive acceptance has its good points. She is childlike and easygoing. She has lost some of the more bitter aspects of her personality. If she does descend to full-blown Alzheimers, I can’t imagine her being difficult to manage. If anything, she will be overly compliant.

My father is in good health and at seventy-eight has more energy and sprightliness than most men his age (‘sprightly’ seems the wrong word for him – he doesn’t really seem particularly elderly to me) and is a very giving person. He has taken over much of the domestic load, although his semi-incompetence in this area is becoming a problem – he burned my mother’s nylon undies recently when he put them in the dryer.

For a mother who was always so absent, so lacking in maternal instinct, my mother gave a good impression of presence. I always believed she was looking out for me even when there was evidence to the contrary. Now I know she never will be, never can be. I must look out for myself, be my own mother. It’s a heavy, difficult task. I cannot give to her at this point the care that a fully functioning daughter could. But I will give what I can when the time comes.


  1. Hey Slightly Nutty,

    I just wanted to send you my support in spirit.

    Thank you, once again, for sharing yourself with us.


  2. Thanks Kate, much appreciated. As usual I feel better after writing this :)