Wednesday, 15 October 2014


I remember the exact stomach-lurching moment when I realised there was something seriously wrong with my mother’s memory. 

Sitting on my sofa on a warm summer evening, I was talking to a friend Carla who was visiting from my home town. 

We were laughing about how happy my parents were, living out their twilight years in rural bliss. And we agreed that both us wanted what they were having. 

Then Carla said she’d noticed Mum was getting quite forgetful - not the usual temporary brain fade. Weird black holes. 
There were conversations and events where my mother had been fully involved, yet soon afterwards she had no memory of them. Absolutely none. Even when reminded. And these weren't one-off incidents - they were happening more and more. 

After a few months, things worsened and the investigations began. I tried to persuade Mum that she needed tests because her memory wasn't so good. Maybe it wasn't the dreaded D word. Maybe it was something else. 
"It would be be good to rule stuff out", I’d say. Maybe something could be done. 

But Mum wasn't having it. “It’s just stress,” she’d say. “I really think people underestimate the effect of stress.” And then she’d tell me I was stressing her out.

Things started going wrong more often. There were tearful arguments and stormings out, endless confusion with visitors and tradespeople and embarrassing muck-ups with all kinds of arrangements. Mum was adamant. It was just stress.

Several years later, when I finally negotiated a psychogeriatric assessment, the specialist took me aside and said Mum probably had Alzheimers disease. When Mum joined us, he didn't tell her. Instead he completely fudged the issue. I was furious.

After that near miss, Mum took things into her own hands. She told me in no uncertain terms that if there were to be any further assessments, she didn't want to know the diagnosis. Once again, she was adamant. So I stopped trying to talk about what was happening and focused on future plans.

Round and round we went. Mum was happy to entertain all sorts of possibilities, as long as they stayed at a safe distance. Whenever we got to the point where any kind of commitment was required, she baulked. But I couldn't stop myself from trying. And I became the enemy.

The turning point came during a discussion with Robyn, Mum’s support worker. It was pretty exasperating - even Robyn seemed reluctant to admit that I was right and Mum was wrong. Then Robyn asked me what was more important - being right or being kind. Telling the truth or trying to understand things from Mum’s point of view.

Part of Mum’s condition is that she is unable to have insight into her condition. I knew that. But it was not until then that I realised I’d been having my own problems with insight. I was treating my intelligent, articulate, verbally fluent mother as though she was mentally unaffected - arguing with her, correcting her, constantly explaining things. As though by sheer force of will I could make her acknowledge what was going on and plan for the future.

The irony was that dementia had already robbed her of that capacity.

And I had failed to see.

“More than denial, anosognosia is a lack of awareness of impairment – most people do not even know they are ill – and it affects up to 81% of those with Alzheimer’s disease.”

- from Tips for Dealing With People Who Don’t Know They Have Dementia on A Place For Mom, a great blog full of tips for families, about coping with dementia.

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