Hazel Hawke’s daughter joins Grey Matters as an occasional contributor. After supporting her mother, who had Alzheimer’s, Sue Pieters-Hawke has become a passionate advocate for dementia reform and healthy ageing. Here, we share an extract from her bestselling book Hazel’s Journey, detailing the events in the lead-up to her mother’s diagnosis.
One of the challenges in writing this book has been trying to look back and identify when the first symptoms of Mum’s Alzheimer’s were emerging. To tease out a narrative from any non-linear jumble of remembered facts, feelings, events and nuances, one that is sufficiently ‘true’ and accurate to be a fair and useful reflection, is confounding enough.
It’s tricky for a whole lot of reasons. Memory is a fallible thing at the best of times: our memories are subjective and selective by nature. Looking back brings its own distortions; how we remember something, now, is inevitably shaded by the changes wrought in us over time, often by the very process we are seeking to unravel. Even more so when it comes to something as emotionally charged as this.
As well, the early symptoms of Alzheimer’s disease are so amorphous and gradual, so open to other interpretations, that there is no ‘starting point’. It’s only when there is a definitive pattern that you can say this is obviously something that needs to be investigated further. But patterns, by definition, only make themselves obvious over time.
I think the philosopher Soren Kierkegaard nailed it when he said that life can only be understood backwards, but it has to be lived forwards. There is never a point in the early progression of a condition like Alzheimer’s where you see something and say to yourself, ‘Ah, now I am noticing the first of what will turn out to be a pattern of symptoms.’ It just doesn’t happen like that!
In my experience what does happen is that there are probably a few things going on that you don’t perceive as ‘problems’, or not as related problems anyway. Maybe you start to notice them on a subconscious level; maybe you have a niggling feeling that you mostly ignore. Then perhaps a passing thought becomes a regular thought and gels into a perception that you start to explore.
Perhaps you start to actively look at the person and see how they’re going about things, and measure that against how they did the same thing a few months or a year or two beforehand. You might toy with various possible explanations, then start to crystallise a growing sense that there is ‘something’ happening here that can’t be easily explained away. You start to wonder what you could do to help you understand, to ‘make sense’ of it. You wonder whether you even want to, whether you ‘should’.
In all this, either consciously or not, you are seeking an appropriate balance, trying to avoid becoming either unduly alarmist or dangerously complacent. And you are keenly aware that it’s not your life this is about, it’s someone else’s. When is it ‘your business’? What should you assume some responsibility for, and what should you leave be?
It’s not like a baby being born or someone having a stroke, where things change enormously and clearly in a very short time. The way Alzheimer’s develops in the brain is just like the way it develops in the lives of those affected by it – it’s a creeping thing.
The way Alzheimer’s develops in the brain is just like the way it develops in the lives of those affected by it – it’s a creeping thing.
I feel strongly that we need to recognise this because I’ve found that the notion that the presence of Alzheimer’s wasn’t spotted early enough is on that can hit carers badly. People will sometimes torture themselves thinking, ‘Oh, I should’ve seen…’ or ‘I should’ve known…’, despairing about why at the time a particular thing happened they didn’t understand that it meant X or Y. As if knowing could have changed things.
I understand this well because I’ve been through it myself. But I know it’s a downward spiral that only leads to useless guilt and an unwarranted sense that you’ve failed the person. Family and friends, companions and carers – whatever term you choose – need so much strength to get through what needs to be done, and to help the person with Alzheimer’s live the best life they can, that these negative thoughts and feelings are merely disabling and counterproductive).
There were also complicating factors in Mum’s particular case that obscured the picture. As early as 1993 she had been concerned about her memory not being as reliable as usual. It was only a year or so since she’d had the pituitary tumour diagnosed and surgically removed. So when she sought medical advice about her memory problems, she was told that what she was experiencing was completely in keeping with the physical trauma she’d had to her brain and the general after-effects of the surgery. In fact, dementia was specifically excluded.
The emotional stress of the marriage break-up was taken into account. There was also the factor of her thyroid function, which had been affected by the pituitary problems. She was on thyroid medications, which took quite a while to adjust and re-adjust, and thyroid problems can be associated with memory difficulties, and some other symptoms she was experiencing. So whatever day-to-day problems she had were seen as being consistent with all the physical and emotional strain she had been under.
We were given very similar reassurances by other doctors, separately and together, on those occasions when we asked about memory problems in the general context of Mum’s ongoing medical check-ups. I certainly have no misgivings looking back on this advice, although subsequently we realised that perhaps some of those early problems might have been symptoms of the onset of Alzheimer’s. But the practical effect of having received these reassurances was that we weren’t looking for further explanation.
That why I didn’t worry about it when, for instance, around 1997 she started to lose her house keys and I would have to pop over to let her in and find them. Yes, we thought to ourselves, Mum’s memory has got a bit less reliable, and that’s frustrating, but it’s no big deal. Mum’s not prone to worrying about herself and, perhaps taking my lead from her in those days, neither was I.
Sue’s new website is launching soon – www.suepietershawke.com.au – which includes new ways of looking at dementia.