When she was just 46, Christine Bryden – science advisor to the prime minister and single mother of three daughters – was diagnosed with younger-onset dementia. Doctors told her to get her affairs in order as she would soon be incapable of doing so. Twenty years later she is still thriving, still working hard to rewire her brain even as it loses its function.
The first few years after my diagnosis were some of the hardest of my life.
I found driving and finding my way places more and more difficult, until I stopped driving altogether. I felt as though I was thinking slower, and having trouble following conversations.
I stopped using the phone because it frightened me that I couldn’t see who I was talking to and sometimes I forgot who was on the other end of the line. I stopped trying something if it became difficult. I felt that everything was hopeless, and that it was not worth trying.
I became more and more helpless, and far more reliant on my daughters. I felt grief about the steady loss of all the things I would no longer be able to do.
Fear of the future – of loss piled upon loss – paralysed me for several years. But (although this was years before Doidge’s book came out) slowly I began to realise that all this grief had disabled me perhaps even more than the actual dementia, so I needed to claw my way back again.
It was not until I had been able to overcome my sense of hopelessness that I was able to begin to overcome my actual helplessness.
So, with my newfound motivation, I remember announcing to my specialist in 1996 that I was planning to write a book. He said he’d look forward to reading it. Then I nervously asked him how long I’d have to write it. How long before I couldn’t write any more? Couldn’t remember to write any more?
‘I can’t tell you that,’ he said. ‘Everyone’s different. But if I were you, I’d get started as soon as possible.’
It was some time before I got to it. Partly, let’s be honest, because I was a little bit daunted at the prospect of writing a book about my life and my condition. How would I get all my thoughts together? Would my poor shrinking brain let me down halfway through? But the main reason I didn’t start the book immediately was because I soon found other ways to reach out to the world.
In about June 1996, Simon Grose, a science writer who I knew from my work days, wrote a piece in The Canberra Times about Ronald Reagan, who had two years previously been diagnosed with dementia. He titled it ‘Who’s Al Zeimer?’ It mocked the former US president and, in my opinion, mocked those with Alzheimer’s disease.
I wrote to Simon immediately, expressing my disappointment at his article, explaining that I had this disease, it was terminal, it was no joke, and that it wasn’t just something old people got.
Simon wrote back, expressing his deep regrets and saying that the Times wanted to do a story on Alzheimer’s disease and perhaps I’d be willing to be part of it. I was, and that’s how Verona Burgess came to write a story about me that ended up being a full-page article with a huge photograph of me.
It gave me quite a shock to open up my newspaper that Saturday morning! I had certainly ‘come out’ about my dementia! Although I was daunted, I felt that it was the right thing to do. I thought it was important not to be ashamed of my dementia, especially if I wanted anything in the world to change, which, I realised now, I certainly did.
The week after that newspaper article, Mike Munro from A Current Affair got in touch, and they did a show on my story and about dementia. I thought it was good – it covered the main aspects of Alzheimer’s and its effects on our family. The only thing missing was any reference to my Christianity, but a few months later there was a follow-up show, a one-hour special, and in that program my faith was mentioned and explained, which I was grateful for.
I got such wonderful feedback from the TV appearances – I got letters, cards and lots of beautiful stories that showed me how much my story had touched people. It made me realise that my book needed to be written, and it wouldn’t write itself. So I embarked on the next big project of my life, which was to write my first book, Who Will I Be When I Die?.
It was an honest account of living with dementia, of how it affected me, my relationship with my daughters, what I needed, and what I thought needed to change. It also addressed my biggest fear, and perhaps the biggest taboo of dementia: losing my identity from the condition, being an empty shell of a person when I died, with my essential self completely absent.
It was possibly the first time, certainly in Australia, that someone with dementia had written a book about their experiences, instead of those books being written by and for carers of people with dementia.
I firmly believe that, together with the medication I was taking, the mental stimulation and challenges presented by writing that book started to contribute to my cognitive abilities seeing some improvement around that time. I was using my brain, rather than just losing it.
One morning in early 2008, just after I’d finished writing my book, I cheerfully announced some good news to my daughter Ianthe: ‘I’m getting better!’
I’d been so excited to tell her, but I knew she’d be concerned. And she was rather sceptical.
I told her that I wanted to start driving again, and she said, ‘Oh, we’ll see,’ – universal mother-speak for ‘No, you won’t – but I don’t have the energy to fight with you right now.’ I knew the language well – I’d used it on her in the past many times.
But I was feeling so much better. My head was clearer, I was more confident, I was happier. The depression was lifting and so too was the fog of dementia – and words were coming out more easily. I’d been on my medication for quite some time, so perhaps it was finally working.
I was determined to prove to my family that I was getting better and at my next neurologist’s appointment I told him so.
He talked to me and assessed my reflexes. Apparently dementia makes a person’s reflexes regress to infancy. The grasp reflex, for example, that you can see in a newborn baby if you put your finger in its palm, becomes pronounced once again. But that day he thought he could see that these reflexes weren’t as pronounced as they’d been two years ago when I was first diagnosed.
He said those wonderful words I’ve heard so often in the last twenty years: ‘Would you mind if we did some more tests?’ I agreed and went through the usual routine of scans and psychometric testing. When Ianthe and I went back to Sydney to see him, he was very encouraging.
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I started driving again, just locally, which made Ianthe very nervous, but I knew I was feeling well and I wasn’t going to be boxed in all day.
The other thing I did was to enrol in tertiary study. At St Mark’s theological college in Canberra, I enrolled in a Theology degree. This would certainly stretch my brain! Although I was nervous, some determined streak, hard-wired deep within me, propelled me forward to fill in the application form. I can do it.
All the lecturers were considerate and helpful; I’d told them all about my dementia. Although learning and recalling new facts was difficult – almost impossible – I could still engage with ideas, read, and with lots of time I could even prepare essays. Most of the work I did by correspondence, so that I could take my time at home to complete work, but I still went into the college regularly.
I had new ideas, facts and issues being debated all around me, I was meeting new people and I was happy. Theology was very far from science, and really took my brain into new ways of thinking, which felt good.
Research has shown that socialisation and mental stimulation is a very important part of preventing dementia, and I’m sure this all helped me tremendously to slow down my decline.
Coming out of my depression was also helpful for my cognitive function. When a diagnosis of dementia leads to depression, I believe this can create a pseudo-dementia where the symptoms are real and fast, but are directly related to the person’s assumption that they can’t function any more.
As I’ve mentioned before, this in turn can be a dangerous self-fulfilling prophecy – if you don’t keep those brain cells firing, they will eventually stop, leading to even further decline.
So my brain was being challenged, socially engaged, and lifted out of depression. All of this was good for keeping those brain cells of mine firing away as best they could. My brain responded by behaving as if it wanted to ignore the fact that it had dementia, and to embrace all that life had to offer it.
And when I got my marks back from my first subject and found I’d been given a High Distinction, my hard-working brain had been vindicated. I felt propelled to keep thinking, keep doing, keep contributing for as long as I could.
Extract from the book BEFORE I FORGET by Christine Bryden, published by Penguin Books Australia, RRP $32.99 and ebook $12.99. Buy it here.