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Interview: Christine Bryden author

17 August 2012

'I was 46 - far too young to have dementia'

I had just been diagnosed with dementia, and was reeling from shock. I was a science editor, first for Elsevier in Holland, then Pergamon Press in Oxford, and then in Sydney; and after that a writer and editor for the science area of Reader's Digest in Sydney. Then I became an information officer, then policy-and-planning manager for CSIRO [Commonwealth Scientific and Industrial Research Organisation]; and lastly the science-and-technology adviser to the Australian Prime Minister.

As a single mother with three girls aged 19, 14, and nine, I was very fearful about their future and mine. Would I live to see them grow up?

A friend, who is an Anglican priest, met me each month to pray with me and encourage me in the first months and years. She suggested I write about my feelings and insights, and a book emerged.

Its title, Who Will I be When I Die?, expressed my fear of not knowing who I was when I died with dementia.

Although I wrote at work - policy papers, planning documents, and briefings - I had never written a book. But, a few years after university, I had spent some time working for publishers, so knew about the process and about editing and structure.

It was a real muddle at first, trying to get my thoughts in order and on to paper. But soon words started to flow, and I was able to begin to capture my thoughts, fears, and feelings.

I wrote it chapter by chapter, trying to make sure that, as I reached the end of each one, there were questions and thoughts raised about the next page. Trying to put it all together was a real challenge, as I just felt I couldn't see the whole picture.

I thought dementia was a normal part of ageing. That's what shocked me at first, as I thought I was far too young to have it. I was only 46. But all too soon I found out that dementia is caused by more than 100 different diseases, and that three out of four people will never get any of these diseases. I have been in touch with those diagnosed at the age of 20, even 16.

I am deteriorating, and without my anti-dementia medication it would be far worse.

My thoughts are muddled, and my ability to cope with stress has completely gone. I have very little memory of today or yesterday, and wake up in the morning with no idea what day of the week it is (let alone the date), or what is meant to be happening today.

If you are worried that you have dementia, check with your doctor, and persist in finding out what is wrong. All too often we are fobbed off and told it's just a bit of ageing. You are the expert on what is happening inside your head. Don't be put off, and keep asking for more tests till you are sure you have found out what is wrong.

It is hard to summarise the difference between absent-mindedness and dementia, but I think maybe that it's relatively normal to forget where you've put your car keys - but not forget what to do with them, like start the engine.

And, of course, dementia does not just cause memory loss. In addition, there's personality change; maybe becoming more fearful or anxious, less capable of dealing with everyday life, giving up golf because you can't tally the score, or fishing because you can't remember how to fix on the hook, or being beaten by your four year-old granddaughter at memory card-games - all of which have happened to me and friends - and confusion, getting lost, and so on.

It will take exhaustive neuropsychological tests to tell the difference between forgetfulness and dementia, although sometimes the brain damage is sufficient to show up on brain scans, like mine did.

Include us, and remember we are whole human beings, with body, mind, and spirit, just like you. We need to be included in all your acts of worship, including communion, and to be in fellowship with you. You can bring the Christ-light to us in our time of need.

I live north of Brisbane, Australia, on the lovely Sunshine Coast. Two of my daughters live within just a few hours' drive of us. One lives a two-and-a-half-hour flight away. The first ten years after diagnosis caused huge traumas for my girls, each reacting in a different way. It has taken many years for us all to process what is happening, and to recover from the shock.

Now my relationship with my daughters is strong and loving, but I know that my increasing disability causes them pain.

I am so glad that I chose to become a Christian, and to marry Paul. My biggest regret is marrying my first husband.

I would be humbled to be remembered for changing the way people with dementia are respected, included, supported, encouraged, and enabled.

Apart from Jesus, my role-models were my aunt, a determined woman who made her own way as an architect in the men's world of concrete construction, and my grandmother, for her serenity and piety.

I've enjoyed so many authors and books; so I cannot recall any one that stands out. And, again, my memory fails me, so that I cannot recall a particular sermon.

My favourite place is our back patio, where we sit on comfy chairs and look out over our leafy pool area, trees, and wonderful colourful birds. I'm happiest sitting there with Paul.

My favourite passage is one inscribed in the Bible that my eldest daughter gave me when I had just become a Christian: Ephesians 3.16-19. My least liked? Well, many parts of the Old Testament seem so bloodthirsty and full of detailed regulations, which are hard to reconcile with the joy and peace found in the New Testament.

I love the purring of cats, the song of birds, and the rhythmic sounds of the waves. All these are signs of God's creation and love.

People who demean those of us living with dementia make me angry, saying that we lack insight, or are not worth bothering about, as we are just mindless empty shells. They even make jokes about us. How can they ridicule people who have a fatal disease?

They focus on what we have lost, not our inner spirit that remains; so they don't treat us as human beings.

Prayer is hard now, as my thoughts are so muddled, but I try to pray for the needs of others, and for my daughters.

I have an eternal life with Christ; so my future is infinite. Yes, this temporal life will end, probably in the horror of end-stage demen- tia; but I pray that Paul and my daughters may even then be able to see Christ in me connecting to the Christ in them.

I'd choose to be locked in a church with Paul, my best friend and husband. He would guide me in prayer and faith, and he will remind me that where two or three are gathered together, there Christ is also.

Christine Bryden was talking to Terence Handley MacMath.

Who Will I be When I Die? was published by HarperCollins in 1998 under Christine's maiden name of Boden; a revised edition has been produced this year by Jessica Kingsley Publishers, £12.99 (£11.69); 978-1-8490-5312-9.

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