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Chapter 5 You look so well! - If only I had cancer!



I sat with a couple of friends in my garden, sharing a pot of tea and some biscuits.

'You look so well!' one friend said.

'Yes,' said the other, 'I don't think I've ever seen you looking so well.'

But how did they expect me to look? How are you meant to look to the outside world when you have Alzheimer's disease?

For younger sufferers, we don't look to you as if we have Alzheimer's - you know, white-haired, doddery, frail. We don't look that old, we are often fit in our physical bodies, and so you don't know anything is wrong with us.
The time I now have at home, to rest, to eat, to garden, means that I look better than I have ever done before. I'm now quite normal in build rather than thin, and no longer appear pale, drawn and ill, as I was at work with continual migraines.
Unfortunately I have a disease of the brain, so you just can't see the diseased bit of me. My outer shell is fine, it's just my mental powerhouse that is on the blink! What's wrong with me is inside my head. I'll probably look well until shortly before I die, when my brain finally forgets how to run my body. Unlike other diseases, such as cancer, people who don't know I am dying will see me as a perfectly fit person who just behaves a bit oddly.

In early 1997 I had an unusual spot appear and grow larger on my leg. I joked - but more than half seriously - 'Maybe it's cancer, and if I do not get it treated, I could die as "me", not some very altered person who is totally confused and not connecting with life around her!' It turned out to be a wart. Although it was large and malicious-looking, it was totally harmless. I was actually disappointed that it was not cancer, as I still sought some release from a death of my mind by slow degrees.

If I were to die of cancer, I would still be the real me, the one I know, the one my family and friends know - mother of my three girls and member of my church 'family'. When I die of Alzheimer's, who will I be when I die? Even though friends and family repeatedly reassure me that I will always retain the essential 'me' right to the end, only my head knows this, but my heart still does not accept it.

Alzheimer's disease is a terrible thing for us as a family to face up to - that slowly there might be less and less of 'the old me', as my brain slowly erodes away. The brain is, in a way, what defines us, gives us our sense of consciousness, of being in a world and able to interact with that world. It, too, I feel, is what gives us the ability to pray, to communicate with God.

I am scared of the prospect of eventually not recognising my surroundings and not knowing who my girls are, or being able to greet my friends. Surely that will be a lonely and frightening place to be - always somewhere unfamiliar, surrounded by strangers, and nothing you recognise to turn to. Will I still be able to hold onto my faith in God?

At least with cancer there is a chance, however small, of full recovery. Who has ever heard of someone getting better from properly diagnosed Alzheimer's? In the past all sorts of dementias (caused by depression, hormone deficiency or toxic substances) were all lumped together and called Alzheimer's. But many of those other causes of dementia can be cured. And that is why I had so many tests, to rule out all possible curable forms of dementia, and to find a cause for the brain damage that was so clearly visible on X-ray, let alone on the other more specialised forms of brain scan.

So Alzheimer's expected to be is a one-way street; true, it's relatively slow, but it is inexorable. Death by small steps. Friends and relatives lose you by minute amounts each day, each week, each month, each year. So perhaps they will get used to this slowly evolving new person, until they have forgotten what you were really like before your brain started disappearing. That's why I'm glad we have bought a video camera. At least there will be some record of who I was when I was more or less really me, and not the diseased me.

And my very dear friend, Karen, has said she will always remember me at the various stages. She has travelled this road with her father. I trust her to be there for me until the end.

My daughters, too, will always remember, I know, but for them there will be so much pain and grief that this will be the hardest part for them - watching me disappear by small steps, becoming someone different each day.
The material I have read talks of being 'stripped to the core' with Alzheimer's, and so although the outer layers are gone, the essence of what makes the person an individual remains, and this includes their spirituality. Maybe this should reassure me.

Oliver Sacks said, in a recent 7.30 Report interview, that Alzheimer's sufferers don't lose their essential selves. True, maybe, but I know that I have changed a lot already. I am more stretched out somehow, more linear, more step by step in my thoughts. I have lost that vibrancy, the buzz of interconnectedness, the excitement and focus I once had. I have lost the passion, the drive that once characterised me. I'm like a slow motion version of my old self - not physically, but mentally. It's not all bad, as I have more inner space in this linear mode to listen, to see, to appreciate clouds, leaves, flowers . . . I am less driven and less impatient. And Karen certainly prefers me this way!

But am I really still me?

We are each a kaleidoscope of personality, which makes up every facet of who we are. But often we are limited in our range of expression of this multi-faceted person, because of our busyness, the demands and constraints, the expectations of our lives. I believe that God knows us in our entirety, each and every part of this kaleidoscope of who we are. As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multifold personality, I can feel safe as each layer is gently opened out.

The fullness of who I once was will be seen in the simplicity of who I am within, surrounded by layer upon layer of memories. These memories form the kaleidoscopic perspectives of all the many expressions of my being over my lifetime: as a child, daughter, grand-daughter and sister, as a student and young adult, as a wife and mother, as a friend, as a researcher, an editor, an information officer, policy manager and senior public servant, as a member of St George's church and a Cursillo team member, and as a writer of this book.

In each of these aspects of my life, the centre of my being was always there within, expressing itself in these many forms of me. This unique essence of 'me' is at my core, and this is what will remain with me to the end. I will be perhaps even more truly 'me' than I have ever been.

Who Will I Be When I Die
Contents

Foreword vi
Preface viii

The diagnosis
1 I'm too young!
2 The first signs
3 The second opinion

Who will I be when I die?
4 At least you can't die from it! - wrong!
5 You look so well! - if only I had cancer!
6 A terminal illness - so why are we ashamed of it?

What's it like, having Alzheimer's?
7 Clinging to a precipice with my fingernails
8 From 'super-memory' to losing the plot
9 A confusion of sight and sound
10 A jumble of words
11 Life's essentials

An adventure into the unknown
12 Trying to be prepared
13 My car's an alien spaceship! - and other oddities
14 From 'super-mum' to dependent mum
15 A scary road ahead?

Where to now?
16 Our fifteen minutes of fame
17 Do I really believe in healing?

A postscript - a God of surprises!
18 I'm getting better!
19 A 'miracle cure'?

Thank God God's in charge!
20 Getting onto 'God's roller-coaster'
21 Why me - and why Alzheimer's, God?
22 Is God a 'bandaid'?
23 Am I afraid of dying?

Appendix
What is Alzheimer's disease?