Alzheimer's and Me

Lately I’ve been thinking a lot about Alzheimer’s. It began with a letter I wrote for the Mental Health Research Institute’s annual appeal. This is the photograph of my parents that is at the top of that letter:

Mum was in the very early stages of dementia then, but still very beautiful and vivacious, and my parents were still head over heels in love with each other. The full letter is here. Here are a few extracts from it:

About 300,000 of my mother's fellow Australians are living with dementia right now. Every six minutes a new sufferer is diagnosed. But we felt alone.

and

With Alzheimer's there's no kidney you can donate, no body part that can be amputated, no chemo to try. No drug cure. Nothing. Just patience and anguish. And then more the next day. And then again. And again. For years. With only death at the end.

and

It's predicted that without any significant medical breakthrough there'll be one million sufferers by 2050. 

If you'd like to donate to the Institute here's the link for that.

Then at the beginning of December I participated in a Dementia in Hospitals forum, a joint project of Alzheimer's Australia Victoria, and the Victoria and Tasmania Dementia Training Study Centre.

It was an interesting forum. The bad news is that nobody talked of a cure or even of a known cause. If there is a cure, it's at least five years away, and inside the brains of many of us baby boomers those pesky amyloid plaques and tau tangles are forming already. Tick, tick, tick...The statistics are terrifying and getting worse. It's strange how complacent people are about this. Denial, I guess. Ignore it and it'll go away...

The good news is that many dedicated and talented researchers are investing a lot of time working out how best to look after sufferers in acute care hospitals, which must be the worst, most frightening, places for them.

My speech was about my family's experience with Alzheimer's and in particular about how confusing and frightening hospitals were for my mother, and how hard we had to work to make the situation tolerable for her.

After all this I turned to a book called, The Alzheimer's Prevention Program, by Gary Small and Gigi Morgan

I didn't really expect a miracle. I suppose I was seeking a glimmer of hope.

The book is easy to read and well set out. It contains results from lots of studies and provides a recipe for healthy living. Remember that line, maybe from Laugh-In, 'Healthy mind, healthy body - take your pick'? Well, this book provides a template for both.

There are sections on nutrition, physical and mental exercise and reducing stress.

No miracles though, and no guarantees either. What the authors suggest is that by following these recommendations you can possibly postpone Alzheimer's by years. And if you can delay the disease long enough then maybe there'll be a cure, or you'll die of something else before it even manifests at all, or to any great extent.

Better than nothing.

For me the most encouraging thing I've read recently is that if the members of your family who have developed dementia have done so after age 65 then you are at no more risk than the general population. I felt a weight lift off me when I read that. I had assumed because my mother developed Alzheimer's in her 70s, then the disease was sitting at the end of my bed waiting for me. It still may be, I guess. I'll just have to get up earlier than it does and follow as many of the book's prescriptions as I can: eat a healthy diet, exercise my body and exercise my brain.

And then time will tell.

People who knew my mother always said I looked just like her. I was so proud of that. Now it makes me nervous that our similarity will be my downfall. Whereas before I used to seek ways in which we were alike, now I find myself looking for the differences between us.

Feast and Famine

There is an interesting series of human interest videos on the ABC Northern Tasmania website. The overall topic is 'Change' but this has been interpreted in many ways.

I provided the producer, Richard Pree, with some scanned photos from our family albums, and a recording of me reading a couple of extracts from my book. He then put these together to produce a very moving short video.

The piece begins with a kiss. My father was in the Air Force, transferred from his home state of Western Australia to Melbourne, when he met a beautiful girl. My mother was 16 when they met and 18 when they married.

While I was looking through the albums I came across a photo of my mother at a party with the television star Graham Kennedy. Look how beautiful she is.

The piece ends with another kiss. This time my father is 90 and my mother 84. She has only months to live, but their love burns as brightly as it did at their first embrace. Even her Alzheimer's Disease cannot quench its flame.

Writing as Therapy

When people learn that I have written a memoir about dealing with my mother's Alzheimer's they often ask me if the writing was therapeutic. It probably shouldn't, but the question makes me angry. I find it insulting. For me writing is both a creative endeavour and work; it certainly is not therapy.

Maybe it's the semantics I object to. If you say something is therapeutic, don't you mean it makes you better? Cures you of some symptom? Maybe all these people want to know is whether writing my memoir helped me cope with my mother's illness and death. And yes, it did, but not for the reason they think.

I recently read an interview with a writer who did say that writing her memoir about her mother's death was therapeutic for her. She even went on to add that she didn't need to see a counsellor because she'd written her book. Good for her.

For me, the writing process was engrossing and technically difficult, so it helped me in the way that work is often helpful: doing it kept me engaged and transported me to the place where I am most myself. But as far as being therapeutic, that is helping me to come to terms with losing my mother to Alzheimer's, it wasn't at all. I still found the journey heart breaking and it still hurts now three months after her death. It was an awful way to go and that's all there is to it.

Alzheimer's: A Love Story

I’ve sold my book about my mother's Alzheimer's. (This is not a picture of my mother, but of Alois Alzheimer who discovered the disease.) The book's working title is Alzheimer's: A Love Story.

I originally thought I’d wait until I finished the first draft before sending it off to a publisher, but I changed my mind. I began to feel that I needed editorial assistance with the structure, and without that I thought I’d waste a lot of time.

I submitted the first ten chapters to Scribe, the first publisher on my list, and three days later they offered me a contract.

They called it ‘impressive and moving’. Yippee!

It makes me nervous. This book that thus far has belonged only to me now has to answer to the outside world. But I’m thrilled and excited too, and I look forward to working on it with an editor. And of course to seeing it in the hands of readers.

Writing As Therapy

People often make a sympathetic face when they learn I am writing a book about my mother's Alzheimer's. 'That must be therapeutic for you,' they say.

I find that condescending and insulting. How would they like it if I said to them, 'Oh, plumbing/social work/law/medicine, eh? That must be therapeutic for you,' as though all their training, experience and professionalism was cast aside in the drive to make themselves feel better.

I like writing or I wouldn't do it, but it's work to take my own particular experience and shape and form it so that a fragment gives the impression of being my whole life in a way that illuminates for the reader their own.

Lying on the sofa this cold wet Saturday afternoon, I read this in Robyn Rowland's essay in the current Meanjin:

The writing of poetry is lived. It is not something we do, but something we are. It requires a life of observation, an openness to experience, an ability to empathise, an engagement with the transforming power of image and metaphor. It requires a moment when the self is put aside, akin to meditation: an absenting of the self, so that the poem may appear...It also requires technique....Then comes the real work - the shaping, the editing.

If writing is personal, is it cathartic? When people say, 'it must have been really cathartic to write that', it irritates me. It's a statement that casts poetry into the realms of therapy and creative writing is not therapy. It's an art. One that requires practice and patience and skill. Yes, the writing might be therapeutic in that it might uncover for us our own understanding of what we feel or believe. But that individual experience needs to be made universal so that it reaches out to the next person.

Memoir

My current obsession is the project I’m working on about my mother’s Alzheimer’s. It’s a mixture of memoir (which seems a funny word for writing about something that is ongoing, but I don’t know of a better) and biography. I have no idea if it will work. But I persist.

It’s such a mixture of past and present. I’m always struggling to decide what to include – how much of me in the present, for example. Are my feelings universal or am I just a bad daughter? Who should I protect and to what extent? Which details will interest readers and which only interest me?

The best part of the project is that I can switch between past and present – or recent past, anyway. When it becomes too painful to write about my mother’s ongoing deterioration I turn to a chapter about the more distant past. When piecing together my parents’ early years starts to drive me crazy I put that aside for a while and return to the present.

The chapter I’ve just finished covers from 1943 to 1953, which were the first ten years of my parents’ marriage, and include my birth. Now I’ve begun work on the next ten years. I wonder if they’ll be easier because I remember those years – or most of them anyway. Maybe not. I’ll soon find out.