Tag Archives: dementia

Acceptance

The Rosie Project, by Graeme Simsion, is a delightful romp with the endearingly quirky fictional professor of genetics, Don Tillman. At the age of 39 and never having been on a second date, Don sets out with a 16-page questionnaire to find the perfect wife. Perfect for him, that is. He is blissfully unaware that his criteria eliminate just about every woman he’s ever likely to meet.

Although it is never stated that Don has Asperger’s, he quite clearly has. He may have little insight into the thoughts and feelings of others, let alone the minefield of social interaction, but he is acutely aware that his brain is wired differently.

The lack of a label works brilliantly by keeping the focus on Don who comes across as a real character, not a list of odd behaviours. For me, The Rosie Project isn’t about someone with Asperger’s; rather, it is about acceptance and is the story of someone who doesn’t quite fit in and his search for a relationship.

I had the pleasure of hearing Graeme Simision talk about The Rosie Project in Wellington last month. He said that he didn’t research Asperger’s and didn’t set out to invent an ‘Asperger’s’ character. This got me thinking about dementia and how people with dementia are portrayed in fiction and it seemed to me that concentrating on the character, rather than the condition, as Simsion did with Asperger’s, is the way to go.

Graeme Simsion is such an engaging speaker and his reading from the book was so entertaining that I immediately rushed off to buy the book. To my surprise, The Rosie Project has a minor character with Alzheimer’s. Daphne is an elderly neighbour of Don’s and her life revolves around visiting her husband who is in a nursing home with Alzheimer’s. Don befriends Daphne and tells her a great deal about genetics as he accompanies her when she visits her husband in his nursing home. After her husband dies, Daphne develops Alzheimer’s and Don visits her regularly when she in turn goes into the nursing home. He continues his visits long after she no longer recognises him. He may be awkward and perplexed by the nuances of social interaction, but he accepts Daphne and is a friend to her when no one else is.

The Daphne story is incidental to the book and I’ve never seen a reviewer comment on it, but I think it’s a lovely complement to Don Tillman’s story.

Wow! People are reading my book

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It’s great news that people are reading my book. How do I know this? Partly because I keep a close watch on which libraries hold the book. I also look at whether any copies are on issue, and have been delighted to see that lots are on issue throughout the country. So, word must be getting out there.

I see the book on the shelves when I go into a bookshop, but what I don’t know is how many people are actually buying it.

Another way I know that my book is being read is from feedback from people who have bought it.

I’ve discovered that someone will buy the book and then hand it on to another person, or sometimes two or three other people. Great! One of the reasons I opted for a print book, rather than an ebook, was that I thought readers might well want to lend their book to other people or pass it on. So, it seems I was right on that score.

When I wrote the book I had a lot of things I wanted to say about dementia and it was very, very important to me to get the book into readers’ hands. But there is a little sting in the tail—I have discovered that readership does not equal sales.

Although sales are ticking along nicely, it’s just as well I don’t define success purely in terms of sales.

Stories and more stories

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Last week I had the pleasure of speaking to a lovely, receptive audience at a Grey Power meeting. I started by talking about why I wrote What Are You Doing Here? Reflections on Dementia, but spent most of the time discussing why it’s important to talk about dementia and why personal stories are so important.

There are plenty of very good caregiving handbooks or guides around, and they are invaluable for people in the middle of day-to-day coping and caring. But I wanted to reach a wider audience of people who probably know someone with dementia or a caregiver, but don’t necessarily have those daily caregiving demands themselves. When I first started writing, people told me that they weren’t so interested in caring tips—they wanted to read personal stories.

Here are just a few of the things that make personal stories powerful and engaging:

People connect with stories
Stories are a way of sharing experience and can illuminate a subject in a way not otherwise possible
It’s reassuring and validating to read of others with similar experiences
Stories ‘fill in the gaps’ and can reveal what not obvious to outsiders
Stories come from the heart and touch our hearts

Stories invite other stories. One person tells their story and another adds theirs. When I invited questions at the end of my presentation, one woman stood and told a little of how she and her husband coped with dementia. I had spoken about the importance of concentrating on what a person can still do, rather than what they can’t. The woman illustrated this point beautifully by telling us how her husband was still able to add figures and she would give him lists of figures, which kept him happily occupied doing something that he could do well.

Obviously this was just a glimpse of a much larger story, but it was important for many reasons. I’m sure, for example, it’s a revelation for many that a person with dementia is often capable of intellectually demanding tasks.

It’s so rewarding when people connect with stories and a talk becomes a conversation.

The first review of ‘What Are you Doing Here?’

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How exciting! A five-star review of What Are You Doing Here? Reflections on Dementia on Goodreads.

I wanted to add a widget to this blog showing Goodreads reviews, but I can’t seem to do it on a WordPress blog.

Instead, I’ll quote the final paragraph of the review here:

‘I can’t help but feel the world would be a better place if ‘What Are You Doing Here?’ was recommended reading for anybody either working with dementia sufferers or responsible for making policies that affect their lives.’

Of course, I agree! There is a lot in the book about my mother’s experiences in residential care and in hospital—some of it good, some of it not. I discovered how easily people with dementia can fall through the cracks. They get overlooked, and sometimes ignored. Assumptions are made, reactions to confusion and stress are labelled as challenging behaviour and no one has the time to listen and reassure. There are some amazing people who work in dementia care and treat the people they care for as people, but we need more of them. And we need policymakers who realise there are people behind the statistics.

My very own book launch

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I love going to book launches. I’ve been to a few over the last few years—mostly local authors—but on Sunday it was my turn when I launched What Are You Doing Here? Reflections on Dementia. As a self-published author, this was very much a do-it-yourself affair—a morning of making sandwiches and savouries and chilling the wine, followed by a relaxed gathering on a perfect spring day.

One of the nicest things about the day was that some of the people I interviewed for the book were able to attend. They have all been involved in caring for people with dementia, and were unstinting in their time and willingness to talk to me when I was researching the book. It was a pleasure to see them again, especially as September is World Alzheimer’s Month and the theme is ‘A Journey of Care’.

I made a healthy number of sales and was delighted when the next day I made almost as many sales again. It’s starting to feel as if I’m gaining a bit of momentum.