The Writer’s Rights And Responsibilities

‘Nothing about me without me’, is the demand from thought-leaders in the dementia community. They have a point. What right do I have to lay open Lena’s disabilities to the world, when she has no say in the matter?

How is she feeling?

See that face? Serene, knowing, self-assured. Lena gets the joke. Perhaps we should leave it at that. Like the millions of selfies that’ll be posted today, my photo’s a good-news story. We’re all doing just fine.

Except that then I go and spoil it all by telling you that Lena hasn’t got the faintest idea where she is or who these people are that we’ve come to visit today. She recognises the face behind the camera, but couldn’t tell you it’s her husband. She hardly remembers her own name.

What right do I have to tell you all this? Just because we’ve been married so long, it doesn’t mean that I own Lena’s story. Isn’t this just another example of something we’ve been hearing a lot about recently – coercive male behaviour? Taking advantage of Lena’s inability to frame her own story to make her part of mine?

As a writer, I’ve often taken people I know in real life as the basis for my characters. But then, the story takes over and the characters take on a life of their own. It becomes a fiction. That’s fine. It’s what writers do. But Lena’s story isn’t fiction.

It’s something that’s troubled me ever since Lena was diagnosed. I wrote about it in one of my first stories – Coming Out On Alzheimers. By speaking out was I betraying her trust? But I still wrote the story anyway, and then gradually, as I wrote more, I put my feelings of guilt behind me.

But this week, for the first time in a while, I’ve been questioning my motivations again. First, when talking to Amor Fati, whose beautiful story about the dementia journey she’s sharing with her husband, He Is My Teacher, I featured on the site. Before Amor gave me the final OK to publish, she told me she’d checked the story with James, and he liked it. So the person with dementia had a say. Lena doesn’t. When I sometimes tell her what I’m writing, she has no idea what I’m talking about.

And then, in my Carer Tips newsletter I was writing about clothing issues in the later stages of dementia, and included some of the most intimate details of Lena’s difficulties. Was I right to do so, or was this an invasion of her privacy?

I felt better when I found an email from Tina, one of Lena’s long-time friends, waiting for me this morning. She told me she was enjoying my posts – and that she read them out loud to her partner whilst they sat in bed with their morning cuppa. (Feedback like that is wonderful: suddenly I’m not just pushing out words into the ether any more – our stories have become part of real people’s real lives.) But she also told me that she was finding the Carer Tips in the newsletter useful …

"So far we haven’t had to deal with dementia but we find your posts very helpful in dealing with our parents who are just elderly and a bit stiff, deaf and easily frustrated these days, and in need of that extra pair of hands now and then. Yes, empathy is the key."

The old Lena would have been delighted to find that her story had helped others to live better.

Then there was the Facebook message from Lisa. Lisa’s mother has been Lena’s best friend since schooldays. She sent me an attachment – Keep On Running, the Spencer Davis Group song from the ’60s …

"I was with Mum today and we heard this song on the radio. She thinks it was one of their favourites when they went to Berlin together."

I blasted it out on the speakers. A memory? Not exactly. But it triggered something. A few bars in, and Lena was dancing along to the music. Dancing always was her first love, still is.

By telling her story, I’m reminding Lena’s friends that she’s still very much with us, no matter how much dementia tries to close her off. And while she may not be able to take in their words, their sharing of memories and messages of support still, in a way, get through. They strengthen us – me and the family; and Lena’s wellbeing is in our hands.

So have I betrayed Lena by being so open? I hope not. I hope that friends new and old will see through my stories a woman who’s been dealt a terrible and entirely undeserved blow, but who nevertheless meets each and every challenge cheerfully, and still lights up our lives.

I’m pretty sure that no partners have been hurt in the telling of this story … but all errors are my own. 

Our story – yours to share

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We have an army of dementia carers all fighting their battles alone. That's no way to win a war.

Alan Miles

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4 thoughts on “The Writer’s Rights And Responsibilities”

  1. You’re not betraying her trust but enabling others to understand. I’m sure Lena would agree if she could. I wish there had been your writing 10 years ago when my Mum was diagnosed. It would have helped so much over the next 5 years.

    • Thanks, Jilly – yes, I’m sure Lena would have agreed too. But it doesn’t do any harm to question my own motives from time to time, and to remind myself that I can’t speak for those with dementia. They know how it really feels and what they really want better than I can. My views are always coloured by the carer’s perspective.

      I’m curious about what you might have done differently, with perfect hindsight? Is there anything we could learn from your experience?

  2. I second Jill’s post. Reading your posts, I have come to know Lena as a vivacious, fun loving, outgoing and a friend to everybody. I believe she would be thrilled by the work you do and how you introduce her to the world. To us carers you are doing a great service. I learned so much from you already and look forward integrating your ideas in my daily interaction with my husband. Much thanks and good wishes. Ruth


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