Monday, 27 October 2014

Coming clean

When I first started writing this blog, I was clear I wanted to remain anonymous. Partly for myself - I was tentative, nervous even - I didn't know how it would go.
But the thing that worried me most was preserving my mother’s anonymity. 
According to Bette Davis, old age ain’t for sissies. That’s true. 
But dementia is incredibly difficult, even for the bravest of us. 

Dementia is undoubtedly a physical condition. Postmortem descriptions of those most severely affected sometimes identify areas of atrophy or tangles of plaque on the brain. But for those living with the disease, dementia manifests itself through its effect on mental capacities. 

Despite the fact that my mother has remained intelligent, articulate and insightful, she finds dementia to be not just debilitating but profoundly shameful as well.

It doesn’t matter how much I explain that it's not her fault, that it's the disease not her, that people as diverse as Iris Murdoch, Rita Hayworth and Margaret Thatcher have all been diagnosed with it, my mother still believes she’s failed.
Hence my determination to protect her privacy. 

The ethics of writing a blog that’s not just about a relationship, but also about how disability affects that relationship, is something that preoccupied me from the beginning.

A friend suggested some principles might help. So I thought hard about what I was trying to do and came up with a list:
  • nothing unkind, unfair or untrue
  • nothing identifying my mother or others in her life
  • everything about being a daughter, friend, advocate and part-time carer
  • everything about trying to do better at that and help others too
  • everything about what my mother would support and agree with, and
  • nothing that she would be embarrassed by, if she were her healthy, fully-functioning self

I tried to keep the principles in mind as I wrote. As a kind of peer review, I ran them past a few of my friends and several of Mum’s. They all told me it was perfectly fine. 

But that didn't stop the nagging feeling that people were telling me what I wanted to hear. 

As the blog has grown, the feeling hasn't gone away. Last week, after a sleepless night, I went online to search ‘ethics’ and ‘blogging’. Most of the results detailed the dilemma of protecting political sources from exposure and harm. More relevant to investigative journalists than me.

Then I stumbled upon Randy Cohen, writer and humourist. Between 1999 and 2011, Cohen wrote The Ethicist column for the New Yorker magazine, addressing reader’s queries about everyday ethical conundrums. I lost a good hour reading his take on the ethics of everything from a hospital patient demanding a white anaesthetist, to a hotel patron stealing from the minibar and sneaking in replacements.

According to Cohen, honesty, kindness, compassion, generosity and fairness are the principles that should apply in every situation. He uses these to problem solve, examining the immediate circumstances of each person involved and weighing up the pros and cons.

Five principles - honesty, kindness, compassion, generosity and fairness. I reckon I had four of them covered. But honesty? Not so much.

I realised what had been bugging me. I hadn’t been honest with Mum. She knew I was writing but when she queried me about the content, I was fudging it. And I hadn’t asked her permission.
I became convinced that before I wrote any more, I needed to do both those things. 

So that afternoon, I did it. I told her I had something I wanted to ask her. I explained what a blog was - a journal on the internet - and I said that I had been writing anonymously about being the daughter and advocate of a parent who’s living in a rest home.

About me and her. 

“How wonderful,” said Mum before I could even finish explaining. 
“It’s anonymous,” I repeated, more quickly than I meant to. Then I explained about ‘Middlename Jane’ and ‘Mum’.
“I told you, I have absolutely no problem with that,” said Mum and gave me a very stern look. 

I hugged her and she hugged me. Then I showed her the op shop post and the one about Edward Bear. 
“That’s what I say!” said Mum, about the importance of a customer chair in shops. “That’s exactly what he tells me!” she said about Edward Bear.

Mum put the printouts aside. 
“I think it’s just great,” she said. “It’s about the ordinary things. People don't know about this till it happens to them. When people find out you have dementia, they think you're barmy in the crumpet.”

Barmy in the crumpet!

“You mustn't stop doing it,” said Mum when we’d both stopped laughing. “You have to keep telling the truth, even though you know I’m reading it.” 
“I have been,” I said. “What do you mean?”

“The real truth,” said Mum. “About the hard things. About dementia.”


  1. What a beautiful post. Thank you for writing this blog and being so honest in the writing about how difficult it can be.

    1. Thanks! Just following my mother's advice - to talk about the hard things as well as the good stuff.