Recently, I shared my story with Dementia UK. It was an opportunity to talk about my experience of caring for my dad while raising my own young family, and the particular pressures of being part of what is often called the sandwich generation.
You can read the full story here.
The process of putting it together turned out to be more interesting than I’d expected.
When Dementia UK asked me to confirm certain details, such as when my dad was diagnosed and how long he spent in hospital, I realised I couldn’t remember them very clearly. I had to go back through old WhatsApp messages to piece together the timeline.
It was strange to discover how much I had forgotten, or perhaps how little I’d ever properly taken in. Those years are a blur. My children were young, life was busy, and there was always something else to think about. My dad’s illness was unfolding alongside everything else, and perhaps I never really stopped to consider what was happening.
I sometimes wonder whether I’ve deliberately put some of it to one side. Or whether this is simply what happens when you live through something difficult while carrying on with the rest of your life. I don’t really know.
There was something else about the process that I hadn’t anticipated. I was asked to provide photographs of myself and my dad, and suddenly something I had been writing about quite privately was going to be shared much more widely.
I’ve got used to writing about dementia, but usually from behind the relative anonymity of this blog. Sharing photographs felt different. It made me think about my own privacy, but more particularly about my dad’s.
There are questions of consent that I find difficult to resolve. How much of someone else’s story are you entitled to tell, particularly when that person has dementia and is no longer able to participate in the conversation in the way they once could? What does it mean to share photographs, memories and details about someone who might not have chosen to make them public?
I don’t want to violate my dad’s privacy. I try to be careful about the details I share, conscious that his life is not mine alone to narrate.
And yet, I also find myself arguing for the opposite. I believe we need to talk more openly about dementia. So much of the experience takes place behind closed doors, and the silence can leave families feeling isolated. I started this blog partly because I wanted to write about something that is so often left unsaid.
It was interesting to realise that, despite all this, I’m still quite a private person. I can believe in the importance of sharing stories and still feel uncomfortable when it’s my own story being told.
I also think about the person my dad was before dementia. He was a journalist who wrote about all sorts of things, from public and political affairs to the more personal details of family life. He believed in telling stories and sharing ideas. He wasn’t someone who shied away from putting things into words.
I often think about how to honour that part of him in what I write. Perhaps telling this story is one way of doing so. I can’t know exactly what he would think about the photographs or the details I’ve shared, but I do know that he believed stories mattered.
I’ve also been thinking about Jon Snow and his decision to share his experience of dementia in his family. I haven’t yet watched his documentary yet, but I recognise how valuable it is when people are willing to make something so personal public. It helps bring dementia into conversations that might otherwise never happen.
Of course, there’s no single right way to approach this. Some people are happy to share very openly, while others understandably want to keep their family life private. Neither approach needs to be justified.
For me, the process of sharing my story with Dementia UK brought some of these contradictions into sharper focus. I want to talk about dementia, but I also want to protect my dad. I want to tell the truth about what has happened to our family, but I don’t necessarily want to share everything.
I’m not sure I’ve resolved any of these questions. Perhaps that’s part of telling the story, too.
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