Author of Sunday Times bestseller Somebody I Used to Know, Wendy Mitchell is passionate about exploring the experience of living with dementia through her writing. We talked to her about how her own dementia has changed her sense of self, the power of peer support and why she’s up for a new challenge…
*When Wendy Mitchell developed early onset Alzheimer’s aged 58 her diagnosis prompted her to begin writing her ground-breaking blog Which Me am I Today?- a candid online journey that has inspired many living with dementia and their families. In 2018 her Sunday Times bestseller Somebody I Used to Know was published – a compelling and candid account of living with dementia. We talked to Wendy about how dementia has changed her, the power of peer support and why she’s up for a new challenge…*
Your book title is incredibly evocative, as is that of your blog – “Which Me Am I Today?”. How has dementia reshaped your sense of self?
The pre-diagnosis me was a very private person. I wasn’t shy, I was simply private and preferred my own company. My daughters and I laugh about it now, saying dementia has turned me into this gregarious alien, which we all like. Whereas my old self could get angry at injustice, dementia has stripped many emotions away from me. I am no longer capable of feeling anger. I have three states – happy, sad or content. So something that would once have made me angry now simply makes me sad. But I never dwell on losses. I have no control over what dementia strips away from me so I make the most of what I do have.
Is it important to step outside of well-worn narratives when talking about dementia? Do you need to be bold when raising awareness?
For so long the word ‘dementia’ has been feared and when people hear the word, they immediately skip to the end stages. But it has to have a beginning and a middle – with so much life still to be lived. Yes, of course it’s a bummer of a diagnosis, but if thought of as the start of a different life, a life of adapting, then that can help people to see the diagnosis differently. For this to happen though clinicians must change their language from “there’s nothing I can do” to “there might be nothing I can do, but there’s still lots you CAN still do”.
Dementia has brought me opportunities I would never have had if I hadn’t been diagnosed. It has enabled me to meet people I would never have met in any other circumstances, but for dementia bringing us together. I’m lucky, I’m a ‘glass half full’ type of person and try and turn negatives into positives because that’s what helps me cope with the bad days. Peer support should never be underestimated. When you fill a room with people with dementia, there is no judgement, no criticism – just a safe environment where we can just be ourselves.
However, that’s not undermining the need of carers. When I got the diagnosis so did my daughters. We all needed advice and support that was sadly lacking. Our lives run parallel, never to meet, but our needs are equally important.
Each dementia story is a personal one – how can one person’s story, as in your book, help to illuminate those of thousands of others living with their own dementia?
There is a saying “when you’ve met one person with dementia, you’ve simply met one person with dementia”. I wrote the book for me to hold and give to my daughters. I never thought others would want to read my story, but thankfully they have. I know from the thousands of emails I’ve received that it’s helped people understand those closest to them.
What works for me may not work for others but it’s opened their eyes to try and understand the situation they’re in, instead of being frustrated by it. It’s also helped other people being diagnosed see that it isn’t the end. As one woman wrote to me, “I’ve been very depressed as I’m going through the diagnosis process. After reading your book, I now think ‘bring it on’. I’m no longer afraid…”
What in your experience are the key elements to ‘living well with dementia’ – and is this term contentious for you?
I have a problem with the phrase ‘living well’. It was fine when there was nothing else but language and phrases need to be revisited every now and then. I’ve received so many emails and comments from other people living with dementia saying how they could never live like I do, so they can’t ‘live well’. This makes them feel inadequate and has the opposite effect on them. So now I tend to use, ‘living the best your circumstances allow’ as this is a goal that everyone can achieve.
I’m lucky; I’m resilient, I’m confident, I’m a ‘glass half full’ person. I also live alone, which has had a huge impact on how I cope. I have to find a way when dementia throws me a challenge. I often feel sad for those in a couple as the partner takes over and wraps them up in cotton wool, for the kindest of reasons. But that’s the worst thing you can do for us. If we don’t do something day after day, no matter how long it takes, we forget and then you’re stuck with having to do that task for us forever.
My daughters started to do lots of things for me in the beginning, like putting on my coat…but I could still put on my own coat. I told them that if they continued, they’d soon have to come to my house every time I needed to put on my coat and they stopped immediately – ha! Sometimes it’s simply a matter of helping us find new ways of doing things or just giving us more time.
How have you maintained your sense of self so effectively while accommodating the cognitive challenge of dementia?
I may not remember the detail of a day but I remember how people left me feeling. Emotions are heightened with dementia. I am also lucky as I write my daily blog. My blog is my memory otherwise I’d forget all the wonderful things I’ve done. I can type as though dementia never entered my world, as that part of my brain hasn’t been affected. I can type words quicker than I can think and speak them, and I type my blogs in real time – before, during and immediately after the event. Photos are also very important to me now. My blog might be my memory but that others choose to read it is very humbling.
You have written so much around dementia – is there a question you’ve yet to be asked? Or – indeed – would like to be asked?
Ha! Well at the moment I’m looking for my next adventure and my next challenge and people are often averse to us taking risks, so maybe someone could come up with a challenge for me and ask if I’d like to do it? I’ve just seen a poster for a tandem paraglide so maybe that’s something to think about…who knows…
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