"What I've learned from being diagnosed with dementia at 58"

I wish I’d known 10 years ago that receiving my dementia diagnosis wasn’t “the end” because for me, in many ways, it’s been a beginning. I don’t know if it’s science or human nature, but I feel that when one part of the brain fails you, another part comes to life – at least, that's how it’s been for me.

I’ve discovered a creative part of myself that went untapped before. Things I’d never tried – painting and writing poetry – are now a firm part of my life and without my diagnosis, I’d never have discovered how much I enjoy them.

That’s why, when I heard about Fiona Phillips and her shock and upset at being diagnosed with Alzheimer’s, I could fully understand it – I've been in her shoes – but I also wanted her to know that it doesn’t have to feel like an ending.

Looking back

I clearly remember the day that I knew something wasn’t right with my memory. I’d set off from my home in southeast London to visit my friend, who lived in north London. It was a route I’d been driving for more than 20 years but suddenly, while driving through Catford, I felt completely lost.

In a panic, I thought to myself: “What’s wrong with you?” I pulled over and sat in the driver’s seat, trying to gather my thoughts, but I felt utterly confused. I just couldn’t understand what was happening. After about an hour, I calmed down, and the route came back to me. But the whole episode really shook me.

For a couple of years, I’d been struggling at work. I was a social worker, specialising in fostering, and sometimes I’d go to people’s homes to interview them and then leave, having forgotten most of what they’d said. 

There were other signs too. I kept locking myself out and leaving the gas hob on, and sometimes I’d forget my daughter’s friends – even though they’d been coming round to the house for years. But despite all of those symptoms being there, I hadn’t pieced them together and worked out that it was all linked to my memory. When I eventually visited the GP, I was referred for a brain scan and the results came back showing that I had vascular dementia. I was 58.

Shock and loss

The diagnosis came as a huge shock. My initial reaction was: “How quickly is my brain going to die?” Knowing what I know now – that my life would continue very happily in many ways – I think that sounds a bit hysterical. But I’d just been told that because of the narrowing of the arteries in my brain, blood wasn’t flowing, and certain parts of my brain had “died”.

It took a while for the news to fully sink in. And while I was shocked, I never felt angry or “poor me”. In some ways, it was a relief to finally know that I wasn’t going mad – that there was a medical condition behind the headaches, brain fog and forgetfulness.

I can honestly say that receiving my diagnosis has brought huge positives too

I can understand why Fiona Phillips says she feared being judged by others, because I felt the same. Sometimes, I tell people I have dementia and their expression instantly changes – they look afraid. I think that’s because dementia and Alzheimer’s can change some people’s characters and make them unpredictable – but I hope that by being open and sharing my story, I can help change those attitudes.

The biggest impact was on my working life. I didn’t feel I could continue in my role, and that had huge financial consequences. I had to sell my house and downsize to a one-bedroom flat. I’d thoroughly enjoyed my career, so giving up the status, purpose and social life that went with it was hard. But I can honestly say that receiving my diagnosis has brought huge positives too.

I had a difficult life in many ways; I was taken into care at the age of two weeks with my twin sister and remained in the care system until I left at 15. Ever since then, I’d worked at full pelt to provide a good life for myself and later for my daughter, but I had a lot to process in terms of my upbringing. So, while giving up work was a huge loss it also gave me space, for the first time, to slow down, reflect, and pursue other interests.

A new beginning

Fortunately, in London, there are lots of services that bring people together who, like me, have dementia and Alzheimer’s. I threw myself into different activities, including exercise classes, walking, painting and poetry, and discovered this huge creative streak. It made me wonder how my life might have looked if I’d had different opportunities.

I go to an arts group run by Age Exchange in south London, and together we’ve put on exhibitions of our paintings and poems at the National Maritime Museum in Greenwich. It’s brought me together with so many people from all walks of life – teachers, authors, mathematicians – who are living with the same condition. We understand one another, and that means a lot.

It’s not easy to look into the future, as I don’t know what to expect or when I might decline. In one of my groups, we’ve lost four of our members and that’s been very hard. But I stay very active and I have two grandchildren – I'm committed to being here for them for as long as possible.

If anyone reads this and recognises some of the symptoms in themselves, then I’d urge them to seek help and go to their GP. Don’t let fear put you off – I'm proof that it’s very possible to live a happy life with dementia. We are so much more than our memories.

The Alzheimer’s Society offers support to everyone affected by dementia, through their website alzheimers.org.uk and Dementia Support Line on 0333 150 3456.