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Wendy Mitchell as told to Erica Vowles for Life Matters

I've lived with dementia for seven years. I'd like more people to understand what it's really like

Wendy Mitchell says that too often people skip to thinking about the end stages when they hear the word 'dementia'.  (Supplied)

I knew something was wrong when, at work one day, I came out of my office and didn't know where I was.

I didn't know who all the voices I could hear belonged to or the names of my colleagues in front of me.

I was only 58 and dementia – the diagnosis I received – had never entered my vocabulary.

In the seven years since, I've learnt that it's about so much more than memory.

I want people to understand that.

I've also learnt that people often immediately skip to the end stages when they hear the word dementia.

But there is a beginning and a middle, and so much life still to be had – and there's also a lot that can help along the way.

Life doesn't stop with dementia. Wendy went skydiving for the first time at 63, five years after her diagnosis. (Supplied)

Changing the colour of my plate

Dementia has affected my relationship with food. It is simply fuel now, because I don't feel hunger anymore. I've lost that social joy of sharing food with people. When you're not hungry, it's very hard to eat. So I tell myself, if I don't eat, I won't be able to go for my beloved walks.

Other problems with food I've learnt to overcome – like the wrong coloured plates.

Colour and contrast is so important for people with dementia because similar colours blend into one another. I just can't see white rice on a white plate – so I changed from a white to a yellow plate.

When using a knife and fork became a hurdle, because the complexity of doing different things with my left and right hand, I changed to a fork and spoon. Then I could shuffle everything onto my spoon with my fork.

Then I stopped using a plate altogether when everything was getting shuffled off the plate and I changed to a bowl.

My mantra is, there's always a way.

Saying no to unhelpful kind acts

The day I was diagnosed, my daughter was preparing to move out of my house.

She offered to stay on but I said no. For the kindest of reasons, I knew she'd have started wrapping me in cotton wool, and that's the worst thing you can do for people with dementia.

At a certain point, both my daughters started putting on my coat for me, and I soon realised that when I was at home alone, I was forgetting how to put on my coat.

I told them that if they continued to put on my coat, I'd forget how to do it. Then every single time I wanted to go out, they'd have to come to my house to put on my coat.

That would have stripped away my independence and caused them no end of hassle.

When people start doing things for us, they're just being kind – but it can be counterproductive for both parties.

Technology makes a big difference

I used to be a technophobe but technology has taken on a huge meaning in my life now. And never think you can't learn new things when you have dementia.

A wonderful smart speaker is now a big part of my life. She can turn on the lights upstairs when I'm downstairs before I even go up, which has helped me to stop falling on the stairs.

Wendy has written two books about her experience with dementia. (Supplied)

I can ask her to switch the kettle on downstairs so that I don't forget why I've gone downstairs the minute I get down there. And she can provide me with reminders all day long.

But an extra bonus is, because I live alone, I can talk to her and, this may sound silly but at night-time when I go to bed, I say "Goodnight" to her, and she will respond, "Talk to you tomorrow".

A place to go when anxiety takes over

I have a memory room I go into when I'm feeling anxious that dementia is taking over.

It's a room covered in photos of places and people that I love and that I've always loved.

As soon as I sit in my memory room, I might not remember who some of the people are or where some of the places are, but I know that they're special.

Because emotions never leave us.

The support of my community

By pure coincidence, I bought a camera before the COVID-19 lockdown in 2020. I decided my new routine would be to walk around my village in the UK every day and take photographs of the wonderful world around me.

Suddenly, people started calling me "the camera lady". They didn't know that I had dementia, so they saw my talent first before discovering that I had dementia, which became a secondary thing.

Now, many of the people in my village know I have dementia and they support me beyond belief.

They don't fear talking to people with dementia, as many do. They just embrace me in the community. No one should be alone with dementia.

We don't know how long before dementia really takes hold. We don't know if tomorrow will be a good day or a bad day.

But dementia has taught me the importance of embracing the time I have.

My ethos is to enjoy the joyful moments of today, because this moment is all any of us is guaranteed in life.

National Dementia Helpline is a free service for anyone in need: 1800 100 500 weekdays from 8am to 8pm.

Wendy Mitchell's latest book is What I Wish People Knew About Dementia.

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