Wendy Mitchell was only 58 when she was diagnosed with young-onset dementia.
She hopes her new book What I Wish People Knew About Dementia will help people understand and be less fearful of the condition.
Wendy Mitchell Photo: elder.org
"When people hear that word 'dementia' they skip immediately to the end stages and they forget there's a beginning and a middle and so much life left to live [after a diagnosis]" Wendy tells Kim Hill.
She received her own diagnosis eight years ago.
"Yes, it is a bummer of a diagnosis - there's no getting away from it. But if only [those] that were giving the diagnosis would turn the tables round and instead of concentrating on what they cant do for us, they concentrated on what we still can do, what life we still have left, that would give us hope for the future rather than a despair of believing it to be the end."
Dementia has brought Wendy many challenges - she has lost the sense of taste, smells and sounds can be challenging and, like many people with the condition, she is disturbed by patterns that can seem animated and the colour black.
To Wendy's eyes, a switched-off TV screen looks like a black hole and a black mat on the floor resembles a hole she may fall down. When her adult daughters wear black clothes "all I see are heads walking round the room because there's a void where the black exists".
Photo: Supplied
She has now learnt to question whether something is real or just a trick dementia is playing on her brain.
"In the moment I stop and think 'can this be real or not?' ... I've learnt not to panic because if you panic everything gets ten times worse."
When something looks "wrong in some way", Wendy sometimes uses a '30-minute rule' and returns to check on it again in half an hour.
She also sometimes takes a photograph to help differentiate between reality and the "tricks" of dementia.
But along with playing tricks on her perceptions, dementia has also delivered "gifts", Wendy says, including a "vision" of her dead father which brought solace.
"[That experience] could be very frightening but if you embrace that moment, as I did, and I was just in the presence of my father for a few seconds, I saw it as a wonderful moment rather than something to be feared."
If a person doesn't understand the challenges of dementia, they're not able to give good care to someone living with it, Wendy says.
Her biggest piece of advice to carers and loved ones is 'Live in our moment because we can't live in yours'.
"If [a person with dementia] is saying 'I can smell fire over there… the place is going to burn down', the person with them will look round and not see fire, but by telling us, 'no, no, you're being stupid, there's no fire' it just makes us more anxious because its the reality for us that we can smell fire. So live in our moment and say 'oh, I'll go and have a look' then come back with reassurance. Live in our world because we can't live in yours.'
Wendy hopes What I Wish People Knew About Dementia will help show the condition is about much more than memory loss.
"If you only look at that small part of someone - memory loss - you're missing out on supporting them in so many ways and making their life so much better and in return, your life so much better."
Wendy says that although she's always been "glass half-full" in outlook, her personality has been changed for the better by dementia - she is now more open and more relaxed with herself.
"I was an immensely private person before dementia and my girls now say that I've been overtaken by this gregarious alien who will hug anybody and talk to anybody."
In her local village, she is known as 'The Camera Lady' as she walks around photographing the countryside every day.
"[People in the village] saw my talent first before they realised I had dementia, so they saw dementia as secondary and in a whole new light.'"
A sense of community support really helps people with dementia feel secure, Wendy says.
"[My community] make me feel safe enough to go walking wherever I want to. If I get disorientated, I can just ask the next smiley face coming towards me and say I'm having a bit of a bad day. Would you point me in the direction of my home, please?'"
A gallery of Wendy's photographs:
Before dementia, Wendy was a "highly organised" person, and she sometimes checks in with this former self.
"When dementia is really giving me a hard time, I'll ask my younger self what would you do? Because I know how strong she was, I know how organised she was, and I know how resilient she was. And that just helps me to cope with the bad moments."
She has also learnt to live at a much slower pace.
"When I was working I was as guilty as anybody of wishing for the weekend, wishing for the next holiday, wishing for the end of the shift, but dementia has taught me to appreciate now and to actually stop and look around… you see far more beauty than if you just dash around here and there. You're missing some magic moments."
While she used to love cooking, Wendy is no longer capable of the multi-tasking it requires.
Yet recently, seeing local eggs for sale from hens she knew, she craved "the experience of boiling an egg once more".
The removal of all potential distractions took a lot of planning, Wendy says.
"I had to make sure that I didn't leave the kitchen, I didn't get distracted, and when I succeeded, that egg sandwich tasted divine."
For a persion with dementia "there's nothing more comforting than to be sat with your eyes closed, doing nothing", Wendy says.
But her advice to others with the condition is to keep doing whatever you enjoy doing, for the sake of your brain.
She also tells people to simply enjoy the moment.
"The only thing any of us have for certain is this moment. No one knows what's round the corner ... If the moment is a bad one, the next one might be better."
Wendy likes to plan regular adventures and is hoping her next big one might be wing-walking.
"Standing on the top of an aeroplane and going in the sky and turning upside down - that sounds wonderful."
Wendy Mitchell blogs at Which Me Am I Today? and previously wrote the celebrated 2018 memoir Somebody I Used to Know.
