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Dementia Awareness Week: 'It's not the end; it's the start of a new beginning'

Dementia Awareness Week: 'It's not the end; it's the start of a new beginning'
19 May 2017

Wendy Mitchell is a Patient Research Ambassador for Humber NHS Foundation Trust and a national ‘Join Dementia Research’ champion. 

To mark Dementia Awareness Week (14-20 May), she explains what it feels like to live with the disease and offers advice to the newly diagnosed and those who believe they may have symptoms. 

“I was renowned for a brilliant memory but it started to let me down – badly. 

“I’d forget the simplest of words in meetings. 

“The worst thing happened when I came out of my office one day and didn’t know who all the voices around belonged to or where I was.” 

Wendy Mitchell recalls her early experience of mixed dementia - vascular and Alzheimer’s - the degenerative brain condition she was diagnosed with on 31 July, 2014, aged 58. 

“I didn’t fit the profile of someone who should have dementia, which shows it doesn’t discriminate against sex, gender, wealth or intelligence. 

“I don’t smoke, I don’t drink and I had a healthy diet. I also used to run every other day. 

“But dementia still got me.” 

Wendy was born in Pontefract, West Yorkshire, where she lived with her parents and brother until she was 18. 

She moved around the country and eventually settled in Milton Keynes, where she remained for 30 years. 

It was in this Buckinghamshire new town that Wendy began her 20-year career in the NHS. 

She worked in supervisory roles before spending the final five years at York Hospital and Leeds Teaching Hospital training sisters and matrons in staff rostering. 

Wendy now lives alone in a charming East Riding village, her two “wonderful” daughters close by. 

Three years have passed since her diagnosis and she’s as busy, practical and organised as ever. 

What does having dementia feel like? 

“Many people have asked me,” says Wendy. “Every day is different. For me, most days are fair to middling but on bad days it’s like a fog descends on the brain and confusion reigns from the minute I wake up. 

“During these times of confusion I have to work really hard at remembering the day of the week and what I’m supposed to be doing. 

“This feeling I liken to the process of untangling a necklace. 

“If you drop a fine necklace it can become tangled and knotted. If you’re feeling calm you can sit patiently and one-by-one untangle the knots and work out the reality of the day. 

“But if I’m having a bad day it’s like when you’re feeling impatient and it gets even more tangled and knotted and I can’t put it right. 

“I find it impossible to work out what day it is and what I’m supposed to be doing,” she continues. “On these occasions it’s hard to make sense of the world around. 

“My way of dealing with these moments is to tell myself it’s not me, it’s the dementia, the fog will eventually clear so I’ll just sit quietly and wait. 

“It’s a bit like a game of chess. You sit quietly, waiting for your opponent to make their move and then try and outmanoeuvre them.” 

Practical, organised, and often with a cuppa in hand, Wendy has many coping strategies. 

“I have a calendar for the month ahead, a weekly one on my fridge and alarms going off on my phone all day telling me it’s time to do things,” she says. 

“Dementia is about so much more than memory, though many of our senses can be affected as well. 

“My hearing is affected, so loud noises hurt my ears. I don’t ‘see’ my kitchen cupboard or wardrobe doors as they blend into the wall, so I have taken photos of the contents to remind me there’s something behind the doors. 

“When I’m travelling I have photos and instructions galore to allow me to continue travelling alone.” 

Given Wendy lives well with dementia, it is no surprise she offers positive advice for anyone newly diagnosed or who believes they may have symptoms. 

“I’d advise them not to think of it as the end,” she says. “It’s the start of a new beginning which involves still living your life to the full but just differently through adapting to the challenges dementia throws at you. 

“I’d seek out others with dementia who may be experiencing the same symptoms and can help.” 

Wendy also advises them to use Dementia Awareness Week to learn more about dementia and to “not be afraid of talking about it”. 

“Think of how you would like to be treated if you were unfortunate enough to receive a diagnosis of dementia – with kindness, understanding and as an individual,” she says. 

Wendy is very passionate about dementia research, arguing it is “the only way things will improve” because the best ways of living with the condition or caring for someone with it are, as yet, unknown. 

“Taking part in research gives me back a feeling of value that dementia strips away from me, and hopefully I’m contributing to a better future for my daughters,” she says. 

“We have to have more than hoping and wishing we don’t get dementia, and this can only be achieved through research.” 

The hope offered by this research is an effective counterweight to the knowledge that for now, at least, there remains no cure. 

“The ending is never going to be a happy one; but why dwell on something over which I have no control?” says Wendy. “That’s why I live for today. 

“Being negative serves no purpose. It’s a waste of valuable enjoyment time – and time is something that isn’t on our side.” 

END 

Further information is available from the National Dementia Helpline on 0300 222 1122 and the Join Dementia Research website at https://www.joindementiaresearch.nihr.ac.uk/

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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