A life lived in between

If tea drinking was a profession, Wendy Mitchell would have gone straight to the top. Throughout her life, good news has always been toasted with a cuppa, problems have traditionally been accompanied by the sound of a boiling kettle and, for her, the day only properly starts when the first brew has been drunk.

“Of course no one would want to be diagnosed with dementia, but it has brought me opportunities.”

It is a cruel irony then that the disease that has already robbed Mitchell of so much has also recently taken away her number one comfort.

“I never felt lonely with a cup of tea for company,” says the 65 year old, who seven years ago was diagnosed with early onset dementia.

“I suppose there’s an emotional connection with all those cuppas shared with friends either in celebration or loss over the years.

“I called it a hug in a mug, but not so long ago it started tasting odd. At first I thought it was the milk – gradually though I realised it was the dementia.

“When people think of this disease, they think about the memory loss, they think about the confusion, but it takes so much else besides.”

When we speak, Mitchell is still cradling a cup of tea. It no longer tastes of anything at all, but she still gets comfort from the warmth of the mug and, like much else about her approach to dementia, it is also a sign of her continued defiance.

Mitchell has never downplayed the shock that followed her diagnosis, which came just as she had begun entertaining the idea of retirement from her NHS job, and she admits the impact on her two daughters, Sarah and Gemma, has been immeasurable. However, from day one her determination not to succumb to the stereotypes of dementia hasn’t wavered.

Much of that stems from Mitchell’s practical, can-do attitude which she learnt as a single mother.

As the dementia intruded, she stripped her home of complicated gadgets. When eating became tricky she swapped plates for bowls. Now constant reminders on her phone remind her to turn off the hob.

“I have always been focused on what’s possible,” she says. “I accept there are things that I can’t or soon won’t be able to do, but there are also so many things that are not yet beyond me.

“Much of that is because of my daughters. I know there will come a stage when I need more help than I am able to give myself, but for as long as I can I want them to still see me as the mum they come to for advice, the mum they can share their problems with. I want to be relied on.”

Mitchell has moved from York to East Yorkshire to be closer to her daughters, but continues to live independently and that, along with her candid approach to her diagnosis, has made her something of a poster girl for a disease that so often is overshadowed by negative stereotypes and depressing statistics.

“When I tell people I am just living a different life from the one I had before, I really mean it,” says Mitchell, whose diary remains busier than most with public speaking events and talks wedged in alongside hospital appointments.

“It is not better, not worse – just different. Of course no one would want to be diagnosed with dementia, but it has brought me so many opportunities.”

In 2018 Mitchell published her Sunday Times bestselling memoir, Somebody I Used To Know, a moving account of her first years with the disease. Now she’s published a follow-up.

Written alongside journalist Anna Wharton, What I Wish People Knew About Dementia fuses personal anecdotes and interviews with friends also touched by the disease with the latest medical research.

“So many of us will either be diagnosed with dementia or have a close family member who is and yet there is so little practical advice out there to help you navigate what can feel like an impossible maze,” she says.

“It is easy to be overwhelmed by all the negative connotations which come with that word, but you don’t go from being well to not being able to recognise your own child overnight. There is a whole life to be lived in between.

“What I wanted to do was show people that this life can be a fulfilling one, but I also wanted to correct some of the myths surrounding dementia and the idea that those who have it can’t achieve anything.”

Mitchell can no longer tie her own shoelaces, a lack of appetite means she eats the same ready meal for lunch and dinner and problems with her balance means she is susceptible to falls.

However, two years ago she also persuaded her GP to sign a consent form allowing her to complete a fundraising skydive in aid of Young Dementia UK, she has received an honorary doctorate from Bradford University for her awareness work and she also advised Leeds Playhouse when it staged a production of Still Alice, chronicling a linguistic professor’s descent into early onset dementia.

“Dementia has taken away a lot, but it has also brought me things. When I dream, I never dream of the present, only ever the past when my daughters were little. How lovely and comforting is that?”

Charities like Dementia UK and Alzheimer’s Research no longer describe people as “suffering” with the disease – rather as “living with it”. However, Mitchell admits that words alone are insufficient to describe the reality that she and others face.

“Some people like to say they are ‘living well with dementia’, but for others that feels like a tremendous pressure to be seen to be coping.

“I prefer to say that we are all living as well as we possibly can on that particular day. It is not catchy but it is true, and the one thing we all need to be about dementia is honest.”

Since being diagnosed Mitchell admits her world has shrunk. She turns down invitations if she fears the environment will be too noisy and even the sound of the TV and radio can make her feel distressed.

However, she has found a whole other group of friends through social media.

Wendy is prolific on Twitter where she has 15,000 followers. Her blog, Which Me Am I Today?, chronicles her daily life, and by the time the pandemic hit she was already a veteran of Zoom having used video chats to catch up with friends.

“I do get some criticism on Twitter for being too positive,” she admits. “Some people don’t think it’s a fair reflection of dementia, but it’s easy to ignore them.

“I have never said my experience is the same as everyone else’s – it isn’t. That was why I wanted to interview my friends for the book.

“Dementia affects people in different ways, but our stories are all important.”

Bright and alert, the only visible sign that Mitchell has dementia is the occasional pause as her brain struggles to retrieve a word. It can, she admits, be frustrating but keeping busy helps.

“Routine is my friend,” she says. “I go out for a short walk three times a day and always take my camera.

“I have become known to everybody as the lady who takes pictures. I like that. I don’t want to be known as the lady with dementia.

“Because I no longer feel hungry or thirsty, I set alarms to remind me to eat and the writing gives me a focus. Dementia may have affected my speech, but I can type perfectly.”

But she is not always able to outwit the disease. Frequently Mitchell finds what should have been dinner still in the microwave the next morning, and when she does eat, she often forgets to test the temperature and burns the inside of her mouth. But what frustrates her most is how in some scenarios the disease makes her invisible.

In the book she recounts one of many clinic visits where the well-meaning doctor talked to her daughter as though she were not in the room.

“Even amongst some medical professionals who really should know better there is the tendency to see the dementia rather than the person,” she says.  “All I want is to be treated with dignity.”

Over the last few years, Mitchell’s emotions have changed dramatically. She no longer feels fear and while she still does experience sadness it is often quickly replaced by contentment.

“I know I don’t react to situations the way I once did and that can be very difficult for others to understand. However, for as long as I am able I will keep focused on what I can control. For me that’s the only way of living.”

What I Wish People Knew About Dementia is published by Bloomsbury