A devastating diagnosis at 58 didn't stop Mitchell becoming a bestselling author. She reveals what it's really like to have Alzheimer's and explains why she won't remember this interview in the morning.
There are two ways to introduce you to Wendy Mitchell. One is to describe her as a single mother to two grown-up daughters, a public speaker and campaigner who has hobnobbed with Hollywood royalty and skydived in her home county of Yorkshire. She is a blogger and passionate photographer, with an honorary doctorate from the University of Bradford and more than 15,000 Twitter followers. A bestselling author, she is about to publish her second book.
The other version of Mitchell is quite different. Sometimes, in the morning, she will open the microwave door to find a bowl of congealed porridge, yesterday's breakfast, long forgotten. Hunger is a feeling she hasn't experienced in years. She has olfactory hallucinations, which in the past have caused her to dart about the house looking for a fire that doesn't exist. While travelling she leaves Post-it Notes on the bedside table of her hotel room so that when she wakes up she knows where she is. This version of Wendy Mitchell cannot tie her shoelaces.
Mitchell, 65, has dementia. She was given this "bummer of a diagnosis" in 2014, at the age of 58, after she had issues with her memory and some unexplained falls while out jogging. She is one of about 900,000 people in Britain with the disease, which she describes as "an umbrella term", with the "spokes of the umbrella" making up the specific type of dementia a person might have, in her case a mix of early-onset Alzheimer's disease and vascular dementia. The former, which is believed to be caused by proteins that damage and kill nerve cells, can impair memory, thinking and behaviour and can take hold in those in their forties and fifties. The latter, caused by reduced blood flow to the brain, impacts memory, reasoning, planning and judgment.
Yet despite her diagnosis she is very clear that she is not suffering from dementia, rather she is living well with it. Dementia hasn't stopped her from appearing in a BBC short film about the disease or attending the movie premiere of Still Alice, where she met Julianne Moore, who played a linguistics professor with early-onset Alzheimer's. It hasn't stopped Mitchell from telling her story.
Her first book, a memoir called Somebody I Used to Know, detailed her diagnosis and the tricks she employs to outsmart dementia, everything from putting photographs of the contents of her wardrobe on the door to remind her of the clothes inside, to painting a blue border around her light switches so that they don't disappear into the wall (tone and contrast are difficult for her brain to distinguish). Written with a journalist, Anna Wharton, and published in 2018, it gave a unique insight into the mind of someone with the disease. "I got thousands of emails from people saying thank you," says Mitchell, a slight woman with closely cropped hair who is dressed casually in a bright orange jumper and dark trousers. "Some from carers who were just saying, 'Now I understand why something is happening, why I shouldn't do this.' And from people with dementia. The nicest one I had said, 'I'm no longer afraid', which was just wonderful."
She thought it would be her only book "because you never know what happens with dementia", yet despite now struggling to use a knife and fork, she has no problems with a keyboard. "I can type as though dementia never enters my head. That part of my brain just hasn't been affected yet, thankfully. I type every day [for her blog, Which Me Am I Today?] so I don't forget. And I sometimes marvel at what I'm typing; the words come out quicker than I'm thinking them."
Mitchell's experience of the disease is by no means typical. Many of those with dementia deteriorate rapidly and their condition is incredibly debilitating. However, the Alzheimer's Society estimates that 120,000 people with dementia do live on their own. From my limited experience of people with dementia, I was anticipating a woman who might repeat herself, lose the threads of conversation or who would seem distracted or distant, but in person Mitchell is alert and engaged. When I make the mistake of asking her what she has learnt from other dementia sufferers, sharp as a pin she calls me out. "I've learnt that we don't like to be called dementia sufferers. If you are told over and over again that you're suffering, you begin to believe it."
Mitchell is eloquent, her speech flows, but every now and again there is a stutter, a glance into the distance while she plucks at the air as if reaching for an elusive word. Her bright eyes cloud over with frustration when it will not come. But then she finds the word or a good alternative, or I offer one up.
We are discussing her second book, What I Wish People Knew About Dementia, which again was written with the help of Wharton. It will be essential reading for those living with dementia, those who support them, professionals working in the field and any "curious individual", especially given that more than one in fifty of us may be diagnosed with the disease by 2050 owing to a growing and ageing population. "I wanted people to see that things are possible, good can come out of bad," she says. Her message for those given a dementia diagnosis is to never give up on themselves. "So many other people will do that around you. As soon as you give up on yourself, that's when dementia takes over."
Mitchell stresses the importance of routine and activity, without which she says her brain would melt like an ice cream. "That's why I hate seeing people in care homes just sitting and doing nothing." Every morning she goes for a walk with her camera to snap the sunrise. Alarms go off to remind her to take her medication and to eat and drink; in the past year she lost the ability to feel thirst and now she eats twice a day simply for fuel. Afterwards she will play games such as solitaire or Scrabble. "The games will firstly wake up my brain and keep it going but they will also tell me what sort of a day I'm going to have. If I can only make two-letter words in Scrabble I know it's not going to be a good day." She will often have engagements — meetings with friends, support groups. She has been involved in research trials (doctors don't think she has a hereditary form of Alzheimer's), she gives talks across the country and often holidays in the Lake District. Her GP, having read her first book, changed her view about dementia and happily signed the medical waiver required for Mitchell's skydive to raise money for Dementia UK. Before she goes to bed she will detail her day and upload her photos on her blog, which she describes as her memory.
Her ability to play a cat-and-mouse game with her disease is partly explained by her exceptional organisational skills, finessed during her 20 years as an NHS hospital manager in Yorkshire, juggling rosters for hundreds of nurses. "That old Wendy was highly efficient and so I like to keep as much of her with me as possible," she says. Before each commitment, she will plot her journey, print out the details of where she has to be and when, and the alarms she has set in advance will go off. Yet despite this level of high functionality, there are elements of her disease that she can't outwit. Her dentist recently remarked on the number of scald marks on the inside of her mouth — she can forget between mouthfuls that a hot potato has burnt her and so she does it again.
The book is full of practical advice and draws on the experiences of Mitchell's friends, her "second family", who, like her, are living with the disease. "I wanted to give them the opportunity to speak, to be heard" and to enable others "to see the complexity of dementia and the huge impact that peer support can have for people". One friend recounts his frustration at being talked to as if he was a child. Another laments the bad days when she can't think straight and finds herself putting blueberries in her coffee.
But there is positivity too. The friend who feels at ease about the future; dementia has rid him of the pressure of his aspirations to make a big impact on the world. Or another who has found support through a local group and his life zings again. "We've learnt so much from one another," Mitchell says. "We're all different, we all have pockets of similarities but just as each human being is unique, so is each person with dementia."
Through their collective accounts Mitchell seeks to dispel some of the misconceptions about the disease. "The biggest one is that dementia is just about memory. Dementia is about so much more. So many of our senses are affected. I'm forever getting up and answering the door when nobody's rung because I can think I've heard the doorbell, but it's just dementia playing tricks with me." She details the trouble those with the disease can have with the colour black: a black doormat looks like a gaping sinkhole in the ground, a flat-screen television looks like a hole in the wall. "Our brains don't interpret the information correctly," she says. "I always leave the red light on my telly because then it tells me that it's not a big hole."
The disease has also robbed her of most of her emotions. Nothing can induce her into a fit of rage or a jealous state. "I have only three emotions: happy, sad and content," she explains. "I seem to be left with the kind ones, whereas some of my friends, they've been left with the anger ones. You have no choice in which emotions you are left with."
She doesn't mention love, yet her writing is steeped in it, particularly when she references her remarkable daughters, Sarah, 41, and Gemma, 38, whom she raised alone after their father left when they were 7 and 4. They were the reason she was able to emerge from the deep depression that followed her diagnosis seven years ago. "It was only seeing the effect my being sad had on my daughters that brought me out of it because I'm still a mum," she tells me.
It is a testament to their love for their mother that Mitchell can live alone with a disease that sees many requiring round-the-clock care. Gemma lives with her husband in the same East Yorkshire village as Mitchell and Sarah is a 15-minute drive away. They provide her with meals, make and attend hospital appointments, help with cleaning and take her on outings. To help her maintain her independence, they also introduced her to the world of tech. "I didn't even know what an iPad was before dementia," she says. "I didn't know what a smartphone was or Alexa. And yet my daughters are so patient that they've taught me all that and now they help me to remain independent at home," she says.
Sarah, an oncology nurse, has contributed a section to the book on caring as a daughter for a parent with dementia. She cautions families against disempowering their loved ones. "When you love someone and you know you can do something for them, you just want to jump in and do it. But actually the most loving thing you can do is help them keep their sense of self by letting them be." Mitchell has seen the partners who, sometimes out of frustration with the fumbling of fingers, zip up their loved one's coat for them. "Don't disable them before they've lost the ability to do something themselves because if we don't do something day after day, we forget," she says.
Mitchell is all too aware of the shift that has taken place within her mother-daughter dynamic. Where once she kept a watchful eye on her girls, it is Sarah and Gemma who keep tabs on her via a tracking app on her phone. They worry that the disease has made her overly trusting. "We agreed that if I ever need a workman, they'd always be here and sort it out," Mitchell says.
In the book Sarah describes the low-level anxiety she lives with each day. "I've had to learn not to let worry and fear overwhelm me," she writes. "I know my job as her daughter is to enable her to remain independent and to do this I have to let go of fear of what could happen. I used to constantly worry about what would happen if she breaks a bone, hits her head or worse. [Mitchell broke her wrist in a fall just before Christmas.] Now I just think whatever is going to happen, will happen. As long as there is joy, it's worth doing."
Of her prognosis, Mitchell says: "We all progress through the disease at varying speeds. Some people deteriorate very quickly; others on a gentler decline over many years. There's nothing more comforting than closing your eyes and allowing your brain to shut down. We all need to rest but if I rest for too long I can feel dementia seeping through my body. I'm intuitive enough to know it's bad for me, no matter how nice it is. So 'doing', continually testing my brain and making it work hard, is my way of keeping dementia at arm's length."
She describes the dementia-stricken mind as a flimsy bookcase that holds the memories. "When the bookshelf rocks, the top-shelf books fall off first, so our most recent memories fall away." Yet the older memories — the girls' childhoods, her own childhood — are more firmly lodged on the bottom shelves and she can recall them clearly. At night, when she does manage to sleep (dementia has played havoc with that too), she dreams in the past. "My girls are always little. The analyst in me says that is preparing me for when I regress back to the past and actually it's quite nice to have those dreams, so maybe the future won't be as weird as people think it's going to be."
One of the upsides of her condition is the loss of fear. "Dementia has taught me to let go of fear. What's the worst that can happen? Dementia is the worst that can happen, so the next worst that can happen is death, but that actually releases me from dementia, so what have I got to be afraid of?" Her phobia of animals is long gone. "I used to be afraid of so many things, which seems so stupid now. I was terrified of animals, any animal whatsoever. And yet now my daughter has Billy the cat and Merlin the dog, and I adore them and do nothing but cuddle them. My daughters think, 'Where does this person come from?' They say I've been overtaken by this gregarious alien." Whereas before the disease she was "so private and so not the me I am", now she is "very huggy". "You nearly got a hug at the door," she tells me. "I told myself beforehand, 'No, don't. You don't know the person.' "
Mitchell is pragmatic about the future. "The bad days happen far more frequently now than they did before. I can hear my speech going because it has been a busy day," she says. She has contemplated travelling to the Dignitas clinic in Switzerland to end her life, but has ruled it out for now. "I truly believe that the laws [on assisted dying] in this country need to change because Dignitas is the only option at the moment. I wouldn't want to do it because I'd be going somewhere I didn't know. It wouldn't be right, wouldn't be right for my daughters. It's a huge balance at the moment and who knows where I'll end up in the end."
She knows the time may come when she no longer recognises Sarah and Gemma but she believes that even if she can't communicate with them the touch of their hand or the sound of their voice will make her happy. "I've said [to them] if that happens just remember I love you." She doesn't want the burden of her care to fall to them, so other options are being considered. "I want to remain independent for as long as I can. Once I'm no longer independent and no longer capable of looking after myself, then I won't be the me that I am. I never want them to look after me," she says.
Her story is a heartbreaking one, yet also incredibly uplifting. She would hate to think anyone pities her. In our interview she describes herself as "lucky" half a dozen times. She even talks about the silver lining of the first lockdown in spring 2020 — the passion she discovered for photography thanks to a camera she had the foresight to buy. "I'd have my one walk around the village [to which she moved about four years ago] and just take photos. My village had a Facebook page, so I'd post the photos on the page every day. And I got so many wonderful comments. I became known as the camera lady. Not everybody knew I had dementia. It was so wonderful because it put my talent first and demoted dementia."
She says her neighbours are supportive. "When I go out for a walk, some days my dementia takes over and I haven't a clue where I am and what I'm doing and no one bats an eyelid when I say, 'Which way is back to my house?' " They will point her in the direction of home or bring her there themselves. "I'm just Wendy and they know that sometimes I need help."
It is difficult to reconcile the version of Mitchell I meet with the one who will wake up the next day exhausted from the exertion of the interview and photoshoot and with little or no recollection of our conversation. Overnight those files in her brain are wiped. Yet later that same day she will gather her "pile of instructions", her alarms will ring and she will set off by herself for Manchester, where she will spend a few days recording the audio version of her book. Days later I read on her blog that it all goes without a hitch.
How I help Wendy to write her books
I met Wendy in 2016 after seeing a Facebook video she had made about life with dementia, writes Anna Wharton. My dad had had dementia and I found her story inspiring.
We wrote most of our first book together via WhatsApp, with Wendy typing her responses to my questions. I used references in her blog as well as letters, hospital notes and her daughter Sarah's diaries to piece together events in her life. I'd ask her about them and each day I would get a different version. It wasn't annoying, it just layered up more colour for me.
We started writing the second book in autumn 2020, amid lockdown, and this time we used Zoom along with WhatsApp. I did notice a decline in Wendy but as I got her brain working again, she became as brilliant as she had always been.
For the second book, I wanted to bring in the voices of her peer group so I did Zoom calls with Wendy and her friends, which were insightful and hilarious.
The remarkable thing about Wendy is that she keeps doing things that scare her. It takes all of her batteries to be able to do an interview or give a talk. I've seen her suffer afterwards. For days she has these pounding headaches; she is very drained and tired.
Euthanasia is a subject she feels strongly about and I think we will end up writing about it together next.
It's impossible to say exactly what her future holds. She has a degenerative disease but while we know what the ultimate outcome is going to be, the frustration and the gift of this disease is that you don't know what the prognosis is.
You can only value your present moment, which is something that always comes across in Wendy's writing.
What I Wish People Knew About Dementia by Wendy Mitchell is on sale now.
Written by: Audrey Ward
© The Times of London
