On the 31st of July 2014, Wendy Mitchell was diagnosed with early onset Alzheimer’s. She was 59. “Bizarrely it was a relief because it put an end to all the uncertainties,” she says. Such a positive response is typical of Wendy’s attitude towards her condition. Having gone to her GP 18 months earlier after experiencing “strange symptoms,” Wendy explains how her eventual diagnosis finally gave “a name to what was wrong and enabled me to move on and learn how to adapt my life to be able to live as well as I can.” She suggests that “once you accept that a diagnosis of Alzheimer’s means having to live your life differently and finding ways to outmanoeuvre the disease, the easier it is to accept.” One year on, Wendy still lives happily in York and has become an inspiring national spokeswoman for people living with dementia.
I was renowned for having a brilliant memory
The difference between dementia and Alzheimer’s is often misunderstood. Dementia is a group of symptoms that affect mental tasks like memory and reasoning. It can be caused by a variety of conditions, however in the UK, 60 per cent of dementia is caused by Alzheimer’s, a progressive disease of the brain that slowly impairs memory and cognitive function. The exact cause is unknown and there is no cure. Wendy is one of 850,000 people in the UK living with dementia, however only 40,000 of these are younger people, whose dementia is onset before the age of 65. Despite working in the NHS for 20 years, Wendy says she “hadn’t realised that people as young as me could have Alzheimer’s.”
Wendy remembers the first time she noticed the symptoms of dementia, “I was renowned for having a brilliant memory but at work it was noticeably failing me. I’d be in a meeting and I’d forget the simplest of words and would forget the names of familiar people. The worst episode was when I came out of my office one day and didn’t recognise where I was or who all the people in the corridor were.” Naturally the disease didn’t just affect Wendy at work, but in all areas of her personal life; “I was also a runner and my brain and legs stopped talking to one another and I used to fall over if I had to change direction.”
The difficulty of living with dementia, Wendy explains, is also exacerbated by its unpredictable and incongruent nature. “Every day is different. Some days it feels like Alzheimer’s has never entered my life. But on other days, it’s like a fog descends on the brain and confusion reigns from the minute I wake up. On these occasions it feels like there’s so little in the brain left to help me get through the day and I have to really work hard at remembering the day of the week and what I’m supposed to be doing. This feeling I can liken to the process of untangling a necklace. If you’re feeling calm, you sit there patiently and one by one untangle the knots and work out the reality of the day. But if panic rises, it’s like when you’re feeling impatient with the necklace and it’s getting more knotted up. You find it impossible to work out what day it is and what you’re supposed to be doing. On these occasions it can feel like your head wants to explode as you feel so out of control.” Saddled with the knowledge that her memory will deteriorate, Wendy is most scared of “not realising when I’ve gone over the edge into the world of a different me; of one day, looking at the two most precious people in my life and not knowing who they are. Of losing my independence.” Having said that, Wendy is not one to dwell on her fears. Instead, she has found methods to cope with the symptoms; “My way of dealing with these moments is to tell myself it’s just the disease and the fog will clear eventually, so I’ll just sit quietly and wait. It’s a bit like a game of chess – you sit waiting for your opponent to make their move and then try and outmanoeuvre them.”
Living alone in York, Wendy is still incredibly independent and has simply found methods to cope with dementia, which she implements into her everyday life in order to manage the effects of Alzheimer’s. “Living is all about adapting. Now I have a clock next to my bed that tells me the day of the week, the date and so on as I often wake up and can’t work out what day it is. I have a monthly diary and a weekly diary on my fridge, which tells me where I’m supposed to be each day. I have alarms going off all the time on my iPad and phone to tell me when to take medication etc. I’m also testing an app being developed by students at Glasgow University which may help people with dementia.”
It’s a bit like a game of chess – you sit waiting for your opponent to make their move and then try and outmanoeuvre them
Even the simplest of tasks, like visiting friends or attending a meeting, Wendy has to approach in advance and with particular attention to detail. “I always plan outings meticulously and allow more than enough time to catch trains as I often get distracted! I print out pictures of people, places and building I’m visiting so they don’t appear unfamiliar when I get there. Basically I make travelling as stress free as possible.” Despite such thorough preparation, Wendy also has to prepare for times when dementia takes over unexpectedly. “If I experience moments of not knowing where I am or why I’m there, I always carry paperwork of who I’m going to see and a card in my purse with the fact I have Alzheimer’s with my daughters’ phone numbers.” Rather than dwell on the things she has lost however, Wendy chooses to engage with the changes dementia has brought into her life. “I’m no longer able to read novels as I can’t remember the storyline long enough so choose to read short stories instead. Same goes for television – I tend to watch documentaries and one offs. There’s very little I can’t do, I just do it differently.”
While a diagnosis of Alzheimer’s obviously brought a huge change to Wendy’s own life, I asked her how it had affected her relationship with friends and family. “While it shocked my daughters, it enabled us to sit down and talk about the future – something most people don’t address. Most friends were supportive but some stopped communicating – when people hear the word ‘dementia’ they have this concept that you’re at the end of your journey when in fact I was just at the beginning.” Frustrated at this common misconception, Wendy was inspired to find a way to communicate with these people as a way of spreading awareness about what it is really like to live with dementia, especially what it means to be diagnosed with early onset Alzheimer’s. “That’s why I started to write my blog. I can still write and articulate well through the written word as that part of my brain isn’t broken yet, so through my blog my family and friends could see that I was still me.”
More than this however, Wendy’s blog ‘Which me am I today?’ acts as her own memory. “It started by me and my daughter Gemma having a conversation. I said I needed an electronic journal. She suggested a blog. I’d never ‘blogged’, ‘Facebooked’ or ‘tweeted’ in my life so she had to help me set it up and show me how it all worked. We soon realised that people all over the country and in fact the world became interested in what I was writing. My blog is basically my memory so I write it for me and my daughters but if people elsewhere choose to read it and it helps them too, then that’s a bonus.” Having been read in over 80 countries, Wendy’s blog has indeed reached out to people living with dementia in all four corners of the globe and is regularly translated into Italian for one group. I asked Wendy how this huge amount of publicity makes her feel. “I’ve had many kind comments from people all over the world. It has helped many carers understand how to help their loved ones, but also helped others with dementia see that it is possible to live well. The knowledge that I’m helping people is amazing and humbling as well. However, even if no-one chose to read it, I would still be writing it as it is my memory and it’s all I’ve got to look back and remind me of all the wonderful opportunities that have come my way.”
One such opportunity arose in February this year, when Wendy was invited to attend the premier of Still Alice, a film staring Julianne Moore telling the story of a 50 year old professor who is diagnosed with young onset Alzheimer’s. “It was always going to be a difficult film to watch as I knew it would be an insight into my future, however it is more powerful in its reality as Alice’s decline unfolds very clearly before you. It was refreshingly real and sensitively portrayed with no stereotypical pretence. A powerful insight into the world of living with dementia, from the reality of the developing disease to the reality of the effects this has on the individual and all those around them.
“One scene was a shockingly accurate reflection of my own experience – of being somewhere that was totally familiar and not recognising where I was. It captures the reality that Alzheimer’s shows no bias of age, sex, intelligence, wealth or ethnicity when selecting those to challenge with the disease. It’s the first film I’ve seen that captures the true picture from the pre-diagnosis stage instead of portraying the end.” Wendy goes on to suggest how the use of high intelligence in the film “is to state the reality that dementia can affect anyone regardless of intelligence, wealth, sex, ethnicity – no one is immune. Money won’t save you, intelligence won’t save you. I don’t drink, smoke, I had and have an excellent diet and used to run most days – it got me.” For Wendy the biggest positive of the film was its power in bringing “the world of dementia to a whole new audience.”
The film Still Alice depicts the ruptures Alzheimer’s can create in family life. However, for Wendy, family has been a lifeline. “My daughters have been amazing. They have supported me whenever I’ve needed it. We soon realised that it is so easy for family to ‘disable’ people before they’ve lost the ability to do things. It’s often quicker and easier. However, we’ve learnt together that if you give me time, I can still do most things. Many people ‘disable’ those with dementia with the best of intentions but all we need is time. It may take you five minutes to do something that we take an hour to do the same thing – that doesn’t mean you do it for us.”
It’s a bit like a game of chess – you sit waiting for your opponent to make their move and then try and outmanoeuvre them
Indeed, Wendy is keen to convey the message that those diagnosed with early onset Alzheimer’s are “at the beginning of the journey, not the end.” She advises those who are newly diagnosed “not to panic at the diagnosis. Don’t give in. Adapt and find new ways to compensate for the parts of you that don’t function like they used to. See it as a challenge to outmanoeuvre this cruel disease.” It is important, Wendy stresses, for relatives to help those living with dementia “find different ways to do things.” She calls her friends and readers to join the Alzheimer’s society. “They have been my lifeline and have given me opportunities and never assumed I can’t do something.” Wendy has also discovered the importance of involving herself in “social, clinical and technological research” that “makes you feel valued.” This way, Wendy continues, “you’ll be looked after far better than if you were just left in the system; and you’re helping the next generation – your children. We have to have more than ‘hoping’ we don’t get this disease and this can only be achieved through research.”
For Wendy, the future is undeniably uncertain, “we have a beginning and a middle to go through before the end and that may take many months for some and many years for others”. However, a year on from her initial diagnosis, Wendy continues to blog about her experiences of living with dementia. Talking publicly is the only way to bring about much needed change, especially to post diagnosis care, which is extremely lacking. Despite the frustration of bureaucratic obstacles, Wendy promises to “continue to challenge public perception and shout from the rooftops for as long as I’m able.”