What I Wish People Knew About Dementia: From Someone Who Knows

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What I Wish People Knew About Dementia seeks to help readers both understand the science and empathise with the real-life implications of the disease. Occasionally heart-breaking, sometimes hilarious, Mitchell’s little snippets from her friends are always grounded in reality. Many will be instantly familiar to those who’ve experienced a dementia diagnosis personally. But how many of us can say we stay the same throughout our lives? The only difference with dementia is that these scars are more physical, more permanent, on the whole unmendable – yet not insurmountable.

For a persion with dementia "there's nothing more comforting than to be sat with your eyes closed, doing nothing", Wendy says. Wendy Mitchell had a busy job with the NHS,raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn't know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer's. You may change or cancel your subscription or trial at any time online. Simply log into Settings & Account and select "Cancel" on the right-hand side. 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?'" Legs up,’ Mr Pink Man shouts in my ears as we come closer every second to the viewing area. I’m confused because I thought the landing spot was behind the woods.Soon after her diagnosis, Wendy began writing a blog, Which me am I today?, which continues to diarise her experiences of what she calls her “new life” with dementia, and the process of adapting she’s undertaken with her two daughters. Dementia isn't a consequence of growing old, but the risk of dementia increases with age. Most people who are affected by dementia are over 65, but there are many, like Wendy, who show symptoms when younger. Personally, I don't think we will ever fully understand what an individual with dementia is contending with, and we will always be learning new aspects about the disease. This is the disease that claims many, and it is truly devastating to witness, whether you are a relative to that person, or a health professional. I worked in specialist dementia settings for over ten years, and I don't regret any of it, in fact, it sometimes crosses my mind whether I could have done more. I used to worry and try to fix things for everybody before, but I don’t tend to worry about anything now. I get anxious about it, but I think, “I can’t do anything about it now,” so I tend not to try and fix things for others. I had a bad accident before my dementia – I got hit by a car – and from then I learned things were out of my control. I do worry about my family, but I don’t worry about life or myself. I don’t worry about my future, whereas I used to before.” 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."

A must-read . . . It offers readers a practical and really honest guide to life after a diagnosis of dementia . . . For anyone who's beginning this journey, I couldn't recommend it higher' The vet said Billy has to lose weight; he must be getting fed somewhere else because his diet isn’t working. You are only giving him a few biscuits when you’re on Billy duty, aren’t you mum?”’ If I’m with my daughters, people will speak to them instead of me, but my daughters are very good at saying, ‘Well why don’t you ask mum?’ When people hear the word ‘dementia’ they forget there’s a beginning and automatically think of the end. There’s so much life still to be lived, albeit differently and with lots of support. I always tell people they should never dwell on what they can’t do; I can’t drive or cook or do numerous other things, but there are lots of other things I can do, so I concentrate on those.” How did the idea for writing a book come about?Revelatory . . . There are many books about dementia that focus on its biology, its clinical subtypes, its social dimension, its effect on carers and loved ones. But there are few memoirs written by the people with dementia themselves. Mitchell's joins a burgeoning literature of medical memoirs that, like the finest travel writing or reportage, transport the reader to another world that they may or may not visit one 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.'" Wendy goes to greet her daughter who has just come home from work. ‘Gemma and I catch up on the day. Twenty minutes must pass by like that and then Billy jumps down from my lap and sniffs at his empty bowl and sits, staring at it. “Ah no, I must have forgotten.” Gemma looks at him, unsure. There is no follow-up, no coping strategies for me or anybody else. If I had been diagnosed with cancer, or a stroke, or diabetes, would the consultant have discharged me? So why is there no aftercare following diagnosis of a brain disease, and no continuing support?

Everyone is an individual, so when you meet one person with dementia, you’ve met only one person with dementia. Some things work for some people and don’t work for others. However, I always think that recording now, in whatever way is possible for you, is a legacy for your children and their children – and other generations. I find it a very comforting idea.” What impact do you hope the book has on others? Always make sure you talk to your loved one, not the disease. How would you like to be spoken to by people that you meet? With kindness and respect, of course. If you have a relative with dementia, and patience isn’t your forte, well now is the time to practise. The words “hurry up” promote panic: we cannot hurry up! Our brains are incapable of multitasking. The most surprising revelation of all is Wendy’s admission that ‘I feel guilty for the happiness I have found and wish that I could give some of it away’. I absolutely adored this book, and having been diagnosed with Spina Bifida Occulta at the late age of 38 (which answered so many questions about my problems growing up, but was not detected in the 1960's) I completely understood the slow deterioration of the former self and the realisation that a new Wendy was emerging and her former persona was just "somebody she used to know". The book is honestly written and I loved the dual aspect and the way she writes letters to the old Wendy, especially the one where she writes that she would have liked to know it was her last chance to dance/drive/walk unaided and would have enjoyed them all the more. I sobbed at this, because it was exactly how I felt and no-one else had ever really understood that until Wendy. When I developed MS a few years ago too, my life took another hit and my legs literally went from under me. It hurts so much when you lose friends, simply because of an illness, you are after all still the same person, with just a few minor things missing that have been taken from you, so friends please don't take your friendships away from us all too. We are feeling lost and alone enough already! I do travel around the country a lot going to conferences on dementia but people see me and think it is easy for me.So little is known about the lived experience of people with dementia,” says Mitchell. “Even though healthcare professionals are starting to understand the workings of the brain, the experience of those with the condition can be so different from the ‘tragedy’ of diagnosis and treatment”. I like to think of a diagnosis as the beginning of a different life – one of adapting and support, and not one you’d have imagined whatsoever – but the start of a new life rather than the end of life. Wendy Mitchell In the book, you discuss leaving recordings for your daughters. How important do you think this process of leaving something behind is for those with dementia? It’s not unusual for carers to feel disconnected from the person they are supporting, unsure of how to demonstrate the bond between them, but a hand massage is a way of showing this. It says something more meaningful than words, perhaps: it shows that someone is taking their time to relax with you, and that the recipient is worthy of that time. It actually speaks a thousand words.”

Patterned carpets are completely disorientating because all the shapes just seem to come alive, moving around in front of my eyes. It can be very disconcerting to be asked to walk across a carpet that looks as though it’s covered with wriggling creatures, and because many of us with dementia have a wobbly gait, we tend to spend a lot of time looking at the floor to make sure we don’t fall over.” 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. I can change the world” stuff into a bin somewhere. That’s the past now; that ain’t going to happen. It’s difficult to accept that, but I think it’s an important part of why our feelings settle a bit when we have dementia. We no longer have that pressure of a future on us. I care less about what I should care about; if it’s not in my heart or head, it’s not happening. So I’m not going to put myself out to pretend it is.’The main message I took from the book,’ says Janet, ‘was that the attitudes, language and communication from others (especially professionals) can be so crucial, and that so much could still be improved upon.’ Caroline says, ‘Wendy has strong opinions on many areas including relationships, social isolation, environment and living alone with dementia.