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

Product Information

When [Anna and I] talked about end of life, at that point I hadn’t discussed it with my daughters. It was important that I had the conversation with my daughters first before I had the conversation with Anna and we wrote about it. I’m still a mum, first and foremost, so I wanted to make sure they were happy with the sections they were included in, so they would read those sections and either approve or not approve [them]. It was a very open process between us all.” Pre-diagnosis, did you think you’d ever write a book? Wendy also explains how, when confronted with a flight of stairs, she needs first to decipher whether she is approaching an escalator or a slide. If the steps are all the same colour, she has no idea where to put her feet. Patterned carpet is the worst. This book offers a positive approach to deal with people with dementia from a fresh perspective. That we shouldn't demand 'em to give up on themselves, and treat 'em differently by defining them by their disease.

Wendy is an ambassador for the charity, which campaigns and funds research to find a cure for dementia and supports people living with it today. If a person doesn't understand the challenges of dementia, they're not able to give good care to someone living with it, Wendy says. 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?”’

How did you and Anna work together on the book?

Wendy emphasises that everyone is different,’ says Caroline, ‘just as they all were before dementia. In this book, she includes other people’s experiences as well as her own.’

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.” I can type as though dementia never entered my world as that part of my brain has not yet been affected, but that often works against me as people question my diagnosis. All I can say is, live a day in my shoes and I’m sure the reality will dawn.Many think of dementia as almost a good a death sentence because we lose our memory and sense of identity. On the darker note, Mitchell tells us that it can be worse. We also lose our sense of smell and taste. The things we love taste differently, and even offensively. Even our hearing can be impaired and loud noises sound ‘like a raging bull’ crashing through our head. We may not hear the ‘S’ and ‘T’ sounds and the result is that we may not be able to follow conversations.

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! It’s reasonably rare for someone living with dementia to write their own experience, and Mitchell is now a powerful and much-loved voice within the dementia community. Her work has helped raise awareness of the illness, advocate for improved services and support, and – perhaps most importantly – ensured that people living with dementia are not just talked about, but included, consulted and listened to when it comes to considering how society approaches an illness that touches so many of us. But her diagnosis far from represented the end of her life. Instead, it was the start of a very different one. However, I’m also hoping I can convey that, although we’ve been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we still have feelings. I’m hoping to show the reality of trying to cope on a day-to-day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. Living as well as you can with dementia is all about adapting. Adapting to new ways to enable us to live better for longer with dementia.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. Everything I know about dementia comes from What I Wish People Knew About Dementia, From Someone Who Knows. That means everything I know about dementia I have known since yesterday, when I absorbed the book in a single sitting.