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

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I am still a mum and I want to know what is worrying them as much as they want to know what is worrying me,” she says. Doctors should say ‘there’s still so much you can do’. 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?”’

Wendy admits that: “When I walk out of here today I will forget the details but I will remember the emotions.” If you only look at that small part of someone - memory loss - you're missing out on supporting them in so many ways and making their life so much better and in return, your life so much better."

Worried about a planned hospital stay? Looking for advice on choosing a care home that's right for you or a loved one? Our free, confidential, national phone service is open 8am-7pm, 365 days a year. 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 But I felt there was still so much laughing left to do. I call all this my suduko as it keeps my brain active being in lots of different environments and meeting lots of different people.” 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?

It is for this reason, she warns: “Language must never be underestimated. The language you use when giving a diagnosis can make or break people. Clinicians should be saying there is still so much you can do. I thought I worked in the ideal place to be diagnosed as I worked in the NHS for 20 years. I was a very, very work-orientated person – I suppose I was a workaholic. I adored my work and the NHS. I was also very fit and active; I used to run every other day. I didn’t smoke and I didn’t drink, so I didn’t fit the profile of what you imagine from someone being diagnosed with dementia.” What did you know about dementia at that point? In her local village, she is known as 'The Camera Lady' as she walks around photographing the countryside every day. I read Wendy’s other book someone I used to know and was blown away by her courage and tenacity so was thrilled to be asked to read What I wish people knew about dementia, particularly as dementia is very pertinent to myself, my father had lewy body dementia and as a nurse I regularly look after dementia patients! 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.people over the age of 60 and one in six people over the age of 80, we have very little understanding of what it is like for those who have this cursed condition. 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. 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. Do allow us to finish our sentences without finishing them for us, and don’t talk to our caregivers, instead of us, as if we weren’t there. If you’re talking to me, don’t ask lots of questions in a row, because I’ll only remember the last one, and that’s the one I will answer. And please don’t be afraid of silence: silence is the friend of someone with dementia, it allows us to think. This is why I don’t like talking on the phone any longer and prefer Zoom - people can’t see me thinking on a phone conversation. Please never stop speaking to us, or visiting us You may also opt to downgrade to Standard Digital, a robust journalistic offering that fulfils many user’s needs. Compare Standard and Premium Digital here.

I don’t remember how long I had been chewing, or how much longer I needed to chew. The result was, too many times, choking on food that I had not ground down enough before attempting to swallow. It’s hard enough to concentrate on eating without the extra effort it takes to cut and chew. Meat had to go, and was replaced by fish.” I had so many different diagnoses at the beginning. They said it was stress or the menopause when I had already had the menopause. I knew it wasn’t stress as I am not that type of person. We read journalist Shaun Deeney’s book Love and Care, a memoir about caring for his mother after she was diagnosed with Parkinson’s disease dementia. Even if dementia has not yet impacted your life, there’s still a lot to be learned. The book raises big questions about dignity and community, autonomy, access and how we value people’s contribution to society. Mitchell’s writing, while particularly pertinent to the conversation around dementia, resonates on a universal level.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. Wendy Mitchell is an inspiration, especially to educate others whilst living with dementia herself. I love the way she separated the chapters to speak of everyday things like smells, taste, touch, things that we sometimes take for granted. There is a really interesting section on moods which I could resonate with, as with experience, I worked with many individuals that often had low moods, that sometimes turned extremely aggressive. The best kind of treads are those where the edges are clearly marked, particularly in yellow, as is often the case with outdoor staircases. I decided this is why I so often fall up and down my stairs at home, as they are carpeted with no clear edge. Now I have two stair banisters, one on each side, to hold on to to make it less likely. 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.