Rethinking Dementia: Normal Human Responses #11

 

Although this is slightly off topic, and not really aligned to the #BanBPSD series I planned for September 2018, I wanted to share this blog today, and reviews about my books, one which I wrote, in essence, as an attempt to normalise dementia.

In 2016, I published two books, one called “What the hell happened to my Brain: Living beyond Dementia”, and the other called Diagnosed with Alzheimer’s or Another Dementia, co-authored with a colleague and friend, Lee-Fay Low.

Both have been well received, but I do really want to update both of them, in particular on the matter of BPSD. However in spite of that term being used in both, I have been told both books are helpful and useful books. Dr Shibley Rahman also wrote a foreward for my book, which I was thrilled with.

Richard Taylor wrote and videoed a Foreward for my first book, which I’m publishing again today. Others have sent me wonderful reviews, for which I thank them. One review on Amazon was more negative, but hey, that’s ok too, after all, a review is just someone’s opinion, and in no way do they validate OR negate the value of my lived experience of dementia.

Jessica Young wrote a review of my book, and in the true meaning od “Nothing about us, without us” asked me to respond to her review. That in itself was a very unique experience, as initially, I had no idea is she like my book!

The review by Professor of Dementia Research, Faculty of Medicine & Health Sciences, Nottingham University on 30 December, 2016, was also reproduced with permission on my blog.

Mary Radnofsky also sent  me a short review of my book sometime after she joined DAI, which is very meaningful to me, and which is published below.She wrote (2017) in a piece titled Great Reads about Living with Dementia,  Just my opinion…  Mary L. Radnofsky, Ph.D.

“Kate Swaffer’s new book, What the Hell Happened to My Brain? (2016) is the must-read, go-to reference for dealing with all kinds of dementia – from Alzheimer’s, Leukodystrophies, MS, or any neurological disorder. (It is also the best title of all books on the subject of dementia.)

This is the book you’d wished for, when you or a loved one was first diagnosed. It’s what we all need to finally help us articulate or understand how it feels to slowly lose what we’ve always taken for granted: the ability to multi-task, recall words, make decisions, manage money, organize our lives.  A former nurse, Kate had seen this many times. Then eight years ago, at age 49, she, too, was diagnosed.

So Kate has made this book more than you or I could have ever imagined – she not only opens her [still-remarkable] mind to offer her vast knowledge and caring spirit, she also provides over thirty chapters with practical answers to your questions on living – and I mean really living well and beyond – dementia. Keep a pencil or highlighter handy; you’ll want to take notes and share these words!

Kate is living proof of the hope we can still have for a good life even when our cognitive skills change. You can meet her and many others living with dementia online through the wonderful “Dementia Alliance International (DAI), an organization she co-founded for Support and Advocacy of, by and for people with dementia. (In other words, only people with dementia may join, and membership is free.)

If you have dementia, you’re not alone. There are over 47 million people on Earth with dementia. And there’s no shame in it. Read Kate’s book, contact DAI, or attend a dementia conference, and you’ll meet some of the still-active, happy, and fulfilled people who’ve been living well with dementia for 10-20 years. Doing that has helped me discover new ways to enjoy my own life again, eleven years after my first diagnosis. Yes, I, too, have dementia, and I’m still living a good life.”

Not long before she died from cancer (not dementia), the late Susan Suchan, also the winner of the 2nd Richard Taylor Memorial Advocates Award said to me, “Do not stop now; there is still so much work you have to do.”

Thank you to the late Richard Taylor and Susan Suchan, and to Tom, and Jessica, and Mary, and Phil, and everyone… thank for daring to think differently about dementia. I am truly indebted to you all.

19 thoughts on “Rethinking Dementia: Normal Human Responses #11

  1. WOW Kate-this is awesome-congratulations! And by the way-i think all your work is positive and have nothing negative to say about your work EVER! You do a wonderful job👍

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      • Thanks Kate-i am ok thanks-just lots of dramas with my Grandad’s home help and my Grandmas attitude to my Grandad have warn me out. My Grandad is deteriating really fast-has no idea what is happening but still can recognise us. His communication skills has decreased significantly and he can only walk about 100 meters or so know. I think of you too often and it is always lovely to chat on here. I am in the process of looking at rest homes for him. I am going to a rest home on friday to have a look. My Grandma is continually being mean to him-she gossips crap about him behind his back and calls him fat she said to me on the food today that he is getting way to fat-so cruel. She laughs at him. So sad.

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      • Yes, it sure is very difficult and emotional-especially with my Grandma’s attitude and refusing to do nothing and talking crap about him behind his back makes it nothing but raw.

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  2. I am yet to read your book Kate, but in all your work the words that immediately come to mind when I think of you are; inspiration, practical, down-to-earth, hard working, forever supportive, a bloody good laugh and a friend. Carry on doing exactly what you are, in the same way and thank you for creating DAI, a lifeline to so many xx

    Liked by 1 person

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