Hi this is Kate Swaffer from Adelaide in Australia here, speaking to you on the day my first dementia book comes out. Although I’ve not yet seen a physical copy of it, I obviously know what’s in it, although it was written over a year ago, so perhaps I may even have changed my mind on some things! You might wonder why someone with dementia would even want to write a book, for the most part, our experience and stories have been told by people with out dementia, and so it felt important to speak up. That is also part of the reason I started blogging almost every day over four years ago.
Being diagnosed with dementia at the ripe old age of 49 was more of a shock than I like to remember, and I cried for weeks. Some days, I still cry sometimes even all day, but now, never for weeks. It was also a shock for my husband, teenage boys and family and friends. We have had the commonly reported disappearing of some family and friends, but we have also had the support of many who have stayed close to us, as well as making literally hundreds of new friends either online or at events about dementia. For this, I feel incredibly blessed, and many times feel dementia has been a gift to me, not the worst thing that could ever have happened.
Yes it is a terminal illness, and yes, it is nothing like a birthday party most days, and it may not be so great towards the end, especially for those who love and are supporting, but along the way, it has given me a passion and drive to help create change to improve the lives of people with dementia and their families that sustains me and helps me get pout of bed every single day.
Thankfully I have learned to live beyond dementia, alongside dementia in spite of the increasing changes and deterioration of functioning. Tomorrow I will be making a video answering a lot of questions posed to me by the publisher recently but apologise I have not had time to do this for today, but I will talk about a lot of things such as writing this book, and how I have managed to continue to study at university, about what is was like when first diagnosed and the fact that I received very little support to live with, not only die from dementia, and what would have help me and my family in those earlier days, and I will talk about some of the daily struggles, but also of some of the greatest days and the greatest joy of my life.
Thank you for being interested in my book and in being interested in improving the lives of people with dementia and their families and friends. You must be, as if you are here listening to this, that must be true, and I feel deeply honoured and grateful for your presence.