In my series for Dementia Awareness Month 2016 #DAM2016 #WAM2016 of blogs, today again I continue to remember family and friends who are no longer with us, but who also were diagnosed with any type of a diagnosis of dementia.
Today I remember the late Richard Taylor Ph.D.
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles
Richard Taylor continues to be one of my heroes.
I wrote this Haiku version of an Elegy about Richard which I read out at our online remembrance last year. So often, less is more.
Passionate, real and feisty
Deepest heart and soul
In his final newsletter, he started with, “Hello, again. Still Richard here, still living with more and more symptoms of dementia I can’t seem to work around/overcome.”
Richard always began his videos and presentations with: “Hello. My name is Richard Taylor, and I have dementia, probably of the Alzheimer’s type.”
Hello is such a simple word, but it in some ways it epitomized Richard, as his focus was on our continued humanity, and not on our deficits, and everyone deserves a hello.
Richard was inspirational, and his influence was significant on not only his family and close friends, but also on a vast number of people living with a diagnosis of dementia of this or that type, and those people that care for us, paid and unpaid, around the world.
He was a founding member of DAI, and had the dream for that group for longer than anyone else that I know of. Together, with him, DAI was created; an advocacy and support group, of, by and for, people with dementia.
It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community. But mostly, it was a deep loss for his family and closer friends.
Like hundreds even thousands of people around the world I too had a personal friendship with Richard. I first met Richard online late in 2008, having found excerpts of some of his writing via Dr Google. We communicated regularly after that, via email and even before we met, both said we felt like kindred spirits, on the same journey. Richard led the way for me, as he was the first person with dementia who not only spoke up for living beyond the diagnosis of dementia, he also he showed me it was possible.
His writings were the first I had discovered by a person living with dementia, and in many ways I feel his words ‘saved my life’. By that, I mean he saved me from continuing down the very slippery slope of doom and gloom of dementia, the pathway the medical doctors, health care and service providers also send you upon diagnosis. I had not heard of anyone living so well with dementia, and although I was referred to other books and writing, we were we basically told it is not possible to live beyond the diagnosis of dementia, and these other books whilst very helpful, did not really teach me it was possible.
Richard Taylor taught me that.
Mr Google had become my friend, and back when I was first diagnosed, there was very little being written by people with dementia available online or anywhere, and certainly not about living well with it.
Richard Taylor inspired me not to continue on the downward spiral of Mr Dementia with grace, and with determination to fight for my life and the human rights of all of us facing a diagnosis of dementia, but also to learn to ‘live’ in spite of dementia, and indeed beyond the diagnosis. Richards’s writings were the catalyst for me to start to write about my own experience, and ultimately to find meaning on this wild ride, and his support and friendship kept me going when the ride seemed too rough.
Reading excerpts of his writings was like reading my own story. He helped me find the words to express my own experience. He encouraged me to write, as a way of healing, and of making sense of dementia. He also showed me the way in teaching others, and although I was already standing up and speaking out, Richard kept me going on the days I wanted to give up. He inspired, motivated, and loved us all, and I feel quite sure loved us all as much as we loved him.
Before I met Richard in person, we often said we were kindred spirits. I know he has said that, and felt that with so many others as well. But for me, meeting in person sealed that between us. He was a man of the people, and always opened his arms and heart to us all, without concern for any personal cost to him. I called him the Dementia Rockstar!
We all loved him, and will miss him greatly.
Just like Richard, finding a cure for any of the dementias has never been my priority.
Research into improving the lives of the more than 47.5 million people already diagnosed with dementia is to me, equally important as a cure.
The big Pharmaceutical companies have almost total control of the research industry, and also many of the advocacy organisations, and there really is big money in dementia, which is not always helpful to those of us already diagnosed.
As with any critical illness, and I know we agreed strongly on this point, and we both spoke up for research into improving the care and outcomes for people already diagnosed with dementia.
We must never forget the people who are living with dementia NOW, currently more than 47 million of us.
Our needs are as important as the need to find a cure, and research into living beyond the diagnosis of dementia, and interventions such as lifestyle strategies, non-pharmacological and positive psychosocial interventions and care and support that focuses on improving quality of life are equally important.
Helping people in the future must not be at the cost of the needs of those of us living with dementia today.
Thank you Richard Taylor. We sincerely hope your family and very close friends get some idea today of the sense of love we all felt for you, and get some comfort in that. Our sympathy and sincere condolences go out to them, and to each other.
Just like Richard did, I hope to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!
He also used to say, “If you have not annoyed someone today with your advocacy, then you probably have not done your job!“
More than a year after his death, I feel very confident there are literally hundreds perhaps soon to be thousands of others living with dementia, or caring for people with dementia, who have accepted this call to action, that he so genuinely and proudly began after his own diagnosis of dementia, probably of the Alzheimer’s type.
Together, we can and will change the world for people with dementia.