Remembering Richard Taylor PhD
The following notes are of the Eulogy given representing the members of Dementia Alliance, and from the heart of Kate Swaffer, current chair, co-founder and editor of DAI.
Hello.
A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles (Christopher Reeves)
Richard will continue to be one of my heroes.
I had hoped to write an Obituary to honour Richard, but when I looked up on how to write one, I was directed to all sorts of suggestions, and as I don’t know many of the more personal details of Richards pre dementia life such as birthplace and personal family history which was suggested should be included, I realised the best I could do was to write from my heart.
And so, I decided I would begin with a Haiku version of an Elegy about Richard.
So often, less is more.
Richard
Kind, intelligent
Passionate, real and feisty
Deepest heart and soul
The members of Dementia Alliance International are deeply saddened by the death of Dr Richard Taylor, who passed away at his home on July 25th, due to cancer, and we extend our sympathy and condolences to his wife Linda, son Jason and his whole family, and closer friends. We hope you know how much he was loved and will continue to positively influence the dementia community.
As current chair of DAI, it is an honour and privilege to lead DAI, and to represent our members today in remembering and honoring him. I was privileged to work with him, and call him a friend, and was lucky enough to be in attendance at those early breakfast meetings he encouraged ADI to host during their conferences in 2012, 2013, and 2014.
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 this 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.
As current chair, and also a co-founder, I can only hope we will continue to honour Richard appropriately, as individuals, and through our work in this group.
It is a devastating loss, for each and every one of us as individuals, but also for the global dementia community.
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. 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.
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 46.8 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 almost 47 million of us.
Our needs are just 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.
Finally, many have asked is who will take Richard's place in this fight for equality, and who will be the voice for people with dementia?
I am one person who will do that.
Everyone here today will, I am sure, also fight for equality, autonomy and inclusion. People with dementia, and people without dementia, will do this.
Just like Richard did, Dementia Alliance International wishes to see hundreds if not thousands of people with dementia take his place and all STANDUP AND SPEAK OUT!
And I feel very confident there are literally hundreds or 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.
DAI Member, Leo White made a poignand and personal tribute, ending with reading this famous and apt poem by John Donne
No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend's were.
Each man's death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.
Tributes from members and friends who were unable to attend the online memorial:
To begin, I am starting out with a tribute by a dear friend or Richards, Bettina Hackel from Switzerland, who attended the online tribute, but for reasons unknown, missed out on the chance to participate. Our very sincere apologies Tina, we know how much you loved Richard. Tina posted this on her Facebook page yesterday, and with permission, we are adding it her.
Bettina (Tina) Hackel, Switzerland
THIS IS MY TRIBUTE to yesterday's Meeting HONORING RICHARD TAYLOR.
For some unknown reasons Gmail refused to send my replies to DAI, so I didn't make it to Kate's list. Thank you, Kate, for this wonderful meeting; I could have listened to stories about Richard all through the night!
Hello,
My name is Bettina, from Switzerland. I lived in Florida for ten years with my late husband Alex, who was diagnosed with dementia. I cared for him at home, supported by wonderful and informed Florida folks.
Back in Switzerland I felt miserable. No one wanted to hear from Alex, his dementia, our experiences in Florida.
“Now leave Alzheimer’s behind! Start a whole new life!” so I was told.
In February 2010 I was kinda magically (around some unexpected corners) directed towards Richard Taylor – and there it was, my whole new life!
Richard in his empathetic ways pulled me out of my dark hole.
I found the automated German translations on his website, including his archived Newsletters, bad, even useless. So I offered Richard to translate them for him, and his assistant would publish them in German. This didn’t work very well, and sometimes Richard had no assistant.
So Richard decided to introduce me to the service he used to manage his Newsletters. But first he wanted to know much more about me. He wanted us to work together as friends. There was my new purpose in life!
After a year of communicating online, Richard appeared on my laptop screen with a broad smile:
“Surprise, surprise!” he announced, “we’re coming to Berne! I’ll have a few days, we can meet and spend time together!”
So we did. On our first day we made a roundtrip to the lake of Geneva and through alpine regions. On a stop Richard bought himself a large bottle of Coke.
How did I feel in Richard’s presence for a whole day, as a guide, an admirer and friend to be …
Nervous I was, overwhelmed and happy all at the same time. I felt, Richard was scanning me, highly present and focused.
Richard opened his bottle of Coke and took a good sip.
Then he offered: “Would you like some, too?”
Startled I stammered: “Oh – yes – thanks – but – the whole bottle?!”
“Well, I hope not!” Richard replied with an amused smile.
So I took the bottle and got a sip and passed it back – and Richard calmly gave it to me again – until the bottle was empty. It was a ritual. YES! Now we were friends!
When Richard was back from Europe, I got an email: “YES! I’ll call you today!”
He taught me how to edit and publish the Newsletter, both in English and in German. Sometimes there was an assistant in his office, sometimes not.
When we were alone, we enjoyed to tell each other stories, to talk about our dogs, share experiences and dive into philosophical issues … these were peak moments.
Richard asked me to write a column in his Newsletter. He used Skype when he was on the road to introduce me to friends, and invited me to join online meetings and webinars.
Richard wanted me to become an activist for and with German language people with dementia.
Thank you, Richard!
Tina
Dr Jennifer Bute, FRCGP, UK
I read Richards book 'Alzheimer’s from the Inside out' soon after my diagnosis at a time when I read all the books available on the subject and his was the only one that inspired me. Most of the others were unutterably depressing beyond words I was also inspired that he used his past skills to learn from his daily frustrations and communicate them in a way that was familiar other in order to help and inspire others. This was a real inspiration to me to do the same thing with my past training medical experience and teaching skills. I shall be ever grateful to him.
I remember reading in his book about one incident where his family had completely misunderstood something he said. They certainly loved him dearly but they had completely missed the point. I was struck in such a way that I have never forgotten. We must not assume others understand what we are saying even it is obvious and makes perfect sense to us. it is the misunderstanding of what we say that they are rejecting not us!
I first met Richard 3 years ago in London at the ADI conference when he Kate and I shared the same platform. We became friends and he had the amazing ability to make all his ‘friends’ feel special. He always replied to emails and was always encouraging and interested in what others were doing.
I loved his frustration with the ‘big pharma’ as he called them and agreed with him, also in his stance with the charities that were apparently more concerned with a future impossibility of a single cure (whenever was there one cure for cancer?) than in enriching the lives of those already living with dementia
His cancer inevitably caused a dip but he made an amazing recovery for a time, which said a great deal about his attitude and he always continued to care for others and was involved until the end. I last ‘saw’ him in a video message at a meeting (with Kate) in London when we already knew time was running out.
He was an amazing man and his legacy will certainly live on. Thank you Richard.
Keith OIiver, UK
Kent and Medway dementia Service User; Envoy and Alzheimer's Society Ambassador
Whilst there is a growing number of people coming forward to express what living with dementia is really like, no one has done so with the eloquence, humility and positive impact which Richard brought to the cause.
In preparing today for a radio interview I was mindful of Richard, and turned as I do from time to time to his remarkable book "Alzheimer's From the Inside Out". The book is like the man - inspiring. When I first met Richard at the ADI conference in London in March 2012 we immediately "hit it off". His comment written to me in his book which I eagerly purchased said it all when he wrote,
"To Keith, we are kindred spirits. It is my honour to meet you. Best wishes on your journey. Thank you for making a friend of me. Richard." The honour was entirely mine, and it was to Richard I turned when Reinhard Guss and I were setting up the Forget Me Not group in Kent. Richard's advice then was as always, clear, direct, relevant and thoughtful and extremely helpful.
Richard and I also shared the background of being teachers, he in University and me in Primary/elementary schools. Age of student may have been different but we shared the desire to make a positive difference to those in our care, those who were on a learning journey. Although Dementia brought both our careers to a halt it could never fail to halt this desire, and it is to the world of dementia where his skills were so brilliantly applied.
As I often say, one door closes and one door opens, thank you Richard for helping to prise the door ajar, and then to help push it open wider for those of us with dementia.
Brenda Avadian, USA
Unfortunately, we lost one of the great voices with dementia last month (July 25) –Houston-based psychologist Dr. Richard Taylor who raised awareness by talking and writing about Alzheimer’s from the Inside Out.
Freda Collie, UK
' Altho' you, Richard, have never met me, your online friendship, encouragement, support and information, plus your awareness-raising in the community and amongst medics, have helped me and other people with dementia and carers to keep calm and carry on - even tentatively (or confidently) to take up the baton and run for a little way!
Your newsletter and groups, the webinars etc, your humour, even the FB games occasionally, helped to bring that vital human contact here in my very quiet little one-person residence!
Travel in peace. With our thoughts and prayers.
Thankyou!
Freda
Lilia Mendoza, Mexico
I have met Richard through his book Alzheimer from inside out, we found a Mexican Printer to publish his book in Spanish, I had the privilege to review the translation. In that way we were connected. I admire his concepts, wisdom & most of all his sense of humour. He was really some one very, very special. We all with or without dementia are going to miss him enormously, but he showed us the path & we will follow it. Peace to a very special soul!
Kiki Edwards, Nigeria
How do we make the world a better place? We do so just the way Richard did - by infusing empathy into every individual we encounter. Did Richard know how much of an impact he had and continues to have on Nigeria? I know he saw how I religiously re-posted his messages, all of which were in turn re-posted. Words of wisdom, all of them. An insight into his duel with the fiend called Dementia. In his last posts, it was evident he was struggling, but he still managed to put his thoughts across. I waited for comments. None came. I guess everybody was just like me. Lost for words. Then I remembered some of his postings and videos I saw in the past. People, friends shy away because they don't know what to say, how to act around people diagnosed. At the end of the day, Richard is still Richard, irrespective of his diagnosis, was his message. I can't remember my exact comments to his last posts. It was my usual one-liner. I just wanted him to know we were there with him and for him. Then minutes later the comments started flooding in like a deluge! Yes, we all paused, froze, even. We all tried to visualise what he was going through. We all remembered his "teachings". We all saw him speaking in our head - "I am still Richard".
Richard Taylor PhD, I, and Nigeria thank you.
Please note: Prior the recording of the online Tribute to Richard Taylor, it was announced that with permission from the family, this would be uploaded for others to view, everyone in attendance was given the opportunity to turn off our cameras. Richards family has given consent for us to upload it on our YouTube Channel and share it here. Thank you.