Today i look into personal accounts of living with dementia. whether that is the viewpoint of a person with dementia or that of a caregiver, we look into it from all angles.
Browsing and surfing the net, the name of Richard Taylor kept popping up. Reading his story, I decided that today was as good day as any to introduce his story. It is with incredible sadness, that I also learned that he very recently passed away. But Richard, your legacy lives on and I will still broadcast your story.
Richard’s Story goes like this:
Ten years ago, a noted neurologist told Richard Taylor, “You have dementia, probably of the Alzheimer’s type.”
Six years ago, he discovered that thinking, speaking, and writing about what it was like for him to live with this condition had quite unexpectedly brought him a new sense of purpose to his life.
Today, he speaks and writes of his experiences living with Alzheimer’s from the inside out for two important reasons. First, in the hopes that his presentation will convince folks not living with dementia that folks who are living with dementia are and will always be whole and complete human beings. Still possessing all the needs and wants everyone who does not have dementia possesses. And second, he hopes that his witness will encourage others living with the disabilities associated with dementia to stand up and speak out. After all, if folks living with the symptoms do not speak out, how will anyone really know what it is like live with dementia?
He has literally traveled around the world, many times – standing up and speaking out; meeting with kindred spirits and supporting care partners: sharing his belief that people living with dementia are not fading away, and the diagnosis of probable Alzheimer’s does not signal the start of the long goodbye. He sees everyone as being neither half-empty, nor half-full. It is the wrong the question to ask, the wrong way to look at folks, especially those folks living with the symptoms of dementia.
He promotes what he terms ‘humanizing dementia care’. A transactional approach to caregiving that humanizes the giver and the receiver; both at the same time.
His words are poignant, sometimes blunt, and occasionally reflective of the humor attached even to this unwanted and unpleasant human condition. He is engaged in creating purpose, joy, and love in his own life. And he seeks to convince his listeners, especially those living with cognitive disabilities, that the quality of any one life is determined from the inside out.
This is his virtual home. For the past six years, he has been collecting his thoughts on paper and they are now on the various pages of this web site. You may contact him directly at richardtaylorphd@gmail or leave a question here and he will answer it – not always as fast as you may rightfully expect, but rest assured he will answer it. Thanks for taking the time to see if his experiences, reactions, feelings are of any benefit to you, or those you love.
The Big Idea: Everyone is a full and complete human being entitled to be treated as such regardless of a diagnosis of some form of Dementia or age.
Living with a cognitive disease wrecking havoc with his brain; a disease which is incurable and ends in a death stripped of most of the elements of human dignity; a disease which disrupts and sometimes destroys lifelong relationships, attacks self esteem, and in many cases fundamentally changes a person into someone no one knows – is a life familiar to Richard Taylor. He has for the past five years lived with the diagnosis of dementia, probably of the Alzheimer’s type. Five million + Americans also walk with Richard down this road less traveled. An additional five million Americans struggle with other forms of Dementia. Within the next twenty years, more than thirty five million Americans will be wearing the same shoes Richard wears today.
Refusing to let others treat or view him as an incomplete or damaged person, Richard’s first hand experience, his keen mind, and his ability to turn himself inside out and write down and express his deepest fears and feelings, has led him to his current status as one of the leaders of thought, action, and support for a new respect and approach to elders and to individuals who are living with the one of the 50+ forms of dementia.
He was the first to become sensitize to the relationship between how we treat older people and how we treat people with dementia – as damaged goods, incomplete human beings, with little or nothing to contribute to family or society. At least that is how they were viewed in many quarters before Richard Taylor picked up his pen, and opened his mouth, and started to collect email addresses.
Using himself as the source, he began to write and speak about the disabling ways well-intended people treated their loved ones as they too cope with age and/or dementia. Always speaking from his own life experiences this risk taker exposes himself, his fears, and his experiences every time he write and speaks. His innovative approaches to reabling people who have been culturally conditioned to be less than they can be are now the gold standards for professions who care for older Americans.
Older people and those living with dementia are still repositorites of the life and work experience of America. Their wisdom, and spirt should not be ignored or lost simply because they are old or sometimes confused. Just because people are not exacly like us doesn’t mean they are defective and should be stored in wharehouses with names like tranquil gardens, and memory lane.
Richard’s creativity, drive, intellect and most importantly experience confronted the disease and formed a leader who dedicates his remaining consciousness toward breaking down the stigmas of dementia and age, and giving others the inspiration, knowledge, and comradery to “Stand up and Speak out”. He is the activist who because of his own life circumstances became the leader of the new awareness and recognition of the new faces of Alzheimer’s, the rentless and powerfully persuasive town crier of a new empowering way to relate to people in theat the various stages of the disease, and the elders of our society.
To learn more about him and his legacy, please visit his website: