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Coming Together. Creating Community.

Richard Taylor's Remarks

Hello, My name is Richard and I have Alzheimer's disease.

I accept this honor, not just for myself, but also for all my kindred spirits who stand up and speak out.

For in my mind and heart I truly believe there are thousands, if not millions of folks who, when they were at my stage of my declining cognitive skills they too could have been standing here. As for what I did, to bring myself to the attention of this august awards committee: in my mind and heart all I did, was, to simply be myself.

A self who happens to be living with the diagnosis of dementia, probably of the Alzheimer's type. Therefore: I accept this on behalf of all those who stand up and speak out about what it is like to live with the symptoms of dementia. If we do not speak up and speak out, how will others ever know what it is like to live with the symptoms of dementia?

After all, most of you sitting in this audience do not share the same conditions within your hippocampus as I share with 10 million other Americans who are living with some of the symptoms of dementia.

I am neither particularly courageous nor brave - ask the small garden snake who lives in and currently rules my garden! I am Richard, a person living with cognitive skills that are slipping.

I am Richard who speaks from his psychologist's mind and his own heart. I combine them both and offer others my reactions to my life living with dementia.

I thank all the members of the Pioneer Network who were responsible for the decision to grant yours truly this honor.

Legacy, what do I want my legacy to be? Equally important, how can I tell you in ten, now actually 8 or less minutes?

What do I want to be remembered as? A fine fellow? A great father, a wonderful grandfather, a loving husband?

I want to be remembered for my spirit, my commitment, my determination, as one of the first persons to add a voice, a presence to something that was previously just a diagnosis, just a bunch of words. And that voice and those words successfully altered a gentle euphemism for goaded, prodded, relentlessly urged all National and local organizations who use my diagnosis to raise funds, who feature people like me who are living with the disease. I helped begin the process of refocusing their efforts on the whole people who are living with the diagnosis of Dementia.

We aren't saying good-bye. We don't want others to say good-bye to us. We say Hello! And Damn It, that we have to keep telling others this fact of life.

I was and I hope still am a herald, an instigator, an agitator, a voice of urgency and reason for that change. My hope is as a result of my kindling a few sparks, they changed their budgeting priorities. They changed the make up of their boards of directors. They changed their program emphasis - and included people living with dementia, lots of them in each of these areas.

Thus far, I have clearly been one of the first to alert them, and I am clearly one who feels and believes they have much much more to change before it can be considered one of my legacy achievements. I would like to be remembered as a person who openly, directly, honestly, and compassionately witnessed what it is like to live with Alzheimer's. And, as a result of my witnessing, my writings, and being myself in a public way: I made a difference in how many many folks think of themselves and each other when the symptoms of dementia intrude into their lives.

I want to be remembered as having been a forceful, reasoned, sometimes humorous voice in a growing but all too small movement of folks who now stand up and speak out.

I want to be remembered as having been a role model, a catalyst, a leader for other folks in the earlier stages of dementia. I want them to know and see that after the emotional upheaval caused by hearing the diagnosis that there is still much much life to be lived, appreciated, and created.

I want them to know, to feel, dare I say DEMAND to be treated as whole people. Not someone who is in the midst of a long good-bye. Not someone who is half-full and half empty.

I want professionals and caregivers to enable us to remain active, responsible, growing, and involved in a purposeful and a purpose-filled life.

With this element of my legacy quest, I have been modestly successful. I have shared countless tears with kindred spirits. I have shared countless personal moments with couples struggling to keep loving each other, keep supporting each other, as the symptoms of dementia overwhelm and fundamentally change each of them, both of them, and their relationship. I hate this disease!!

And finally, at least for this ten-minute sneak peak at my legacy I leave to you, the members of this audience, the members of the culture change network the opportunity to create your own legacy. For you are the real leaders and change makers of today, and tomorrow. I applaud the blood, sweat, tears. The time, money, effort you have already invested raising the consciousness of "them" whom ever them is for you, I honor your legacy of change that has brought some of our nursing homes, some of our assisted living communities, some of our caregivers to the brink of embracing, translating the words person centered care into HUMANIZING DEMENTIA CARE. I want to stand with you in the quest to make this real for as long as my symptoms will allow.

I want others with dementia to stand up next to you and to be treated as the primary stakeholder when you all change the culture of aging in our country.

Unfortunately as most of you already know, the world of long-term care is full of well-intended and well-meaning folks, who still do not seem to get "it." "It" being that I and folks older than I - I and all the folks like me who are living with declining cognitive skills - we are each, all, and always whole human beings. We are each in our own gloriously unique ways, different. We each have the responsibility, the right, and to a greater or lesser extent, the capacity to be difference makers in our own lives and the lives of others.

I know there are some folks deeper in the symptoms of dementia than I who do not speak. I know there are some forms of dementia other than the one that plagues me that produce many and much more troublesome symptoms than mine. But I still believe you change agents have an obligation to try, to try harder, and to try differently, to involve and communicate with all those whose cultures you seek to change.

I know we share these values: "know each person," "put the person before the task" and develop "relationships" are the key.  Please carry these values into nursing homes, assisted living communities, memory units, and indeed into all of our society.

Please enable, please re-able some of us who have forgotten what it is like to be a whole person. Help us to help ourselves. Help us to help YOU help us live fuller, more joy filled and purpose-filled lives.

Let's change the way aging and growing older is thought of in our country. I am a work in progress concerning how best I can respond to to this challenge.

What of my pre-legacy legacy?

A friend of mine, Kim McRae, asked Joanne Raider, one of the founders of this network we celebrate today, what she saw as my legacy:  Joanne said, "What I know and admire about him, what I will remember him forever for is his persistence, his Insistence that people with dementia be treated as a PERSON. He's unrelenting about it. He doesn't back off!!!!!!!!!!!!!!!!"

That's certainly accurate.

I AM unrelenting. I don't back off. I believe in my heart that that backing off, waiting for others to ever so slowly change their ways and their organization is not what is needed now. Please, all of you: DON'T BACK OFF.

But what is left after I must relent?  After I must back off - in the end - after the end...  The legacy each of us leaves is ourselves.

I would like to be fondly remembered as Richard, the tall guy with the beard who lived for a still as yet to be determined number of years as a giving, challenging, loving and engaging human being. I am Richard who seeks to live a purposeful and purpose filled life up to and through my last breath.

From the instant I have drawn my last breath, all that will be left of me are the memories that others have of me.   How can and does that impact the way they live their lives? The way they see themselves? The way they live with dementia?

Stand up! Speak Out! It's not just all we can do - It's all we must do. It's a moral imperative to re-examine re-value the culture of growing old in our country. Let's all pledge to renew our commitments to inclusiveness, empathy, giving, and loving - and being the leaders and change agents this nation needs.

I am Richard, and I have Alzheimer's disease. Thank you again for this Honor.