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JOAN'S WEEKEND BLOG - March 8/9, 2008-"I AM SOMEONE" - RICHARD TAYLOR HELPS US UNDERSTAND HOW THE AD SPOUSE THINKS AND FEELS
As I explained in yesterday's blog, my husband and most AD sufferers have an extremely difficult time putting their ideas and feelings into words. Not so, Richard Taylor, Ph.D, psychologist and author of "Alzheimer's From the Inside Out". Richard was in Miami recently, and I would like you to read his powerful and insightful words - he is telling us how HE, the AD sufferer, feels about his changing personality and how he would like us to relate to him. I want you to know that when Sid and I went to a conference and heard Richard speak, Sid was absolutely mesmerized. He said that Richard verbalized every thought, feeling, and idea that was in Sid's head. This is lengthy, but I think well worth reading.


You Say goodbye
And I say Hello
Alzheimer’s Foundation of America
Conference, Miami,   Florida
2008
Richard Taylor


Everyone is someone, not simply anyone
Treat everyone the same, by treating them different
I am Richard Taylor, I live in Houston Texas, and I have been living with the diagnosis of Dementia of the Alzheimer’s type for the past 5 years. Currently there are about 9 million people living with one of the diseases of dementia. Of those 9 million citizens, about 5 million of us have one of the diseases of dementia called Alzheimer’s disease. I am one of approximately 500,000 of those people who are under 65 and are in the early stage of the disease.
I speak to people such as you because I want others to see, and feel, and know, and understand, and appreciate that I am someone. Unfortunately, in the eyes of many others, sometimes even the eyes of caregivers, I am seen as less than a complete someone. Just because my memory is failing me, just because the hippocampus region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes I am still a whole and complete someone. I am still me: I am still Richard. I am still grand pa, and dad, and friend, and whole and complete human being.
I am in my mind still and have always been a complete person. I am not becoming any less a person simply because I cannot remember like you, talk like you do, or think like you do. I am not becoming more and more defective. I am no nearer a date certain death than are you.
I know many want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be. I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am, one day at a time. I have a disease that is organically altering who I am, how I think, what I say, and how I see and react to the world. I am changing both from the process of evolution, I am a human being who is growing older, and from the process of revolution, I have a cognitive disease that is fundamentally and irreversibly alerting the ways in which I remember, process information, and see myself, despite all this change between my ears, still, Today, this moment in time I am Richard. I am still and will continue to be until the moment of my death one of the every ones who is someone.
Please do not mourn the fact I am not who I was, or you want me to be, or we both miss this moment when we focus on yesterday or last year or twenty years ago. I and 9 million others with dementia are progressively missing more and more of today. We miss living together today, we miss the chance to love, and to laugh, and to be all we can be today, when we are mourning who I was.
I ask each of you and all of you to be with people with dementia as they are, and who they are today. It is all well and good to reminisce with us, to make contact with us by encouraging us to share memories with you from our pasts, but I too want to live in here and now, and to accomplish that I need your support.
I am having more trouble now than you are accomplishing this life-affirming goal. I do not always understand what is going on around me, why others are doing this or that to me or with me, what happens next, what happens after that.
However, if I want to stay centered in the present, if I want to fully experience your love, the world today I need your support more than ever to live in this moment. The unintended consequences of many loving and compassionate acts from many loving and compassionate individuals is to disable me from being myself, and becoming who you want me to be, and/or who you think I should be.
I am me, and while I’m not always as good at explaining that to you, while my dementing disease may inexpiably change the me I was yesterday or even a moment ago, I am still a whole and complete ME. I may be more agitated, I may be silent for longer periods of time, I may be more difficult to understand, but I am sure you can understand my need to understand I am still me. I am still an adult worthy of and a recipient of your on continuing love. I am still worthy of, I still want to be a recipient of your forgiveness and love.
I am lonely, sometimes for who I was, sometimes because I am losing the ability to understand myself. Nevertheless, I am to the end in need of a sense of presence of myself and what is going on around me. Help me break down the barriers the diseases of dementia place around my mind and my heart.
You can witness to and share your love with me. My heart still hungers to feel love, I still want and need to give my love to a world that I just don’t understand like I did prior to developing this awful disease. You can listen and learn who I am today. It is good to know who I was yesterday and in years past, but what really counts for me is to first, last, and always know who I am today. I want to better know that, and I need your help to understand and achieve that feeling and knowledge.
You can share with me your joy in knowing that you are loved, and you can bring joy into my life by loving me. You can help me communicate my own joy of living. You can help me understand how to forgive myself and others. You can support my efforts to live in the moment, this moment, today, the here and now.
In addition, even as I near the apparent end of my struggle with this disease you can treat me each moment as a whole person.
Am I or will I ever be half-empty or half full? That is the wrong question to ask. That is the wrong way to view me. That is the wrong way to treat me. I am you, only I am a different you. I still need, want, and deserve a sense of today, a sense of dignity, the right to be treated in a truthful and straightforward manner, the right to my personal privacy.
 I don’t claim to know what it is like to have a dementing disease in the minds of everyone, I can only really speak for myself, but will you please consider my and  ask others in shoes similar to mine if  there is in their mind and heart truth in these words.
Richard


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