Greetings,

I am Richard Taylor, from Houston Texas, and I have Dementia probably of the Alzheimer’s type. I represent, although I don’t claim to speak for, more than 500,000 Americans who also involuntarily share firsthand the experience of living with a brain which is being destroyed by Alzheimer’s disease. We are all under the age of 65, I’m still barely in the group at 64, and we all seem to be in the early stages of the symptoms of the disease. More than 5 million other Americans have worn my early stage shoes, and they have now exchanged them for slippers that come with the later stages of this awful disease.

The fact that I know I have Alzheimer’s disease motivates my focus on actively making today better than yesterday, and not hoping tomorrow will be better than today.

When I was first diagnosed with the disease, every time I got out of bed in the middle of the night to powder my nose my spouse would inquire “Where are you going?” I would respond “I’m going to wander naked around the neighborhood” we would both laugh, and then she would fall back asleep. We don’t laugh as much as we used to. We don’t fall asleep as easily as we used to.

Since the diagnosis my relationship with my spouse, my family, and my friends has broadened and in some ways deepened. We spend more time really being together as a family. We talk more, hug more, cry more, and laugh more. We now seem to do each of these activities more, harder, and longer.

We haven’t found THE right way or ways to live with and through this disease. We keep trying until we seem to get it approximately right, and then the disease morphs my symptoms in a new way, and we start all over again — trying to stay just one step behind the disease’s occasional bouts with loneliness, fear, and frustration. My family tries hard every day to enable and support me. I could not be here today, I could not be who I am today without my family’s constant love and support, and for those efforts I publicly thank you all.

My purpose here today is to briefly share with you my experiences with this disease from the inside (me) out (you). I have become a reluctant expert in what’s it like living with Alzheimer’s. I have become an active speaker, sharing my experiences with others and urging my fellow travelers to speak up about their experiences. After all, if we don’t tell you what it’s like to live with the disease how will you ever know? I think, reason, remember using a brain which is quite different from yours. Different in ways I cannot express, in ways no one comes close to fully understanding. On many occasions I cover up these differences, or I am just not aware of them. Suffice it to say for now, our brains are different.

A cognitive disease is different from any other form of disease. I do not have a lump, a rash, a fevered brow for others to see and touch, indicating I have “this or that” disease. My disease has probably been attacking my brain for the past fifteen plus years. Only fairly recently has it overcome my brain’s ability to fight back, and symptoms have spilled out of my mind and into what I say, how I say it, what and how I think, and, of course, what and how I remember.

The disease does not hurt. I don’t see a cloud in front of me. I am unaware when I am “in the disease” – when my thinking, reasoning, and reacting to what is going on around me are being controlled by a brain which has been overwhelmed by the disease and now operates in ways your brains do not.

At first, in its mildest phase, the disease was merely a mild annoyance in regard to how I functioned. Yet the very diagnosis of Alzheimer’s had and continues to have a profound impact on how I feel, on my self-esteem, and on my fears of today and tomorrow. I imagine the disease as always being one step ahead of my ability to manage all its symptoms. Just when I believe I have figured out ways to cope with the current batch of symptoms it has generated between my ears, it morphs me into a new set of symptoms and the chase is on again. To-do lists worked for awhile. There were “to-do lists about to do lists”. Then there were alarms to remind me to look at my “to-do lists about to-do lists”. Now I keep a small tape recorder with me, a poor man’s Blackberry if you will, to preserve my thoughts, and keep me on track during the day.

The consequences of a short-short term memory can be addressed through technology. The personal and interpersonal consequences of this disease are, in my mind and heart, the least attended to consequences of the disease: a changing personality – more withdrawn, more paranoid, more defensive – more fears, more insecurities about myself, my ability to know what is going on around me, a self-awareness that seems to come and go. These kinds of symptoms translate into occasional wandering, more arguments, more paranoia, more insecurity, more of the disease and less of me – these are consequences that my caregivers and I struggle with every day.

Unfortunately, as the diseases progresses, the line between it and me is not simply blurred, it is being erased. I am someone who no one seems to understand — nor can anyone seem to predict what I will do or say in any given situation, especially those that are stressful or occur late at night.

The symptoms are now more than forgotten names, fishing for a word, or occasionally misplacing items. Now I am confronted with an inability to add or subtract, to read, to safely drive a car, to appreciate money. I fixate on my own inaccurate perceptions. I become agitated, and I am now unaware of it while it is happening. As Christina tells me when I declare for the hundredth time that I know the rules of how to play Go Fish: “Grandpa there is Dr. Alzheimer acting up again.”

Please consider and reconsider these concerns of mine: Everyone living with my diagnosis is and will be, until the moment of their death, a whole and complete human being. Every day of my life I will be, in my own mind, Richard. I am neither half-full nor half-empty. I am Richard. I am not fading way. Will you promise to always treat me as Richard? Or will there come a time when I am seen as Richard’s shell? Richard is gone and all that remains is some one, some thing you do not know and cannot understand. Someone who is difficult to visit, to talk with, to love.

I want and need to feel connected to myself, to you, and to today. Please do not exclude me from the decision-making processes that dramatically impact my own life. Ask me, include me, and give me the benefit of the doubt. And for both our sakes, do not lie to me.
I want and need to give and receive love. Even when I cannot remember your name, will you please love me the same as when I could remember your name? I did not forget you; a disease blocks my ability to remember your name. Is our love as unconditional as it was on our wedding day? Get ready because one big test is coming up for this vow.

Treat me with dignity — that is the birthright of every human being. Treat me, speak to me, relate to me as if I were an adult even though I may sometimes act like a child. Treat me as your parent, your best friend. I am still home you know, even if I cannot always answer the doorbell and open the door.

Honor and protect my right to personal privacy.

Help me live in and understand today. All of us share the need to live in, understand, and appreciate each moment of our lives – not just based upon who we were and what we did. I am who I am today. No doubt influenced by my past, but I am not my past. I am who I am today. Help me live in today. Honestly, I do not need much help living in yesterday or last year, or fifty years ago. It is nice to talk about it sometimes. But I need your help in understanding today.

I am fearful about losing my sense of purpose. Why should I get up in the morning? To jog? To play bingo? To do your bidding? To sit in a chair in the sun? To spend the day trying to remember who I was?

Please stop disabling me because I cannot act as I did yesterday. I can still act; do not take that away from me. Treat me as someone you love as I am, not who you wish I was or think I should be. 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.

Please be with people with dementia as 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 the 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.

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 your continuing love. More than ever, I need and want your understanding, your forgiveness, and most importantly your 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 breakdown the barriers that dementia places around my mind and my heart.

Just as I need your love, I still want and need to give my love to you. I still want to interact in a world I do not understand as I did before this awful disease. What really counts for me is to first, last, and always know who I am today. But I need your help in order to achieve that.

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.

And what can be done early on in the disease process? We can talk to each other in ways that are probably unfamiliar and uncomfortable for most of us. We can be more open. We can seek out new ways to show our love for each other. We can as families become closer. For me it is now or never.

You can be watchful of my own behaviors in the name of safety but I ask that, in the name of meeting your own needs, you do not disable me. Consider my need for autonomy and purpose as well as your need of safety and peace of mind.

We will each get through this. There is no question about it. The only really big question to answer is how hard will we make this journey on each other and ourselves? We can, in the end, really only change ourselves, and I could make an argument that I am losing the ability to do that too. I need your help, your flexibility, your willingness to do more than just tolerate me as I am immersed in this disease.

Thank you for allowing me to report on my journey thus far. I hope by knowing me a little better you can know yourself and your loved ones a little better.

~Richard