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Mackey Award Presentation

Richard Taylor, PhD

Johns Hopkins University - Baltimore, Maryland

April 3, 2009

1 - What’s It Like….Hello. My name is Richard 2 fade to picture and I have Alzheimer’s disease. Seven years ago, and after a year of seemingly endless tests, a neurologist said to me “Richard you have dementia, probably of the Alzheimer’s type.” My family and I cried for three weeks, until none of us had any tears left to shed. We didn’t know why we were crying. We didn’t know anything about dementia or Alzheimer’s disease. 3 fade to picture I think we cried because the irrational believe that we actually are always and fully in charge of our future and ourselves was shattered, shattered by the reality of whatever that was to be was going to be different, going to be awful. We cried because we were afraid. Afraid of tomorrow and tomorrow tomorrow. Living with Alzheimer’s disease creeping into our lives and our relationships. We cried because we knew our lives would change dramatically, our plans for our future would change dramatically, and we would be unable to control much of the change.

For three years, I hid in a closet of my own making. I taught for those three years, until one day as my students were presenting their projects I handed my complicated  evidence based evaluation form to one of my then four different assistants and he pointed out to me the form was blank. Unbeknownst to me I had neglected to write anything down. I was in one moment, my own moment, while the world around me was in another moment. I decided it time to retire.

Soon after, I stopped driving. I became an inmate in my own home. I was increasingly depended on others to do for me what I had previously done for myself and by myself. I slept more. I took more naps. I waited each day for my grand daughters to return from school so I could help them with their homework and afterwards play with them.

So I started to write. 4. Fade to picture Each day I would write about the day, how I felt, what I thought about. After all thinking about thinking was formerly my profession. Each morning I would read what I had written the previous day to see if I was still okay. If I could understand it. For I believed at that time 5. Fade to blank that one-day I would wake up and a huge transparent curtain had fallen between the world and me. I would look out through it and not understand what I was looking at, who I was looking at, what was going on. I would look in the mirror and not know who was looking back at me. Others would look through the curtain at me and not know nor understand who I was.

One day I showed some of my writings to a member of my early onset group. He smiled at me and said “And I thought I was the only one who felt this way, who experienced the world this way.”

Then I showed them to a caregiver, and she said, “If only I had known my Dad had similar feelings I would have treated him differently.”

To make this long story just a little longer these writings, quite by an unforeseen cosmic collision ended up in a book. 6. Fade to book cover my book, Alzheimer’s from the Inside Out. The day after the book came out, apparently people thought I was smarter, more interesting, worth listening to and so they started to invite me to speak at conferences, to their groups of caregivers, to speak to the public about my life experiences since I was diagnosed.

At first, I spoke for free. 7. Fade to me speaking I paid my way, I was glad some ones were willing to listen, and I paid my way back home. Then people started to offer to pay my expenses. Great, thought I. Then one day I decided to ask someone to pay for my time. Wow, I had a job again. I had developed without knowing it a new purpose for my life.

I am proud to announce, I now have a new purpose. Now your purpose is not necessarily your job, but it sure helps when they are codependent on each other. 8. Fade in My purpose….My purpose is to speak up and speak out about what it is like to live with failing cognitive abilities, what is it like to live with the stigma, the myths that come with the words “you have dementia or this or that type.”

9. fade in this sentence on slide 8. My purpose is to encourage others living with cognitive decline to speak up and speak out about their experiences.

10. fade in this sentence on slide 8. My purpose is to create a palpable sense of the need to change. To change the National Alzheimer’s Association from a bench research funding and caregiver support organization into the National Alzheimer’s Association. My purpose is to change the way carers see us, appreciate us, treat us. My purpose is to expose professionals to what is like to live with the diagnosis of dementia, probably of the alzheimer’s type from the inside out.

Those purposes have brought me here. I was and still in fact still am surprised, humbled, proud, and thankful for the recognition given to me and my purpose. I thank the Mackey family and Johns Hopkins for this award. In reality this award is really not for me, it really isn’t for Richard Taylor, it is for what I do and say. It is for the power of words when spoken from the heart. It is for the hearts and minds that open by themselves when exposed to a new perspective of what it is like to live with dementia. I just happen to be Richard Taylor , a person who speaks up and speaks about his life experiences living with dementia. 11. Fade in speak out….There could have been any one of more than 5 million people diagnosed with Alzheimer’s and an additional 4 million people diagnosed with Picks, Lewy Body, Vascular, Frontal Lobe, and I could go on and on naming the various forms of dementia that have been discovered by the medical community, any one of these 9 million Americans could have been standing here, had they unconsciously and inadvertently stumbled into my sense of purpose., at my stage of my cognitive decline. However, fortunately for me they did not. So here I stand, and thank you, thank you thank you.

Few people know 12 fade of picture of J.M. that I knew John Mackey. Every three or four years we would visit. I would be sitting in Wrigley Field on some cold and windy Chicago Sunday (the real NFL only played on Sundays in those days), and John was playing as only he could tight end for the Baltimore Colts as they battled my Chicago Bears. I would shout out my greetings and observations of him and his team, and they I am sure heard me, but were too busy to stop and respond directly to me.

13 fade to blank Years later, I am still connected with John through his experiences with frontal lobe dementia. Although frontal lobe dementia is a different form of dementia, it is dementia. Although I have not hassled with security in an air port because I was in one moment while others were in another moment, both at the same time - One time after I had spent an hour in the Kansas City air port looking for the person who was to meet me, although I actually didn’t know what she looked like, after I had been through air port security five times…I decided I needed to get my luggage and keep it with me. So I tried to go through airport security with all my luggage. Luckily for me, they were understanding of me and my disorientation. They actually helped me find someone from the conference at which I was speaking to come to the airport and get me. I had misunderstood - they had misunderstood. I thought they were going to meet me at the airport and they were waiting to meet me at the hotel.

But back to John, and his spouse Sylvia. Through her efforts, by speaking out and speaking up the NFL created a special program to assist the players who suffer from dementia and Alzheimer’s. 14. Fade to picture of J.M. That plan was named the Number 88 Plan, after John Mackey. So in reality Sylvia Mackey should have been the first person to receive the Mackey award. She spoke up. She spoke out. She was persistent and insistent. She pushed and shoved with a palpable sense of urgency. She was difference maker.

To think I can come close to the difference her efforts have made in the lives of many NFL players would be a dream come true for yours truly. 15 fade to blank To realize that my speaking up and speaking out has and continues to make a difference in the lives of people with dementia, in their caregivers, in others is simply amazing to me. Little Dickie Taylor from the South side of Chicago is now someone with a new and reasonably successful purpose in his life. Thank you Sylvia Mackey for being a role model for me. For recognizing my efforts to tell others, what it is really like to live with and in Alzheimer’s disease. After all if people like me, similar to me don’t speak up, how will others, others like physicians, psychologists, social works, university professors, how will they know what it is really like to live with this or that or both forms of dementia? They won’t know.16 fade to words they don’t…They don’t know. They have made it up. They have swallowed the words of others who don’t know, and accepted them as the truth. They have assumed this or that about us. 17 fade to they have decided….They have decided amongst themselves what we really need, what we really want, what is best for us.

18. fade to blank Now, finally, they seem to realize that they don’t know it all. So they have started to listen to us. They have started to ask us what we want, how we feel, what’s going on with and within us. Many still see us as half empty, the positive thinkers see us as half full. Most don’t get “it” We are always full. We are always complete human beings. We are always home. Even when they knock on our doors and we don’t answer. Even when we do answer but they can’t understand us. We are home. Our home. A home fully furnished, just like yours only different. Different and foreign from others who don’t live with dementia. Sometimes different and foreign even to us who live in the home. But nonetheless we are home, damn it.

I once heard a noted neurologist say his job was to identify and salvage what was left of someone’s cognitive abilities. Like we had been in a car wreck, and we needed our fenders straightened. Even when I sit mute in a chair, staring into space, thinking about things you will probably never know. Even then, I don’t want anyone to say - there is Richard Taylor, only it’s not really Richard, it is the shell of Richard, for the real Richard is gone. I am not nor will I ever be a turtle. I will never be a shell of myself. I will always be myself. 19 fade to picture of RT I will always be Richard. And I hope others will always appreciate and acknowledge that fact of my life. I hope others will seek to understand me, as I am, a whole and complete human being.

It is only in the past few years we as a society have begun to recognize people with dementia as beings. 20 fade to blank They were treated as objects. In Martin Buber’s words   people living with dementia were seen and treated as “it” rather than as “thous” We were warehoused. We were seen as being mentally ill, mentally defective, having hardening arteries between our ears.

Now we are in the midst of a person-centered revolution although in fact it is more like evolution. I sometimes wonder aloud what others were centering on if it wasn’t us. Was it their only job security, State and Federal regulations, their bottom line? That is a subject for cultural anthropologists to study.

For me, person centered means treating me as more than just a being. 21 picture of Richard I am a human being. My birthright is to seek to live a fulfilled, loving, purposeful life. Now because of the first causes of dementia, and thus far only God really knows what those causes really are,  Now, I cannot seek to realize that birthright by myself. I forget. I forget statistically and significantly, more than others do. I get more confused, disoriented, bewildered, agitated, withdrawn - you have lots of words to describe both how we feel and how we act. 22. Fade to blank You have lots of theories as to why we seem to feel this way or act that way.

You are developing lots of ways to manipulate our environment to influence our behavior. Give me a yellow plate, place a spoon in my hand, and whisper in my ear “eat this” and I will probably feed myself.

I’m all for improving the environments of people living with dementia, but I have trouble getting excited about having animals, plants, friendly people, soothing colors, and a light and sound room available to calm me when I am agitated. An enriched and supportive environment, one that enables to do more for myself than I could if I didn’t live in an enriched environment arew good things to happen in my life, but they help others almost as much as they help me. They make me even more dependent on forces outside of me to take care of me, to be me.  What I really need is you. What I really need is positive social interaction. What I really need is stimulating and purposeful and purpose-filled activities to fill my day.

There are a very limited number and type of pharmaceuticals that might delay the progression of my condition. Maybe. Of course what is the “normal” progression of the condition that will be slowed? A logical question, without a reasonable answer. For if you know one person with dementia, you know one person with dementia. We are not subjects who can be easily grouped and studied, in spite of the fact that this is what exactly happens in most research.

I stand here with my mouth wide open and my lips around the mythical pipeline of drugs that others have created with their hopes and press releases. The first two pills to come down the pipeline fell on the floor and disintegrated by themselves. I don’t need more pharmaceuticals. If we don’t know how the brain works on a good day, how will we ever know how it works on a bad day? What I need is socialceuticals. Alzheimer’s disease, Dementia is a social disease. The social consequences, the personal impact, the impact on my family are what cry out for social medicine. Yet where are the vast majority of dollars earmarked for research on dementia spent? On a very expensive bench studying this or that molecule. Relative pennies are spent on research conducted in the homes of people actually living with dementia? We need much more psychosocial research. Given the limited dollars, we are presently spending disproportional amounts in the search for a cure vs. the search for evidence-based solutions to everyday day personal and interpersonal problems of the millions and millions of folks around the world who are living with dementia and are living with someone who has dementia.

66,000 Americans died last year of Alzheimer’s related causes. These folks were told there was light at the end of the tunnel; there were breakthroughs in the search for the cause announced at every conference. These folks were left to figure out their own lives for themselves. These folks could have been your folks. These folks needed, five million more of them still need you to help them figure out their lives - how to get along with each other, how to get along with themselves - how to be all they can be - for as long as they be.

And so I come to the concept of enabling. My need and hope for others to begin to understand how to enable me to do more than I can do by myself. What does excite me is the idea that others will love me for who I am today, and not necessarily, who I was yesterday. And here I would like to pause and acknowledge a caregiver in my life who lives just like I said I wanted and need others to live. 23. picture of Linda I love and honor my spouse Linda. Thank you Linda for realizing and acting as if I am always Richard. 24. Picture of RT and Linda (pause a moment and then go on to 25.

25 fade to blank Next I‘d like to discuss what I see as a troubling trend in dementia treatment. There seems a nationwide epidemic sweeping through dementia households to encourage people with dementia to live in the past. “Let’s reminisce about the good old days,” say the children to the parents. “Remember when?” …and if we do remember, smiles appear on everyone’s faces because this is evidence to all that I, their father, mother, sister, loved one is still here.

It has been established that the symptoms of dementia block and/or eat away our older memories after they have consumed most of our more recent and short-term memories. Everyone around us lovingly wants us to be who we were. They understood us then. They knew us then. They could connect with us then.

26. fade in to what about…But what about today? Who enables me to stay in today? This day, my day, your day, is all the day we have to live in together right now. Living in today is easier to you. It comes naturally. Living in today is difficult for me. I do not always understand what is going on around me, or in me. I forget and get confused about parts of today, even before the sun goes down. Today is always a partial mystery to me. Is it any wonder I pull into myself, withdraw, and become paranoid and defensive?

And you offer me as an alternative my yesterdays. But they do not meet my needs today! 27. Fade to blank Why is it for instance that that nice young man comes into my room every night, including weekends, and wakes me up at 4 AM so I can go pee? In addition, if I have a bowel movement he writes it down and there is rejoicing that there was a BM in room 104. Why do you now ask me what I want for breakfast (you have adopted a person-centered approach) when I do not fully understand what breakfast is? Why it is? And what I should know about it. Help me understand today, every day, maybe even twice a day, or thirty times a day. Always introduce yourself. Ask me if I know, or want to know, why you are here, what you are going to do, where I am being taken, why I am going there, how long I’ll be, what happens after that. Tell me the day, the date, the season, something about the weather. Engage me. When you assume I do not need to know, when you act as if my knowing is not your most important priority. When you act this way, it sends an unintended disabling message to me. It tells me my needs come second to yours.

28. Enable rather than Disable Another example of disabling me, when you honestly believe you are enabling me, occurs when you lovingly take some forms out of my own hands because I am not filling them out accurately. You fill them out for me, and you never let me fill out a form in your presences again. When you pick out “the right clothes.” When you speak for me without asking. When you talk about me as if I am not in the room, when I am. While intending these to be loving acts, the unintended consequence is to disable me from my own sense of wholeness, my own sense of self-confidence and self-competency. I must always try to deal with the consequences of a failing and faulty set of cognitive skills. You can choose to engage me, to support me, to offer to provide the skills I am missing to complete my task. Or, you can attempt to be me. To act like me, or rather as the me you want me to be. Often you can do it yourself. It’s quicker that way. You can be sure it was done the right way - your way. I need you to honor my way. How do you know what I want to figure out for myself unless you ask me? 29 fade to blank

The best way to want to stay in today is to have something you really want to do today. Yes, I’m back to a sense of purpose. The best way to live a happy life, the best way to be fully human is to have and live in a purpose.30 fade to It’s not the… When you lose your job, when you can’t drive, when people begin to stay away from you, even friends and family, when you can’t go out by yourself and you find yourself having to adjust your comings and goings to the comings and goings of others - when all this happens almost at once - is it any wonder people with dementia lose their sense of purpose? They cannot access the support they needed to achieve it - driving somewhere, walking somewhere, doing something on your own and by yourself. You have all seen it happening, we sleep more and watch more TV. Our purpose is at best eroding and more likely being destroyed.

So what is left for us? Why do we open our eyes in the morning - to shuffle through another empty, confusing, and ultimately meaningless day? A day that is forgotten as it happens? For me, and dare I speak for us, 31. Fade to we need.. We need your support to redefine our sense of purpose. We need your support to provide opportunities for us to experience what it feels like to be living a purposeful and purpose-filled life every day of our lives.

Some of us need to be reabled 32 fade in reable… They need to relearn that they have the right and the ability, albeit sometimes with your support, to be in charge, as best they can be, of themselves. To be responsible for their own actions. Ask many folks who are deep into cognitive decline to make even the simplest of decisions and they will say, “You decide, it doesn’t matter to me.” Now, how you help us discover and live a renewed sense of purpose is the topic for another time and another speech. But, please, please when you look into the dulled and silent eyes of someone with dementia, ask yourself, ask them, how you can help them find meaningful activities. Meaningful in the sense that they feel good about themselves when they participate in them. Playing Bingo seems to be a great stretch for me when I consider the best use of my time to meet my universal need to feel good about myself. Ask yourselves, “Are my activities entertaining or meaningful and meaning- filled? Do I provide one activity for everyone, or a meaningful activity for each individual under my care? Finally, how many of you just can’t wait until you are old enough to play Bingo 33. Fade in to Bingo… every day, and twice on Saturdays?

34 fade to blank I believe professionals and to a lesser degree, carers have an obligation to do more than love us, or like us, or be kind to us. 35. Fade to were the …Of course, we want and need this - but everyone wants and needs love in their lives. It is the way everyone wants to be treated, to be respected, to be loved, to be honored for being themselves.

36. fade to blank The reality is the progressive form of dementia of this or that type creates new and unique needs in human beings, in us who live with the declining ability to remember and understand and appreciate ourselves, others, our lives, and today. We need your support in a way that is different from how you naturally support others. We need an ever-changing balance between helping and doing, between asking and telling, between assuming we think like you and assuming we don’t think at all or it doesn’t make much difference what we are thinking. These are very difficult tasks, but that is why we pay professionals big bucks, that is why they go to school longer than any human being should endure our education system- people who have studied us, people who are trained to listen to us, people who appreciate us as whole human beings, people who know how to help us understand and fully participate in everything, every time, every moment of our lives as a functioning, purposeful, loved and loving human being. These are the kinds of people, the kinds of services and support we need in our lives.

When I was first diagnosed folks asked me, “What’s It Like to Have Alzheimer’s disease?” I saw and felt the disease as if I was sitting in my grandmother’s house on Irving Park Street in Chicago, Illinois staring out the window, and viewing the world 37 fade in RT through lace… through her lace curtains. I thought I could see everything that was going on, but obviously, my brain had to compensate because I could not actually see through the threads in the lace curtains. Occasionally the wind would gently blow and move the curtains and my view of reality would quickly change. There were knots in the curtain, and I could not see around them so I just sort of ignored the parts I couldn’t see and filled in the missing darkness with my own unique interpretation. It didn’t hurt. I really didn’t know I had it, whatever “it” turns out to be, until I stumbled upon a symptom for which my brain could not compensate. I had to admit to myself, and sometimes show to others I forgot, or I was confused, or I misunderstood, or I wasn’t in their moment - I was in my own moment. 38. Fade to blank

When I was first diagnosed, I turned to Mr. Google and swallowed as many of the fourteen million one hundred web sites with the word dementia on them as I could fit in my brain. I hoped to regain control of my brain through information, through understanding what was happening to me. Information was my self-medication for the fears, anxiety, and depression that overwhelmed me.

Seven years later and I see my state of mind as having slowly changed, slowly evolved into what it is, who I am today. As I hope by now you all realize, I am still Richard. I am still me, but me has changed (haven’t we all?). I am more verbally assertive, some would say verbally aggressive, than I was six years ago. I have rediscovered my temper from when I was two or three years old and I really believed everyone on earth was here to meet my every need and want. And meet them NOW! I blurt out observations and opinions that sometimes shock even me for their directness and sometimes inappropriateness. I fixate, others tell me over and over again, on this or that, to the exclusion of what others see as more important. I forget, lots and often. Sometimes I know I have forgotten as when I am speaking with my granddaughter and I cannot for the life of me remember her name. I do not confuse her name with the name of my other granddaughter; I just do not know her name.

Sometimes I am unaware that I have forgotten, I am confused, I have lost the train of thought; and I ramble on until the quizzical looks of my listener catches my attention. Then I try to cover up, as best I can. I do not consciously try to cover up, it just happens. I forget as if I am dead, there is no recollection, no hint of a recollection, no sounds like, no the first letter is, - I just can’t get to what I am looking for. I don’t have a clue.

Seven years ago, honestly, I could have sat at my computer for two hours and written this speech. Maybe it would need a second draft and maybe it wouldn’t.

Seven years later, today, I have been working on this speech for three weeks. I have probably invested more than 40 hours creating it. Sometimes I feel as if I am hanging on by my fingertips. Sometimes I feel contented where I am. And sometimes I try not to feel, because I know my fears will exaggerate my feelings and cast a dark pall over them.

And, while I have your attention, please include in your support services all people who have all forms of dementia. All too often the words 39. Fade in to Alzh… Alzheimer’s disease takes up all the air in the room leaving those with other forms of dementia wondering who speaks for them, who are their leaders, who wants to understand that they too are, and always will be, complete human beings. 40 fade to blank

Please give full and thoughtful consideration to my appeals for enabling and supporting me to stay in today, every day of my life. Speaking like this has brought new and deep purpose to my life. I know my time is limited to act on and in this new-found purpose.

I am not in any way more than any one of you in the midst of a long goodbye. Yet that is how others characterize me. That is how they look at me, talk to me, talk about me. Please say hello to people who have dementia. Say hello to them every day, every time you meet them. Because for them today is a brand new day. They may never fully figure out today, but they still must live in today.

I have for a long, long time hoped that I would leave this world with a bang and not a whimper. Perhaps this is as close to a bang as I am going to get.

41 fade to I am… I am still, and always will be, Richard. And I have and always will have-to the moment of my death-dementia, probably of the Alzheimer’s type. 42. Fade to richar…

Richard Taylor, PhD

April 1, 2009

5267 words

 Alzheimer’s Disease International

          World Conference, 2009

  Update from a former young-onset early-stage person

            living with the diagnosis of Dementia,

              Probably of the Alzheimer’s Type

                                             Richard Taylor 

Hello, my name is Richard, and I have Alzheimer’s disease. I was diagnosed in Houston Texas, about six years ago. I am in the late stage of early stage dementia, probably of the Alzheimer’s type. For six years, I have been living with the visible and invisible symptoms of failing cognitive abilities.

What you are seeing on the screen is me, my outside persona. You cannot see my symptoms, my progress, my fears, and my constant battle with forgetting and misunderstand. l live with my symptoms of dementia: trying with the support and enabling of my carers, and to the best of my diminishing abilities to avoid the symptoms and to pretend they are not here or there. And always I am attempting to stay just one-step behind them.

I have discovered I cannot anticipate what, when and where they will pop up. I have discovered I cannot be who I was. I have discovered I cannot be what I was. I have discovered I have to me. , I am still all me. I am not half-empty or half full. I am in fact not necessarily still Richard. But I am for sure Richard.

Some, in fact many around me still yearn for and seek out the “Old Richard.” Well I am sort of old, but Richard is new everyday when he opens his eyes in the morning and engages today.

After I was diagnosed, after I couldn’t drive, after friends started staying away, after sometimes heated discussions with family members concerning issues such as who was right and who was wrong, who remembered this or that and who forgot it, who was confused and who wasn’t; After I began to go to sleep earlier, stay asleep longer, take naps, watch TV, watch more and more and more TV - after all this happened over the course of a year I lost my way. I knew I was losing my old self, and my way, my purpose just sort of evaporated in ways I did not at first notice.

I think about thinking. As a psychologist, that is what people paid me to do. That is what I spent too long in school learning how to do. That, I might add is what I did, and I did a very good job of it. Now, I cannot find anyone to pay me to think about his or her thinking, but thinking about my own thinking is after-all free. I do not want to take away my own thunder and trust me; there will be thunder from my plenary presentation later on today. So if there are a few holes in this presentation, rest assured they will be filled in today in my late afternoon address.

Initially when I would tell folks about my symptoms many of their well-intended responses were to tell me that they too shared that symptom. “Oh yes,” they would say, “I forget where my keys are. I used to do lists, and sometimes that was not enough.” I smiled and said “Oh,” and felt like I was being discounted. After thinking about it, I decided folks were not intentionally trying to diminish my symptoms. They were for their own benefit, trying to convince themselves that I had no symptoms. That I was okay. That led me to start asking people what came to their mind when they heard that a good friend like me had been diagnosed with dementia probably of the Alzheimer’s type. Almost to a person somewhere within their rambling explanation were the words “The long goodbye.” That is the stigma, I believe everyone with dementia wears, like a tattoo on our foreheads “I’m in the midst of “The Long Goodbye,” and everyone who does not wear it, fears it, worries about themselves getting it, and sure as hell does not want anyone they know and care about getting it.

I would ask folks why they do not call as much as they used to. And they would respond that they did not know what to say. My routine and immediate response to this was, just say “Hello.” And after thinking about that, I have decided “hello” is a response that people with dementia need every day, from everyone they meet. I have learned  that every day is a new day for me and the others living with declining cognitive abilities. It is a new day in special ways that for folks who do not have the symptoms of declining cognitive abilities it is impossible for them to fully appreciate.

The sense that we will probably go through the entire day and still not figure out exactly what is new about today vs. yesterday, but we will know something is new. So now every e-mail I write, most conversations I begin by saying “hello.” Try it with people who have dementia, and then wait to see what their response is. Listen for what seems to be new in their lives today or in the past week or perhaps in the past month. As a psychologist. I understand that every day is new to everyone. However, the diagnosis of dementia and the mental roadblocks, confusion, and black holes in our memory adds a new dimension to cause our today to be uniquely new from yours.

Several years ago I wrote that I had given up hope. Actually, I should have written I had given up hoping for a cure, in my lifetime or anyone’s lifetime for that matter. I had given up hoping that for me tomorrow would be better than today. I had given up hope that I would ever be my old self again. Instead, I had decided to invest all my energy in today and not tomorrow. I had decided that today was as good as it was ever going to get for me, and that was good enough provided I was fully engaged in today and not sitting around hoping tomorrow would be better.

And so I am fully committed to living in today as best I can. I do not want to live in my past. I want to live in my present. I do not want to speculate about the future. I want to live in my present. To do so, I now need others to help me, to enable me to stay grounded in the moment, the moment that is shared by those around me.

Over the last six years, I have learned that my initial strategy and that of my family: to wait to cross this or that bridge when we come to it - this strategy creates more problems than it avoids. Do not wait to get lost to start talking about how to avoid it, brainstorm together how you can help yourself and others can help you. Do not wait for an auto accident to decide how and when to decide to stop driving. Do not wait until you discover that you feel you are your husband’s nurse rather than his spouse, or you are your wife’s caretaker rather than her lover. Talk openly and often about issues of intimacy and how you can remain best friends.

I realize everyone and every family have worked out rules concerning what they do and do not talk about it. When Dr. Alzheimer’s walks in the door the rules of family openness and communication must change. What worked for 20 or 30 or 60 years will not work for the next 10 or 20. Not to decide to talk about it is in reality to decide not to talk about it, even when “it” is my symptoms and me and I am

in the room with you, struggling with my symptoms. I am also frustrated and struggle with the professionals who try their best to meet my need.

The medical community strains to keep Alzheimer’s disease within their “medical model.” It gives physicians an excuse not to look outside the pharmaceutical industry for other forms of support for people living with cognitive decline. I think we are vulnerable to being led down garden paths by most times true believers (occasional deliberate misrepresentations) to eat this or drink that or act this way. There are individuals reporting amazing reversals of cognitive decline when they did this or that. Sometimes these occur overnight. Since governments do not investigate or verify research on the veracity of this or that, and the promoters promote individuals successes rather than accepted research protocols, the consumer is left to decide for her or his self. So what else is new?

As long as there is no evidence of hurting someone, I believe it is an individual’s right and decision to eat more curry, or blueberries, or vitamin X, Y, or B. The potential harm comes from the hearts and unfounded hopes of folks who are living with some form of dementia. They want to be cured. They want the progress to slow down. In some cases, I believe they “will” it to happen and/or others “see” what they had hoped to “see” or a combination of both. In either case, the value is in and for the individual. If you think you are “better,” if you act as if you are “better” - than for yourself, “you are better.” I have little faith in the medical/pharmaceutical consortium. They will not come up with a “cure,” certainly in my lifetime. They do not understand exactly how the brain works, so until they do so they will not understand how the brain does not work. They do not know how to deliver a cure to specific parts of the brain, short of saturating the body with the “cure,” and that proved a failure with the original vaccine studies.

With a pound of caution and an ounce of this or that - it is worth the risk, especially since I get to define what, and how much of the “risk” The same holds true for caregivers. First, last and always, “do no harm” to yourself. There are risks in “overdoing” most anything, but risks can be identified and consider and an informed decision can be made. There is not an answer to the question “what’s the best way to eat, act, think, and what’s the best stuff to swallow if you have been diagnosed with dementia, probably of this or that type. We just do “it.” And “it” is what we decide “it” is. And how effective “it is to some degree how effective we believe it is, and to some degree how effective it is regardless of our belief in it

What everyone directly and indirectly confronting dementia every day of their lives needs are not more pharmaceuticals. What we need is socialceuticals. We need to relearn how to communicate, how to love, how to get along, how to support and enable each other. We need social medicines, because dementia is for all practical purposes a social disease. The symptoms of the disease have social consequences. The impact of the disease, especially in the early and middle stages is social, not physical.

There is not much, if anything we can do about symptoms, progression, the end - what we can do much about is making sure we all live in today, in the moment. What we can do is join together and everyone identify and live in the midst of a purposeful and purpose-filled life. What we can to is learn to enable each other to be the most enabling caregiver, the most loving, open and supportive person with dementia, the most effective Alzheimer’s Society we can be. We won’t “beat” Alzheimer’s and related and unrelated dementias, but we can all do a lot better at making the time we spend with each before the symptoms close in around us the best they can and should be. Filling out wills and forms is not the answer. Finding out more information is not the answer. Going to more and going more often to doctors is not the answer. And neither is taking two hands full of pills instead of one hand full. For me, for us, our lives will be changed and supported for the better in fact the best if we practice listening to each other. If we accept people for who they are today. If we enable and don’t disable. If we reable when necessary. It’s not how we solve problems that will mark out success as a person, as a couple, as a nation, and as a world. It is how we anticipate and avoid them. It is how we keep them from happening. It is in my sometimes-humble opinion no different with dealing with dementia. Hello and thank you . I am still Richard, and I still have dementia, probably of the Alzheimer’s type. 

Richard

March 25, 2009

 Singapore, Alzheimer’s Disease International Annual Conference

                                         Final, Final

                                        March 26, 2009 

              What’s it Like to Live with Alzheimer’s Disease?

1 - What’s It Like to Live with Alzheimer’s Disease  Richard Taylor, Ph.D.         richardtaylorphd.com  richardtaylor@gmail.com

2. fade to blank

Hello, my name is Richard 2. Picture and I have Alzheimer’s disease. 3. Fade to next picture Six years ago, after undergoing more than a year of testing everything from my urine to my memory, a neurologist in the United States of America, Houston, Texas to be exact, walked into his office, sat down at his desk, stared directly at the desktop, and said to me. Richard 4. Fade to next picture you have dementia, probably of the Alzheimer’s type. What he said after those words my brother 5. Fade to next picture nor my wife 6. Fade to next picture nor I can recall. We drove home in silence. As I entered my house. I was overwhelmed with emotion and began to cry hysterically, I ran out into the backyard crying. Only to have my wife 7. Fade to next picture suggest I should come back into the house, because the neighbors would think she was hitting me. Everyone in my family cried for three weeks. 8 fade to next picture We cried until we no longer had tears to shed, and we were all emotionally exhausted. The irony was - here I was a PhD, a psychologist, with little to no knowledge of dementia, much less dementia probably of the Alzheimer’s type. We were crying for ourselves and we were crying for each other. We were crying for our future, a future turned upside down 9. Fade to next picture and inside out by the unexpected visit of Dr. Alzheimer, and his sticky footed army who now apparently were and still are tramping down brain cells between my ears.

After I ran out of tears. I turned to Mr. Google 10. fade to picture of Google page and opened many of the 16,700,000 WebPages containing the word Alzheimer’s. It was quite filling, but not very satisfying. Like many folks with too much education, I had hoped to calm my fears with vast amounts of information. I thought I could control my out of control fears of tomorrow by understanding what was happening today. It did not work. One fact I discovered in my internet wanderings burned into my consciousness 11. The Average Age lifespan of someone diagnosed with dementia is 8 years from the day of diagnosis -”the average lifespan of someone diagnosed with dementia is eight years from the date of the diagnosis.” Naturally, I began to prepare for my own death. I dragged my family down with me, a fact that to this day sometimes upsets them and still troubles me for doing it in the first place. I went to my local Alzheimer’s Association, and they told me I must get my affairs in order. I checked out black-and-white videos from their library and saw people in the latter stages of the disease.

I was being pro-active. I was practicing what professionals preach. Three years later, another fact jumped off a webpage I was reading. 12 fade in - The average age of someone who is diagnosed with dementia is 72 years old. “The average age of someone who is diagnosed with dementia is 72 years old.” Wow,” I thought. I was only 62 at the time. Therefore, 72+8 equals 80 my hand held calculator told me. And, I must confess I have always thought I was slightly above average. I had 18 years left. “Hooray!” thought I.

Fast-forward to today. 13. Fade into picture Here I stand, 66 years of age, probably in the latter stages of early stage dementia, probably of the Alzheimer’s type. 14 fade into picture I am speaking to angels from all parts of the globe who watch out and support millions and millions of folks like me, living with declining cognitive skills. What to say? 15 fade to blank So much, in so little time. So complicated, and so simple, both at the same time.

Difficulties are compounded by a “Cassandra” effect. As I am sure the members of the Greek Alzheimer’s Society already know, the name Cassandra is associated with the richness of myth from Greek mythology. 16 picture of Cassandra and Ajax Cassandra was a daughter of the King of Troy. Struck by her beauty, Apollo provided her with the gift of prophecy , but when Cassandra refused Apollo’s romantic advances; he placed a curse ensuring that none would believe her warnings. Cassandra was left with the knowledge of future events, but could neither alter these events nor convince others of the validity of her predictions. 17 fade in - You have knowledge of the future events, but you can neither alter these events nor convince others of the validity of your predictions And isn’t this where many of you find yourselves when talking to your media, your funding sources, your governments, and the world? You, and I, show the hard data, show the projections, show what Alzheimer’s will do to the world’s population, and yet, if we are lucky, our words end up on the back page of the newspaper, at the end of newscasts, or on the cutting room floor. 18 fade to blank

So as a preface to my remarks, I urge you to stand up and speak out. Though we are often ignored, we have a duty to stand up, speak out, and come out of our closets. In the USA, AIDS research gets twice the amount of funding as does Alzheimer’s disease, yet less than half as many citizens are diagnosed with AIDS as are diagnosed with dementia. Mind you, I’m not opposed to funding AIDS research, but when there are a limited number of dollars available for research, the bulk goes to those who stand up on tables and speak out, not to those of us who retreat to closets or pretend there is nothing wrong with us. At this point, I this point I used to jump up on a table and speak out. But ever since I fell off a table in Little Rock Arkansas, I just speak of this rather than do it.

The Cassandra paradox we find ourselves in is based on a simple truth: I cannot claim to speak for anyone other than myself. 19 fade to If you have met one person with dementia: you know only one person with dementia. If you have met one person with dementia: you know only one person with dementia. Each person’s life has evolved differently. Each person’s brain creates a unique reality for him or her. Each is cursed and blessed with the ability to think about their own thinking. Thus, any cognitive disorder is by definition difficult to catalog, understand, much less predict or alter through eating more blueberries, playing more games on the computer, or psychopharmacology. Because there is no one certain description of Alzheimer’s, Cassandra’s curse makes it difficult to explain to the world what we know.

In response, we must focus our vision. 20 fade to blank

So, exactly what is it that I want to get off my chest? What do I want you difference makers, you leaders, to know that only I can know because I have dementia? What do the Cassandra’s of dementia need to hear from people who live with the disease? This I see as the primary reason I have been invited here to speak.

I want you to take away with you one fact about me, and several ideas about how to treat me and others who face the challenges of dementia. I want and need you to help me as my cognitive skills decline . I want you to enable me to hold on to the world for as long as humanly possible.

First, I want you to know, appreciate, and act as if I am a whole person. That is the fact I hope no one ever forgets. 21 I want you to know, appreciate, and act as if I am a whole person. For indeed I am, and will be up to the moment of my death. I am not half-full, nor half empty. I never, ever want to hear you say as I sit mute in a wheel chair, lay in bed, or wander around my village “there is Richard Taylor, only it’s really not Richard, it’s just Richard’s shell. He unfortunately is gone.” I am not now, nor will I ever be reduced to existing as a turtle. 22 I am a Person  I am a whole human being Just because when you knock on my door I don’t answer, or I answer and I don’t know who you are, or you don’t recognize me: That does not mean I am anything less than a whole and complete human being. It is everyone’s birthright to live a full, complete, joy filled, loving, satisfying, and purposeful, and purpose-filled life. 23 fade to blank In other tragedies, for example, when someone loses a leg, their family, the community, the government, and the world rallies around them and seeks to provide a prosthetic leg. When a human being is losing the ability to control some of her or his cognitive functions, the family cries, the community draws away, the governments are too busy saving their banking systems. For better or worse the world depends on the people seated in this room to make it right for people living with the symptoms of dementia.

“This is not fair.” say you.”Certainly”, say I! “We are so underfunded.” you complain? “Most certainly,” respond millions of human beings living with declining cognitive  abilities.” My staff and I arefeeling overwhelmed.” you tell your Board of Directors. “And therefore…” say I. But you are the people who can most directly impact how I and other human beings living with and in a dementia, probably of this or that type, can continue being ourselves, to continue having a complete and whole human identity.

Now I want to speak briefly about your governments, for they are, in my mind, the organizations whose sole purpose is to do for its citizens what each individual citizen cannot do alone. 24 Governments are the organizations whose sole purpose is to do for its citizens what each individual citizen cannot do alone.  Governments should keep me safe from invaders. Keep the air I breathe and the water I drink pure and safe. Do something now about global warming. And oh by the way, assume the leadership in organizing your resources to affirmatively prepare for the tsunami of persons living with dementia such as myself. 25 Governments should Lead  Governments should mobilize resources.  Governments should plan for what will inevitably impact most of the citizens who elect and support it.

For even now, the waves of baby boomers are nipping at the ankles of their governments to do something about the dementia tsunami. A wave that will sweep away memory, competence, and eventually millions upon millions of lives. The flood the wave leaves behind will drown me and many, many others, and bankrupt social services. While at the same time shredding the safety nets for people who cannot help, much less cure themselves of their failing cognitive skills. This year in my country alone, 67,000 citizens will die of dementia-elated causes. That is the equivalent of 170 Boeing 747 aircrafts crashing, all within a year’s time.

And now to speak directly to you, 26 You are the difference makers in my life. You are leaders more than doers. the difference makers, the leaders, the “go to” folks when it comes to dealing with the issues of Dementia and its interrelated forms. My family and I do not have the resources, both financially and emotionally, to successfully cope with this affliction by ourselves. We look for leadership from our leaders, from our Alzheimer’s Societies to do more than raise money for research. We look to you to do more than provide information, group experiences, places to store us for a day, and pamphlets and forms addressed to meet the present and future needs of our carers.

But research is an easy bucket to throw money into. There are clear markers of success—were symptoms lessened or slowed? Was empirical evidence found as to causation? There can be clear answers if research worked. We have thrown as much money as fast as we can for twenty-five years in search of the cure pill. And how much closer are we today than Alois Alzheimer was?

Similarly, money given for caregivers is money well spent, but it is also money easily spent. I assume heaven loves and supports caregivers. I know I am here primarily because my wife, Linda, 27 insert picture has given more then I can imagine to enable me to give speeches like this. I would like to acknowledge her as the one who made it possible for me to be here, the person whom I love and who loves me every day. 28 insert picture She loves me as I am, not who I was. My wife Linda is here and I thank her in front of the world for being my partner down a road neither of us wanted nor expected to take. 29 insert picture Thank you Linda. I love you. I love her and try to appreciate the difficulties she faces with a, pardon the expression, pain in the butt like me. She is a saint and such people need to be supported. 30 fade to blank

And now to speak of my personal concerns as a person living with the disease, and to share with you the questions I have heard from the voices of hundreds of others in my same shoes . 31 fade to picture 32 fade to picture I ask some, perhaps most of you: Why isn’t your first priority - a priority made clear in your budgets, your staffing, your fund raising - why isn’t the number one priority seeking to understand the psychosocial needs of those in whose name you raise your budgets? Why don’t you do first things first - directly support your citizens living with Alzheimer’s disease? Why must some of you spend a significant portion of your budget on research for a cure? 33 fade to picture Why do you so over promote your quest for a cure, when the roadsides are littered with individuals who already have the disease and are not being served by you? Why does it seem and feel to me and too many as if you are the Alzheimer’s carers society? Or the Alzheimer raising funds for a cure association? Please, first things first! Be THE Alzheimer’s Association or Society.

I want everyone one in the world living with dementia to stand up 34 scroll this then hold on screen

Richard’s call to action

Stand up! Speak Up! Do not become a victim of your own silence. 
Speak for yourself and those who will follow.

Ask Carers and Friends to do the same. 
Today will never be here again.

Time is of the Essence! Use it wisely! 
Tell as many people as possible your  perceptions of your interactions with 
 professionals, with carers, with friends, with strangers, with your government. 
They will not change unless they know, and    they cannot know unless and until you 
 SPEAK UP! 
Seek to create a Palpable Sense of Change and of Urgency! 
 
and speak out. To tell others what it is like to live in and with dementia. And, appeal to everyone in this room to welcome and encourage their input. How many societies in this room have individuals living with dementia on their boards of directors? What percentage of your board is made up of people with dementia? How many of you form advisory committees composed of people with dementia for every one of your programs designed to support people with dementia and their caregivers? How may have yearly in-services for their staffs during which they meet and work with people with dementia? How many of you will return home to an office filled with volunteers living with some form of dementia? 34 fade to blank We do not bite. We may sometimes need an explanation; we may need to be told several times, we may get confused in ways you are not. But does that mean we should not be full partners with you in our crusade? It means you may sometimes have to do your business in less efficient ways. It means there may be mistakes and misunderstandings in your office that do not crop up in the offices of the Cancer Society. You are for God’s sake The Alzheimer’s Society! Let us in! Affirm our worth by partnering with us.

Professionals, the medical community, even carers know what they know, but they don’t know, they can’t know us unless and until they make and take lots of opportunities to talk to us, and most importantly, to listen to us.

Next I ‘d like to discuss what I see as a troubling trend in dementia treatment. There seems a worldwide epidemic sweeping through dementia households to encourage people with dementia to live in the past. “Let’s reminisce about the good old days” 35 fade in     “Let’s Reminisce about the Good Old Days” say the children to the parents. “Remember when?” …and if we do remember smiles appear on everyone’s faces because this is evidence to all that I, their father, mother, sister, loved one is still here.

It has been established that the symptoms of dementia eat away our older memories after they have consumed most of our more recent and short-term memories. Everyone around us lovingly wants us to be who we were. They understood us then. They knew us then. They could connect with us then.

But what about today? Who enables me to stay in today? 36 fade in What about today? Who enables me to stay in today? This day, my day, your day, is all the day we have to live in together right now. Living in today is easier to you. It comes naturally. Living in today is difficult for me. I do not always understand what is going on around me, or in me. I forget and get confused about parts of today, even before the sun goes down. Today is always a partial mystery to me. Is it any wonder I pull into myself, withdraw, and become paranoid and defensive?

And you offer me as an alternative my yesterdays. But they do not meet my needs today! Why is it for instance that that nice young man comes into my room every night, including weekends, and wakes me up at 4 AM so I can go pee? In addition, if I have a bowel movement he writes it down and there is rejoicing that there was a BM in room 104. Why do you now ask me what I want for breakfast (you have adopted a person-centered approach) when I do not fully understand what breakfast is? Why it is? And what I should know about it. Help me understand today, 37 fade in Help me, enable me to understand and appreciate today! every day, maybe even twice a day, or thirty times a day. Always introduce yourself. Ask me if I know, or want to know, why you are here, what you are going to do, where I am being taken, why I am going there, how long I’ll be, what happens after that. Tell me the day, the date, the season, something about the weather. Engage me. When you assume I do not need to know, when you act as if my knowing is not your most important priority. When you act this way it send an unintended disabling message to me. It tells me my needs come second to yours.

Another example of disabling me, when you honestly believe you are enabling me, occurs when you lovingly take some forms out of my own hands because I am not filling them out accurately. You fill them out for me, and you never let me fill out a form in your presences again. When you pick out “the right clothes.” When you speak for me without asking. When you talk about me as if I am not in the room, when I am. While intending these to be loving acts, the unintended consequence is to disable me from my own sense of wholeness, my own sense of self-confidence and self-competency. I must always try to deal with the consequences of a failing and faulty set of cognitive skills. You can choose to engage me, to support me, to offer to provide the skills I am missing to complete my task. Or, you can attempt to be me. To act like me, or rather as the me you want me to be.38 fade in  Please don’t disable me. Please enable me

Often you can do it yourself. It’s quicker that way. You can be sure it was done the right way - your way. I need you to honor my way. How do you know what I want to figure out for myself unless you ask me?

The best way to want to stay in today,is to have something you really want to do today. The best way to be a human being is to have a purpose. 39 Everyone needs a purpose. Everyone needs to live a purposeful and purpose filled life. When you lose your job, when you can’t drive, when people begin to stay away from you, even friends and family, when you can’t go out by yourself and you find yourself having to adjust your comings and goings to the comings and goings of others - when all this happens almost at once - is it any wonder people with dementia lose their sense of purpose? They cannot access the support they needed to achieve it - driving somewhere, walking somewhere, doing something on your own and by yourself. In developed countries, we sleep more and watch more TV. I confess I do not know for sure how the majority of people living with Alzheimer’s in our world spend their time. My world is probably not the world of, dare I say, most folks living with dementia in this world. But I do know everyone, in every shack, hut, home, community, village, city, state and nation of the world who is living with dementia is losing or has lost his or her purpose for living. I do know their purpose is at best eroding, and more likely being destroyed.

So what is left for us? Why do we open our eyes in the morning - to shuffle through another empty, confusing, and ultimately meaningless day? A day that is forgotten as it happens? For me, and dare I speak for us, we need your support to redefine our sense of purpose. We need your support to provide opportunities for us to experience what it feels like to be living a purposeful and purpose-filled life every day of our lives.

Some of us need to be reabled. 40 fade in  40 fade in - Reable some Enable all Many who have withdrawn into themselves will and/or can no longer make choices for themselves. They need to relearn that they have the right and the ability, albeit sometimes with your support, to be in charge, as best they can be, of themselves. To be responsible for their own actions. Ask many folks who are deep into cognitive decline to make even the simplest of decisions and they will say, “You decide, it doesn’t matter to me.” Now, how you help us discover and live a renewed sense of purpose is the topic for another time and another speech. But, please, please when you look into the dulled and silent eyes of someone with dementia, ask yourself, ask them, how you can help them find meaningful activities. Meaningful in the sense that they feel good about themselves when they participate in them. Playing Bingo seems to be a great stretch for me when I consider the best use of my time to meet my universal need to feel good about myself. 41 Fade to Blank Ask yourselves, “Are my activities entertaining or meaningful and meaning- filled? Do I provide one activity for everyone, or a meaningful activity for each individual under my care? Finally, will any of you die unhappily if you do not get to play more 42 flashing pop up  Bingo! Bingo? 43 fade- to blank

I believe professionals and to a lesser degree, carers have an obligation to do more than love us, or like us, or be kind to us. Of course, we want and need this - but everyone wants and needs love in their lives. It is the way everyone wants to be treated, to be respected, to be loved, to be honored for being themselves.

The reality is the progressive form of dementia of this or that type creates new and unique needs in human beings, in us who live with the declining ability to remember and understand and appreciate ourselves, others, our lives, and today. We need your support in a way that is different from how you naturally support others. We need an ever-changing balance between helping and doing, between asking and telling, between assuming we think like you and assuming we don’t think at all or it doesn’t make much difference what we are thinking. This is a very difficult task, but that is why we pay professionals - people who have studied us, people who are trained to listen to us, people who appreciate us as whole human beings, people who know how to help us understand and fully participate in everything, every time, every moment of our lives as a functioning, purposeful, loved and loving human being.

When I was first diagnosed folks asked me, ” What’s It Like to Have Alzheimer’s disease?” I saw and felt the disease as if I was sitting in my grandmother’s house on Irving Park Street in Chicago, Illinois staring out the window, and viewing the world through her lace curtains. 44 fade in picture here I thought I could see everything that was going on, but obviously my brain had to compensate because I could not actually see through the threads in the lace curtains. Occasionally the wind would gently blow and move the curtains and my view of reality would quickly change. There were knots in the curtain, and I could not see around them so I just sort of ignored the parts I couldn’t see and filled in the missing darkness with my own unique interpretation. It didn’t hurt. I really didn’t know I had it, whatever “it” turns out to be, until I stumbled upon a symptom for which my brain could not compensate. I had to admit to myself, and sometimes show to others I forgot, or I was confused, or I misunderstood, or I wasn’t in their moment - I was in my own moment.

Six years later and I see my state of mind as having slowly changed, slowly evolved into what it is, who I am today. 44 fade in picture here As I hope by now you all realize, I am still Richard. I am still me, but me has changed (haven’t we all?). I am more verbally assertive, some would say verbally aggressive, than I was six years ago. I have rediscovered my temper from when I was two or three years old and I really believed everyone on earth was here to meet my every need and want. And meet them NOW! 45 fade in picture here I blurt out observations and opinions that sometimes shock even me for their directness and sometimes inappropriateness. I forget, lots and often. Sometimes I know I have forgotten as when I am speaking with my 46 Fade in picture here granddaughter and I cannot for the life of me remember her name. I do not confuse her name with the name of my other granddaughter, I just do not know her name. 47 fade to blank

Sometimes I am unaware that I have forgotten, I am confused, I have lost the train of thought; and I ramble on until the quizzical looks of my listener catches my attention. Then I try to cover up, as best I can. I do not consciously try to cover up, it just happens. I forget as if I am dead, there is no recollection, no hint of a recollection, no sounds like, no the first letter is, - I just can’t get to what I am looking for. I don’t have a clue.

48 fade in picture Six years ago, honestly, I could have sat at my computer for two hours and written this speech. Maybe it would need a second draft and maybe it wouldn’t.

49 fade in picture Six years later, today, I have been working on this speech for three weeks. I have probably invested more than 30 hours creating it. Sometimes I feel as if I am hanging on by my fingertips. Sometimes I feel contented where I am. And sometimes I try not to feel, because I know my fears will exaggerate my feelings and cast a dark pall over them. 50 fade to blank

And, while I have your attention, please include in your support services all people who have all forms of dementia.52 scroll — There are over 100 different diseases associated with the clinical symptoms of dementia among them are:………………………………………..

All too often the words Alzheimer’s disease takes up all the air in the room leaving thoseers with other forms of dementia wondering who speaks for them, who are their leaders, who wants to understand that they too are, and always will be, complete human beings. 53 fade to black

I do not think I am Cassandra now, this audience is proof that people listen in this world. And it is not that I am still Richard. It is that I am Richard. 54 fade in  and slowly grow it -   I am Still Richard

Please give thoughtful consideration to my appeals for enabling and supporting me to stay in today, every day of my life. Speaking like this has brought new and deep purpose to my life. I know my time is limited to act on and in this newfound purpose.

You are, to an extent greater than all the other citizens of our world, - you are a large part of my future. My future in large part is in your hands and the hands of your organizations.

I have for a long, long time hoped that I would leave this world with a bang and not a whimper. Perhaps this is as close to a bang as I am going to get.

I am still, and always will be, Richard. And I have and always will have-to the moment of my death-dementia, probably of the Alzheimer’s type. 55 fade in

richardtaylorphd@gmail.com

richardtaylorphd.com

Richard Taylor, PhD

March 25, 2009

Alzheimer’s From the Inside Out
January 2009, Issue #11
 

Hello
 
   Thank you for opening my newsletter. I am Richard and I have been living with the consequences of declining cognitive abilities for the past few years. I have been diagnosed as having dementia, probably of the Alzheimer’s type.

  This has been a very interesting month for me. I visited with what is surely one of the best, well developed, and largest Early Onset groups/programs (Without Warning) I have ever seen. I am sure there are others out there; they just have yet to invite me to visit with them. I also spent some time with the staff and some participants in the Memory Bridge program, another example of a “best practice.” I encourage you to click on these wordsWithout Warning and Memory Bridge and explore their web pages.

  Keep those cards and e-letters coming; I read and respond to every one of them. I deeply appreciate your affirming feedback. Please consider going to my web site and checking out its new features.

Thank you for taking the time to read this.

Richard
 

 A half a step away from the past, but is it now in the right direction! 
 
Hello
 
  The New Year’s greeting (semi disguised fund raising letter) from the National Alzheimer’s Association contained this interesting sentence:

  “We look forward to the upcoming year as we continue to provide educational programming and increase our efforts to advance much-needed research on preventing and possibly even curing Alzheimer’s disease.”

  Have they forever given up their 26-year quest to for sure find a cure for Alzheimer’s disease? What about the much-needed research on the psychosocial needs of people who are living with the symptoms of dementia? Are they really funding research on how to prevent Alzheimer’s disease? What about preventing the other dementias?
 
  Hands in the audience if you truly believe dementia can be prevented? I am trying to cope with its symptoms. I believe I inadvertently prepped my brain to better cover up the symptoms, disguise them, and work around them. But I believe “brain games” do not and will not “prevent” dementia.

  It seems as if their vision of a world without Alzheimer’s is now the vision of a world without Alzheimer’s after everyone who presently has it dies, and the Association has funded research that discovered the way(s) to prevent anyone else from getting it.

  But what if you can’t “get” Alzheimer’s or Lewy Body or frontal lobe, or any of the other forms of dementia? How can “it” ever be prevented since the only real almost predictor of these conditions is age. What if dementia is a condition of an aging brain? What can the National Alzheimer’s Association and 40-60% of its budget expenditures on research do about my brain growing older?

  And when they are forced to lay off program staff members for lack of funds, their claim to continue to provide educational support rings hollow: especially in the light of the tsunami of dementia sweeping the country. Currently they are not providing educational support to even a simple majority of folks dealing in some direct way with dementia. They can’t expand their education support while shrinking the staff that provides the services. And, the need, the demand of education services increases every year.

  It’s hard to imagine what they are looking forward to doing this year! And even harder to imagine what they can or will accomplish given their apparently shifting priorities. Most unfortunately for all concerned they still don’t seem to get “it.”

Richard
 
Hanging on to yesterday vs. being in today

Hello
 
  Stay with me Today!

  I think there is too much emphasis on helping people with dementia hang on to yesterday (something caregivers need) vs. helping people living with dementia being, understanding, and appreciating today (something all human beings, especially people living with failing cognitive skills need). We need less memory books and video and more cues, memory helps and support to know and understand what is going on around us and within us today.

  So what if we forget today 1,000 times a day. We still need to live in it. We still need to understand it and feel a sense of ownership of it. Otherwise, what is left for our minds to work on, to understand - yesterday? Twenty or fifty years ago? 
 
  It takes more time to enable and support us with our struggle to understand today. It takes increasingly more time and effort the deep we sink into the symptoms to support our need and want to stay in today. Helping us hang on to yesterday requires less time. Make us a book of family photos, put a little shadow box outside our room with things from our past in it, give us some old dolls or clothes to fondle or wear - then leave us alone, go about the rest of your day.
 
  The emphasis on memories and yesterdays unintentionally tells our ever-confused hippocampus to focus on the past and pay less attention to today. Today seems to take care of itself as far as we are concerned. Other people make decisions for us, lay out our clothes, dress and wash us, take us to the bathroom, buy our groceries, cook for us, and keep calling us finding out what they can do for us today that we haven’t/can’t do for ourselves today. So why not spend some time relaxing and drifting out of today and listening to old tunes, watching old movies, talking about the past and let today take care of itself?

  Regardless of how many plaques and tangles we each have in our respective brains we are all still what we think we are (Rene Descartes was right, sort of). Think about yesterday and guess who you are? When others around you treat you as if you were simply a carbon (sorry, Xerox) copy of yesterday or the past five or ten or twenty years, when others see us as evolving and growing old as they see themselves evolving and growing old they are naturally inclined to see in us their own need to enjoy the past, but live in the present. They sometimes escape to the past to avoid the problems of today, but then they must return to day. There is no pressure on us to return to today, because there is less and less need for us to return.

  Not so!

  Spend more times thinking of creative ways to support and enable us to stay in today, to understand what is happening around and to us, to structure activities so we must make our own decisions - today.

“Make it so.” Please!

Richard
 
Links
 
Smile, Breath, Go Slowly…. Thic Nhat Hanh
Birth Name: Nguyen Xuan Bao
Place of Birth: Tha Tien, Quang Ngai Province, Vietnam
Title: Thien Su (Zen Master)
Workplace: Plum Village
Teacher: Thich Chan That
 
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The December issue of The Journal of Alzheimer’s Disease reports studies using as subjects: aged beagles, fruit flies, a couple of new strains of nude mice, and an assortment of rabbits - both living and dead. All of these animals in one way or another “expressed” the symptoms of dementia when treated in one way or another. Some of these animals improved their cognitive functioning (the coat hanger test, food finding, fear avoidance) when given this or that experimental brain directed chemicals. 

And we are on the verge of a breakthrough in the search for the cure of the disease in human beings? We are much closer to squeaking out the cause than we were 50,000 nude mice ago? We know what tress to bark up and what trees to avoid? We all know how to and where to hop in the right direction so I can nibble on the cure found at the end of the rainbow?

I think not.
 
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 ElderCareRead Life Scenes 1 is a book combining colourful photos, text and discussion questions, for a person with moderate to advanced Alzheimer’s disease or another form of dementia to enjoy with a caregiver or on their own.   The book is designed for different attention spans. Each page contains a standalone story. Those with short attention spans and limited information-retention capabilities will appreciate the one-page stories and will feel a sense of success at the completion of a page. At the same time, the book contains twelve photographs and stories, so that readers with longer attention spans can complete as much of the book as they are able.
 
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A source of information and support for us all - The National Council on Aging.

It is a non-profit service and advocacy organization headquartered in Washington, DC.

NCOA is a national voice for older adults - especially those who are vulnerable and disadvantaged — and the community organizations that serve them.
 
NCOA brings together non-profit organizations, businesses and government to develop creative solutions that improve the lives of all older adults.
 
NCOA works with thousands of organizations across the country to help seniors live independently, find jobs and benefits, improve their health, live independently and remain active in their communities
It’s  mission is to improve the lives of older Americans.

It’s  core values are - Social and economic justice - Respect and caring for all - and innovation.
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New NIA Progress Report on Alzheimer’s Disease

(This link is from my friend Mona’s site “The Tangled Neuron” She is one of the most articulate, dedicated, and talented writer/former caregivers I know!)
 
Mona reports:

“When my father started to have problems with his memory, my understanding of Alzheimer’s was that it was a single and identifiable disease, and that we were close to finding a cure.  The 2007 version of the U.S. National Institute on Aging (NIA) Progress Report on Alzheimer’s Disease presents a more open-ended and nuanced view of memory loss.
 
The wording in the new report reflects the evolving views of many of the researchers I’ve talked with.  Phrases such as “vigorous assault” and “fight against AD” featured in the 2005-2006 version of the report have been replaced with phrases like “a richer understanding” and “our growing appreciation of its complexities.”
 
Some of the key changes in thinking highlighted in the report are:
    * “it is increasingly evident that there is no clear line between a completely healthy brain and a diseased brain”
    * “the course of AD varies from person to person, as does the rate of decline”
    * “AD has no single cause but develops from multiple factors that interact over many years.”
2008 brought the failure of several highly-anticipated Alzheimer’s drugs in clinical trials, and many scientists and policymakers acknowledge the need for a new approach.  The newer, more holistic view presented in the NIA report has led to some shifts in research priorities. he 2007 version of the U.S. National Institute on Aging (NIA) Progress Report on Alzheimer’s Disease presents a more open-ended and nuanced view of memory loss.”
 
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 From another friend of mine, Danny George who is co-author of The Myth of Alzheimer’s - a round-up of some of the more compelling brain aging stories in the news over the last week. This is a fascinating site to explore if you are interested in alternative theories of what causes dementia, and what are the consequences of characterizing dementia as a disease. Click here!

 
Who is Richard Taylor?

Richard Taylor, a retired Psychologist, was diagnosed with Alzheimer’s-type dementia at the age of 58. Now 66, he is a champion for individuals with early-stage and early-onset Alzheimer’s disease, and author of the book Alzheimer’s from the Inside Out (Health Professions Press, 2006).

He lives in Cypress, Texas, with his spouse Linda, and his Bouvier Des Flanders (dog), Annie. His son and family live across the street from him. Originally, he started to write to better understand for himself what was going on inside of him. When he is not out speaking, he writes for two or three hours every day. Even as the disease progresses, he thus far has maintained his ability to look at and attempt to understand himself.

Richard is a passionate advocate for several issues concerning the involvement of people living with a diagnosis of one of the diseases of dementia. He was a moving force in the establishment of the Dementia Advisory Committee of the U.S. Alzheimer’s Association, looking at how to better integrate individuals living with the diagnosis in the leadership, program development, and delivery functions of the Association and its local chapters. He now serves as the chair of a similar committee he helped to establish for the Alzheimer’s Foundation of America.

He continues to be a sought-after speaker at various professional conferences, assisted living and memory care communities, and public programs. He is constantly looking for new audiences, especially of professionals who work in the field of dementia, to help them with getting to know the people they serve.

Richard is an articulate, thoughtful, and thought-filled speaker to caregivers. Thousands of them have used his insights as the basis for conversations and insights into what might be going through their loved one’s minds. Many Alzheimer’s chat rooms, across the United States and worldwide, were created in large or small part with his support. He publishes his own monthly newsletter that is less news and more a chronicle of his experiences and reactions to a life that he daily attempts to live to its fullest.
His firm desire to stay in today, to seek to be enable rather than disabled, to convince others he is and always will be a whole human being, to encourage others to say “hello” rather than “good bye” when thinking about him to talking to him, to promote more psycho-social research into finding “best practices” to cope with the day to day problems of living with diminishing cogitative skills - and living and caring about and for someone living with the diagnosis of dementia, probably of this or that type - these are some of the issues about which he is passionate.

While Richard still leads a vibrant life, control of his concentration is sometimes elusive. His language facility is still mostly intact, although he increasingly searches for the right word. His granddaughter Christina is learning to read and sometimes reads to him. His garden becomes smaller and smaller each year; he plays bridge (with a cheat sheet) once a week, is about to release two DVD’s chronicling his experiences and thoughts living with dementia,  and he is halfway through writing another book, updating his journey with Dr. Alzheimer.
 
Richard
 

 
 
 
I still haven’t figured out how to label each of the pictures in my newsletter! So here are the missing captions from top to bottom:
Richard celebrating his 65th birthday with his spouse and youngest grand daughter

Richard and his German publisher, Jurgen Georg, seated in the dining room of Richard’s exchange daughter Heike Salandar.

Richard standing next to world’s largest bottle of beer in Frankfort, Germany.

Thic Nhat Hahn, many consider him to one of the most “enlightened” humans on the planet!

Richard standing next to the cathedral in Cologne, Germany.

 
What’s Happening with Richard!
 
Speaking at Calder Woods Community
in Beaumont, Texas on Jan 30th.

Celebrating the 66th Anniversary of my birth on Feb. 4th
 
Participating in an Art and Dementia project at the Museum of Fine Arts in Houston, Texas on Feb 2nd, and Feb 16th.
 
Speaking at the Old Nabisco Building in Houston, Texas on Feb 12th. 
 
Speaking to a class at TWU in Houston, Texas on Feb 24th.
 
Will be in Atlanta, Georgia Feb 26th through March 3rd.  I will be speaking at the Presbyterian Village Convention at PM on March 1st.
 
Speaking at the 2009 World Alzheimer’s Conference (ADI) in Singapore March 21st-28th.

Speaking at Johns Hopkins Medical School in Baltimore on April 4th.

Speaking at Buckner Community in Austin, Texas on April 22nd.

Speaking in British Columbia, Canada on May 4, 5, 6, 7th.

Speaking at Early Onset Conference in Dallas, Texas on May 15th.

I’m still looking for a few more speaking engagements this year. www.richardtaylorphd@gmail.com
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A Caregivers Conference without hearing from the folks which they care?

Hello

This is my response to an article from the current newsletter of the Alzheimer’s Foundation of America (AFA).

Where are the genuine and should always be “featured experts” - speakers and panels of people with dementia?  Which comes first - updates of research and treatment - practical soultions to behavioral challenges - legal and financial considerations - or ongoing attempts to understand what it’s like to live with dementia as seen through the eyes of individuals who are living with the symptoms? Who should be a partner in determining how best to meet their own physical, emotional, and financial challenges of maintaining a purposeful life while coping with the symptoms of dementia?  Even when folks are deep into the symptoms they still deserve extraordinary efforts on the part of professionals and caregivers to keep them involved in their own care.

They just don’t seem to get “it!” Yet?!  Conferences offer “respite care” for us, while our caregivers confer on how best to support us.

Richard

This is the article about which I commented:

The Alzheimer’s Foundation of America (AFA) and Partners in Care will host a free caregiver conference called “Solutions & Support for Alzheimer’s Caregivers” on February 28th in New York that will provide pratical tools to help caregivers meet the physical, emotional, and financial challenges of caring for someone with Alzheimer’s disease.

Featured experts include Richard E. Powers, M.D., chairman of AFA’s Medical Advisory Board, who will update attendees on the latest research and treatments related to Alzheimer’s disease; Dale Atkins, Ph.D., a psychologist and popular commentator on family related issues on NBC -TV’s “Today Show,” who will discuss practical solutions to behavioral challenges; and David Cutner, PC, who will address legal and financial considerations that families face as the disease progresses.

The conference includes complimentary lunch for attendees, and respite care for loved one’s with Alzheimer’s disease.  It will be held from 10 am to 3 PM at the Lighthouse Executive Conference Center, located at 111 East 59th St. in Manhattan.  To RSVP, visit www.bigeventregistration.com/
alzheimerscaregivers/ or contact Abhi Basy, at 212.299.4292 or Abhi.Basu@zenogroup.com.

 
  .
 

LLAMADA / INVITACIÓN DE RICHARD TAYLOR A LA ACCIÓN
“¡Levántate! y habla / exprésate! No seas la victima de tu propio silencio.
Habla por ti mismo y por aquellos que te van a seguir. Pregunta a los cuidadores, familiares y amigos, para que hagan lo mismo.
¡Hoy no volverá nunca!
¡El tiempo es la esencia! empléalo / utilízalo sabiamente!
Di al mayor número de personas, tus percepciones e interacciones con profesionales de la salud, cuidadores pagados, familiares, amigos, extraños y con tus gobernantes.

¡Ellos no van a cambiar a menos que sepan y no van a saber a menos que tú les digas, así que háblales!
¡Procura buscar el cambio palpable y sensible y con urgencia!

¡Únete a la cruzada, ahora!
Sé un agente de cambio, ahora!
Dirige el movimiento, ahora

Stand up! Speak Up! Do not become a victim of your own silence.

Speak for yourself and those who will follow. Ask Carers and Friends
to do the same.
Today will never be here again.

Time is of the Essence!! Use it wisely!!

Tell as many people as possible your
perceptions of your interactions with
professionals, with carers, with friends, with strangers, with your government.

They won’t change unless they know, and
they can’t know unless and until you
SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusader, Now!
Lead a Crusade, Now!

“Aim above morality.
Be not simply good,
Be good for something.”
~Henry David Thoreau

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 a 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 grandpa, and dad, a friend, and whole and a 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 you do, or think like you do.   I know many of you 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.”

Richard

And greetings from Houston, Texas. I remember my Mom wearing an I like Ike button near election time in 1950 sometime or another. Not many folks around my house share the same feelings as Mom about Ike. Ike the hurricane, while relatively weak as hurricanes go, has left a lasting impression on this area of the Gulf Coast. Over a million folks are still without electricity. The city of Galveston, Texas has four feet of sand in its sewer lines and doesn’t know how to get it out. Their entire water supply is polluted. There was a lion wandering around the wreckage, a refuge from a local zoo.

And there are hundreds of folks with dementia living in unfamiliar surroundings moved 50, 100, 200 miles from their rooms in memory units to corporate facilities in North Texas. And some of them have no home to which they can return.

Just when you have figured out life is not fair – to becomes unfairer. Folks who are the most ill equipped cognitively are the ones who are the deepest and the most upset having to move on short notice to unfamiliar surrounds. They are the ones living on fixed incomes. They are the ones who even on a good day many people stop by to say good bye instead of hello.

I didn’t like Ike (I was madly for Adlly (Stevenson) as a presidential candidate, and I don’t like what Ike has done to the lives of those who are either the best or worst equipped to deal with change. It’s not fair. It’s not right. It just is.

I just read that Alzheimer’s disease has moved up the list of the cause of death of Americans.

It should not be news, nor a surprise that more and more and more people are dying because of this or that consequence of some form of dementia. More and more people are reaching the ages during which the probability of acquiring one or more of the diseases of dementia rapidly increases. What should be news is how little is being done to research how to add value to their lives prior to their deaths and after their diagnosis. What should be a surprise is how little research and research dollars are earmarked for psycho social research into the impact of the disease on individuals and their families.

We need another pipeline of support, not more pills, not more “maybe” promises, not more of more, we need different. We need to understand how to communicate with individuals in the later stages of the disease. We need to understand how to adjust and support someone in cognitive decline in ways which enable them to still feel they are living an accomplished and accomplishing life. They still need to find/have a clear sense of purpose and means to achieve it. They need to maintain their dignity, self worth, sense of today, and privacy.

We need to understand people are still home….even though others seldom knock on our doors because we either don’t answer, or answer in ways others don’t understand. When we forget your name does that mean we have forgotten you? We no longer have a need to give and receive love? When we become confused, when we wander, when we become agitated - these are all your labels, not ours. What can you do to support us and make us feel good about ourselves? You already seem to know what you can do to us to make yourselves feel good about us - drugs, secure facilities, restraints, and did I mention drugs!

We need more research, more research dollars to fill a psycho social pipeline of information, strategies, insights, support, enabling behaviors. It’s not dying that is the issue for me; it’s the living until then! The solution to the dementia problem is not prevention or a cure, the solution is learning how to successfully, to fully live with the process and consequences of relatively declining cognitive skills. We know, we have studied these issues even less than we know about the physiological processes - and we know so little about those processes, even after 100 years of researching the brain.

It’s not that more and more people are dying of the disease, it’s that more and more people are living with the disease. Words like cure, eliminate, halt, reverse, delay serve the ends of fund raisers, self interested parties, and well intended supports, but not people with dementia.

Why do so many of us have to die before how we live becomes important to politicians, researchers, professionals? Even if the baby boom didn’t exist, even if more people weren’t dying this year than last of the diseases of dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring out how to live with it more important than dreaming of a world without Alzheimer’s? A world without hunger? A world without war? All are wonderful dreams, in the mean time how can the lives of the people and families living with Alzheimer’s/dementia, the hungry/starving people, the collateral losses of human life in war - how can these people’s problems be researched, supported, lessened? Why must we wait for the dream to be a reality? Most of us now alive will be dead. Those who are then alive when the cures come around, if they come around will still live with the wounds of dementia, hunger, and war. What’s the plan for researching and improving their lives?

Our needs today take a back seat in the minds, dollars, budgets and research of our champions, organizations who use our disease on their letter heads. Research for a cure, a delay, a slow down doesn’t just take precedence over research for a more fulfilled life - bench research/drug company research (as my Granddaughter would say) “RULES”! The suffering, the destroyed families, the damaged caregivers, the folks who die because of the disease - these real and now living human beings apparently must die in larger and larger numbers to catch the attention of everyone so they can try harder, and spend more. Not to meet the needs of living people, but to meet the yet to be experienced needs of people, many of whom are yet to be born. What has happened to our priorities? Our humanity? Our love and respect for life, not our fear of death.