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

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