Blogs

I could write several books about what I don’t know, or I could simply say I don’t know what I don’t know and leave it at that. One of the things I don’t know for sure is why my newsletter appears and prints out differently in many of the printers of its readers. It looks great when we lay it out on my computer. All the columns are matching up, it’s easy to read, even for me who doesn’t have the strongest eyes in the world.

There should be a line below the title and before the copy begins that says if you are having trouble reading this click here. Clicking on it, I have been told, should reformat the newsletter so if “fits” your email provider’s formatting requirements.

Others have told me when they open their email and it is my newsletter, it doesn’t look nor does it print like it did/does on my computer. It is a mystery to me why this happens. When I asked the folks who run my expensive, but greatly needed and well-maintained email service (Constant Contact) they tell me each computer, email provider, each printer formats things the way it wants to, not necessarily the way I did.

Some readers have told me they print out the issue and use it in their group meetings, or give it to others. One person just told me it took her computer 30 pages to print it out. Even I am not that long winded! Something in the hard/software decided to print out each of the columns separately. Why? Neither of us seems to know. Like dementia probably of the Alzheimer’s type, if we don’t first know exactly what, why and how the error is caused, it’s impossible to imagine and research what, why and how to fix it. We just guess based upon our ignorance.

I am sorry that it happens to some, but I just do not know what to do about it.

Richard

Alzheimer’s groups and medical ethicists are expressing outrage over the suggestion by British moral philosopher Baroness Mary Warnock that those with dementia should consider ending their lives early.

There are obvious moral implications of the comments that 84-year-old Baroness Mary Helen Warnock shared with the Church of Scotland’s Life and Work magazine last week, in which she stated, “If you’re demented, you’re wasting people’s lives — your family’s lives — and you’re wasting the resources of the National Health Service.”

If this represents a legitimate belief of moral philosophy, I guess that makes me an immoral philosopher. If you want to end your life before your time, that is your decision to make. Please do not decide to end your life in order to save the government money and/or make your family happy. Looking for, creating, and maintaining purpose in our lives is one of the foundations of a fulfilling life. You do not have to give up purpose in your life just because some of your cogitative skills are slipping. You do not have to give up your life in order to make others happier in their lives. Only they can do that for themselves.

Baroness Warnock, please do not throw in your royal towel if you are diagnosed with dementia of this or that type.

Richard

From the August Newsletter

Dear Richard

My family wants me to take vitamins, lots of them. Every time someone reads an article about this or that vitamin, they want me to go out and buy some. What vitamins do you take? What to do you think about taking vitamins when your cognitive skills are slipping?

Dwight E.
Denison, TX

Hello

So much to worry about. So little time to worry. I too sometimes feel bombarded by well meaning friends who want me to start taking more, usually much more of this or that. Remembering that I am not a physician nor do I think I am a nutritionist…I’m just a person who wants to ingest the right things to help me live a longer and “better” life…this is what I think and believe about all the hoopla about neutraceuticals, vitamins, drinks, colon cleansers, and hand washing.

Neutraceuticals are usually composed of over the counter something(s) combined into a drink or pill or something you sprinkle on your morning breakfast cereal. The FDA is just starting to think to look at these. As they stand now they tend to be much more expensive than the sum cost of their over the counter/grocery store/organic farm ingredients. And remember all their claims are tempered by the small print warning that the FDA has substantiated none of the claims they make. Think what you like about the FDA, but they are the best we have going for us right now.

And now here comes vitamin D. When I was younger vitamin C came, then it was vitamin E, then a swarm of B’s showed up. Recently fish oil raised its stinky head.
The appeal of Colon cleaners/cleansers/scrubbers seems based upon a myth that what we eat stays inside of us for a long, long, long time and we ought to ream out the pipes every so often. Fiber pills, vegetables, and a nice house salad with a lot of thousand island dressing on it are also achieve the same goal at much less cost. And the last thing our sensitive intestines need is to be reamed out.

I just don’t have the time, the mental energy, the memory space, nor the long-term interest I once had in these “hot” vitamin of the month issues. I’m sure having a deficiency of any one of these is bad, sometimes really bad. But how much is enough? How much is too much?
What to do about all these “keys” to longer life, strong bones, fewer heart attacks and strokes, sharper cognitive skills, and a better sex life?

I’ll continue to take my generic “one-a-day” and let younger minds and bodies worry about trace elements and nano particles, rocks and minerals, auras and vibes, shark marrow and finely ground rhinoceros horn, etc.

Richard

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What of my pre-legacy legacy?

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

That’s certainly accurate.

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

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

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

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

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

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

Richard

Alzheimer’s From the Inside Out
July 2009, Issue #17

Hello, again And/or welcome for the first time to my monthly collection of information, experiences, thoughts, and feelings from yours truly, a person who is living with the diagnosis and symptoms of dementia, probably of the Alzheimer’s type. My big news this month is that I think I have convinced the Murray Alzheimer’s Research and Education Program folks in Waterloo, Canada (near Toronto), and Laura Bramly to work with me and my idea for a Dementia Summer camp for couples who are facing the diagnosis of dementia. My other big news is I am working with my brother, Robert on a new book that will consist of the 100 most frequently asked questions of yours truly by people living with dementia and/or their caregivers, and 100 responses/answers/musings to these questions. It is a lot more work than I first thought, but I am committed to getting it done by the end of the year and published sometime next year. Start saving your money today to purchase it next year! Attention, focus, staying on task whatever it is called is increasingly elusive to me. I start lots of things, finish few of them, and keep jumping/wandering from task to task. Its frustrating that I can think about it, but I can’t seem to stop it. Word search (although not evident in my writings because I pause and seek out the right word) also plagues me more and more. Thanks for opening this up, I hope you find some value for yourself and/or others by reading it. Richard “The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw Hello As I mentioned above, Robert and I are working on a new publishing venture for me. I’ll include some of my copy from the new book in my monthly newsletters. Here are two of the 100 questions and answers. Dear Richard I just finished reading your book Alzheimer’s From the Inside Out. I am a kindred spirit. I’ve been living with the same diagnosis for six years. You seem mad and angry in the book. Are you still feeling that way? I am, but I don’t always know who I am mad at. What about you? Andrew J. Waxhaw, SC Hello Yes, I was angry when I wrote the book (the first three years after I was diagnosed). Anger is a very strong emotion and it is usually focused on a real or imagined grievance. I was mostly angry at and with my spouse, unfortunately for her and for me. It didn’t do much good being angry at God, or Dr. Alzheimer’s, or my Doctors. They never answered me! I was very angry at that time in my life at the then current President, George W. Bush. I’ll leave you to decide if that was free floating anger attaching itself inappropriately to the President of the United States, or he fully deserved my anger. I knew I was angry, I most always felt angry. Whenever I acted out of anger and became angry at someone or thing I frequently acted and felt more angry than was appropriate or indeed as angry as I would have been pre diagnosis. Yes, I was mad at the diagnosis, with the diagnosis, and because I was diagnosed with dementia, probably of the Alzheimer’s type. The anger was, and to a much lesser extent still is fueled by my fears: Fears of today and tomorrow. Fears of losing control. Fears of losing myself. Fears of being a burden to others I love. It was the disease talking when I became so angry with my spouse for saying or doing something that had nothing to do with my diagnosis. But, the talk was coming out of my  mouth. It was me talking! It is understandable why others returned my anger with their own anger. I’m not as mad as I was. I have come to some peace, most times, with the fact of my diagnosis and the inevitable progression of my symptoms. I still don’t like it, but I’m not so angry about it. This change has greatly improved my relationship with others, especially my spouse. I don’t have a formula to defuse anger. I was in therapy for a year to help me deal with my anger, and it is working for me (sort of, and most of the time). What I discovered in my therapy was that much of my anger came from an irrational belief that everyone I loved should respond to my diagnosis exactly as I believed I would respond to them if they were diagnosed. Everyone has to decide for themselves how to deal with their anger. And, in the interests of living a full and most times enjoyable life post diagnosis, the need to learn and practice anger management/understanding seems to come with the diagnosis. You have my best wishes on your journey to manage your anger. Its not fair, its not right, its not good that we are where we are between our ears, but here we are nonetheless. Manage it, or it will manage and eventually consume you and your positive relationships with others. Richard This is the sum of duty: do naught to others which if done to thee would cause thee pain. The Mahabharata Dear Richard - I never seem to know what is the right thing to say when my husband asks me a question. I worry I am telling him the wrong information, the wrong way, with the wrong emphasis and accompanying non verbal clues as to what I actually mean. How do I know how to find the “right answers”? Where is the list of best answers? Who determines if indeed it is a “right” answer I am giving? The pressure seems to be all on my shoulders. Lots of people give me advice on what to say, mostly after I have said it. There are check lists, and principles, and word for word examples of exactly what to say and what not to say. What is the “Right Thing to Say?” Louisa A. Braintree, MA Hello! Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really do not know what to say. I am not them. I do not live with or in them. I am still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And, if we don’t know for sure, we should ask, we should listen, and we should just be. Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.” “I’ll be back in five or ten minutes” Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by others attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there anymore. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often. Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really does not need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It is how we decided to react emotionally to the words we ourselves utter, think about, and tell each other. We all need to keep constantly reminding ourselves and each other of this. We need to enable everyone to be himself or herself, to understand themselves, to love and to feel loved. The medical community, society, culture, history are all trying to convince us who we are, and we are not - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer. Perhaps the “right answer” for me is the wrong way to frame my answer to this question. I need, we need to find a response that works for both of us. A response that meets your needs and my needs. To find this we need to pause and attempt to understand each other’s needs at that moment. This takes more time, takes more effort, and it has a much higher probability of producing an answer that is “right” for both us - as opposed to blurting out the first thought that comes to mind when I ask you a question. Perhaps, indeed we need to stop looking for right and start talking to each other about what meets my needs, your needs, and our needs. I acknowledge that for folks in the early stages of dementia this is an easier process than for folks who are more consumed by their symptoms. But the principles of understanding, appreciating, and enabling still apply to your answers to our questions. Thanks for asking this. I know it is not a direct answer to a direct question. May it is the wrong question to ask, but thanks for asking it and making me think about this. Perhaps this is a conversation you should have with the person for whom you are caring. Richard “What it comes down to, for me, is that people want to do what will make them happy, but in order to understand that they really have to understand their world and what is going on around them.” Mark Zuckerberg, founder of Facebook Brain Freeze! Hello. At a recent conference on Alzheimer’s Disease, advocates were told the old/new strategy (justification for spending lots more money on research) is not necessarily to cure the disease right now, let’s at least discover enough pills so that if people will take them, and they can afford them, and there are side effects which people are willing to live with, and did I mention if they can afford them - then the symptoms of the disease will be sort of frozen - they won’t get any worse, they won’t get any better - folks just won’t have to deal with  more of them. In the mean time, researchers will be working day  and night to discover the elusive cure for the disease(s). They will be working on ways to reverse the course of the disease. The goal is to live in a world without Alzheimer’s disease and a world with no one living with the symptoms of the disease caused before we discovered a way to cure it. “Oh!” say I and 10 million people already living with the disease, “Why didn’t you just tell us what you wanted to do to and for us in the first place?” So now the justification for lots more money = lots more research = more results is: “we won’t necessarily cure the disease, just halt its progress.” So a “world without Alzheimer’s,” while still the goal, will first become a world with lots of Alzheimer’s, only the progress, severity and number of symptoms will be slowed, or perhaps even frozen in place. If we can’t figure out what causes it - maybe we can figure out how to slow it down to the point where we can maintain people in the disease (with whatever symptoms they are currently living with), perhaps even keep them at home for an extra year before they “must” be institutionalized (that would save the government big Medicare bucks). What if folks can’t afford the twice a day hands full of pills needed to “halt the progression?” We can give them a tax credit. What if the progression isn’t being halted, only the outward symptoms are being held in check? Isn’t this essentially what current medications claim? The disease progresses at about the same rate in everyone, but take these pills and it will be awhile before you quickly catch up (symptom wise) with folks who haven’t taken the pills. We can all be thankful they didn’t act as if they were getting worse. Maybe, with the extra year or two we can “buy” with these pills we will discover a cure! Maybe we will discover how the brain works! Maybe we will discover what happened the second before the big bang! Former Speak of the U.S. House of Representatives Gingrich told us we are going to know five times more about the brain in the next six years than we know today. Surely more is better…or perhaps more is simply more. And….therefore….perhaps…… Maybe, maybe, maybe. What about today, damn it! What about tending to the real needs of today’s citizens? Have we already done our best to figure out how best to live with the disease? How to find a new purpose in life living with the disease? How to be happy in a nursing home? How to convince families to honor, respect, and invite into their homes their own parents? Of course not. Research, effort into these current problems of real people is not as glitzy as discovering the “breakthrough” that leads to the cure of the disease (if indeed it is a disease amenable to a cure in the sense that “here take this pill and you will be better, cured as it were”). It’s harder to figure out - too many variables - too complicated. Well that doesn’t keep us from throwing more and more money at brain research. Save the brain and ignore the person, the family, the community in which the brain lives. Maybe we will and maybe we won’t, figure out how the brain actually does and does not work. The point from my perspective as one living with the disease is how easy it is for people who don’t have the disease to convince themselves living with the disease for a year or two or three or four more beats not living with the disease for a year or two or three or four more because they died. Shouldn’t someone ask us? Shouldn’t we be included in these initial huge decisions being made by of all the people the folks who have the least to benefit from the decisions from the point of view of the consequences of the disease but the most to gain from it for a variety of mostly well intended but certainly with more than a teaspoon of self interest? I don’t questions anyone’s motives, I question their 100 year history of failing to involve the people in whose name they act in the decision making process. Now we’re talking big bucks, now we’re talking about the survival of Medicare as we know it. Now, and always we are talking about adult human beings - not children, not beings, -human beings. This current national dialogue that has taken 100 years to begin, began with one person with dementia speaking up and then…..Let’s get back to “the experts.” Let’s talk to knowledgeable caregivers, to M.D.s to representatives of organizations dedicated to funding the search for a world without Alzheimer’s, let’s talk about the NIH, let’s talk about waste and fraud. But first and last let’s talk to people who are living with the disease. Let’s get them on the committee. Let’s work with them. I tire over trying to think through some of the cock-eyed rationalizations self-interest groups think up to justify giving them more money, while ignoring their lack of progress and their lack of a consensus even amongst themselves that what they are doing is the “best” course of action. We won’t be here tomorrow. We won’t be the leaders. But, we are here today, and others will be here tomorrow. It isn’t right to expect people with dementia to be the “voices of reason” in the setting of National priorities concerning their disease. It also isn’t right to exclude them. Wait a minute, at least a minute, perhaps even two or three before we rush off trying harder (this time with an adjusted justification), still  without a strategy other than more must be better, still without a consensus of where best to spend all these extra bucks we found somewhere, still without knowing how or even if we can deliver something we discover to the parts of the brain we have yet to identify, and now acknowledging the best we are now hope for is to freeze human beings in whatever state they are with the disease (no one dares to say we are actually going to “heal” the brain when it comes to dementia). So here I am. Here are almost 10 million people living within one of the disease of dementia, trying to get through the day, around our symptoms. Watching a national debate from the sidelines about us. Am I the only one who thinks “they” (whoever they is) keep making stuff up as they go along? Blind to the sides of the boxes they helped to build around themselves. Defensive when other stakeholders (dare I say the real stakeholders - the people with the disease) ask (increasingly demand) to be part of the process - not maybe/just advisors. Is that what leaders do? Richard The trouble with the world is not that people know too little, but that they know so many things that are not so. Claude Bernard: (1813-1878) French physiologist I think not International Conference on Alzheimer’s Disease drew nearly 3,800 international attendees to Vienna to share the latest ideas, thoughts and theories in dementia guessing/science. (Those “in the know” refer to it as ICAD) Breaking research and new technology captured global media attention as the world’s leading scientists explored innovative ways to unlock the mysteries of Alzheimer’s. Unfortunately, it seems the more we know about Alzheimer’s, the more we also seem to know that we don’t really know that much about Alzheimer’s. This “for profit” conference was purchased by the National Alzheimer’s Association several years from its original organizers and owners. (Was there a National “Walk” to purchase this conference?) Shortly after last year’s conference, there was a ground swell of support for making it a yearly rather than an every other year event. Guess where most all the water for this ground swell was coming from? The National Alzheimer’s Association, of course. They make money off of this, they enhance their reputation as a research organization dedicated to finding a cure for Alzheimer’s Disease (even some of the researchers now speak aloud the idea that maybe Alzheimer’s is not really a disease), they get to go to Barcelona, Vienna, and next year Hawaii. What’s not to love about having this conference every year instead of every other year? Are we truly so close to a breakthrough we can’t let a year go by without all getting together to listen to some of us blow our own horns? Is the path to a cure narrowing, or is it still a highway and bridge to nowhere? Do researchers have so much money they can afford these “must go to” conferences every year? Our, my, your National Alzheimer’s Association’s annual education conference that previous shortly followed this conference was axed. Since way before their fairly recent staff downsizing, they have been grossly understaffed, and as the prominence of the ICAD grew, the education conference shrank. The itch to be seen as “the” leader in promoting the search for a cure, the creation of a world without Alzheimer’s seems to be growing. They scratch it with lots and lots of the funds they raise, but of course, it is never enough to make the itch go away. All this self-promotion by drug companies, researchers, and the Association takes time, effort, staff and dollars away from education, support, psycho/social research and programs - all of which support people who are living with dementia probably of this or that type. Is this the best plan for the National Alzheimer’s Association? Is this the best use of their all too limited funds, staff, energy, leadership efforts? I think not! Surely not! Surely their priorities are out of order! Richard It is what we think we know already that prevents us from learning. Ambrose Bierce: (1842-1914) US journalist. What does the National Alzheimer’s Association do well? And the answer is: Advocacy - on a National and State by State level. Their Washington office has a long and well-earned reputation for getting things done. Although they too have a bias for seeking Federal Funds for Research, they of all the folks, programs, and ideas that define the National Alzheimer’s Association seem to be most open to including the issues of folks actually living with dementia in their agenda, and to a large extent (when measured against the actions of the other programs of Association) they walk the talk, and talk the best walk. Without “taking sides” in the various issues raised by “the loyal opposition,” the message to Congress remains clear: Congress must pass health care reform that includes long-term care services and supports this year. We are making progress on our health care reform priorities. Current proposals include: Medicare care coordination services for people with cognitive impairments and their caregivers Long-term care services and supports What Can You  Do Now? We (You and I) must keep the pressure on Congress. Join other Alzheimer advocates by participating in local activities with your members of Congress to press our health care reform agenda. Advocates are needed to visit district offices and attend public meetings. Contact your local Alzheimer’s Association chapter. Here is an update on commitments members of Congress have made to our issues: 230 indicate support to end the two-year waiting period for Medicare 201 indicate support for a $250 million increase in Alzheimer research funding 86 indicate support the creation of an Alzheimer’s Solutions Project Office 67 members indicate support for all 3 issues! *108 members of Congress have co-sponsored the Ending the Medicare Disability Waiting Period Act of 2009 (S.700/H.R.1708) I stopped going to the Association’s annual Advocacy/March on Capitol Hill days because I felt it inappropriate, and I felt increasingly uncomfortable telling members of congress year after year we were “on the verge of a breakthrough in research”, “there was now light at the end of the tunnel.” One year we were especially worried researchers would move away from Alzheimer’s research and follow the money to other diseases if we didn’t give them more to stay in Alzheimer’s research. These eternally optimistic messages of the soon to be realized vision of a “world without Alzheimer’s” were not, and are not in my mind the most appropriate, the completely accurate, the best message to carry to our leaders. Although they may in the short term be the basis for increasing available federal research dollars, as long as there is such a disproportional (in my humble opinion) amount of research funding on pills and not on people (although they argue unconvincingly that a dollar spent on the ever changing search for a cure is really the best and most appropriate means for them to spend the money they have raised). Having said that, the day to day trench war that takes place in the committees of Congress must be fought and supported by someone(s) if we are to make our quasi-dysfunctional political work (sort of) for us. Please call your local chapter and/or email the Washington advocacy office and volunteer to support the “push” for dramatic change to our health care system - especially as it relates to support for people living with dementia. Thanks. Richard Links Happy Birthday Bob (the sponge) Spongebob Squarepants, the fictional charachter of Nickelodeon’s animated television series is 10 years old. Designed by marine biolopgist and animator Stephen Hillengurg, Spongebob first hit television screens in May 1999.  The character, a naive and goofy sea sponge who lives in the fictitious underwater town of Bikini Bottom, has been a favorite for both adults, children, and yours truly and my grandchildren. Voiced by actor and comedian Tom Kenny, the character has also courted controversy and been seen by some as promoting homosecuality.  In the cartoon series, SpongeBob is often seen holding hands with his friend Patrick, something that has promoted him as a gay-icon amongst the homosecual community. However, his creator denies and such link. In celebration of Spongebob Squarepants’ 10th anniversary, Madame Tussands Wax Museum unveiled a wax figure of the character in New York. The large blue eyes sponge with buckteeth typically wears a white shirt with a red tie and brown square trousers, hence his name “SquarePants.” In his adventures he is joined by other unusual inhabitants of his undersea world including his pet snail Gary, a squid called Squidward and Patrick, a starfish and Spongebob’s best friend.  An optimistic and energetic Spongebob is often seen enjoying jelly-fishing and blowing bubbles. To mark “Spongebob’s” 10th anniversary, Nickelodeon and sister channel VH1 are throwing a massive celebration that would even put a smile on Squidward’s face. As his voice over artist Kenny says, “The show is really born out of nothing more than to make something good and funny and making ourselves laugh.” Nickelodeon has made millions from the franchise selling everything from SpongeBob macaroni and cheese to SpongeBob underwear. In 2004 feature film raked in 118 million U.S. dollars and DVD sales continue to make record profits for the television company. Last summer it even gained a presidential seal of approval when Barack Obama whilst on the campaign trail told TV Guide that his favorite TV character of all time was the lovable sponge “because ‘SpongeBob’ is the show I watch with my daughters.” ____________________________________________________ If you follow no other link, if you read no other article in this issue please chick on this link and read the entire article. Then consider what you think, hope, believe about Alzheimer’s research. _________________________________________________________________________ More than 7 out of 10 people with Alzheimer’s disease live at home, where almost 75 percent of their care is provided by family and friends.6 The remainder is “paid’ care costing an average of $19,000 per year. Families pay almost all of that out of pocket.15 Half of all nursing home residents have Alzheimer’s disease or a related disorder _____________________________________________________ Memory loss can be one of the most terrifying aspects of a diagnosis of dementia. Yet the fear and dread of losing our memory make the experience of the disease worse than it needs to be, according to cultural critic, playwright, and my friend Anne Basting. She says, Forget memory. Anne emphasizes the importance of activities that focus on the present to improve the lives of persons with Alzheimer’s disease and other dementias. Based on ten years of practice and research in the field, she provides specific examples of innovative programs that stimulate growth, humor, and emotional connection; translates into accessible language a wide range of provocative academic works on memory; and addresses how advances in medical research and clinical practice are already pushing radical changes in care for persons with dementia. Bold, optimistic, and innovative, her cultural critique of dementia care offers a vision for how we can change the way we think about and care for people with memory loss. AFter you have bought and read my book, please go out and buy and read her book. ___________________________________________________________________________________ Pioneer Network Conference Pioneer Network Conference Intensives are a one-day conference in themselves. Experienced guides who can demonstrate with hands-on practical approaches will get to the heart and soul of the subject matter, while giving you the nuts and bolts that you can take home and use immediately. These Conference Intensives are designed especially for YOU - the Pioneer attendee.  Be ready for an all day interactive intense learning experience. ___________________________________________________________________________________ Edna Gates Conference The 13th Annual Edna Gates Conference on Dementia Care features innovations in care, new developments in research and provides a forum for dementia care leaders and health professionals to share ideas. We have a long tradition of offering sessions conducted by leaders in dementia care from the United Kingdom, Australia, Canada, Europe and different regions of the U.S. SAVE THE DATE: November 2 & 3, 2009 ___________________________________________________________________________________ As many as five million Americans are living with Alzheimer’s. The popular perception of the disease is that people who receive an Alzheimer’s diagnosis are lost to themselves and to those who love them-and that they have no future. But as John Zeisel, an innovator in nonpharmacological approaches to treating Alzheimer’s, makes clear in this book, this view is wrong. The disease often lasts ten to fifteen years-a time span that definitely constitutes a future. In I’m Still Here, Zeisel shows that during the course of Alzheimer’s, caregivers can have a vibrant and meaningful relationship with people who have the disease. I’m Still Here focuses on connecting with individuals with Alzheimer’s through their abilities that don’t diminish with time, such as understanding music, art, facial expressions, and touch. Zeisel demonstrates that people who have the disease are highly creative and emotionally intelligent. By harnessing these capacities, and by using other approaches to treatment-such as building memory cues into their living environment, which encourages independent movement and helps eliminate sources of frustration-it’s possible to offer them a quality life with connection to others and to the world. ___________________________________________________ Myth : There are therapies available to stop the progression of Alzheimer’s disease. Reality: At this time, there is no medical treatment to cure or stop the progression of Alzheimer’s disease. FDA-approved drugs may temporarily improve or stabilize memory and thinking skills in some individuals (but only for some folks and only for a relatively brief period of time. No one knows if the pills are slowing the actual progression of the disease or enabling your own brain to temporarily compensate for the progression of the disease - RT added this part) ___________________________________________________ The two major findings in the Alzheimer’s brain are amyloid plaques and neurofibrillary tangles. Amyloid plaques are found outside the neurons, neurofibrillary plaques are found inside the neurons. Neurons are the nerve cells within the brain. Plaques and tangles are found in the brains of people without Alzheimer’s. It is the gross amounts of them that are significant in Alzheimer’s disease. ____________________________________________________ The cost of Alzheimer’s care · National direct and indirect annual costs of caring for individuals with Alzheimer’s disease are at least $100 billion, according to estimates used by the National Institute on Aging. · The average lifetime cost of care for an individual with Alzheimer’s is $174,000. · Alzheimer’s disease costs American business $61 billion a year, according to a report commissioned by the Alzheimer’s Association. Of that figure, $24.6 billion covers Alzheimer’s health care and $36.5 billion covers costs related to caregivers of individuals with Alzheimer’s, including lost productivity, absenteeism and worker replacement. _____________________________________________________ Alzheimer’s warning signs include memory loss affecting job skills; difficulty performing familiar tasks; language problems; time and/or place disorientation; poor or decreased judgment; problems with abstract thinking; misplacing things or putting them in inappropriate places; mood, personality or behavior changes; and passivity and loss of initiative. If you notice several of these symptoms in yourself or a loved one, consult a doctor for a complete examination and evaluation. _____________________________________________________ Use this link for the 4th Annual National Concepts in Care Conference of the Alzheimer’s Foundation of America Conference in Chicago, Illinois. SAVE THE DATE: September 24, 2009

In This Issue What is the right thing to say? Brain Freeze What does the National Alzheimer’s Association do well? So what else is new? Who can ever forget what’s his/her face? Hmmm Featured Article I once was lost, but now I’m found, was blind but now I see - Living Long(er), Living Better With a Clear and Active Sense of Purpose I have for sometime realized from my own life experience how important it is to have a sense of purpose, to know what it is, and to strive each day to include activities which enable me to achieve my sense of purpose. I lost my sense of my purpose when I lost my job, my driving privileges, many of my friends, and to some extent I lost myself for a while. I did not find my new sense of purpose, it found me. Writing and speaking became my sense of purpose, without me having to “figure it out for myself.” I was sleeping longer, watching more TV - more stupid TV, and became clinically depressed. Apparently, the day after my book came out the world thought I was smarter, more interesting than they had previously thought. Folks started to call me and ask me to speak. I thought more about what it was like for me to live with the symptoms of Alzheimer’s disease. I wrote more. I spoke more. I traveled more. I published more. I met more and more interesting kindred spirits, caregivers, and professionals. Wham-O I had a new sense of purpose, and many of my activities of daily living now channeled me into feeling a sense of personal achievement and accomplishment, a sense of self satisfaction with myself and my life, a feeling of okayness (remember “I’m Okay, You’re Okay?” I acknowledge that those of us deeper into the symptoms of dementia probably of this or that type cannot buy themselves redefine a new sense of purpose for themselves. They cannot by themselves create daily activities that help them achieve their sense of purpose. They may need others to assist them in the search. The will need others to find/create activities of daily living that lead them to a sense of self-fulfillment of their sense of purpose. What follows is a report on some research on the impact a defined, achieved, and achievable sense of purpose has on our lives. This comes from the Rush Alzheimer’s Disease Center in Chicago. They have formed one of the most active, creative, and popular programs for folks living in the early stages of dementia probably of this or that type that I know of in the U.S. of A. TUESDAY, June 16 (HealthDay News) — If you have a purpose in life — lofty or not — you’ll live longer, a new study shows. It does not seem to matter much what the purpose is, or whether the purpose involves a goal that is ambitious or modest. “It can be anything — from wanting to accomplish a goal in life, to achieving something in a volunteer organization, to as little as reading a series of books,” said study author Dr. Patricia Boyle, a neuropsychologist at the Rush Alzheimer’s Disease Center and an assistant professor of behavioral sciences at Rush University Medical Center in Chicago. “We found that people who reported a greater level of purpose in life were substantially less likely to die over the follow-up period — only about half as likely to die over the follow-up period — as compared to people with a lower level of purpose,” Boyle said. The follow-up period averaged nearly three years. Boyle and her colleagues studied 1,238 older adults already participating in two ongoing research studies at Rush, the Rush Memory and Aging Project and the Minority Aging Research Study. The participants were all dementia-free when the study began and averaged 78 years old. At the start of the study, the participants answered questions about their purpose in life, rating themselves on different areas meant to measure the tendency to derive meaning from life and to feel that one is working toward goals. The average score on the sense-of-purpose evaluation was 3.7 of a possible 5, Boyle said. When comparing scores, Boyle found that those with a higher sense of purpose had about half the risk of dying during the follow-up period as did those with a lower sense of purpose. And that was true, she said, even after controlling for such factors as depressive symptoms, chronic medical conditions, and disability. “What this is saying is, if you find purpose in life, if you find your life is meaningful and if you have goal-directed behavior, you are likely to live longer,” she said. Though much other research has found that having a purpose in life is crucial to maintaining psychological wellness and can be important for physical health as well, Boyle said she believes the new study is one of the first large-scale investigations to examine the link between life purpose and longevity. The finding follows another recent study, done by others, in which the researchers found that retirees older than 65 who volunteered had less than half the risk of dying during about a four-year follow-up period as did their peers who did not volunteer their time. What’s the link? Boyle can’t say for sure. But it could be that having a greater sense of purpose helps multiple systems of the body function better, conferring protection in the face of illness. The findings make sense to Dr. Gary Kennedy, director of geriatric psychiatry at Montefiore Medical Center in New York City. He said he often sees the effects of not having a purpose among older patients. “I see a number of people who have lost that purpose,” he said. “Their health declines.” Boyle said that in future research they hope to find out if people can be inspired to have purpose in life, perhaps by being taught to set goals and work toward them. SOURCES: Patricia Boyle, Ph.D., neuropsychologist, Rush Alzheimer’s Disease Center, and assistant professor, behavioral sciences, Rush University Medical Center, Chicago; Gary Kennedy, M.D., professor, psychiatry and behavioral science, Albert Einstein College of Medicine, and director, geriatric psychiatry, Montefiore Medical Center, New York City; June 15, 2009, Psychosomatic Medicine I know some folks, myself included, have never been good at recalling names, but I just don’t forget people’s names - I don’t remember even remembering them. I don’t have a clue. I can’t just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly enough I care less and less if I can’t remember it. I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you? Some folks assume because I can’t recall their names I don’t know, or for that matter, care who they are. After all, “If you can’t remember my name, can you really remember me?” Of course this is not necessarily true, even for folks who don’t have dementia. However forgetting names produces a stronger emotional response (in me!) when I can’t remember the name of my Grand Daughter, Sister-in-Law, son’s fiancé. Of course, the ultimate name failure is that on one’s spouse (I haven’t crossed that bridge yet.) Richard So what else is new? Hello At last, someone(s) in the world is waking up to the fact that all the people who live on this earth are growing older every day. Moreover, proportionally more people are crossing the *”dementia bar.” The point at which your changes of living with the symptoms of some form of(s) of dementia start to rapidly increase. UNPRECEDENTED GLOBAL AGING EXAMINED IN NEW CENSUS BUREAU REPORT COMMISSIONED BY THE NATIONAL INSTITUTE ON AGING The average age of the world’s population is increasing at an unprecedented rate. The number of people worldwide age 65 and older is estimated at 506 million as of midyear 2008; by 2040, that number will hit 1.3 billion. Thus, in just over 30 years, the proportion of older people will double from 7 percent to 14 percent of the total world population, according to a new report, “An Aging World: 2008.” The report examines the demographic and socioeconomic trends accompanying this phenomenon. It was commissioned by the National Institute on Aging (NIA), part of the National Institutes of Health, and produced by the U.S. Census Bureau. It was released today by the Census Bureau. “The world’s population of people over age 65 is growing rapidly, and with it will come a number of challenges and opportunities,” said NIA Director Richard J. Hodes, M.D. “NIA and our partners at Census are committed to providing the best data possible so that we can better understand the course of population aging and its implications.” “An Aging World: 2008″ examines nine international population trends identified in 2007 by the NIA and the U.S. Department of State (”Why Population Aging Matters: A Global Perspective”). “An Aging World: 2008″ contains detailed information on life expectancy, health, disability, gender balance, marital status, living arrangements, education and literacy, labor force participation and retirement, and pensions among older people around the world. “Aging is affecting every country in every part of the world,” said Richard Suzman, Ph.D., director of NIA’s Division of Behavioral and Social Research. “While there are important differences between developed and developing countries, global aging is changing the social and economic nature of the planet and presenting difficult challenges. The fact that, within 10 years, for the first time in human history there will be more people aged 65 and older than children under 5 in the world underlines the extent of this change.” Highlights of the report include: — While developed nations have relatively high proportions of people aged 65 and older, the most rapid increases in the older population are in the developing world. The current rate of growth of the older population in developing countries is more than double that in developed countries, and is also double that of the total world population. — As of 2008, 62 percent (313 million) of the world’s people aged 65 and older lived in developing countries. By 2040, today’s developing countries are likely to be home to more than 1 billion people aged 65 and over, 76 percent of the projected world total. — The oldest old, people aged 80 and older, are the fastest growing portion of the total population in many countries. Globally, the oldest old population is projected to increase 233 percent between 2008 and 2040, compared with 160 percent for the population aged 65 and over and 33 percent for the total population of all ages. — The 65-and-older population in China and India alone numbered 166 million in 2008, nearly one-third of the world’s total. Issues related to population aging in the world’s two most populous nations will be accentuated in the coming decades as the absolute number climbs to 551 million in 2040 (329 million in China and 222 million in India). — Childlessness among European and U.S. women aged 65 in 2005 ranged from less than 8 percent in the Czech Republic to 15 percent in Austria and Italy. Twenty percent of women aged 40-44 in the United States in 2006 had no biologic children. These data raise questions about the provision of care when these folks reach advanced ages. — Older people provide support to as well as receive support from their children. In countries with well-established pension and social security programs, many older adults provide shelter and financial assistance to their adult children and grandchildren. Older people in developing countries, although less likely to provide financial help to children, make substantial contributions to family well-being through such activities as household maintenance and grandchild care. The report was prepared by Kevin Kinsella and Wan He of the International Programs Center in the Population Division of the Census Bureau. Now how will the world’s leaders, their governments, the International Alzheimer’s Society, the National Alzheimer’s Associations/Societies, the local chapters of National Organizations, Regional and State leaders and governments, local leaders, and you respond to this fact of world life? Stay tuned, I will for as long as I can. And I will continue to stand up and speak out. What about you? Richard *”dementia bar” I just made that term up, and I think I will begin to use it more, if I can remember. Who can ever forget whats his/her face? I know some folks, myself included, have never been good at recalling names, but I just don’t forget people’s names - I don’t remember even remembering them. I don’t have a clue. I can’t just cough while I quickly rummage through all the names I can recall starting with Q because that is the letter or sound that has popped into my mind. It is not gone, it is as if it was never there, and amazingly enough I care less and less if I can’t remember it. I now most times just say, “Excuse me but I can’t recall your name - or where I met you - or how I know you - or who you are.” Can you help me out here? Well, can you? Will you? Some folks assume because I can’t recall their names I don’t know, or for that matter, care who they are. After all, “If you can’t remember my name, can you really remember me? Do you really want to remember me?” Of course this is not necessarily true, even for folks who don’t have dementia. However forgetting names produces a stronger emotional response (in me!) when I can’t remember the name of my Grand Daughter, Sister-in-Law, son’s fiancé. Of course, the ultimate name failure is that on one’s spouse (I haven’t crossed that bridge yet.) Richard Hmmmm. Where have I head these warnings before? The next health tsunami: Non-communicable diseases GENEVA: The International Diabetes Federation (IDF), the International Union Against Cancer (UICC) and the World Heart Federation (WHF) called today on the UN’s Economic and Social Council (ECOSOC) to take immediate action to avert the fastest growing threat by non-communicable diseases (NCDs) to global health. NCDs which include cardiovascular disease, diabetes, cancer and chronic respiratory disease, cause 60% of all deaths globally and 80% of these are in low- and middle-income countries. WHO projects that globally NCD deaths will increase by 17% over the next 10 years. The greatest increase will be seen in the African region (27%) and the Eastern Mediterranean region (25%). The highest absolute number of deaths will occur in the W. Pacific and S.E. Asia regions. The global call, issued by the three organizations at the meeting of the UN ECOSOC in Geneva, demands five essential actions: 1. Call for an ‘MDG Plus’ containing NCD progress indicators in the 2010 Millennium Development Goals (MDGs) review 2. Support the availability of essential medicines for people living with NCDs 3. Support a UN General Assembly Special Session on NCDs 4. Support the immediate and substantial increase of funding for NCDs 5. Integrate NCD prevention into national health systems and the global development agenda The UN MDGs state that health is critical to the economic, political and social development of all countries, yet they contain no goals or targets for NCDs, which are the largest threat to health systems. Public health experts are expecting ECOSOC leaders to show the way in confronting this health crisis faced by millions. The emerging epidemic of NCDs is threatening to overwhelm healthcare systems worldwide unless action is taken. “This tsunami didn’t arise yesterday; it evolved over time and is getting worse. We need a revolution to change the trajectory if we are serious,” stated Dr Leslie Ramsammy, Minister of Health, Guyana at this morning’s WHO Ministerial breakfast meeting. The World Economic Forum’s 2009 Global Risks report supports this with evidence that the incidence of chronic disease is rising across both the developed and developing world. Medical advances and awareness can reduce the risk severity but chronic non-communicable diseases are still the main cause of death worldwide. My question is why haven’t the Alzheimer’s Associations/Societies of the developed countries raised the same ruckus, demanded the same UN response? Produced the same worldwide interest? Created the same climate of leadership for the worldwide dementia communities? And, where was Alzheimer’s Disease International when this press conference was held? And why can’t the dementia support community (read that as the National Alzheimer’s Associations) partner with Parkinson’s, Aids, stroke, and other National and international organizations whose disease concerns overlap with a common symptom being dementia? Why don’t Alzheimer’s Associations lead in the formation of coalitions between NPO’s who share at least one common symptom, that being dementia. We need local, state, national, and world leaders to make essentially the same case. Stand up, speak up, and ask of those who claim to represent us to speak a little louder, a little more often, to speak and work more in unison with each other. And why can’t they all include people with dementia of this or that type on their boards of directors (in potentially impact numbers), on their staffs, working in their offices, and partnering with the organizations in each of their major initiatives involving issues growing out of dementia. Its fair, its right, its easier than most imagine to accomplish, its doable. It takes leaders to make it happen. Richard Where’s Richard? I will be speaking tonight, July 22, 2009, at the Hillel House by Rice University at 7pm. Please contact Morris Dante (morwdan@sbcglobal.net) for more information. A program that I do not speak at, but frequent fairly often is offered at the Museum of Fine Arts in Houston, TX once a month for people with dementia and their caregivers.  The program is called “Looking Together” and there next one is on August 10th at 10am.  If you are interested please contact Bridget O’Brien (bobrien@mfah.org) for more information. I will be speaking for the Alzheimer’s Alliance of Arkansas program August 10th and 11th.  On August 10th I will be speaking in Hot Springs from 9:30-11:30am and at the Second Presbyterian Church in Little Rock from 2:30-5pm. On August 11th I will be speaking in Heber Springs from 10-11:30am. Please contact Janet Nelson (janet.nelson@alzark.org) for more information. I will be speaking at the 9th Annual Pioneer Networking Conference on August 11th, 12th, and 13th in Little Rock, Arkansas.  Please contact Karen Stobbe (karenstobbe@charter.net) for more information. I will be speaking at Autumn Grove Cottage in Pearland, Texas at 5:30pm on August 27th. Please contact Amanda Bailey (amandabailey@autumngrove.net) for more information. I will be speaking September 12th at Sun City Huntley in Huntley, Illinois from 1-2:30pm. For more information please contact Nancy Turngren (NTurngren@centegra.com). I will be speaking September 19th at Warwick University in the heart of England. Please contact Sarah Heseltine (SHeseltine@alzheimers.org.uk) for more information. I will be speaking in Scotland September 21st-23rd. For more information please contact Andrew Ketteringham (Andrew.Ketterinham@ alzheimers.org.uk) On September 26th my son, Jason, will be getting married to Lori in Houston, Texas. In October 15th I will be speaking at the Bellingham Dementia Care Center in Bellingham, Washington.  On October 16th I will be speaking at “The best ever Alzheimer’s Conference” in Bellingham, Washington.  Please contact Josselyn Winslow (josselyn@alzsociety.org) for more information. I will be attending the 7th Annual Portman Conference in Troy, Michigan on November 2nd for Direct Care Workers.  I will be involved in a workshop called Enabling People with Dementia. Please contact Anne Robinson (annerobinson2@sbcglobal.net) for more information. I will be attending the 13th Annual Edna Gates Conference in Troy, Michigan on November 3rd.  I am a keynote speaker on November 3rd.  Please contact Anne Robinson (annerobinson2@sbcglobal.net) for more information. I will be speaking in the state of Colorado from November 30th through December 4th.

Stand Up! Speak Out! Now!
If you do not tell them, how will they ever know?
Do not become a premature victim (by even one day!) of your own silence.
Speak up about and for yourself and those who will follow.  Ask Carers and Friends to speak up for themselves, and for you and with you.

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 cannot change unless they know, and the cannot know unless and until you Stand Up! SPEAK UP! Now!

Seek to create and except from others a Palpable Sense of Change and of Urgency!

Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC

Alzheimer’s From the Inside Out
June 2009, Issue #16

Hello Thanks for opening my June Newsletter. My name, just in case you haven’t already guessed it, is Richard and I have been living with the slowly and relentlessly increasing symptoms of Dementia, probably of the Alzheimer’s type for the past seven years. Every month I being preparing for this mailing with the best of intentions. I want to share with you the fascinating people, places, and ideas I have run across in my travels for the month. Unfortunately, I do not always get around to those reports. I write almost every day, even when I am on the road. Writing is close to an obsession with me. Writing, and especially reading it and understanding it the next day confirms for me I am still okay. Of course I will always be okay, I will just be different. But there I go drifting away from my intended focus. My travels, my speaking, my listening have given me the gift of feeling not only that I am not alone, I’m actually a part of a large group of like-minded (in many senses of the words) wonderful, interesting, vibrant human beings. I like that feeling. I want others living with the symptoms of dementia to feel “included.” Please see if you can help make that happen to someone you know who lives with failing cognitive skills. Thanks Richard “The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw Trust me! I’m here to change your culture for the better! Hello! “I’m a trained, certified, over-educated, compassionate, knowledgeable, experienced, and well intended Culture Change, Change Agent. I know what I am doing is good for you! And you’ll know it too after successful completion of this two and a half hour workshop by all the members of your domestic support staff!” “Oh!? Do I need a new culture? Do I need to pay someone to come to my home to tell my domestic staff what I need? Do they need to learn about defining, creating, maintaining and evaluating the culture in which I live, and in which they work?” Culture Change - Person Centered Culture Change -is not about changing for the better (or at least ” better” in the minds of the “change agent”) the culture of someone else. It’s about empowering, enabling, reabling others (especially elders, especially people living in assisted living communities, especially everyone who has in some form been disabled from being all they deserve to be by virtue of their birth) to define the new culture in which they want to live. It’s about taking their needs and wants as they expressed them, and making them happen with the inhabitants and users of the “new” culture acting as co-agents. What follows are words from an “Ad” for a model of culture change and a workshop to make it happen. “With this program, the soil is warmed by involving everyone, right from the start, in your culture change commitment. Work out a schedule that allows every single employee (and interested families and residents) to participate in a two to four hour workshop over a two to three day time period. The results are powerful: · Everyone feels rewarded and attended to; · Everyone comes away with the same understanding of why culture change is worth all the trouble; · Real issues and concerns are brought out and discussed; · New team skills are learned that will immediately benefit the facility · Excitement is channeled into real possibilities.“ Notes: The desired outcome seems to be a changed culture for employees  that will immediately be of great benefit to the facility.  The assumption being what’s good for the facility is good for the residents. And, what’s good for the residents, is good for me! Families and residents are invited to participate if they are “interested.” If they aren’t interested…stay home and we will post a notice on the bulletin board telling you the changes in the culture we have decided are “must haves” for you. Culture change is characterized as “worth all the trouble.” What trouble? Who are the troublemakers? How do you already know we need to change my culture, and how do you already know what needs to be changed? The “real issues and concerns that are brought out and discussed” - are these worker’s issues? Management issues? Compliance issues? Budget issues? Or resident issues? And if they begin and end with resident’s issues how do you discover/know what they are without first asking us and then inviting lots of us to be at the table/in the room while you discuss them? I believe every culture change agent cares about the people whose culture they want to change. After all, that is probably why they do what they do with such enthusiasm. They care, but they can’t know. They aren’t us. So they about read us. They go to graduate schools and conferences where others who are not us, talk about us. They have studied us. They have personal experience with their own families visiting us, having us stay a few days at the holidays, maybe even taking a vacation to visit us. The younger change agents know us through their grandparents. They certainly do not know us well enough to speak for us at the change agent strategic planning session for our community (however, community is defined). They don’t know us well enough based upon the number of letters they list after their name, or the number of CEU hours they have earned in the past two years, nor even after observing many of us and speaking with a few of us. All of these efforts are okay, but that is all, just okay. It beats a stick in the eye. But I want my culture to feel and be mine. I do not want you to own it and manage it as if you own it. When you or I think and feel it’s time to change my culture and your work rules and on the job behaviors lets listen, talk, plan, implement and evaluate as partners.”Real issues and concerns” seem to be work related rather than customer related. Person centered culture change takes two vague processes and ties them to each other in the hope of clarifying both. In fact it creates a third term which needs yet another term to explain what it really means, why and how it really happens. Enough with the words already. Some change agents ignore the trees (the recipients of their change efforts) in favor of attending to the tress they themselves have planted. Before you start planting more trees to replace my trees that you are cutting down, please, please let’s work on this together. Richard A Saving Grace Hello! Several weeks ago a couple came up to me after I had spoken and all had gone home except the three of us and my “ride.” They told me a story worth repeating, worth reading, and worth remembering, and therefore worth writing down. Several years ago his Mother came to live with them. She was deep into the symptoms of dementia, probably of this or that type and had not conversed with anyone for several years. However, she did say aloud a brief grace at every meal. She frequently conversed with herself in a language no one was able to figure out, so she was mostly ignored in conversations. One morning as the couple was working on their income taxes his Mom came and sat by them and started to “mumble” to herself. It soon became distracting to these two citizens hard at work on their obligation to their country, to file/pay their income taxes. They each repeatedly asked “Mom” to “please be quiet while we are working on our taxes.” “Mom” continued to mumble. Soon it became more than distracting, it became annoying. When they completed their task it was time for lunch. Before going in to eat lunch one of them told “Mom” how distracting her mumbling had been and asked her to remain quite for two minutes before she could come to the kitchen and have lunch with them. They watched their watches as the mom sat quietly in her wheel chair for two minutes, and then she wheeled herself into the kitchen. As they all sat around the table holding each other’s hands for “grace.” Instead of say “Bless this food…” Mom said, “Father forgive them for they know not what they do.” My response to hearing the story was to say “A men.” Richard I know what I see, or do I see what I know Hello! Last year a promising Nation-wide Imaging Initiative was funded by the National Institute of Health. Most everyone who owns a PET scanner, MRI, and/or Polaroid camera volunteered to spend some of the money. The goal was to discover, track, map, and measure the earliest of changes in the brains of persons who were in the early stages of dementia probably of this or that type, were at genetic risk of dementia, were in “mild cognitive decline (whatever that means). But what if I don’t know what I am looking for? What if I’m just looking because I can look? What if I know I am seeing something (that much I know - I think therefore I am?! I see therefore I know?) And what if I don’t know what it looked like yesterday or a year ago, and I can’t know what it will look like tomorrow, or in a year into the future? Turns out a picture is not worth a thousand words, these pictures produce thousands of words as everyone tries to explain what they are looking at and what it means - what at the same time having no basis of facts, no agreed upon consensus of what constitutes dementia, probably of this or that type. All I really know is because of advances in technology (unmatched by human understanding) I can now see something(s) today, I could not see yesterday. If I was only looking at one thing, it might be easier to know what I am looking at. If I knew if I was looking at a cause or an effect, it would be helpful. It is turning out that 20 million dollars was not near enough for me to be sure. Let me have 20 million more (and while you are at it, what about another 20 million for the stimulus funds) and I’m pretty sure then I will know for sure what I am looking at, what it means, and how that new knowledge is useful to the 10 million citizens who are living with and in declining cognitive skills. Better imaging, more color, 3-D (perhaps even 4-D!), additional brains to slice and dice - these are what is needed so we can all benefit from more of the above. Maybe “yes,” but I think “probably no.” Is it a gift from Alois that I can see the absurdity, the contradictions, the scrambling for after the fact, therefore because of the fact logical fallacies - and others don’t/can’t/won’t? Richard A person living with the diagnosis of dementia, probably of the Alzheimer’s type. “Half our life is spent trying to find something to do with the time we have rushed through life trying to save.” - Will Rogers: (1879-1935) US actor, lecturer, humorist Speaking about my mind, by speaking from my heart Hello! This is the reaction from a person living with the diagnosis of Dementia of the Alzheimer’s type to several of my reflections in Alzheimer’s From the Inside Out. He now frequently “stands up and speaks out” “Richard wrote in his book if he had a dollar for everyone who told him “you can’t have Alzheimer’s disease (AD)” he would be a very rich man. The same is true of me. I have it. I wish I did not, but I do. I am blessed having had it diagnosed early while in the very early stages of the disease. My Early Diagnosis has given me the opportunity to maintain a better quality of life. It further contributes to prolonging my stay in Early Stage. Every curse has its blessing. Mine is in having this terrible disease I have, caught early. I am positioned better to do something of value with it, contribute to my sense of self worth as a result. It is an altogether new volunteer activity for me the doing of which give me purpose and a very good feeling.” This was my response to his reaction: We are all victims of our own making, in that we all have participated in the development and maintenance of the culture in which we all now live. Now that some time has passed in our lives, we bump up against the values, the politicians, the policies, the budgets that we helped to create. What irony! What goes around truly comes around. Just how we can stop this selfish, self-centered culture of ours is a question that might be answered long after I have returned to cosmic dust. I’m not optimistic, but neither am I willing to pass the burden on to the next generation of elders to fix us all. Stand up, speak up! It’s not just all we can do, it’s ALL we ALL should/must do. Richard Yes, Yes and Yes Hello! So, if I cannot always say what I mean and/or I have trouble meaning what I say, can I find other forms of self-expression to let what is inside me out? Out, so others may better appreciate me and perhaps even understand me? Out, so I feel better about myself? The answers are yes, yes, and yes. Those diagnosed with early stage dementia can slow their physical, mental, and psychological decline by taking part in therapeutic programs that combine counseling, support groups, researchers report. Some of the benefits of this approach are comparable to those achieved with anti-dementia medications! Close the pill bottle and open the paint cans! The findings are detailed in the American Journal of Alzheimer’s disease and Other Dementias. “Most of the research on dementia and most of the dollars up until this point have gone into pharmacological interventions,” said Sandy Burgener, a professor of nursing at the University of Illinois and lead author on the study. “But we have evidence now from studies like mine that show that other approaches can make a difference in the way people live and can possibly also impact their cognitive function.” In the study, 24 people with early stage dementia participated in an intensive 40-week program. The intervention included biweekly sessions of cognitive behavioral therapy and support groups, along with three sessions per week of traditional Chinese martial arts exercises and meditation, called qigong (chee-gong) and Taiji (tye-jee). A comparison group of people with early stage dementia did not participate in these programs for the first 20 weeks of the intervention. Researchers are discovering that multi-disciplinary approaches - those that address patients’ physical, mental, and psychological dimensions - show the most promise in treating people with dementia, Burgener said. “There’s a lot of support for multi-modal therapies for persons with dementia, especially those with early stage dementia,” she said. Nursing professor Sandy Burgener Earlier studies have shown that such programs can work as well as anti-dementia drugs, Burgener said. Qigong and Taiji combine simple physical movements and meditation. Qigong is a series of integrated exercises believed to positively affect the mind, body and spirit. Taiji is a type of qigong that melds Chinese philosophy with martial and healing arts, said Yang Yang, a professor of kinesiology and community health and a co-author of the study. He is a master Taiji and qigong instructor whose research focuses on the efficacy of Taiji and qigong for older adults. Cognitive behavioral therapy is a form of psychotherapy that seeks positive alternatives to the beliefs and behaviors that can undermine a person’s health and happiness. Research has shown that cognitive behavioral therapy and support groups aid those who struggle with depression and other physical or mental health problems. Participants in the program benefited in a variety of ways. After 20 weeks, those in the treatment group improved in several measures of physical function, including balance and lower leg strength, while those in the comparison group did not. There were also positive cognitive and psychological effects, Burgener said. “We saw gains in self-esteem in the treatment group and pretty severe declines in self-esteem in the comparison group,” she said. “Those in the treatment group also had sustained and slightly improved mental status scores, which meant we were impacting cognitive function.” Both groups saw increases in depression, Burgener said, but the increase for those in the treatment group was a fraction of that seen in the comparison group. No additional benefits were seen after 40 weeks, but participants were able to maintain their initial gains. The program was so popular that she and her colleagues have kept it going for more than three years, with many of the first participants and their caregivers still engaged. “The clinical findings, from my perspective, go far beyond the statistical findings,” Burgener said. “People were happier when they were in the treatment group. Two men came in with walkers and left without them. One is in our Taiji group three years later and is still not using a walker.” Burgener is an advocate for further research into non-pharmacological interventions for people with dementia, which she sees as co-therapies to the drugs that are given to many people when they are first diagnosed. We need to clone her, or at least encourage other researchers to speak up and out about the need to fund more psychosocial research for people with dementia. “Funders and insurance companies are willing to put money into drugs, but it’s been a hard sell to get money for these kinds of programs,” she said. I agree, said Richard Taylor! Richard “It is what we think we know already that prevents us from learning.” - Claude Bernard: (1813-1878) French physiologist Links New Site Helps Elders Share Their Life Stories The Life Story Center at the Osher Lifelong Learning Institute National Resource Center in Portland, Me., recently launched a new interactive site for sharing life stories. The site enables elders and others of all ages to join in creating what is planned as the world’s largest fully searchable life-story archives on the Web. An easy-to-use format guides users through the steps of telling their own life stories — or helping others do the same. The site also makes it simple to contribute a life story to the online archive. _________________________________________ This is an interesting training video for professionals on art and dementia. It’s free (my favorite type of site), it’s interesting, and it seems objective and up to date. MetLife MindAlert Lecture Series: Art and Dementia _________________________________________ Join this group of world renowned gerontology and dementia care experts on July 31, 2009 for this conference on the UNCG main campus! The purpose of this full day conference is to provide innovative best practice methods to maintain an active lifestyle despite the cognitive, emotional and physical disabilities older adults with memory loss so often face.  A balance must be found between medical and lifestyle approaches. This conference will highlight the latest research along with best practices from around the world. The target audience is recreational therapists, nurses, rehab professionals, long term care administrators, and advocates for older adults. [Download a Flyer] 5.5 CEU’s will be available for Nurses 5.75 CEU’s will be available for Recreation Therapists and Nursing Home Administrators A certificate of completion will be given to all in attendance. ________________________________________ The Alzheimer Research Forum, founded in 1996, is the web’s most dynamic scientific community dedicated to understanding Alzheimer’s disease and related disorders. Access to the web site is free to all. Our editorial priorities are as diverse as the needs of the research community. The web site reports on the latest scientific findings, from basic research to clinical trials; creates and maintains public databases of essential research data and reagents, and produces discussion forums to promote debate, speed the dissemination of new ideas, and break down barriers across the numerous disciplines that can contribute to the global effort to cure Alzheimer’s disease. The ARF team of professional science writers and editors, information technology experts, web developers and producers all work closely with our distinguished and diverse Advisory Board to ensure a high-quality of information and services. They welcome our readers’ participation in all aspects of the web site. I post comments here from time to time. They need to read more voices of people with dementia reacting to their research, their interpretations, and their discussions. The Alzheimer Research Forum is an independent nonprofit organization. They are supported by grants and individual donations. The web site does not endorse any specific product or scientific approach. ________________________________________ StoryCorps is an independent nonprofit project whose mission is to honor and celebrate one another’s lives through listening. By recording the stories of our lives with the people we care about, we experience our history, hopes and humanity. Since 2003, tens of thousands of everyday people have interviewed family and friends through StoryCorps. Each conversation is recorded on a free CD to take home and share, and is archived for generations to come at the Library of Congress. Everyone has a story to tell. In 2006, StoryCrops launched an initiative to reach out to people affected by memory loss with an aim to support and encourage those affected by sharing their stories. The project is guided by an Advisory Board of nationally recognized leaders in the field of memory loss, and all interviews are facilitated by their specially trained staff. Millions listen to the award-winning broadcasts on public radio and the Internet. StoryCorps is one of the largest oral history projects of its kind, creating a growing portrait of who we really are as Americans. Although this service is free, a donation of $25 to help cover costs of recording, archiving, and preserving each interview is appreciated. Where’s Richard I’ll be speaking at a conference for the Alzheimer’s Society of Durham (Canada) on June 23rd. I am speaking at the New Authors Conference at the University of Waterloo from 1-3pm and in classroom BMH 2703 on June 24th from 11-12pm. Contact Loretta Tanner (ltanner@alzheimerdurham.com) and Leah Sadler (lsadler@healthlylivingwaterloo.ca) for more information. I hope to organize some of my writings I have produced since Alzheimer’s From the Inside Out was published in 2006 in July and August.  My brother has volunteered to work with me on this project.  I won’t be doing that much traveling these two months. I will be speaking in Houston on July 21st at the opening of Autumn Grove in Atascocita.  Please contact Amanda Bailey (amanda@autumngrove.org) for more information. I will be speaking for the Alzheimer’s Alliance of Arkansas program August 10th and 11th.  On August 10th I will be speaking in Hot Springs from 9:30-11:30am and the Second Presbyterian Church in Little Rock from 2:30-5pm. On August 11th. I will be speaking in Heber Springs from 10-11:30am. Please contact Janet Nelson (janet.nelson@alzark.org) for more information. I will be speaking at the 9th Annual Pioneer Networking Conference on August 11th, 12th, and 13th in Little Rock, Arkansas.  Please contact Karen Stobbe (karenstobbe@charter.net) for more information. I will be speaking September 12th at Sun City Huntley in Huntley, Illinois from 1-2:30pm. For more infromation please contact Nancy Turngren (NTurngren@centegra.com). I will be speaking September 19th at Warwick University in the heart of England. Please contact Sarah Heseltine (SHeseltine@alzheimers.org.uk) for more information. I will be speaking in Scotland September 21st-23rd. For more information please contact Andrew Ketteringham (Andrew.Ketterinham@ alzheimers.org.uk)

“I’m an old man and have known a great many troubles, but most of them never happened.” Mark Twain Mark Twain, I am not Hello! But that does not stop me from viewing the world, especially as it relates to people living with the symptoms of dementia, as at times absurd, at times insensitive, at times well intended but badly off the mark, and almost out of touch with the reality of any one human being living with a diagnosis of dementia probably of this or that type. Folks who run memory and assisted living communities are willing to spend thousands upon thousands of dollars to improve their ability to manipulate our behavior by (buy) adding this, repainting that, buying this or that - manipulating the environment in which we live - so we will live healthier, happier, contented, under control lives. Here, eat off this red plate and you will eat more than if we gave you a white plate. Eating more is good for you. Here play with this dog or cat or worst of all this doll, it is good for you. The act will distract you from dealing with yourself, with today, with yourself. We don’t have the time and/or inclination to better understand your needs and wants - maybe this animal, vegetable, mineral, plant, or doll will. Here, fold these clothes, even if they don’t belong to anyone in particular. Being busy with your hands keeps your mind at rest, and a sleepy/sleeping mind frequently produces a non-agitated resident. If you want to live here you can’t act agitated, even if you feel like it. “The trouble with the world is not that people know too little, but that they know so many things that ain’t so.” -Mark Twain Comes now the snoezelon room. According to those “in the know” Snoezelon is an alternative treatment approach in which people who have Alzheimer’s disease and other types of dementia are offered opportunities to become more aware of their surroundings. This allows them to react better to their environment and to the people who are part of it, and to experience inner peace and contentment. “Be careful about reading health books. You may die of a misprint.” - Mark Twain The theory is that overstimulation of the senses can help people who find it difficult to connect with their world. Snoezelen is painless and, in many cases, has been getting positive results in people who have Alzheimer’s disease and other dementias, as well as in children who have autism. Sensory stimulation History of Snoezelen In the 1970s, a psychologist named Ad Verheual observed how his disabled patients reacted and interacted with their surroundings, and found that introducing them to the five senses in a focused way helped to both calm and activate them. Verheual shared his findings with a colleague, Jan Hulsegge, and they published a book called “Snoezelen,” named for a combined Dutch word that means “seek out” (”snuffelen”) and “relax” (”doezelen”). From this humble start, the Snoezelen concept was born, and today multi-sensory rooms known as Snoezelen Sensory Rooms are used in a variety of settings, including nursing homes and facilities that treat autism. A Snoezelen sensory room is designed to challenge the senses of the participants in a nonthreatening way and to encourage them to interact with it. This can be achieved by providing huge comfortable pillows, playing soothing background (e.g., cascading water, birds singing, wind through trees), placing bowls of berries in the room, offering an interactive panel where patients can project colored lights onto a blank wall, hanging colorful and touchable mobiles from the ceiling, and filtering in pleasant smells such as lavender and cinnamon. “Life does not consist mainly, or even largely, of facts and happenings. It consists mainly of the storm of thought that is forever flowing through one’s head.” Mark Twain Now who can be opposed to “inner peace and contentment?” Who can be opposed to sitting a room full of bowls of berries, birds, wind, cascading water; a light show; and everything smells like cinnamon toast in the morning? I’m not opposed to it, but I am suspicious of it.  Much of the effectiveness research comes from groups of folks who have mental illnesses. Dementia is not a mental illness! Some of its direct and indirect symptoms mimic mental illness. Sometimes dementia can lead to or come from forms of mental illness. But it is not a mental illness. “One learns through the heart, not the eyes or the intellect.” Mark Twain The Medical model treats the symptoms of dementia as if they sprung from a mental illness. Folks are (over)medicated and their symptoms seem to go away. But, does the dementia go away? Of course not, just the behaviors that are annoying and threatening others go away. I am still trying to figure out today, figure out who I am. You just made it harder for me. Now you want to over stimulate me in order to under stimulate me. You want to pretend that I have the ability to understand and talk/think my way out of dementia if only I can get myself calmed down. Others want to believe if only they could discover the impact of my environment on me then they could change it - changing me at almost the same time - and it all would be for the better. If only they knew the S (stimulus), they could alter, control the S (response). “The holy passion of Friendship is of so sweet and steady and loyal and enduring a nature that it will last through a whole life - time, if not asked to lend money.” - Mark Twain Don’t stop building snoezelon rooms; buying red plates; and importing kids, plants, and pets into my community. Just get your priorities straight. Don’t let yourself believe new is better, more is better, different is better. Some new, more, and different may be needed, but what is needed first, last and always is: “What about me?” Yes, I just wrote the words that keep many mental health professionals in business. It is a question we ask, an answer we want/need/seek at least seven times a day. Some of us are so good at repressing this question we only whisper it to ourselves, but in the end it is our own happiness we all seek. Persons with dementia need more help with this nearer- end-of-life quest than do 20 or 30 somethings. They can still drive. They still have a job (some of them at least). Most importantly they still have a purpose or possess the skills to discover and create a purpose for themselves. Who wants to spend some time, some money, some more staff time getting to know me? Is it not faster, cheaper, better to attempt to shape my behavior by shaping my environment? It is slower, expensive, and better in deeper ways than any environmental manipulation can produce to turn out the lights, turn down the music, leave the berries, cats, dogs, plants, and red plates in the hall, and come into my room (you call it my home) and sit with me, talk with me, listen to me, be fully with me. Richard The spark of life - is life. It is the light in the eyes of every baby born on the planet. It produces heat as well as laughter. It lights up the lives of others, and provides the light for all human beings to see and be seen in their full wholeness, in their full humanity. The symptoms of dementia cause the spark to flicker, at least it appears that way to others who look in our eyes, and sometimes it feels that way for those of us who look through dementia-dimmed eyes. But the spark is there. Where life is, so is the spark. All it takes to brighten itself is others who believe there is always a spark in all of us. All it takes for the spark to reveal itself (most times) is patience, love, and support. And for those deep into the symptoms of dementia whose spark appears to others to be out for all practical purposes - all it takes is lots and lots of patience, love, and support - for that is all we have to give, and it must be all we need to receive - even though we cannot thank you for it. “Brighten the corner where you are.” advises an old hymn. “Someone far from harbor may need help across the bar.” Well, I’m not worried about getting across “the bar” I’m still focusing on today. Please, believe and behave as if we all have the same spark, the same “life”, the same human needs even though we live with a cognitive disorder. Show us your spark. Believe in our spark. Together we are always more of ourselves when we are surround by others who believe in us, and ultimately in themselves. The Spark of Life movement/approach/method can be/should be a part of every carers life, everyone who is living with dementia, and indeed everyone on the planet. But for now lets all concentrate on the caregiver/dementia segment of the population. Richard Its not OMG, its Ohmmmmmmmm - - or if I tell you my Mantra will I disable one of the tools I use to slow down the appearance of my symptoms of dementia? Mediate first, and then think. It could help your brain resist the onslaught of symptoms of dementia. Ohmmm! Long ago, and far away, when I was an aging hippie I stumbled into transcendental meditation. I was sure, as were lots of other meditators ,that if I was living in a community in which more than 2% of my neighbors were meditating on a daily basis the group synergy would somehow lower crime, reduce the divorce rate, and perhaps even reduce tooth decay in my community . It worked! Crime went down!! (Bloomington, Indiana) Ignoring the fact crime always went down in the Summer when there fewer students in town (Bloomington is the home of Indiana University), it made me feel better about myself because I was making a difference in my community. Comes now research to suggest meditation may not only lower the crime rate it may actually help brains being overwhelmed by dementia of this or that type cover up, slow down, create work-a rounds for the symptoms of dementia. I do not think it is accurate to say it slows down the progress of the disease, we do not know that. What we do know is it slows down the impact of symptoms. Personally, I believe a meditating (meditated?) brain is somehow better able to muster what remains of its natural defenses to keep me from having to deal with the symptoms by creating temporary cognitive solutions to the symptoms. But, whatever meditation does, however it does it, it seems to help! A University of Pennsylvania study shows that mediation slows Alzheimer’s. Richard We are still missing lots and lots of missing links Hello! Plaques, Tangles in Brain Don’t Always Lead to Alzheimer’s. Study raises questions about possible link New British research provides more evidence that the bits of gunk in the brain known as plaques and tangles don’t necessarily lead to Alzheimer’s disease, as many experts have long believed. In fact, the study found that many people over the age of 75 had signs of significant clogging in their brains but still managed to avoid senility. “The findings don’t have immediate ramifications for the treatment of Alzheimer’s disease, which remains incurable and only somewhat treatable. But in conjunction with other studies, they could redirect ongoing research,” said Dr. Gary Kennedy, director of the division of geriatric psychiatry at Montefiore Medical Center in New York City. “A lot of what is out there that’s focusing on reducing the formation of amyloid plaques and tangles may just be off the mark,” Kennedy said. Amyloid plaques are globs of protein that form outside brain cells and stick together. Tangles are bits of protein that develop inside brain cells and create havoc of their own. Both have been linked to Alzheimer’s disease. In the new study, British researchers examined the brains of 456 people who had donated their bodies to science. The subjects were 69 to 103 years old when they died. The findings appear in the May 28 issue of the New England Journal of Medicine. The team found a strong link between clogging in the brain and Alzheimer’s in 75-year-olds, but the connection lessened by the time people were 95. In other words, plaques and tangles developed in very old people just as in their younger counterparts, but the very old weren’t as likely to develop Alzheimer’s. The picture is not perfectly clear, however. “At all ages, there are some people who don’t become demented before they died — despite having a lot of plaques and tangles,” said study co-author Dr. Paul Ince. “We do not know what would have happened if they had survived.” “It’s possible that Alzheimer’s disease shortens life, so people who are susceptible to it simply don’t make it into the older age group,” reasoned Ince, a professor of neuropathology and head of the Academic Unit of Pathology at Sheffield University Medical School in the U.K. Also, he added, the study suggests that people who become senile at a very old age may be affected by another factor — shrinking of the brain. As for future research, “we need to take account of the ability of some people’s brains to withstand Alzheimer’s better than others,” he said. “If we knew why, it might help us with strategies to delay the onset of dementia.” “For now, doctors are very limited in how they can treat Alzheimer’s,” Kennedy said. “Medications can treat symptoms, much as painkillers help some people tolerate arthritis, but they don’t cure the disease,” he said. “And” he added, “in many cases, the drugs simply don’t work”. Richard

Stand Up! Speak Out! Now!
If you do not tell them, how will they ever know?
Do not become a premature victim (by even one day!) of your own silence.
Speak up about and for yourself and those who will follow.  Ask Carers and Friends to speak up for themselves, and for you and with you.

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 cannot change unless they know, and the cannot know unless and until you Stand Up! SPEAK UP! Now!

Seek to create and except from others a Palpable Sense of Change and of Urgency!

Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC

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