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Alzheimer’s From the Inside Out, LLC
November 2008 Issue # 8
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Hello
And thanks for opening the November issue of my newsletter. I am Richard Taylor and for the past several years I have been living with the diagnosis and symptoms of Dementia, probably of the Alzheimer’s type.
This is my first annual mostly Canadian issue. I have recently returned from Toronto, Canada. There I spent time with more than a 100 folks with dementia, and their carers; an organization committed to empowering people with dementia (MAREP-), a National and regional Alzheimer’s Society that is leading the efforts of public and private agencies to directly support and involve people with dementia in designing and evaluating their own care plans; and lots and lots of very friendly, bright, and surprisingly tall people. Almost everyone who presented/spoke at the conference was living with some form of dementia. It was amazingly wonderful to be there. A dementia conference without one M.D. speaking on the program. A dementia conference at which people with dementia were talking with other people with dementia. No experts with answers, just people with experience to share with each other. And, it was organized and presented by lots of folks living with dementia on the planning committee. This was a “Changing Melodies” conference.
I’ve included the first half of my presentation in this issue and I will put the rest of it in the December newsletter.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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Independence, Dependence, Interdependence, Alzheimer’s Disease and Me
Hello!
I, like most people living with the symptoms of dementia fear a lost of independence. I want to come and go at will, I want to cook by myself, I want to drive, and I want to be in charge of something! I want to be the “go to” person for some things. I’m not and/or I can’t! I want to be trust to take care of myself in a million small ways. I’m not, trusted that is.
Increasingly I am more and more dependent on others in ways I never imagined. And, at the very same time I am insecure about my diminishing independence. I am confronted with the need to be dependent and of living with dementia.
Perhaps I need to open myself up to new relationships of interdependence with those who surround me and love me. Perhaps they too need to do the same thing. We all need to realize and acknowledge we need each other in ways that we previously did not. We are interdependent, but not co-dependent.
We are each fully ourselves, by ourselves and with ourselves. This I believe to be the biggest fear to most all folks dealing with dementia in one way or another. But we can be a richer, happier, more purposeful person when we allow ourselves and others to become interdependent with us, and us with them. We are social animals/mammals (I’m not sure if it is one of these or both, and I didn’t want to offend someone who knows the answer). There is a better possibility of safety in numbers. There is a higher probability of being loved and loving someone else in numbers. And for folks with declining cognitive skills there is a longer period of living on purpose in numbers.
We need you to be more than we can be by ourselves. We need your love and support. You need our love and support. We can best give that to you when we ourselves are living a purposeful life. It’s in your best interests to enable and support us, so we can in turn love
you.
Richard
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The more we know, the more less we know we know
Hello
Confused, so are the experts. Consider this summary of the state of imaging studies aimed at your head and trying to diagnosis dementia ofthis or that type. Confused, so are the experts!
“Considering the findings of these and other imaging studies, past and present, those who see the glass as half empty may wonder whether the reams of data are actually refining our understanding of pathology and progression, or confusing the picture. “The more studies that come out, the more complicated things become,” Jack said. “That’s inevitably the way it is.”
However, in his more than two decades of work in this area, he sees within the thicket of data several lines of consensus. People with brain pathology are more likely to be impaired and, if followed over time, more likely to decline than those without pathology, Jack said. Furthermore-though it may be hard to predict, for instance, whether someone is worse off with a shrinking hippocampus or a buildup of white matter lesions-people with multiple indices of pathologies are more likely to be impaired and to progress more rapidly than those without. “It all hangs together in a thematically consistent way, but I appreciate the difficulties people would have in interpreting all these hundreds of papers that have come out,” Jack said. “That’s just the nature of science!”
In an uncharacteristic (for me) few words “We don’t know Jack about it.”
The complete analysis can be found by clicking on this link.
http://www.alzforum.org/new/detail.asp?id=1940
Richard
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Speaking to each other - Listening to the voices of Dementia
Hello
The same enlighten group of Canadians helped produce a series of five informative booklets. They are free for the asking. Please ask them for a set or two and pass them around after you have read them!
The By Us For Us© Guides are a series of guides created by a group of talented and passionate persons with dementia. The guides are designed to equip persons with dementia with the necessary tools to enhance their well-being and manage daily challenges. What makes these guides particularly useful is that they are created By persons with dementia For persons with dementia.
Memory Workout - The Memory Workout Guide provides examples of cognitive exercises and it encourages persons with dementia to develop and maintain regular “workouts” for the brain so as to function better while engaging in enjoyable activities.
Managing Triggers - The Managing Triggers Guide is a practical resource that outlines the main triggers experienced by persons living with dementia, and offers solutions for how persons with dementia and their partners in care can manage and alleviate these triggers. The guide focuses on managing triggers associated with social situations, verbal communication, changes of abilities and memory, and managing your environment and negative emotions.
Enhancing Communication - The Enhancing Communication Guide is a comprehensive resource that outlines the main challenges associated with communication as experienced by persons with dementia. It explores communication challenges that can occur with family and friends, in social situations, and when communicating with health care professionals. The guide provides practical solutions for persons with dementia and emphasizes the importance of using a wide range of communication strategies in order to make opinions, feelings and experiences known. It also suggests ways that family partners in care and professionals can enhance communication with persons with dementia.
All three guides are now available through the MAREP website, or contact Janet Mooney at 519-888-4567 ext. 32920 (jnmooney@healthy.uwaterloo.ca) for more information. A printable order form and an online order form are available.
http://www.marep.uwaterloo.ca/products/bufu.html
Richard
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“Oh Canada,…”
This is more information about the organization that sponsored the conference. Their web site and materials are worth checking out. They are good, bright, focused folks of got “it,” and want to pass “it” around.
The Murray Alzheimer Research and Education Program (MAREP) is a major division of the Research Institute for Aging (RIA) in the Faculty of Applied Health Sciences, University of Waterloo, Waterloo, Ontario, Canada, and is located in the Lyle Hallman Institute for Health Promotion.
MAREP’s mandate is to …
Enhance - enhance the ability of formal and informal partners in care to respond to the needs of persons living with Alzheimer’s disease and related dementias,
Build - build individual capacity by strengthening skills and providing resources and information to persons diagnosed with dementia to help them contribute to their own care and live meaningful lives,
Partner - foster partnerships with persons with dementia, family partners in care, and professionals to create strong links and working relationships that enhance the well-being of all those involved in the dementia journey, and
Improve - ultimately improve the quality of life of those touched by dementia, especially persons with dementia and their families.
Murray Alzheimer Research and Education Program RBJ Schlegel - UW Research Institute for Aging. University of Waterloo, LHI
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Playing and Living a Changing Melody
Hello
Itziah Pearlman, a master violinist, once broke a string on his violin while performing one of his own compositions in Carnegie Hall. Without missing a beat he composed and played a new melody with his violin that was missing one string.
I guess you could say people living with dementia have a broken string. We are still playing, living, composing as we go along. Most folk’s strings stretch with age, mine are breaking. Few can understand or appreciate my melody, except for other performers who also have a broken string or two. I am trying to play as close as I can to the original melody, but I now need your help to play on your instrument my missing notes/sounds. If we still want to be committed to staying and playing together we are both going to have to learn how to play our instruments different from how we learned when we were children.
My need to make music hasn’t diminished simply because I broke one of my strings. My need to harmonize with you hasn’t changed simply because I can’t plan like I formerly did. Let us play together. Let us sing together!
The above story originates with the Canadian MAREP folks. It’s a metaphor for how they have learned the best way to support someone with a changing melody is first to listen to them. It is to involve them in the rewriting of their own compositions. It is to follow their leads in practice sessions. They, people living with dementia, are in the best position to know how to create their songs. The function of people who don’t have dementia is to be the back-up band. Together all will make better music than any one of them alone.
Let us sing and play together!
Richard
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Continued from feature article on right….
For caregivers: Try relating to me as your best friend. Listen to me, hear me out, do not try to change me into someone I was or you want me to be. I am in need of a best friend. You know many of us claimed this best friend relationships was true in our wedding vows, and maybe even when we renewed them after 20, or 30, or 50 years. Well now, I hope it is still true. And heaven knows we both need a best friend to make it through each and every night.
For professionals: Please practice and model relating to me as a whole human being, whose cognitive abilities are unevenly declining. I still have some things to say, I still have the right to say some things, especially some things when it comes to how I am treated, what I wear, when I get up, what I swallow, where I live. I especially need the professional insight, skills, and experience touted by the many degrees posted in your offices.
I need you to be my advocate, my enabler, my reabler, my teacher, my cheerleader. I need you to help me and my caregivers create work-arounds for the symptoms [l2] that come with declining cogitative abilities. I need you to educate, to demystify, desigmatize [l3] the label branded on my head. Do this for me, my family, my friends, other professionals, politicians, and the World. Hold my fearful feet [l4] to the dementia bonfire. Help me use the energy from my fears to motivate me to action; to change; to address the realities; the family dynamics that is the fire that comes from the words you have dementia probably this or that type.
I had to first become dependent, somewhat self confident, before I could even begin to address interdependency. This initial withdrawal is both a natural and self-destructive defense mechanism. It was not good for me, any of my family, or all of my family. We need a professional to explain, guide, support, and help us manage our way through the ever-darkening waters of dementia. We do not need more pills, thank you very much. We do not need money thrown out the window in hope that it will fall on a cure.
We need psychosocial research, doled out in a humane proportion to the amount of dollars currently being spent on bench research for a cure for a disease or diseases or syndrome, or natural process gone awry. We need to be encouraged and supported to be inclusive. I do not need coaching in how to live in the past. I need coaching on how to still go out and speak, yet do so in a manner that doesn’t keep my whole family awake from the moment I leave to the moment I return.
I need you to facilitate the building of social relationships with others who also live with my diagnosis. I need you to support my need to be hopeful about myself, every day. To trigger my flickering appreciate for today. I need you to enable and empower me and my caregivers to live in the love we have for each other, enabling and empowering us both to respect and dare I say feel good about who we are and who each other is.
I need you to help produce more me’s. I believe everyone with dementia has an obligation to stand up and speak out. If we do not, how will others know what it is like to live with dementia of this or that type? Help us break our own self imposed silence, the silence the stigma shouts at us and at others that we are fading away, we are in the midst of the “the long good bye”.
To accomplish these hopes of mine, and after spending time with hundreds and hundreds of people living with and in the various forms of dementia, I am confident these are also some of their hopes, we need you to host, or organize, to support your own changing melodies forums. We need you to build upon what has already been done (the changing melody tool kit), promote, and live by the principles of a changing melody forum.
Please, for my sake. For the sake of my family, for the sake of others walking down this road less traveled, for your sake: we all need to change our melodies to produce a more harmonious life as we all confront in our own ways the consequences of the words “you have dementia, probably of this or that type.”
Let us all sing together of our love for each other. Let us each sing our parts, but blend them harmoniously into a purposeful day, live to fullest, enjoyed to the max by each of and by all of us together. Let us truly sing together.
Richard
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Links
Using her decade of life experience, her aim is to provide you with a portal to some of the most relevant information on how to deal with the dementia experience. She spent 10 years of her life looking for this information, now you can access with with the click of a button.
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As you muct know by now, a week ago, I spoke to 250+ individuals living with the symptoms of early stage dementia and their carers at a conference in Toronto, Canada. It was an amazing experience for yours truly. That many kindred spirits, that many folks sharing a seat in my boat, we were all in the same room communicating with each other. Wow! There is an organization in Canada, operating out of a University in Waterloo that has been hosting these conferences for five years. To read about how they did it, how they do, how they would like others to do the same things please, please check out this link.
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Changing Melody
Toronto, Canada
November 15, 2008
This is one of two opportunities I was given to share my experiences with dementia with 250 other folks also living with a similar diagnosis, and their caregivers.
I knew what the neurologist was going to tell me. I have Alzheimer’s disease. As I walked into his office accompanied by my spouse and brother, I suddenly started to feel very sad. The Doctor walked in and sat down, looked directly at his desk and said “Richard you have dementia probably of the Alzheimer’s type.” What he said, what we said after those words was not retained in the memories of me my spouse nor my brother. As we drove home, no one said a word to each other.
As I opened the screen door suddenly, I began to sob. The sobbing turned into crying, punctuated by deep uncontrollable gasps for air even as anxiety was tightening my chest. I ran out in the backyard and literally whaled.
Hello
My name is Richard Taylor. I hope that I live in the about to be transformed United States of America. I live in the land of Indians, oil, cowboys and did I mention oil, I live in Houston Texas. [l1] I hope that the promised transformation of my nation includes the compassion, the appreciation, and the inclusiveness of people with dementia that surely is already a part of the fabric of our neighbors to the North, the wise and sometimes chilled Canadian’s.
I have been living with the diagnosis of dementia probably of the Alzheimer’s type for the past seven years. Twenty minutes after hearing the diagnosis, I began to cry; I pretty much cried for three weeks straight. My wife cried on the way to work and on the way home. She too cried for several weeks. After we were emotionally exhausted, I the figurehead of our family, after all I have a PhD and I am a psychologist, but in reality our family structure is more matriarchal than it is patriarchal. I called a meeting.
As a family, we sat down around our kitchen table to face the realities of the diagnosis. I began by asking what as individuals and as a family we should consider doing differently now that we knew for sure that I had dementia probably of the Alzheimer’s type. Each person, including myself, concluded there was really nothing different to do differently since after all I was still me; I was still, dad, Grand Pa, Richard.
We will cross those bridges when we come to them, became our family mantra, and we chanted that over and over again.
This was the first and biggest mistake we made as a family and I made as a person living with the symptoms of dementia. To pretend as if our lives had not changed, and were not changing, and to pretend we had the resources to deal with whatever changes might pop up, this was, with the benefit of hindsight naive, wishful thinking, a clear form of denial, and a band aid to cover the stigma, myths, and fears each of us entertained about me, themselves, our family and Alzheimer’s disease.
Waiting until I got lost in the Kansas City airport when someone failed to meet me, waiting until I wandered away from my brother’s house while looking for his lost dog and I wasn’t located until three hours later (he found the dog faster than the police found me), waiting until I found myself driving the wrong way on one of Houston Texas’s fabled overcrowded highways, waiting until we all again started crying spontaneously again because we could not contain the rational and irrational fears which were consuming each of us, crossing the bridges when we came to them simply didn’t work for us. Nor did going it alone, each our separate ways.
Spending a year at home, basically by myself, waiting for my granddaughter to come home from school at 3:30 so we could play, unable to drive, isolated from friends who claimed they just didn’t know what to say to me so they just stayed away, I began to sleep more and watch more TV. I began to withdraw into myself, I began to consider my deaths, and I imagined two deaths for myself. First the death of me as a person. The day the velvet curtain fell between the world and I and I no longer knew myself, nor did anyone else who previously knew me.
And then there was a second death to consider; the death of the rest of me, my body. Is it any wonder I became depressed.
Quite by accident my daily writings to myself were turned into a book and the day after it was published the world apparently thought I was smarter and more interesting to listen to than I was the day before it was published. People started to call me, ask me to speak, pay me. At last, I stumbled across a new purpose for my life. There was a smile on my face. There was a reason for me to wake up in the morning and open my eyes. I was doing something that made me feel good about myself.
Throughout the first three years of living with the diagnosis, I thought about my own thinking. After all, it is what I did for a living, think about other people’s thinking so it was only natural for me to think about my own thinking. And that is when I concluded I was alone. Virtually every interaction I had with those who knew I had Alzheimer’s disease began and ended with her and or him saying goodbye.
Sometimes they said it through the look in their eyes when I met them sometimes they said it by the way they hugged me. When they left, it looked like and felt like good-bye.
I became, and am now a champion, and advocate, a crusader, for myself and the millions of others living in this world who daily confront the symptoms of dementia. I want others to know and treat us as if we are whole people. We are not half-full or half empty. We will never, ever be a shell of ourselves. Later in the disease, you may knock on my door and I may not answer, but that does not mean I am not home. I am still Richard. I am still wholly and fully a human being. I have a right to privacy, dignity, respect, and I am still able I believe perhaps in ways which you cannot appreciate because you don’t have dementia: I am still able to appreciate myself, to show the love in my heart to those I love, and I need to feel love, I am in short no different than you, except I have dementia probably of the Alzheimer’s type. My world is full and complete, it fills my mind, it fills my days, and it’s the professionals and caregivers who remind me of parts of my old world that I cannot access, or I’m confused about.
Most unfortunately, late in the disease I begin to lose my sense of today, my awareness of my own humanity. I will need to be re-enabled and then continually enabled to be Richard. And I turn to professionals and caregivers and ask you to do this, as my own abilities to do this for myself diminish I need your support to compensate for my deficits; Not ignore them, not defect them when they pop up in my conversation, not tell me I am wrong to have the feelings I have because I don’t have the same recollection or feeling reaction to facts as do you.
I know you still long for the old Richard. You still want and need me to be someone I am not and soon I will not be able to even pretend to be. I know I need you. I hope you make more of an effort to know how and why that is true. I hope you will teach caregivers and each other how to listen to us, when to listen to us, how to appreciate us for who we are, not who we were.
Your love, your dedication to me as your patient, client, and friend must evolve as has mine for you. But since I am the one with the diminishing cogitative abilities, I need you in several different ways than I previously needed you.
(Article continued in left column at the bottom of the newsletter)
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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
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