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Greetings!
From 36,500 feet above sea level. I am writing this as I fly over Iceland, returning home from a very successful trip to Germany to celebrate the translation and publication of my book (Alzheimer’s From the Inside Out) in German. Thank you for taking your time to open my newsletter. I will report on my experiences and impressions of living with the symptoms of dementia in Europe in my January Newsletter.
I have much to say that didn’t find space in last month’s ode to Canada, and the supportive and inclusive attitude of many Canadians to see people living with the symptoms of dementia as whole, complete human beings who are not waking every morning to say good bye to another cognitive function, but are saying hello to themselves and others as they anticipate another purpose driven, and purpose filled day.Thank you for taking your time to open and read this.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G.B. Shaw
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Here is what I have been thinking about for a while
Hello!
Why can’t others read my mind?
I have moments, minutes, hours, once in a while days when the unintended consequences of well meaning people begin to bother, irritate, overwhelm my ability to forgive myself and them for thinking they should know what it is like to live with fading cognitive abilities. I sometimes inadvertently wince when someone tells me “I just don’t know what to say to you.” How about a simple “Hello” and let’s go from there.
I turn away from people who speak louder to me than to others, as if dementia causes diminishing ability to hear. I sometimes smile, and sometimes frown when someone tells me to do something, rather than asks me if I want to do it. They frequently ask or tell me to do something that prior to my diagnosis they never would have mentioned in the first place. “Put your coat on now.” “Don’t do that.” “Sit here and I’ll be right back.” “Here, let me do that for you, you know you can’t do it by yourself.”
From time to time people ask me if I need “help” when what I really need is “Support” as I attempt to do something that requires an intact cognitive function that I don’t have. Let me do as much of something as I can, then offer to fill in the parts of the process with which I am having trouble.
I can put gas in the lawn mower, but sometimes I can’t find the gas tank. I can count, but I can’t figure out what is an appropriate (or for that matter inappropriate) tip. I still know how to boil water, but I many times forget it is on the stove. I can read recipes, but increasingly I don’t follow them in the right order, and I sometimes leave out some steps or ingredients written in the recipe.
Why can’t we all, why don’t we all just sit down and talk about these inadvertent kicks, cuts, and blows to my sense of self and self confidence?
Too busy? Don’t understand it? What’s the big deal?…you decide, and then do something different when you speak with someone who is living with the symptoms of dementia. Please!
Richard
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Have I been cloned without my knowledge?
Hello!
Am I a clone of someone else?
Over the course of this past year, I’ve met myself about 50 times.
Prior to speaking I try to go around and introduce myself to everyone in my audience. I ask them why they are here, and engage in chit-chat depending on their willingness to join in the chit-chatting. Sure enough, there is at least one person sitting in my of my audiences who has been living with the symptoms of dementia for 5-10 years. He/She is a former University or College someone - Dean, Professor, Department Head - who was in her-his early to mid 50s when he was diagnosed. She taught for a few more years, and retired far earlier than he wanted to.
Now he writes, she speaks, they are working on a book or an article - s/he has found a new and strong purpose for themselves. They are involved in life. They wake up every morning with something to do; something in their mind should/must be accomplished by them before they go to bed that night. They continue to take an active interest in politics, in family, in others. They listen/watch the news. They talk about and actively care about the world around them.
Yes, they are me. I am them. I honestly believe going to school longer than any person really has to in order to be successful in the world, being interested in language and its use, being intellectually curious about a whole bunch of things, hanging around with younger minds than mine, and challenging them and being challenge by them, being a proactive citizen and parent and grand parent….these are some of the elements, some of my defenses, some of my tools that have allowed me to stay just one step behind Doctor Alzheimer as me marches back and fort, from my left ear to my right ear - tangling neurons and stepping on memories as he trods along.
I realize I am not special, or blessed, or even different. I’m lucky that my education, life style, choices I made growing up inadvertently prepared me for my struggle to my death with my aging brain.
Richard
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Where’s Waldo Richard?
I will be attending a pilot program at the Museum of Fine Arts in Houston on January 19th and February 16. This is a program where folks with dementia and their caregivers come into the museum on the day it is closed and talk about works of art with other folks traveling their same road of cogitative decline. The program started at the Museum of Modern Art in New York City and I am working with them to bring and expand it here in Houston. If you would like to bring this to your community please contact me, and I would pleased to assist you.
I speaking and visiting with Michael Verde and his innovate and successful Memory Bridge project participants, volunteers and staff in Chicago January 20-24th.
I will probably meet with early onset/early stage folks in the Chicago area through the efforts of the Illinois Alzheimer’s Association, but I do not yet know the time and place.
I am meeting with the good folks who belong to the Without Warning early stage/early onset group at Rush University Medical Center(Rush Alzheimer’s Disease Center) while I am in Chicago.
I will be speaking in Beaumont, Texas on the 30th of January at the Buckner Assisted living Community.
I will be speaking at Christ the King Lutheran Church in Houston on February 12th.
I’m still looking for speaking opportunities this coming Spring, Summer and Fall. Please call or write me. I speak with caregivers, people with dementia, staff members of memory and assisted living communities, nursing students, medical students, residents, Physicians, social work students, O.T. and P.T. students, publications, and the general public. |
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I thought
I had overcome
everything worth fearing Not!
For as long as I can remember, I have feared snakes. I have at one time or another in my life feared polio, shots, tall women, death by suffocation, failing a spelling test, asking a girl to go out with me, the atomic bomb, going to weddings where Aunts would kiss me, and did I mention women who were taller than I was?
I am older now, we have all but eliminated polio as a disease in the world, shots
don’t bother me, frankly I seldom run into women who are tall than I, I still
become anxious at the thought of drowning, I do not have to take spelling tests (Thank heavens for Spell Check), I’ve learned to live with the bomb, I can now outrun most of my kissing aunts, and most all of my family is through getting married (or at least I hope so as far as my own children are concerned).
So what is left for me to fear? I’m not concerned with being stalked by lions or Dinosaurs. I am large enough that street criminals do not present much of a threat to me.
However, most unfortunately for me I now am living with the disease of dementia, probably of the Alzheimer’s type. I AM PROBABLY MORE FEAR-FILLED NOW THAN I HAVE EVER BEEN IN MY LIFE. I am fearful of tomorrow, and tomorrow and tomorrow. I am beginning to be fearful of my todays. I am fearful of myself and my ability to know what is going on within and around me.
I am fearful of others because I sometimes know, and sometimes suspect those around me are not being truthful with me. In fact it would be easier to list what I am not fearful of: my grand daughters, my dog, my garden, the Dali Lama, and a few other people and things.
I do not fear things outside of me; I fear what is inside of me. I fear I am losing
control of what rightly or wrongly I have long thought I was in control of, me,who I am, how I am, how I think, what I think about. It’s all seems up for grabs now.
What happens when I lose confidence in my ability to think? When I begin to suspect and then confirm that what I thought was true, was in fact not true - at least in the eyes of most others? What happens when I know my thoughts are confusing rather than clarifying to me?
I am trying to explain why I am sometimes mad at you, for no reason apparent to
either of us. Why I shout at you when you are trying to do something of value for
me or to me? I’m not mad at you. I am not mad at you. I’m not mad at anything or anyone. I am fearful of my own self. I am anxious about it. I’m fearful of not knowing who I am. What’s going around me.
My sense of a lack of control, lack of knowledge of myself and my world. I’m scared, I’m afraid, I’m fearful of my own shadow because I don’t know who that is who sometimes follows me around morphing from a giant to dwarf as I change directions of walking.
So how can you empathize with my situation? You who are still scared of snakes,
losing your job, if your hair is falling out, if you have bad breath? I don’t mean to
diminish the importance of your fears; I just want you to ponder the ultimate
fear, fear of watching yourself as you know yourself and as others know you die, morph into someone no one knows and perhaps no one including you may particularly like or love.
I just want you to ponder how it feels to be out of control of your thought processes (and sometimes be aware of it and sometimes not be aware of it, and never know what state you are in), to not trust what you see, hear, smell, reason to be what others see, hear, smell reason. This is my world. This is what is going on between my ears - some of the time.
Richard |
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Links
The Alzheimer’s Disease Cooperative Study (ADCS), in collaboration with the National Institute on Aging and the Alzheimer’s Association, is developing a nationwide information network of people who are afflicted with Alzheimer’s disease (AD), have undiagnosed memory disorders, or are interested in learning more about AD and dementia.
The purpose of the information network is to educate the public about AD research and upcoming clinical research studies. If you would like to be part of this information network and receive regular e-mail alerts announcing new clinical studies as well as updates on research and treatment, please sign up!Click here!
Each day Ageless Design Research Foundation reviews the news wires, looking for press releases and current articles relating to dementia. They write a brief description of each article along with a link to the originally written story before including it in the Alzheimer’s Daily News. A subscription is a necessity if you want to stay current on dementia news, and it’s free, and the editors are real good people.
The Family Care Alliance, they call themselves the FCA, is a public voice for caregivers. They are one of the pioneering programs that seek to provide information, education, advocacy, and support for individuals caring for loved ones with chronic, disabling health conditions. See if they can provide information you are seeking.
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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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