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I’m home again! I am Richard and I live with and have been diagnosed with the symptoms of Dementia, for sure, probably of the Alzheimer’s
type. Spending a week in Spain at a conference sponsored by the Queen - and then a week on the French Riviera, and then a week in Iowa at the School of Nursing at the University of Iowa has depleted my energy reserves, my cognitive reserves, and my weight reserves (lost 10 pounds!).
However, recall of the specifics of the business and play are as usual difficult to retrieve, and when I do, I have little confidence they are what really happened. Linda and I spent a week living with Cathy and John with their view of the port of Nice, France from their bedroom floor to ceiling windows.
I wish I could say all this travel has refilled my energy tank, but it has not. It was wonderful being around friends, rubbing shoulders with the movers and shakers of the Alzheimer’s world.
Many walk their talk, while others walk/act in a twisted way at best and an opposite way at worst away from their talk.
No one, nowhere seems anywhere near to being fully prepared for the public health crisis. Some are closer, while many are not. There are many dementia angels speaking up and out, but they have yet to be drawn into a choir that sings loud enough for everyone to hear. The movement, if indeed that is what it should become, lacks leadership, funding, sufficient staff, a shared and burning sense of connectedness, an umbrella organization, and the urgency at least as I feel it, to stand up and speak out. As for myself I am trying to feel comfortable speaking/expecting one person at a time to consider my experiences, my messages, and then decide for themselves if what they think and feel about themselves and others dealing with dementia are correct, incorrect, confused, don’t care, don’t know, know/but don’t care. and/or don’t want to know. Must you be living with the symptoms of dementia to feel the necessity for large-scale change NOW?
I lack the ability to understand why this is all happening in the face of the urgency for myself, millions of others, and millions and millions of others who are or will live with the disability of dementia within the next ten or twenty years. Why do so relatively many spend so relatively much on cure research, sacrificing psychosocial research to pharmacological research? Why do so many seem so hopeful for tomorrow, when there is so much more they could do today?
I do not know. If you do, please drop me a line and maybe we can change the world, or at least greatly improve the quality of the lives of souls living with dementia, all of whom are also living with the stigmas of the long good bye, dying twice, losing our souls, becoming sufferers.
Richard
The single biggest problem with communication is the illusion that it has taken place. … G.B. Shaw
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Write something down on a slip, and start a story with friends and family
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At long last, my good friend, Anne Basting’s web site featuring an interactive and free timeslips opportunity is ready to go. It is worth your time to check this out. Official launch will be Sept. 24th. I’m hoping on the 24th, we can get some folks to use the site, tell some stories and help spread the word about this tool to bring creative engagement to people wherever they live, whatever their cognitive ability: -people living isolated at home–families living far apart–people living/working in group facilities |
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The new storytelling software is playful and easy to use. Essentially this is a way for all of us to make up and extended story with our family and friends, each adding a section to the imaginary story. It is fun, simulating, ego boosting, and interesting. All this and did i mention FREE: Anne Bastings is one of the most productive, creative minds, and she gets ít when it comes to appreciating, challenging, stretching, and bring joy and self confidence into the minds of folks living with the symptoms of dementia.
2) Send a personal email to friends you think might love this site. I can’t thank you enough. I feel like we have an amazing tool to give people - to let the joy of imagination brighten their lives. Anne Yes you do Anne, yes you do. Thank you. I hope tousands will check this site out themselves.
Richard Taylor |
Recently Alzheimer´s England and Alzheimer´s Disease International asked a few people living with dementia for a few big ideas on how they could make their annual conference more meaningful for everyone, especially for people living with dementia. Here is what I suggested:

1. commit to involving people with dementia into all levels of conference planning and execution. I have worked with a major conference here in the usa (Edna Gates in Detroit, and it took them three conferences to get u[p to speed, not because the people with dementia has to be conviced, but those running the conference just didn’t trust them with authority and responsibility. We should practice what we preach.
2. provide a full day of programs for people with dementia -advocacy training, nonpharmacological treatments/workshops, network building, lots of opportunities for them to tell their stories, even to the researchers. Call them alzheimer’s moments.
3. Pushing hard for every country to bring at least one person with dementia with them to the conference. Sell it to Daisy, then the Board, then selected member associations, then to all.
4. turn this more into a working conference than a come and listen conference. Provide structured workshop small groups experiences. Ask all to produce a plan as to what they will different upon their return home. Publish these action plans. Every session should challenge the listeners to at least attempt to translate what they have heard into what they will do. Provide lots of facilitators to make this happen. Offer many more sessions so there are many more choices. It’s time to let the conference dictate the number of meeting rooms needed, and the hotels comply, rather than as in the past it’s the other way around., The world if full of bright, creative leaders. Encouage them to come and stand up and speak out.
5.Committ to seeking out individuals living with other forms of dementia and work them into all these big ideas. Act like the world’s Dementia Association, not another big Alzheimer’s Association
6. A half-day training session on advocacy for people with dementia.
7. An entire day to listening to people with dementia speak to various subjects.
8. A true dementia day…close down the researchers and ask them to join the rest of us.
Richard
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Welcome to the new editor, organizer, sender outer of my newsletter. At long last someone has voluntered to assume some of the tasks I find increasingly difficult to accomplish on my own.
Bettina Hackel lives in a 200 year famhouse, I have been there, in the foothills of the Swiss Alps. She was a loving and enabling careparter with and for her husband Alex, who lived with the symptoms of dementia, probably of the Alzheimer´s type prior to his passing several years ago. She has dedicated a good portion of her life since then working with her International on-line care group, and recently she offered to help me with my newsletter. She also translates it into German for me, and distributes it around the world.
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Hello A group of our citizens, myself included, has created a petition to send to our President, asking among other things that at least one person who believes in, practices, wants more psychosocial interventions and fewer pharmacological interventions used to “improve” the quality of the lives of those living with dementia be nominated for this special board charged with propelling us into the 21st century with our dementia care policies and practices. You can read the entire petition on my web site blog,www.richardtaylorphd.com and/or you can read it and sign it at change.org. You can read about in a Huffington Post blog by John Zeisel (the Father of the petition) at www.huffingtonpost.com/johnzeisel-phd/dementia-obama. As petitions go, this is a good one and worth your time reading and signing. If I had more space I would paste it here. I’m working on my cloud so I can post larger files that readers can link to from my newsletter. I apologize for the length of this issue. Richard |
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Hello, So, how am I “doing” today? Ask soon, because tomorrow I will have forgotten. I was watching PBS news earlier tonight, and they referred to a story on last night’s news. I discovered I could not remember just what was on last night’s news. It is not that I forget everything. It is the details that are slipping away. Sometimes a chunk of yesterday is missing. When you don’t have a job to go to day to day it is amazing how easy it is to forget what happened yesterday. I just have no need to remember it. Oh, most of the big things, yes. What I remember to write down on my To do list for tomorrrow at the end of my todays, yes. But, honestly many times I don’t look at my nightly To do lists until some time next week when I am being urged to clean the piles of paper on my desk. Frequently the order of things, the details of who said what/when are at best confused and confusing and at worst just not available to my hippocampus to retrieve and attempt to understand. I am still pretty good with the big stuff, but remembering to close or if I closed the refrigerator door is most times impossible for me to recall, and frequently I do not do it. I am constantly distracting myself, even the most basic of habits. Flushing the toilet, knowing why I came into this room, recalling what I was just doing - these details of life/functions of memory are slipping away from me more and more. It is the beginning of losing myself. Yes, I know I tell others to treat me as if I have a chronic disability, not fading away as a human being. I know I tell others to ask me if I want help. I know I tell others to help me stay in today. Unfortunately, these well-intended souls who follow my advice are not enough for me to overcome my own fears over losing control of my mind, myself. They are trying different and harder, and it’s getting harder and harder for me to appreciate their efforts. I know they are doing the right thing, but I will not accept it. I resist. I feel misunderstood. Now how the hell can I sit and write this, and it has no impact on my feelings? Is it me? The disease? Us? I can still speak, well. I can speak at length about issues that are important to me. I can run through lots of interesting stories and life experiences, although the details sometimes change. Since most folks are hearing me for the first time, they do not know what to expect. Those who have heard me before are kind enough not to point out how much I now seem to rhetorically wander abround an idea, how I repeat myself, how I am not as sure of myself as I was in the past. I know it’s happened/happening and yet I cannot seem to do a damned thing about it. Lists, reminders, cues are ignored and/or are no longer of practical use to me. In my best of moments, I can still step outside myself and see what is happening with/to me, but even these insights do not seem to change who I am or how I behave, and increasingly to me how I feel. What has happened between my ears seems to be both a function of my lessened ability to stay focused, and of my lessened ability to accurately recall the details of my life. It turns out because I do not remember accurately, recalling and figuring things out has become problematic for me. I have some ideas of what to do, how to fix this, but they have a shorter and shorter half-life in their effectiveness. In addition, knowing what to do, what is happening is growing more I am running out of work arounds, cover-ups for my slipping cognitive functions. Many times, I am not even aware it is happening, it takes others to point it out after the fact. And to make matters worse I am becoming more and more defensive when it comes to honest attempts by others to help me understand this or that. It is a terrible situation for me, and an awful situation for those trying to support and enable me. “I think, therefore I am.” Yes, I believe that. Nevertheless, just exactly who I am is increasingly unclear and unavailable to me - and that triggers lots of fears within me.. Richard |