Author Archive
Hello, I’m home again!
Posted by at 2nd November, 2011
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
Time on your Hand?
Posted by at 21st October, 2011
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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 |
Ideas from between the ears of Richard Taylor
Posted by at 20th October, 2011
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
Welcome to the new Editor!
Posted by at 19th October, 2011
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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.
Sign the Petition!
Posted by at 19th October, 2011
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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 |
So, how are you doing, Richard?
Posted by at 17th October, 2011
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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 |
and more confusing to me. I don’t like it. I am more and more afraid of what tomorrow holds for me. In my darkest moments I find myself wishing I would quickly drop into the dulled/dulling world I sense many folks in the deepest stage/symptoms of dementia embracing.
Hello from Madrid, Spain
Posted by at 17th October, 2011
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I am Richard Taylor, still living with the symptoms and diagnosis of dementia, and this time I am writing from a worldwide conference on Non-Pharmacological Interventions and/or Treatments to support people such as myself living with the symptoms of this or that form of dementia. The food here is as good as the people are friendly! The conference was organized through the sponsorship of the Queen of Spain!
The prospects of socialceuticals becoming more used, more useful than pharmaceuticals, seem good, at least among the experts attending this conference.
While response to my initial Journal of the Voices of Dementia was overwhelmingly positive, response from individuals living with the symptoms and diagnosis has been modest to say the least. I simply do not have enough “copy” now to put out this month’s journal. I do not want the journal to be an extension of my words and thoughts; I want it to reflect perspectives in addition to, and other than mine. Thus I will continue to send out monthly issues of this newsletter until I
find (or they find me) more writers for the Journal. While I know my own writings, speeches, DVDs have inspired/impacted many many folks all around the world I have not served as a convincing enough role model for others living with dementia to stand up and speak out on the platforms I have used and/or built. One Richard Taylor is enough for me, and I suspect many other people too! I am now satisfied with affecting folks one at a time. I have given up trying to change institutions, organizations and governments. Unfortunately, I cannot point to thousands of other folks living with dementia who have been successful in those larger arenas. I do not mean to imply others are not standing up and speaking out, what I am saying is, apparently for
whatever reason few are willing to write/publish in this Journal. I realize this is not necessarily the best and certainly not the only way to stand up and speak out. But for now, it is one of the few channels of communication which is self limiting in that it only prints articles authored by folks from around the world who are actually living with the symptoms of dementia, and through which they can share their life experiences living with dementia with each other, and with carers and professionals around the world. Won’t you please consider sharing your day to day experiences with dementia with kindred spirits and those who want and need to know what it is like to live with this or that form of dementia? If so, write me -richardtaylorphd@gmail.com and we can figure out how to get you and your writings into this Journal. Thanks Richard |
Webinar Series from Oklahoma Geriatric Education Center
Posted by at 12th August, 2011
Report from the National Institute of Health on the Status/Health of Alzheimer’s Research
Posted by at 12th August, 2011
I Can! I Will!
Posted by at 10th August, 2011
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September is World Dementia Awareness Month, Here are some real contributions we have already received, plus instructions on how you too can join us. Thanks for your support this project. Please pass the word about this project to other like-minded folks. Email your contributions to: standupspeakout2011@gmail.com.
We will gladly help you with the form if you will just send us your ideas, plus if you want a picture of yourself. Pictures make our words/ideas seem more personal! Thanks for joining other kindred spirits in creating this “best practices/trial and error” clearing house. Richard On the I CAN! I WILL! website we will publish cyber books. Each book will be filled with your suggestions for activities to raise awareness about dementia and to fight against the stigma. There will be one book with ideas that people living with the symptoms of dementia might consider implementing, plus books for their family carers and friends, medical professionals, professional carers, Alzheimer’s Associations and others. This site will develop into a resource for individuals, groups, organizations and countries to consult when they are looking for ideas of how to stand up and speak out. Suggested Format for Postings Here is the suggested format for the idea posting. If you feel comfortable doing so, please provide a photo of yourself. To give you some guidance regarding activity ideas and format, sample postings are included after this section. 1. Subject line/title: One short sentence describing your idea. 2. Introduce yourself (whatever information you are comfortable making public). For example: · Your name (at least your first name), where you live (town, state/province, country). · If you have dementia, what form of dementia (Alzheimer’s, Lewy Bodies, etc.), how long since your diagnosis. · If you are a care partner, for whom, how long, what form of dementia. · If you are a professional in the field of dementia, what do you do and where? 1. Summarize your idea or just tell us your story. You can outline your idea and the reasons behind it; perhaps you are basing your awareness-raising activity on your own personal experience. If you think that talking about your personal experience will help someone else to understand and implement your idea, then please provide as much information as you feel comfortable. 2. Who should think about implementing this idea? For example, is your idea targeted to a person with dementia, a doctor, an activity director? This doesn’t mean your idea is restricted to only being done by that type of person; this information just helps us categorize your idea and make it easier to find on the website. 3. Contact Information: Web page, book, and/or email address of the idea author A Sampling of Ideas Submitted Thus Far Here are some ideas from folks from around the world, both with and without dementia. These are real ideas, contributed by real people, and these will be live on the website when it is launched. These ideas are meant to inspire you to contribute your own ideas. Send your ideas to standupspeakout2011@gmail.com. * Hallo: I try when I can to speak up. Two months ago, I organized a meeting in our library about Alzheimer’s and other dementias. I ask my doctor-psychiatrist to talk about this disease and I was there like her patient. People could ask me and her questions about this disease. The director of library told me later that it was very successful. I am grateful that I am still able to do this. This is because I have some special form of Alzheimer’s disease, not typical as I am “young.” Secondly, I know about my problems and I can speak about it. For me being able to speak about my disease and my problems was not good at the start of my problems because the doctors thought that I did not speak true and that I fabricated the problems with my memory and reasoning and thinking. It took 9 months to find out that I have really Alzheimer’s disease! I was at many doctors and I was in hospital for observation — in Psychiatry hospital — for 3 weeks. I would also like to share with other people fighting with Mr. Alzheimer about some things that help me. Every evening I prepare my schedule for the next day. I write on paper all the activities and then I enter a reminder in my phone to inform me of a meeting or appointment. Usually I have two times reminders, just to be sure My second idea is that for every “difficult” thing like washing clothes I prepare a scheme or checklist: For example: - choose the clothes Then I do all these points and check them off as I do them. With best regards Nina Baláčková E-mail:
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Living with my late husband Alex in Florida for ten years, we have together and at home experienced his journey with Mr. Alzheimer increasingly intruding into our partnership and marriage. One problem Alex did NOT have was the kind doctors prescribe a blue pill for. He was still, in his seventies, a healthy man, full of energy, and he loved to make love. And I, nineteen years younger than him, loved to make love, too. Mr. Alzheimer didn’t change that. What changed — as one of the first symptoms showing up — was Alex becoming more and more careless about the condition of his bathroom and especially the cleanliness of his body. This turned me off. Asking Alex to read a “How to…” book didn’t help; to argue didn’t help either. Finally we found a nice solution: I moved out of our master bedroom and king size bed to a Alex did not only take a shower. He put on some fragrance and a beautiful silk Kimono, he looked great and the expression of excitement in his eyes surely turned me on, too! Best wishes to you and your family, * Hello: In the initial results of this research, I have been able to demonstrate that conversation is an activity that is influenced by the healthy conversational care partners who actively participate and help the person with dementia to compensate for their limitations. The care partners thus support the person with dementia to remain active and present in the conversation, despite the negative characteristics that many researchers have described such as: anomia, paraphasias, circumlocutions and repetitions. Thus, when evaluating how the person with dementia participates in conversation, it is necessary to also evaluate “how” and “how much” people talk around the patient.
The knowledge gained in this research has helped me to develop workshops to provide guidance tocaregivers on how to stimulate conversation with their loved ones with dementia; this type of experience has also allowed me to learn much more about this topic so I am currently drafting a guide for stimulatingcommunication between people with dementia, aimed to the caregivers and the patients families. E-mail:brvallesg@gmail.com *
Years after his death, I wish we had moved more slowly. We might have avoided stressful tests and the medicines that seemed to make him worse. I might have spent more time just being with Dad, and less time trying to “fix” him.
If you’re a caregiver or family member, I would encourage you to recognize that the science behind dementia diagnosis and treatment is still evolving, and that each person’s dementia may be different. I think it’s best to be skeptical when you hear generalizations about symptoms, diagnosis, treatment and care. Be cautious when experts talk about what “they” [people with dementia] need — consider the individual instead.
This does not mean you should ignore the needs, safety or comfort of the person with dementia. Some issues must be addressed immediately. But when you can, take the time to educate yourself about the state of the science, and try to separate hype from reality. Don’t be influenced by advertisements or headlines about the latest study. Think carefully about the risks and benefits of each treatment. Above all, spend some time listening to the person with dementia. If communication is difficult, try to think about what he might want based on his life history and current situation. Take into account his age, overall health and specific preferences. Relate to him as a person, not as a patient.
Sometimes “slow care” is best.
Best wishes on your journey, Mona Email: mona@tangledneuron.com |
My name is Nina Baláčková and I live in Prague, Czech Republic. I am 52 years old. I have a very good husband and two adult children. I have Alzheimer’s disease from 2007.
Hello, I am Tina Hackel, and I live now in my home country Switzerland.
My name is Beatriz Valles. I live in Venezuela and work as a volunteer at the Alzheimer’s Foundation of Venezuela, Chapter Nueva Esparta. I am a Language Therapist and for five years I have been investigating the characteristics of conversation between people with dementia and their primary caregivers.
Hello, I’m Mona Johnson and I live in the state of Wisconsin, in the United States of America. My father developed dementia when he was in his 60s. After reading about scientific breakthroughs and improved diagnosis, I encouraged Dad to seek testing right away, and to get the best treatment possible.
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