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Hello,

Janet Adkins (the first person Dr. Jack Kevorkian (”assisted”) really believed that everyone was going to die who had Alzheimer’s disease. And not just die, like everyone dies. It would be painful,  dehumanizing, something no one should have to live through. It was a death, she believed that should be avoided, if it could be avoided.

She knew it was a fatal disease. So why, she reasoned in her last letter, bother to suffer the prelude when the movements were so awful to live through, and it always ended with pain, suffering, loss of every ounce/inch of humanity and a whimper?

But then again, everyone is going to die who does not have Alzheimer’s disease. Life is a fatal disease/chronic disability/condition!

Is there unbearable pain attached/guaranteed by the diagnosis? Not that anyone has reported, except for others who do not have it and are in psychic pain watching themselves say good-bye to some who is in their minds slipping away. Except for others whose focus groups have told them if you want to raise money for cure research scare the hell into the donors, not out of them, and then all but promise a pill to assure them they won’t go to or through hell - at least not because of their Alzheimer’s disease, because their support and donation now will create a world without Alzheimer’s disease - soon! “We are so close to pharmacologically bringing a part of heaven onto this earth.” they have been telling us for the past twenty years.

There is pain in the hearts and minds of people living with Alzheimer’s disease, but it comes first from without, not from within. There is fear within that comes first from without. There is pain in the hearts and minds of care partners. There is despair about the future. And whence cometh all this pain and suffering? From the disease? Hell NO!

It all starts, not from birth, not from genes, not from between our own ears. It comes first from listening to and watching TV commercials, press releases, relatives, fund raising campaigns, second and third hand reports about what others think/know what is for sure like to live with Alzheimer’s disease.

One organization preaches that folks lose their souls when they are in the later stages of this form of dementia. Have these prophets returned from heaven/hell with a firsthand report? How do we know the condition of anyone’s soul? Apparently, some of those who clearly should know better and are interested in raising funds for research for a cure know for sure. At least sure enough to make a video and show it to lots of folks claiming second hand knowledge of this loss of soul.

A doctor friend of mine just wrote “it’s time to take off the gloves” referring to his own self imposed restraint when responding to a defense of mind/mood altering/smothering drugs given to so many folks living with the symptoms of dementia.

I believe it is time to take off the gloves when addressing the Alzheimer’s myth builders certain claims of a living hell inevitably engulfing those living with the syndrome of Alzheimer’s disease.

We have all been slapped around to long by the myths and stigmas continually promoted by those who should know better, whose personal interests are well served by the consequences of myth making. And they are hitting harder, more often, and damn it with more success. It’s time to tell the other Janet’s, living with the diagnosis, that life, - purposefulness, love, and all the other deeply felt and yearned for human needs are just as alive in the last stages of life/Alzheimer’s/dementia as they were the moment before they heard the words “you have dementia, probably of the Alzheimer’s type” intoned by someone in a white coat who increasingly doesn’t believe what s/he just told you. At least they don’t believe all the myths, stigmas, advice, and pills that come with those words.

I cannot read the minds, hearts, souls of the folks who perpetuate the myths that first caused Janet to consider suicide as a rational answer to the guaranteed pain and suffering that was guaranteed to be her life living with Alzheimer’s disease.

I just don’t understand these fear mongers. Is any cause worth the suffering they are causing/promoting/tearfully announcing? Even if we all believed Alzheimer’s is a disability that can be cured/appreciably slowed down, is it right to knowingly create pain and suffering in some, so some others will not have to experience it?

Damn it. Let’s all stand up and speak out. Let’s name their names, let’s stop donating, let’s stop swallowing whatever they say is best for “us”, let’s replace them. Let’s show the other Janet’s in the world there is a rational, meaningful alternative to ending your life when you receive a diagnosis of probably Alzheimer’s.

It is living your life. Surrounding yourself with an informed, enabling network of care partners. It is believing in yourself. It is ignoring the sentence and conditions others (who for their own reasons) have assigned/defined to you - “a death sentence.” A soul-less, suffering filled existence leading up to not one but two deaths!

Say hello to the “Janets” in your life. Say hello to yourself. Stand up to the blizzard of claimed  breakthroughs, press releases, promises of a better life through chemistry. Speak out! If we all don’t - look who is speaking for us? Look what they are saying? Look at the consequences of their labels, myths, stigmas on people living with the symptoms of dementia and their care partners.

Stand Up! Speak Out! Take off your gloves and let the naked truth speak for itself.

Richard

Status report on Alzheimer’s Disease International “Stand Up/Speak Out” project for World Dementia Awareness Month – September, 2011

Please join us in creating the first world-wide/web-based library of ideas for anyone and everyone to stand up and speak out, during the month of September on their experiences with dementia.

Several weeks ago some of you received an e-mail introducing you to Stand Up, Speak Out, an International movement to share and implement ideas for activities to stand up and speak out about dementia during September, World Dementia Awareness Month. Yes, we are still out of site/sight, but we hope we are not out of your mind. As with many things on “the Web,” the time gap between concept and “click here” is a tad longer than we had at first anticipated. But, our will remains strong!

We are in the midst of conversations with ADI and their web designers as to how best to build a cyber “library of ideas.” Our plan is to set up something that looks like and can be used by others as a library of ideas/suggestions about how others have stood up and spoken about their experiences with dementia, especially those living with the symptoms of dementia.

There will be books in the library and each book will be full of ideas for some target group to consider using during World Dementia Awareness Month. Right now we are going to start out with three volumes of ideas, one for people living with the symptoms of dementia, one for their care partners, and one for professionals. As ideas flow in from around the world we will created more books of what/how individuals of a defined group do to stand up and speak out about dementia, based upon their personal experiences.

We will provide key words (sort of an index of ideas) at the front of each book. If, for example, I wanted to speak with my family about my symptoms I would search under my form of dementia and the words “conversation” and “family” to find suggestions.

Initially Laura and Richard have volunteered to rewrite the suggestions so there is some continuity of form. We are looking for others to volunteer to be page editors. We will embed simple translation software for non-English speakers to use. We hope that Alzheimer’s associations/societies in individual countries will find this such a useful tool they will translate the pages/books and post them either directly on their own sites or link them to the ADI site and promote it with the people they serve in their respective countries.

Here is what we are asking of you right now-

ONE: ACTIVITY IDEAS: We are looking for pages/ideas to start to fill the books before they are actually put up on the website for all to read, so as to inspire other people to submit their own ideas. As we said in the initial letter earlier in the spring, we ask you to:

“…suggest ways to flood the world one specific idea at a time with awareness of what it is like to live with dementia, to specifically address the myths and stigmas that almost always accompany the diagnosis and/or revelation of the symptoms of dementia, to encourage, enable and support people living with dementia to be more open with others about their disability, and so on.”

Perhaps you, yourself, already have some ideas for activities. Perhaps you can ask others that you know—friends, family, community members, health professionals, people you work with—for their input.

Please send your ideas by June 15 to Laura Bramly and Richard Taylor at standupspeakout2011@gmail.com. Your idea will then be posted on the website in time for the launch date. (Note the actual website will have a form for submitting ideas and you won’t need to send them to us via e-mail).

Here is the suggested format for the idea posting. To give you some guidance regarding activity ideas and format, sample postings are included at the end of this e-mail.

Our hope is to have a photo of each author, a brief couple of hundred words description of the idea, and a web page, book, and/or email address for readers to contact the author if they want more information. Ideas can be written in an informal tone and should have the following components.

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 Body, 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?

3. Summarize your idea.

You can outline your idea and the reasons behind it; perhaps you are basing your 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.

4. 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.

5. Contact Information: Web page, book, and/or email address of the idea author

TWO: SEND PHOTOS!

Please send two or more photos that you think represent the faces of dementia in your country, so that we can put a face to dementia and also make the website more visually interesting. The photos don’t have to be close-ups; it would be great to get photos of people engaging with other people. Perhaps you have some photos from a Memory Café, a meeting, a walk, a trip. Make sure that you have permission from the subject(s) of the photograph to use their image. Ask them to send you an email or letter confirming their permission to post their picture on the web.

THREE: TRANSLATIONS!

Finally, if you can, please send a translation into your language of the following words:

· STAND UP

· SPEAK OUT

· I CAN

· I WILL.

We are as frustrated and sorry as you that this process is turning out to be slower than most of us wanted/hoped/planned for it to be. Know that we both remain confident that our/your Toronto ideas will happen; it will grow, will be useful, and will be used. Please send us your ideas, photos and translations as soon as you find a moment. We will keep you posted on the progress of the actual cyber library web site.

Our current goal is to have lots of content ready to post on the first day the site becomes a reality.

Thank you for your continuing support,

Laura Bramly

Mindset Memory Centre

www.mindsetmemory.com

Richard Taylor

Alzheimer’s from the Inside Out

Dementia Support Networks, USA

www.richardtaylorphd.com

Idea: Stand Up and find others speak with who share your disability/diagnosis/fears

Hello, I am Richard Taylor, and I live in the U.S. of A. I have been living with the symptoms of dementia for about ten years.

The diagnosis and the words “you have dementia” had a major impact on my family, friends and I. I found I need “socialceuticals,” not pharmaceuticals. I need social medicine, folks who were in the same boat as I, couples who were struggling with fears of the future, stigmas, and myths promoted by some who should know better. My solution was to find others who shared these fears and invite them over to my house for dinner. I found comfort, information, support in being with and getting to know others who were kindred spirits. I called these activities hello dinners.

I have made a DVD that describes this idea. If you are interested in trying this idea out, especially during the month of September, World Dementia Awareness month, please go to http://youtu.be/R3DLJ5mxANQ and check it out for yourself.

E-mail: richardtaylorphd@gmail.com

Website: www.richardtaylorphd.com

Idea: Stand Up and speak out with your own family

Hello, I am Richard Taylor, and I live in the U.S. of A.

After I was diagnosed and recovered from the initial shock/myths/stigmas/fears, I asked my family to meet with me and discuss how best we could all support each other now that this new dynamic had been introduced to our family. Their response was “there is nothing wrong with you now Dad that we need to worry about, let’s cross those bridges when we come to them.”

Well, hindsight has showed me this was a mistake. Planning ahead for the inevitable bridges of giving up driving, control of my own/family finances, changing personality issues could have been better dealt with early rather than later.

Here are some ideas about how to talk with your family about this:

Get them all together and lay it out on the table. Tell them what you know and don’t know about your form of dementia. Encourage them to research it for themselves. Agree to meet in a month and see where you all are, how you each feel, what your expectations of the future are for you and for me.

Or

Identify those family members who are most likely to support you now in a positive sense (enabling you rather than disabling you). Speak with them before you speak with other family members. Ask them to speak with family members who might not be as supportive in the ways you wish them to be. Then have a family meeting.

Or

Write the family a letter. Tell them your fears for yourself, them, the family. Ask them for their support to avoid some of your fears from occurring. Ask them to learn about your form of dementia. Caution them to beware of myths and stigmas that are not true, but are frequently mentioned as if they were true. Ask each member to call you and speak with you personally. Maybe you do not need a family meeting, you just need to begin to build a family consensus as to how you can best we supported with your developing disability.

Or

Take this opportunity to expand your family and include friends in your meetings, discussions, and letters. The village you create to support you now, will be the same people who are supporting you when you cannot organize things for yourself. Begin now to create an informed social network.

E-mail: richardtaylorphd@gmail.com

Website: www.richardtaylorphd.com

Idea: Sit down and listen to someone you love who is deep into the symptoms of dementia

Hello, I am George Blanda, and I live in the United States of America. My mom has been living with the symptoms of dementia for about eight years now, and her symptoms seemed to have robbed her not only of her identity, but also her personhood. I have been thinking about what I could do to help my Mom find herself, and speak up.

I decided to stop trying to find my “old” Mom, and just listen to who Mom is right now. I stopped asking her questions and started just being next to her. Holding her hand if she seemed to want to. Telling her from time to time who I was, and how much I loved her.

Once in a while, I would ask her if there was something I could do for her right now. First she wanted some water. A day later, she asked me to take her to her room and help her into bed. Once she asked me where she was and I told her. One she looked into my eyes, and told me she loved her little boy. No real breakthroughs as I had hoped, but I am closer to Mom and understanding and accepting who she is right now, today. I’m gonna do a lot more of this with her, and I’m gonna suggest to other caregivers I come to know to do the same.

E-mail:

Website:

Idea: Invite one or two of your “old” friends over for lunch

Hello, I am Myrna Pearlman, and I live in the United States of America. This is a picture of me with my granddaughter.

I’m living in what others tell me is stage two of the symptoms of dementia. I can’t take care of myself all the time, but still want to.

When I was first diagnosed, my friends shied away from me. Over time, I lost contact with them. Over more time, I lost them completely.

Recently I decided to call two of them up and just flat out invite them to come over and have lunch with my daughter and me. She helped me prepare the lunch then then she went home because I wanted these three old friends to spend time together. They were uncomfortable when they arrived, and surprised that my daughter had to leave early, but after fifteen minutes, we were back in each other’s lives.

Then a couple of symptoms of dementia popped up and discussion came to a halt. I told them what I thought happened; they told me what they thought happened. We talked about how to work through it, and the lunch went on. When it was over, we decided to meet again in two weeks. You might try this for yourself in September. Best wishes.

E-mail:

Website:

A friend of mine, and a friend of everyone who lives with the symptoms of dementia, recently presented this at a conference in Belgium. Germany is in the midst of developing dementia-friendly communities. Recently South Korea began a program to educate every one of its citizens (young and old) about dementia. These are the kinds of creative thinking and creative engagements we all need to create and support in our own homes, our own town, and our own country.

Recently my President proclaimed/announced a major step forward in the war against Alzheimer’s disease. Ignoring the fact he still apparently doesn’t grasp the nature of Dementia and it’s many forms, he is forming a committee to write a plan to save our health care system from collapse from the costs associated with the aging of the baby boomer generation (now some are trying to rename it the Alzheimer’s Generation), that is the plan will be written as soon as they find a few dollars to fund the writing of it.

And hands in the audience, please. How many truly believe any plan we write will include, be sensitive to, focus upon the following:

Richard.

Dementia-friendly communities in the society/in Germany

Peter Wißmann

E-Mail: p.wissmann@demenz-support.de
Internet: www.demenz-support.de

Geschäftsführer: Peter Wißmann, Herbert Rösch
Amtsgericht Stuttgart HRB 23057
Sitz der Gesellschaft: Stuttgart
USt.-IdNr. DE 245726688

—————————————————————————

What is a dementia friendly community? What does it look like? If you know it, please tell me. I have no definite answer, but I think it’s a good question.

In year 2006 Aktion Demenz has called out to create dementia-friendly communities in Germany. The association Aktion Demenz has resulted from an initiative of the Robert Bosch Foundation. The intention is to look at dementia as an issue that needs to be addressed by the civil society. .

“Dementia is an issue for all members of the society”, that’s the motto. When Aktion Demenz started it had no answer but a question. The question was (and is): How do we transform our villages, cities and communities into better places to live in for people with dementia?

At that time we started we only knew a handful of communities where this question was already being actively addressed by citizens and politicians.

Today we have got a different situation. Under the roof of the concept “Dementia friendly community“hundreds projects have started their work.

This year Aktion Demenz was able for the second time to announce the support program “People with dementia living in the community“. It’s established and funded by the Robert Bosch Foundation. Local projects for a dementia friendly community can get a modest financial support here. About 250 communes and projects have applied and 37 have been awarded a grant. And there are still much more all over in Germany.

Who initiates?

From whom do such local projects start of? There are different approaches:

· The first impulse often comes from professional carers or professional networks.

· Sometimes there are committed citizens who want to do something.

· Sometimes it is the Lord Mayor or another politician recognizing the need to act.

· However, I also know cases in which it was a single person who has taken the first step for example a family member of a person affected by dementia.

Each of these approaches can be successful. But to be honest with you: Sustainable projects depend on a broad alliance of citizens, professionals, politicians and family members etc.

What are activities in the towns and villages?

1. Publicity and awareness raising

Most projects in Germany but also in Belgium or in Austria try to create public awareness in their community. The aims and the objectives of these campaigns are to establish dementia as a topic, but also to focus in people with dementia themselves.

It is crucial to reach those citizens who haven’t come in touch with dementia, yet.

Some Exemplary activities

· Posters and banners all over the city. Motto: In the past, you have helped me, now it’s my turn. We are neighbours.

· Specialized training for police, bank assistants, shop assistants and others. Topic: Understanding dementia.

· Cultural activities like art exhibitions.

· Or a big Dementia Awareness March through the city.

2. Inclusion and social participation

Informing the citizen isn’t enough. What we do need are places and occasions where people with and without dementia can socialise. It is all about social inclusion.

Exemplary activities

exhibitions of art work from people with dementia in public places

• sport activities for and by people with and without dementia
• Public music performances for people with and without dementia
• Some projects address pubs and restaurants in the local community. The objective is to raise awareness about people who seem to be different or to act strange. Are those people welcome in pubs and restaurants? And from our experience the answer is almost always: Yes!

Everybody can do something!

A little town in South Germany, Ettenheim, has come to the conclusion: neither an old nor a person with dementia ought to fall out of the community. The citizens of this village therefore have built up a network of mutual support, and with this aid people with dementia are able to stay in the middle of the community.

3. I speak for myself

All of this is good. Many towns and villages are on their way. But there is still a lot of work to do. My institution, the Demenz Support Stuttgart and other organisations like the Alzheimer’s Associations commit themselves to the aim that people with dementia are encouraged to speak for themselves. What is a dementia friendly community? In Germany we have only just started with this perspective. But I believe: It’s the next task for committed towns and villages to think about ways to involve people with dementia actively in their planning of dementia-friendly communities.

What’s essential?

What is essential if we talk about dementia friendly communities?

1. The dementia-friendly commune must be more than a project managed by professionals.

A few minutes before I said that we need a broad alliance from citizens, professionals, politicians and family members. And I would like to complete: And also from committed people with dementia. All they are indispensable.

2. Not the sick person but the citizen with dementia must be the focus of our perspective.

People with dementia are citizens like every other member of the society! We have to transfer the ideas of the UN-Convention on the Rights of Persons with Disabilities into our countries. We need a change of perspectives!

3. We do need information campaigns and public awareness. However, first of all we need actual inclusion on the spot! There we have to create good ideas!

4.Money is useful, but money is not everything! Many local projects in Germany have shown that you can have a remarkable impact without big sums, as long as other resources are available such as the creativity of the citizens! It is simple, it is creative and it works!

I just read a report on a study of the impact of tickling the whiskers of nude mice. You can find it on www.Alzforum.org. (A summary of it is in today’s Alzheimer’s Daily News) It is a site dedicated to reporting the results of Alzheimer’s cure researcher.  This was the response I posted.

Hello from a person who is trying to grasp exactly what the word Alzheimer’s means. You-all throw it around as a noun, a verb, an adjative, a cause or an effect, a cause and an effect, an early cause and later transforming into simply an effect - and now you write excitedly of stimulating mouse whiskers.

This basic brain research is cloaked, financed, press released as Alzheimer’s Disease cure research. It seeks to understand the most complicated, dynamic, organ known to exist by directing funding and attention to a issue/state/problem everyone sees as systemic, but everyone tries to understand it, to explain it, to cure it, through reductionists eyes, animal models, wishful thinking, the available funds.

Who is going to sort this mess all out? We keep spending more, trying harder, rushing up more and more blind alley’s (many of which seem to be a function of funding availabilty than consesus building and support), and now (again and again) we discover that the more we know the more we don’t know no. You acknowledge contradictions in theories and research, then ignore them and move ahead as if they didn’t exist. You specualte, write another grant application, put your heads next to mouse whiskers or in test tubes and move on - not forward, just on.

It’s obvious there is no existing organization, committee, government, person who will stand up and be a leader of this mess. So what are millions of people trying to live and understand this mess to do? Wait patiently? Buy a “computerized brain stimulating game?” Eat this or that? Walk for a cure? Urge law makers to continue to fund this tower of babel at a faster rate?

When I was first diagnosed the new head of the National Alzheimer’s Association counseled me to “be patient. We’ll get this all figured out” he assured me. Can anyone say we have figured “It” out? Are we closer - years closer to figuring “it” out, defining “it,” charting “it’s” progression in an predictable, science based manner? Did the NIH consensus committee miss something(s) really big in terms of consensus/progress?

Where are the leaders? The leaders of the leaders?

Waiting, now very impatiently by the phone, Richard Taylor, a person living with the symptoms of dementia for 10 years.

Stand up! Speak Up! Do not become a victim of your own silence.

Speak for yourself and those who will follow. Ask Carers and Friends to do the same. 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 pro

fessionals, with carers, with friends, with strangers, with your government.

They won’t change unless they know, and they can’t know unless and until you SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusade, Now!
Lead a Crusade, Now!

In the eyes of many others, sometimes even the eyes of caregivers, I am seen as less than a complete someone. Just because my memory is failing me, just because a region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes,  I am still a whole and complete someone. I am still me.  I am still Grandpa, and Dad, a friend, and whole and a complete Human Being.  I am in my mind still and have always been a complete person.  I am not becoming any less a person simply because I cannot remember like you, talk you do, or think like you do.   I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be.  I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , one day at a time.

Please help to enable me to be all that I can and should be.

Thank you!

Richard Taylor
richardtaylor.com
richardtaylorphd@gmail.com

“Aim above morality.
Be not simply good,
Be good for something.”
Henry David Thoreau

continue

Hello

The reductionist have captured or interest, our minds, our heats, and our wallets! They have convinced us that in order to cure the brain of the symptoms of dementia we need to reduce the causes of the symptoms to the smallest amount of human tissue/fluid we can change by swallowing pills and/or shooting various chemicals into our blood stream. How small must we go to change the symptoms? Right now, we are tracking individual cells and their components. Some study individual proteins. Others are going even smaller, looking at our genes and DNAAnd assuming we do find the real causes of each of the many, many symptoms of dementia, how are we going to undo/alter/prevent them? How, how much and how expensive will this process be for those of us experiencing this or that symptom? What side effects of these treatments can we reasonably expect to experience?

Hands in the audience if you truly see light at the end of this tunnel. Stand up if you think we have the turned for the home stretch. Speak up if you believe that just because we say something, it must, or at least will someday be true - someday!?

As for the rest of us - there is still today to enjoy. There is still a purposeful and purpose filled life to live. There is still love to give and receive. There are still songs to be sung, people to meet, need things to enjoy.

Richard

“Dance like no one is watching. Sing like no one is listening. Love like you’ve never been hurt and live like it’s heaven on Earth.” - Mark Twain

Action Alert!

What: call your senator today and ask him/her to support Alzheimer’s priorities in the final version of the Appropriations bill.

Switchboard: 1-800-687-3813

When: Today - Action expected at any time!

Congress will soon make final decisions on funding for Alzheimer research and public health programs.

Your Member of Congress is uniquely suited to help advance our cause.

Please call your Senator Today! They each have an 800 number!

Ask  them to require that 50% of Federal research funds on Alzheimer’s be spent on solving the psycho-social problems the disease creates in and between family members.

Ask  them to assure you this bill will not be just a care giver’s bill, but also contain provisions to directly support the personal needs of people living with dementia

Ask them to support research in ALL forms of dementia, not just Alzheimer’s Disease.

Ask them to support Alzheimer’s priorities as she/he considers the final version of the Fiscal Year 2010 Labor, Health and Human Services, and Education (Labor-H) Appropriations bill.

An estimated 5.2 million Americans suffer from Alzheimer’s disease, including as many as 500,000 who are under age 65. Baby boomers (you and your Senators are probably members of this group!) face a future with AD, bringing the total number of AD patients to 14 million by 2050.

Make sure they know why you personally care about Alzheimer’s issues. Tell them you consider it a moral imperative that they personally join your crusade to change the way our culture defines and treats people with dementia.

Your call can be a difference maker with your call.

Your Senators can be  difference makers with their votes.

We can, we must introduce change today to create better tomorrows!

Questions?

Contact advocate@alz.org

Richard

“I’ll never forget What’s his name?!”

I know some folks, myself included, have never been good at recalling names, but I just do not forget people’s names - I do not remember even remembering them. I do not have a clue. I cannot 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 cannot 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?

Building strong connections in China!

Early on, I set up 50 chat rooms across the world in the 50 poorest countries of the world. I realized everyone there didn’t have an iphone or a lap top, but those who did had no way of using their technology/dependable electricity to connect with kindred spirits, especially when two sprits both were living with the symptoms of dementia and/or were caregivers of such folks.

For over a year, I read the postings and interacted with folks from all over the globe. At first, I thought there would be a wide and deep cultural divide, and we would have different issues, different fears, and different relationship problems. Turned out, once again, I was wrong!

The impact of dementia on individuals, their care carers, their families, their communities is amazingly the same across most cultures I encountered. This is what the Chinese are saying on their new National Dementia web site:

“Being able to truly connect with the person who has dementia can make a great difference to your daily interactions. It can also help in your other relationships with family and friends too!

* Work to build trust and respect - These elements are essential for real connection

* Ask the right kind of questions - Generate meaningful dialogue with open-ended questions that demonstrate you are interested in what the other person has to say.

* Work to increase your awareness and to become an active listener - Give them 100% of your attention in that moment. Do your best to understand the other person’s perspective and thoughtfully consider the intended meaning of their words.

* Read the non-verbal communication - Words are only part of the message and what people don’t say will often tell you more than what they do. Listen with your eyes as well as your ears.

* Speak their language - While most of us understand English, we all speak our own ‘language.’ Know who you are talking with and learn their language.

* Acknowledge their feelings - You don’t need to agree with people to understand them, to respect their point of view or to create genuine connection.”

Good advice I would say for the residents of any country, anywhere on earth facing the issues created by failing cognitive skills. China’s first hotline to counsel elderly just opened in Beijing

www.chinaview.cn

Richard

And, what is it I actually have and what don’t I have?

“Well what if I have Alzheimer’s form and some other forms too? How will any more specificity than what you gave me in your diagnosis help me decide which medications to take, what symptoms I can expect, how I should form, manage and evaluate a treatment plan for myself and my family?” I ask.

“Here is a pamphlet from the Local/National Alzheimer’s Association. Go ask them these questions. I write the same prescription for many of the forms of dementia. I’ll treat your side effects of dementia, no matter what form, the same general way, with the same families of drugs.” s/he answers.

“Well can I, do I ‘probably’ have other forms of dementia too, in additional to the Alzheimer’s form?” I next ask the medical authority I have chosen to help me live with what seems to be a chronic condition (that is another can of worms I won’t open here). “We will just have to wait and see, sometimes as the symptoms progress or new ones express themselves I have to change the diagnosis to some other form of dementia, or recently I have changed the diagnosis to ‘mixed dementias.’”

“Wow, I sure start lots of sentences with ‘well.’ I silently observe to myself.”

“Oh!?” I respond as I walk out of the doctor’s well-appointed office knowing:
A. more than I need to know
B. less than I need to know
C. more confused about what is really wrong
with me than when I first walked in
d. All of the Above.

My answer was d.

“And I paid 20% of a usual and customary charge/a co-pay to know this/what?”

Confusing, is it not. Does it have to be? Why?

This is how Wikipedia defines Alzheimer’s disease - A Mental disorder from brain tissue changes.

Is this what neurologists really mean when they say to someone (such as myself) “You have Dementia, probably of the Alzheimer’s Type?”

Now I ask, “What tissues and what changes produce a mental disorder that has been labeled Alzheimer’s disease?” And so on goes a continuing conversation with others and myself. I am increasingly unsure why I carry on these imaginary conversations in my head. Is it me or the disease talking?