Feel safe

Experience pleasure

Experience a sense of control over their environments, people around them, themselves, their today, and their tomorrows.

Experience a sense of self-respect, self-value, self-esteem

Experience a sense of control of their privacy

Experience a sense of their own abilities to solve problems

Experience a sense of self-consciousness (being “non positional”) people come to know themselves as compared to others

Experience a feeling of right and wrong, entitlement vs. earned, a right vs. duty, obligation.

Experience a sense of themselves – beliefs, attitudes, dreams, values, self, individuality

Maintain a sense of time, of tomorrow, of yesterday, of today

Experience a sense of control and participation in positive interactions

Experience love giving it and receiving it

Experience stimulation in each of their senses.

Experience reminiscing, reflecting and its value, and control

Experience being in charge of planning their own activities, choices, lives

Feel like they own these experiences. It is a right, a responsibility, and a duty.

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

I’ll Never Forget (I hope)…

the day I was married; births, marriages, and deaths of family members; past Christmases; vacations, speaking engagements and all the wonderful folks I have met; the Bicentennial (I was the Bicentennial chairperson for Monroe County, Indiana!), etc. Everyone has moments, hours, days that stick in their memories for a long, long time. A psychologist friends of mine calls these crystallized memories.

One of those reoccurring days for me is the day after Thanksgiving. This is the day for the past twenty or more years I put out our Christmas lawn decorations.For me this became a memorable day about eight years ago, the year I was told by a friend wearing a white coat, “Richard you have dementia, probably of the Alzheimer’s type, and certainly with Alzheimer’s features.”

Although I am pretty sure I get the order they occurred, and many of the details mixed up, they are memorial days for me because I can measure my deterorating level of competence in the daily activities of living (other than dressing myself, bathing myself, etc). Do I recall where I stored everything? No! several years ago I simply lost all our extension cords because I couldn’t remember from one year to the next where I Put them. We have been looking for years and haven’t yet found them. Yes we had to buy all new ones!

Can I figure out how to string the lights and hook up the extension chords in the right order? This year I asked my 11 year old Grand Son, Hayden to help me!

Do I have enough self discipline/focus/control of my attention that I can accomplish all the tasks by myself and in one day. This year my Son and Daughter-in-Law stepped in and “helped” me stay on task(s) and get the jobs done.

When I have completed the tasks and plugged everything in, does everything stay lit? This year I plugged the extension chords into the wrong plugs and within thirty minutes blew several fuses. I’m still rearranging plugs and trying to remember how I got it all to work last year.

I know these seem like trivial problems. I know these are problems my family stands ready, willing, and able to enable and support me. I know all this, yet I still feel bad - sorry for my self, I guess. I really hate this disease/process/condition/syndrome!

Hello,

My name is Richard and continue to confront the symptoms of a disability labeled by the medical community as Dementia, probably of the Alzheimer’s type. For those readers in England and West to the international date line— This November newsletter is arriving on the first day of December. For the rest of you I just squeezed in on the last day of November. Such has become my life since my trusted assistant of two years gave birth to her third child and remains at home with her wonderful child (Trinity Ann), while yours truly and his oldest grand daughter attempt to get the cyber-presses rolling and this newsletter out on time (sort of).

This month (still november) took me to Detroit, Ann Arbor, Kansas City, San Angelo, Springfield, and Carbondale. Not to mention turkey days, putting up lawn decorations, and my wedding anniversary. Yes, I travel too much. I just cant seem to stop running away from something(s). They are catching up, and a couple of new ones have passed me. They wait greet me every morning!

“The biggest problem with communication is the illusion that it has taken place” G.B. Shaw.

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?