Rather personal entry; A discussion of my own goals … while living with dementia symptoms.  (PS: “Bindy” was my nickname as a child and young adult).

This willow tree saw the pattern of our lives on a dreamy day in May.

Bindy is sitting on the first quilt her mother made,
reading from her grandfather’s third-grade textbook.
Shelly and Spence are playing “house” under the boughs on the other side of the tree.

Shelly plays the “Nurse”.  And Spence is the “Hero” who dies.

What a forecast of reality –
Spencer died as a 21-year-old “Hero”, and Michelle was in charge of the cardiac-respiratory unit.

Me? I sit in my wheelchair, wondering what G0d has in store for my life.

I’ve been busy surviving the chaos, but I know He still has a purpose for me,
and He wouldn’t request something I am not capable of.
… So now I wait …

(Nickname was “Bindy” before I legally changed my name to Truthful Loving Kindness)
2001-01/15

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On learning he had terminal cancer, neurologist Oliver Sacks wrote, “I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. … I shall no longer pay any attention to politics or arguments about global warming. This is not indifference but detachment — I still care deeply … but these are no longer my business; they belong to the future.”  (Link to NY Times article at bottom of page.)

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Tru here.
After developing dementia symptoms over the previous 12 years, on learning my dementia was probably irreversible and progressive, I also re-evaluated my priorities.  Like Oliver Sacks, I discovered a feeling of detachment for politics and other issues over which I had little control.

In September of 2006, I had investigated the Hebrew words “chesed v’ emet”.  My word study showed that, according to my own personal vocabulary, these words meant “Truthful Loving-Kindness”  or actions based on Loving-Kindness (chesed) with unwavering truthful reliability (emeth).  I said to myself, “That is what I want my life to be about.   As much as possible, I want that to be the description of me; the MEANING of my life.  A year later, on my 50th birthday, I legally changed my name to “Truthful Loving Kindness”.  This has been a consistent reminder of my life goal, and a guide for decision-making and priorities.

Six years later I received a tentative diagnosis of dementia.  No change in my life meaning, but a huge change in possibilities of how I could best accomplish demonstrating Truthful Loving Kindness. 

The minor issues fell away.
I mostly lost interest in anything that was not in my own sphere of influence.
Oliver Sacks put it well;
it is no longer my responsibility.

Not many people are compelled to collect and analyze data.  I am.
I remember my first conscious analytical decision.
At four years old I decided I wanted to be a good “Mommy” when I grew up, so I decided to pay attention.  I started analyzing the parenting techniques of my parents, my friend’s parents, and everyone else’s parents.  I thought about what did not work, and remembered what did work.  Later, other ten year old girls played Barbie.  I collected historical data, separated that data according to desired categories, and created my elaborate card catalog of dates and events.  As you can imagine the computer is my friend.  I am an avid Searcher.  I also pay very close attention to the credibility of which sources I use, when adding to my vast collections.
(Obviously I use Dewey Decimal System in order to keep track of my various pursuits – LOL!)

Now I collect and analyze data about myself and my dementia symptoms, writing about them weekly in this blog.  I collect things written by other PWD (Persons With Dementia) and make various pieces of that collection available to others on a monthly basis thru the online collection of links called the “PWD Perspective” (link at bottom of page).  Am collecting PWD Dementia Success Stories and hope to bring copies of that collection when I speak at the annual Alzheimer’s International conference at Australia in April 2015.

Don’t get me wrong; yes, I “suffer” from my dementia symptoms.  (And please do not complain about me using that term; as a Person With Dementia I personally am the ONLY person who has the right to say whether I suffer from my dementia symptoms.)
If you follow my blog then you know I have hallucinations.
I have mornings when I wake and do not recognize the man beside me in bed.
I have months when I average three hours sleep per night, and those few hours filled with terrible vivid dreams that are more real than my daytime hours.
These are all somewhat “expected” factors of Lewy Body Dementia, so not surprising in the least.
My reading comprehension has dropped from University-level to fourth grade, so I can rarely find an enjoyable novel in which to escape, and it is progressively more difficult for me to analyze the data I wish to add to my collections.
(In fact, now I collect only dementia data, almost exclusively from other PWD and often do not understand that either.)
It is a rare movie or TV show that I can even tolerate, let alone enjoy.
I can no longer enjoy music with more than one or two types of musical instruments.
And rarely do I understand what is said on a phone call, because I cannot see the speaker’s mouth move, so it just becomes a mass of scrambled sounds that makes no sense. 

In short, I am slowly seeing everything I value in life being taken from me,
in tortuously slow increments,
requiring constant acknowledgements to loss and grief
in order that I can fully enjoy whatever joyful moments await me in the future.

That is part of the cost,
but the benefit is that I have the privilege of describing what it feels like to experience those dementia symptoms.
This is not a well-trained “expert” describing what they SUSPECT it must feel like, but what these symptoms feel like in my own lived experience.
And as a fellow traveler on this path, I can also collect and share what other Persons With Dementia (PWD) have written about their own lived experience.

My ability to make a difference pre-diagnosis, and ability to make a difference post-diagnosis are very different.
In the very-big-picture of what differences I can make while living on earth, I would pick the much larger differences with my post-diagnosis life.
In the really big picture I can effect my main goal of demonstrating Truthful Loving Kindness much better post-diagnosis.

Maybe those changes will not occur during my lifetime,
but I will write as long as possible … and eventually the PWD voice will be recognized as very valuable asset for those who have relationship of any kind with a PWD.
And that is a big deal to me because …

Relationships make life worth living. 

Links:

My Motivating Hopes at https://truthfulkindness.com/2014/10/31/my-motivation-hope/ ;

Oliver Sacks at http://www.nytimes.com/2015/02/19/opinion/oliver-sacks-on-learning-he-has-terminal-cancer.html ;

Dementia Success Stories at https://truthfulkindness.com/dementia-success-stories/ ;

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