Recently, a good friend of mine, Sean Caulfield (no relation to Holden), wrote in his blog about his own lack of understanding why others don’t see, hear, and feel as we do?

Most don’t just get “IT”, it got me to thinking … The souls, spirits, essence, self, lives in each of us, and all of us - you too - from the moment we are born to about two minutes after we stop breathing are alive and well within us. We, people living with the symptoms of dementia, sometimes lose touch with parts or all of the moments as you experience them, but seldom are we so disconnected our attention cannot be brought back in the moment by kind souls like Sean and his boss John, and the folks who lead their inspiring programs.

I believe dementia is first and foremost a result of attention gone awry. When we lose our conscious focus our brain quickly fills in what we have lost, something with the past, sometimes it makes it up, sometimes it sends mixed messages.

Sean’s programs are about giving mostly older adults something interesting to attend to, a new experience that feels different from live back in the institution.

The shrinking and/or damaged hippo campus is still shrunken and/or damaged, it’s just that other parts of the brain can sometimes overrun its executive functions.

Does dementia come and go? No. Does our ability to overcome the misperceptions and poor conclusions and choices each of our brains make from time to time? Yes!

We don’t have to deny dementia to honor and support our individualism, our wholeness. It’s not the linear thinking we want to be true. Life is easier for everyone when the brain is on automatic pilot. We are guilty of stigmatizing what we don’t like, what we are afraid of, what we don’t understand.

Unfortunately, the words ‘Alzheimer’s Disease’ has attached itself to lots of myths, hoaxes, lies, and fund raising appeals. They all come with the label. Even when presenting real live people proving what others believe about them not to be true, the best we can seem to do is simply be amazed:

“Wow, they can think and talk - not necessarily all time of course, what I am seeing must be an exception to the rules I believe to be true.”

This rationalization leaves people living with dementia with no chance of being accepted as whole human beings. Folks drum, and sing, and talk about art - then slide back into their rooms, alone, awaiting the next activity.

What we see as evidence of hope that everyone will shift their understanding of the folks living with and in the long goodbye, others … well, I really don’t know how or why others aren’t shaken to their closed minded approach to people living with the symptoms of dementia. They do something in response o this evidence,but it isn’t somehow strong enough to shake their mistaken misunderstandings of who and what people living with the symptoms of dementia really are - folks just like them, attempting to live with the disability that comes with the symptoms of dementia, and the stigmas of dementia.

I suppose awareness, however fleeting, is the first step, but for us living with dementia in the short run these non-pharmacological interventions are fun, for the moment, but not enough for us by ourselves to swim up the current created by stigmas, understaffing, basic misunderstanding and appreciation of us. In this sense, it makes our life sadder. Having drunk a cold glass of milk, how about the warm, sometimes bitter water we usually taste?

No wonder so many give up so early. I shall not be one of them!

Hello,

I recently completed creating another DVD that directly addresses the myths, stigmas, hoaxes, lies, and stigmas of Dementia, probably of the Alzheimer’s Type. This is the script of the introduction of the DVD.

This is the message, the insight I leave to myself and I share with you for you to consider and keep with you. I don’t want to forget this stuff. This is the information I have learned, experienced both first hand and by watching and listening to other folks in boots similar to mine, but further

along in the journey. This is a summary of what I have experienced and learned, and a summary of what I wish someone had told me a week or so after I was diagnosed. It would have saved me a lot of grief, it would have saved my family from having to deal with my mood swings, my thoughts and fears of an immanent death.

A fear that I had begun the long goodbye.

A fear of dying twice, of suffering, of losing my soul, of losing myself.

A fear of being a burden on my family both financially and personally.

A fear of dying not being aware it had happened and was going to happen yet a second time.

I have witnessed a future which will be mine unless some unforeseen circumstances drastically change me and/or my

disability.I have confirmed for myself my belief in the enduring human needs that never, ever fade away regardless of the

severity of a person’s cognitive disabilities. No spirit dies before the body in which it resides dies.

No soul slips away, no person ceases to exist until shortly after they draw their final breath.

This I now know for sure.

And although I will probably reach a point where my current level of self-perceptions does not focus on, or concern itself with

seeking out this meta perspective of myself - I know for sure that my needs to be me, to be aware of today, to want to feel connected to others, to feel like I have a reason for opening my eyes every morning… these needs will always be with me, a part of me, needs of mine and somewhere inside of me wants of mine. The hunger created by unmet needs is not dulled by what others say or think of me as I slip deeper into my symptoms.

As my ability to cope with my symptoms becomes less and less effective, my higher level needs do not recede and never ever disappear. Yes, my ability to directly communicate my need for them will over time deteriorate. Yes, you will have to try harder, try different to understand me. For this I am sorry.

It is a burden that requires you to learn new ways to communicate with me and new ways for you to understand how I can communicate with you.

It is an area of psycho-social research which is all but ignored in the present rush to “cure” what ails me.

But it is the most important way you can support me and millions and millions of others living with the symptoms of dementia. Discovering how to more effectively connect with me, communicate with me, and enable me to feel like I am the human being you know that I am.

As for those of you who honestly believe there is a point of no return in the lives of people living with dementia, a point beyond which we are gone, but not yet dead, a point at which we regress, withdraw, reduce our needs to live and feel like we are alive, connected, a full human being - all I can say is:  you are wrong, wrong, wrong.

You have projected your own fears, your own view of what being alive means - a view limited by your education, experience, fears for yourself - you have concluded if life can’t be as you understand it right now, then it simply cannot be any other way. I have heardsome smart, well educated professionals say people with dementia reach a drop off point where they are zombies - dead men and women shuffling around, murmuring incoherently by their standards - a conformation of the belief that if we don’t talk like you, we must not in most any ways be like you. I repeat, this is wrong, wrong, wrong. We are not, and will never be ”dead men/women walking”. No one ever is such a person! Please, please, never treat someone as if that were true.

I’m still here. We are all still here, this is more than a slogan, a catchy phrase, a title for a number of books. It is a clear statement of an absolute and enduring truth. It will never change regardless of how we are seen or treated.

As a human being my humanness will never, can never fade away.

Unfortunately the way we are treated can convince even me that such is the case. I can be convinced that I am an empty shell. Slipping, undependable cognitive abilities inhibit me from understanding what is happening to me, but even when I believe as you do that doesn’t change who I am, it only adds one more person who believes I am in the midst of the long good bye, when in fact I am not.

This is information, drawn from the shared life experiences of myself and hundreds of others folks living with the symptoms of dementia.

I wish I could have seen this a week after I was diagnosed. I don’t claim this is all absolute truth. It is relative to my ability to understand myself, to understand others.

But when most all the advice we are given is given by those who have not for one moment walked in our shoes, shared our fears, heard the words: You have dementia probably of this or that type - it should naturally come closer to resonating with your own feelings than all the books, web sites, lectures, and check lists others are so quick to point towards us.

I make no claims to be THE voice of dementia. I am really not even a voice of dementia, for each day my voice changes with my life experience, my symptoms, and my ability to view myself with any sort of objectivity.

I encourage you to seek out others who share your diagnosis, your kinds and levels of symptoms. The more we know of each other’s experiences, thoughts, and feelings the better chance we have of better knowing and understanding our own.

Right now you must decide for yourself who you are, how you want and need to be treated. As with most of life’s big decisions: not to decide is to decide.

Please, please do not let or even encourage others to decide for you.

This is not the time in your life to trust others to take complete control of how you are treated, how you are understood.

It is the time to honestly and forthrightly stand up and speak out for yourself, about yourself. It is time for you and your family and friends to understand and appreciate as best as each of you can that you have a disability, a chronic disability that will not go away, will probably get worse, and will require you to depend more and more on  others to enable you to live a purposeful and purpose filled life.

Hide the diagnosis under a bushel, no.

Hide yourself in a closet, no. In the short and most certainly in the long run waiting to cross the bridges of dementia before you talk and plan for them is the absolute wrong strategy. I tried it, many try it. It makes the bridges higher and more dangerous to cross, and the roads get unnecessarily rougher and rougher for all.

This then is me standing up and speaking out to others who are living the symptoms of dementia, and I’m inviting others who do not live with these symptoms to listen and want to begin by addressing some of the myths and stigmas that are associated, in fact even promoted by some who do not live with the diagnosis of dementia.

Richard