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

By TOM BREEN, Associated Press -

“I know it sounds cruel, but if he’s going to do something, he should divorce her and start all over again, but make sure she has custodial care and somebody looking after her,” Robertson said.

The chairman of the Christian Broadcasting Network, which airs the “700 Club,” said he wouldn’t “put a guilt trip” on anyone who divorces a spouse who suffers from the illness, but added, “Get some ethicist besides me to give you the answer.

Most Christian denominations at least discourage divorce, citing Jesus’ words in the Gospel of Mark that equate divorce and remarriage with adultery.

Terry Meeuwsen, Robertson’s co-host, asked him about couples’ marriage vows to take care of each other “for better or for worse” and “in sickness and in health.”

“If you respect that vow, you say ’til death do us part,’” Robertson said during the Tuesday broadcast. “This is a kind of death.”

translation:

“I see dead humans!”

So, living with the symptoms of dementia is much like being close to, exactly like being dead, except you haven’t stopped breathing yet? Is that right Pat? What about living with other cognitive disorders, other disabilities? Are these folks dead too? I wish this way of thinking was unique to Rev. Robertson’s twisted moral/ethical/religious beliefs. I wish this wasn’t just another example of stigma making, stigma reinforcing. This statement goes beyond the creation of a myth. It is simply untrue - the assumption upon which his conclusion is based and the conclusion he draws are both wrong, wrong, wrong. We should all stand up and speak out concerning the errors of Rev. Robertson’s thought process and beliefs. The fact that he felt comfortable assigning millions of people living with the symptoms of dementia to some form of living purgatory, divorced zombies, and did so on a National TV religion based show, shows how comfortable he is judging others who are not exactly like him.

The next time you feel moved to support his ministry, please remember what he believes about your mother, father, spouse, good friend. And instead of sending him a check send him a note telling him of the error of his ways.