BRAVE NEW WORLD OF DEMENTIA Chapter Three

On this bench, with this person, in the place, in nowhere, Lorli kept on expounding.

In our recent past we had other terrible diseases that took lives randomly ravaging our society and were able to find drugs eventually to cure them. We saw no reason that we could not do the same with DD. It had a fairly common course and seemed to attack the brain in similar if not the same ways.

We tried and came up empty. Too many years of research produced little but some drugs that could slow the process down. When we were reaching the point of diminishing return where too many were being cared for not enough being cured; at a cost that communities and the State along with the families could no longer afford to do we realized we had to find something or end up seeing these patients end up homeless  and in the street.

We were doing no more than treating the patients palliatively. We were giving the afflicted drugs to comfort them, institutionalizing them for their safety, accepting the uncontrollable consequence of the disease and waiting for them to die. It would have saved money to euthanize them but mercy killing was prohibited by law and no one was anxious to change that even for special exceptions like this.

An international dialog started discussing whether or not there was value in continuing funding research to find a cure or time to accept it was a lost cause.

Instead of arriving at a yea or a nay the argument turned to trying alternative ways to attack this disease. We had to find another approach; we need to find if anything else could be effective.

There had been many arguments about life style changes in diet, in physical activity, in socialization of people afflicted, all of which might make a difference. In my field we looked specifically at how the brain operated. We asked, is it possible to get the organicity of the brain to overcome the injury the brain was sustaining from the disease.

What finally bridged the chasm between those who wanted to continue putting all their effort into research and raising funds to find a cure and those who wanted to look for something else, when a comment was published by an editor of a country weekly newspaper that found its way into this dialog.

That comment was retrievable from the kiosk that had delivered a copy of the article Research Brief: Hippocampal Hyperactivity referred to in the last two chapters.

The text of that comment was this:

Not If, Not When, But, Why Don’t We Start

Before It Eats Us Alive?

It is not a question of “if”; It is not a question of “when” are they going to help? It is an issue of “Why” don’t they see they are so needed, if only for an interest in us if nothing more. I speak not from the standpoint of a caregiver. I speak for the one who is cared for. God Bless the caregivers we have and the folks that continue with an interest in how we are and how we get along.

Virtual abandonment is one of the worst anomalies we must deal with after we’re diagnosed as having a Dementia. It is equal to the feelings of the Caregiver who is also abandoned. The only difference is we do not suffer the exhaustion and the total lack of validation a Caregiver gets doing the thankless job they have taken on.

We at least have the loving concern of our Caretakers.

Why? There are a million reasons out there, too many to count. Many emanate from a misguided Society in which we are acculturated not to care for anyone else but ourselves. If we are imbued with a lot of altruism it may manifest itself in concern and care for our spouses and families, but generally it goes no further.

We are the guy in that story of the executive who suffered a near fatal heart attack. When he had recovered sufficiently he was released to go home. His wife asked as she came to pick him up: “Are you anxious to get home?” He said “would you drop me off at the office, I will call you when I am ready to go home.”

This is the guy who will have the epitaph on his tombstone: “He Worked Hard and Supported His Family Well.”

Why would a person be so honored in his death remembrance? After more than 500 years of living the rule of the survival the fittest, since we canonized Capitalism as our way of life, we have been acculturated accordingly. We have become assimilated to a political, social, and cultural way of life that turns us into ourselves. We have completely embraced this way of life implicitly in a formula to protect us and give us the greatest return.

We have been brought to believe so long as we concentrate on acquiring as much wealth as we can at the expense of all others, and so long as the other guy does the same thing, this will force a balance among us in which all receive the greatest measure of return as possible.

It is for this reason we live on personal islands and connect with others only when it is in our self- interest to do so. We are responsible only to those we have allowed on our island.

The fact is this self-indulgence is taking its toll. The abandonment of our sick and elderly, of the demented, is evidence that our system is failing us.

To suggest Capitalism has not produced what it proposed would be suicide. Capitalism is not the perfect check and balance on keeping parity, on maintaining a balance of fairness. There are better ways if only we have the courage to adopt them. Too many who are prospering through advantages and voids in the balance would vehemently oppose such thoughts. "Commies” used to be their charge, now it is simply “Liberals”.

This coupled together with broken thinking, broken families, broken outlooks, philandering institutions all taking advantage of us, together they are major contributors. Our society centers on “me”. If I do my best I will both succeed and keep everyone else in check as they try to succeed.

We do not have rules of engagement; in this we simply compete. There is no overall moral or spiritual good given us in our training for life, we are given rules, with too few explanations for their reason.

Like one that galls me too often: We are told to simply to stay in the guidelines of the rules, like “Know love and serve Him in this world and be happy with him in the next”.

Then those who tell us to “do this don’t do that” do the contrary in spite of what they say. The Church, (RC), promotes sexual abstinence then we see the celibate clergy use aberrant forms of sex for abuse. We see bankers under the color of protecting us actually extorting us. The politicians say they will serve us and turn around and do what their puppet master secretly pay them to do.

Is it any wonder this duplicity spoils our outlook and action? There is no sense of responsibility leading us. We follow a rule of “protect your tail” and manage to get ahead anyway. Avoid anything painful unless it is biding the time necessary to nurture your success.

This is and historically has been our way. It follows a formula we trust. It is in fact a formula that is eating us alive.  No one is around asking “What can I do for you? Or “Can I help?” The formula will not work that way. Help comes from those who help themselves!

Is it any wonder that any but the closest care when someone checks out of the race. They have not time but to continue the race until it is too late and they are the ones checking out.

When I returned I read an article in Alzheimer's Reading Room entitled Alzheimer's and The Invisible Siblings that put me in mind of the comment Lilo made on her history about what happened to DD in “Nowhere”

Read it by clicking on the reading room or the article title to read it.