The Magic Bullet Brought to you by the People at Alzheimer's!

Have you ever wondered?  Does anyone really know what Alzheimer’s Disease (AD), what Dementia, really is? Does anyone have a clue about what they can do about it? If anyone does why aren’t they doing something?

I have the disease, had it for five years. Having retained my cognition and my ability to analyze what is around me, I set out to learn what I could in order to survive this debilitating disease as long as I could. I took Namenda and Aricept, I ate right, i.e. the Mediterranean Diet, I stimulated myself with social, intellectual and creative activities. Yes, I even exercised. In an effort to stay sharp I spoke out about AD, advocated and was received quite nicely. I developed the ability to do art work. This picture is what I consider my crowning achievement:

I am bright, analytical, as a successful trial lawyer I acquired a relatively thorough medical education having a doctor assigned to me by my client the third largest chemical company in the world. I was handling pesticide lawsuits all over the U.S. for ten years. This doctor kept me on top the all of the medical aspects of what we were dealing with. I say this to make this point: I have a good handle on medicine.

In the more than five years I have carried this illness, which has been taking my body and mind ever so slowly minute by minute, year by year, I am bewildered by the lack of medical knowledge, by the lack of Health Care formulas, of the absence of any sensible programs to care for those of us suffering this disease and help us stay functional as long as we can.

All I see is the feverish activity to raise money for research to hurry the finding of the cure for this disease, the magic bullet pill that will eradicate it and make it go away.

I go to the neurologist and expect direction and counseling on what to do, what to take, what kind of progress my disease is taking, and where might I expect it to go? All I hear is “come back in six months” or “come back in a year.” I haven’t been going back. I believe I am better off saving the time.

I have a disease that is killing me, day by day it whittles me down. It will continue doing so until I am all whittled away which is when I will croak, a day I sincerely look forward to. Is there help out there to get me through this terrible trek? The absence and the silence chills me to the quick.

Will they find the pill? Can I take it and make it go away? They figure according to the article I have posted in my Archive that they hope to have something in 2020. Wow, I got 8-9 years to go, wow!

Yeah wow! Should I live that long, will I be a vegetable 14 years post diagnosis?

The article posted The Alzheimer's Bullet which was on Alzheimer’s Reading Room can be read by clicking on the name to go to the Reading Room or click on my Archive where it is posted.

In the article Bob DeMarco, the editor of the Reading Room with the day job of caring for his 95 year old mother Dotty has been her caregiver the last 8 years. He discusses Life According to Alzheimer’s as it is today, and as it is about to get worse.

This is real and the point of the article which leads off with a picture of an Ostrich is you can deal with and plan for the reality of it or you can put your head in the sand. It’s your choice.

When Alzheimer's disease strikes the entire family suffers. Alzheimer's disease is hard to understand, hard to comprehend. As a result, it is not unusual for family member to deny its existence. This leads to additional heartache and sometimes leads to the disintegration of family units. A large fraction of Alzheimer's caregivers say they are not being helped by family members, and they often feel abandoned.

You can stick your head in the sand and suffer the devastating consequences. Or, you can get out in front of the disease and make a plan that allows for the person suffering from Alzheimer's to live their life to the fullest degree possible.

In having it I have learned this. The earlier it is detected the better. The Earlier you are in the Stage of it there is more that can be done to live …(your) life to the fullest degree possible.

The longer we are in the Early Stage the longer we can avoid institutionalization and stay able to care for ourselves. This adds to our quality of life and it saves everyone money. The cost of care is unreasonably high.

This is a formula that works. You won’t learn it at the doctor’s office, at the health care clinic, or from any AD support professional. The latter will tell you what an awful disease it is and we should raise money to do research and make it go away.

Where will it end, and what set of Quonset house will we find ourselves living in?

 I am trying to get off the soap box delivery of the last few posts I have made on this blog. My last three posts are these: 

·    Can They be Trusted?

·    AKIN To Beating a Dead Horse!!!

·    Words Can Smack You Right In Your Face!

Each one of these posts speak of our dire times and our impossible options. They muse about our coming Armageddon when the Tsunami of Alzheimer’s Disease, now starting, gains full strength. That is when this epidemic level of AD will break us all, individually, family, community and yes, Country! I don’t want to sound the Crepehanger (Defn’d: defeatist, depreciator, downer, gloomy, killjoy.) I am driven by what I see and the absolute reality of it occurring.

The article reported in the New York Times 10/24 says it better than I have said it countless different ways on this Blog. Still No Relief in Sight for Long-Term Needs is posted on my Archive. Click on the title to go there. For this reason I am staying on topic for at least one more post.

Why do I write this Blog? Why does it sound like I am the prognosticator of peril and doom? Am I Cassandra with no foundation?

(In Greek mythology, Cassandra was the daughter of King Priam and Queen Hecuba of Troy. Her beauty caused Apollo to grant her the gift of prophecy. However, when she did not return his love, Apollo placed a curse on her so that no one would ever believe her predictions. She is a figure both of the epic tradition and of tragedy, where her combination of deep understanding and powerlessness exemplify the ironic condition of mankind.) Wiki…

I write to get fulfillment. My fulfillment is not an ego thing. It is rather a need to balance the life I’ve lived on earth by doing some more good things. I have sensed my balance sheet weighted too lightly on this side. Therefore when AD hit by way of diagnosis more than five years ago I knew why I had it and what I was called on to do with it.

Looking at my form of this disease I recognized I had it in a unique and different way. I was an early diagnosis and my symptoms and findings defied the experts. One expert waded through it, a Neuro Psychologist at the University of Minnesota named Dr Erin Holker, and after a 4 hour battery of the Neuro-Psychometiric exam she gleaned from the findings that I had atypical AD.

My experience of this atypical variation has left me loaded with disabling deficits resulting from loss of brain tissue, but the least daunted by the loss has been my cognition, my memory, my skill to read, write and analyze. I recognized this positioned me ideally to talk about it from the inside describing to those outside what it is like having AD and what is needed for those of us with it.

This gives me the sense of doing some good for anyone interested in learning more from hearing me or reading my material.

Why did I choose to do this with my AD? 37 years ago I was a raging Alcoholic. I could not quit drinking and abusing mood altering drugs. Unable to do anything, finally realizing I was an out of control Alcoholic, knowing at age 38 if I did nothing I would die, leaving a wife and three children with nothing to live on, I recognized I needed help so I joined Alcoholics Anonymous (AA).

I learned a wholly new and different style of life, one in which I submitted to the help of my higher power. I learned all I needed to do was ask my higher power for help and it would deliver. This was done in spades and an entirely new way of living ensued. I learned all must be turned over and when honestly and respectfully done it worked. Over the next thirty years this was emblazoned in me. It worked and I worked with it.

When AD came along I knew immediately what must be done: “Turn it Over!”   

One of the views I get of AD on the inside is the calamity AD will cause us. All of what I have written before, such as, the population surge, early diagnosis, the absence of any Economy in Care, the dearth of programs to help people with AD, comes together in an impending catastrophe soon to happen.

This article Still no Relief in Sight describes one more element of unnecessary pain our society relegates to us. The long term needs bill failed because it was booby trapped from the start via accommodation of the opposition and then failed  support from the inside of Congress for lack of anything coming back to the Congressmen if they should make it work.

Just think of it. Today it is reported in the news that many generic drugs will not come to market because their market right to purvey their generic look alike has been sold back to the patent holder, leaving the high cost patented item the only available product on the market at its high and probably getting higher cost.

How in the good god’s name could something like this get by congress, get by the agencies? Well it did.

Long Term Care is off to the same bone yard. It wasn’t defeated by vote it was defeated by subterfuge rendering it impotent, impossible to perform.

The article posted says many things worth taking note. It speaks of a $72,000 annual cost for the “Home.”  At  another place in the article it speaks of an increase to 7,000 a month. Multiply 7,000 by 12, you get $84,000 a year. How long will a retirement nest egg stand this type of a drain?

The article talks about the penury of the spouse after paying all she/he has to keep the other in the home, leaving them nothing to live on.

What follows are excerpts I have taken from the posted article, the repeat of which make the point:

Unlike the rich, who can afford to pay for services themselves, or the poor, who get help through Medicaid, the federal and state program for low-income people, many members of the middle class have to look after disabled relatives themselves, or pay someone to do it. Polls show that many people believe that Medicare, the federal health program for those 65 and older, pays for such care. Actually, Medicare stops paying nursing home bills after 100 days.

More than 10 million people in the United States already have long-term care needs, and two-thirds of the costs are paid for by government programs, mostly Medicaid. Studies estimate that unpaid family members deliver an even larger share of the care, and the cost of nursing home care averages $72,000 a year…

Unlike the rich, who can afford to pay for services themselves, or the poor, who get help through Medicaid, the federal and state program for low-income people, many members of the middle class have to look after disabled relatives themselves, or pay someone to do it. Polls show that many people believe that Medicare, the federal health program for those 65 and older, pays for such care. Actually, Medicare stops paying nursing home bills after 100 days.

More than 10 million people in the United States already have long-term care needs, and two-thirds of the costs are paid for by government programs, mostly Medicaid. Studies estimate that unpaid family members deliver an even larger share of the care, and the cost of nursing home care averages $72,000 a year...

Less than 3 percent of Americans now buy private long-term care insurance.

The government’s version of long-term care insurance shared a basic flaw with commercial options: It was voluntary, with benefits to be paid entirely by premiums.

Can They be Trusted?

 OMG, I am on a roll, backup on the soap box, can’t leave this sub issue alone. I could entitle this division in my series consisting of the last three Blog Posts, the sub-issue as “What we are up against.” Another title might be “Playing to a stacked deck!” The article I have posted today Team approach best for treating, dealingwith Alzheimer's could be subtitled “A Chink in the Wall of Protection.”

Read the post on my Archive by clicking on the title of it to go there.

As you read it you will see it says so much of what I have been saying but for one sentence:

There is hope for continued progress. The National Alzheimer's Project Act was signed into law recently. An advisory council has been formed to better understand the scope of this illness and help direct efforts in research and care.

Perhaps hope is all there is. We have the National Alzheimer’s Project Act (NAPA) which is wonderful. The act reads right and it should offer hope. But it is teamed by the same professionals that have continually brought us “more or the same” and “our way is the right way and the only way.”

A friend of mine, a scientist, a British National who has been in this country long enough to think American on top of his British, always says with a chuckle after a spirited political argument, “Follow the money, that’s where your answer lies!”

The money trail in this case seems to be a circular one. It seems to me it starts with the entire “Do good for those poor folk affected by Alzheimer’s Disease (AD)” crowd. This is the same bunch who make up our NAPA representatives fashioning the new law as an advisory council. The raising of money starts with them. Looking at the intransigence to change by them I wonder, does the money go back to them as well?

The balance of the article is right on point. From a practical standpoint looking at AD World, as it now is, the only course to offer immediate help for those of us who suffer is as stated by the article:

Much of the current research focuses on early brain changes and early diagnosis with the goal of developing treatments that will effectively halt the progression of this disease. However, until this goal is realized, there remains a need to improve care for those living with Alzheimer's.

This article written by a professional, a neurologist, in the field of treating AD has a clear view of the practical needs in the field of AD. Why are there so few companion opinions issuing from the professionals?

Medicine offers this. “Keep them safe as long as we can than Institutionalize them for their own safety” or “Take this and call me in a year.” It almost universally stops there. You don’t see a doctor talking life style changes, brain health programs, stimulating the brain and socializing it.

They but deal with the medical that is no more than “take this.”

The support community is not giving any of this out. Our local chapter of Alz.Assoc. recently started an Early Stage set of programs. This is wonderful. What took them so long to get started? Have you ever heard them question the Cost or Quality of Care? Almost exclusively they drive programs to get funds.

This is as directed by the National Alz.Assoc. That is asked of the locals, “Raise Money and turn 40 – 60% of it over to us.” Given, a director of the National Institute of Health stated in a talk recently, in my hearing, “We formed the National Alz.Assoc. to raise money to finance research for the cure. We were given the legal mandate to research but did not have enough money given us so we went out and used them to raise funds for us.”

They did this 15 – 120 years ago. Haven’t they come any further since?   

We don’t see any attempts or even concerns about better care for AD from the Government or its Agencies. It is a language they do not speak. There is no unified effort going other than a number of saying, “Hey, this is wrong, get us some help, it will in turn help you!”

As it is now AD is becoming an epidemic with no one to care for it. Those of us with some money, not the 1% with most of the money, can pay for care for a while. But our ability runs out quickly. We are then classed with the class that needs to seek help from Government. The only help there is by way of Medicaid. Medicare does not pay for it. The one source Medicaid is under extreme pressure to terminate it and/or curtail it.

If this is the source of help, in the face of the intolerable cost of care, and it remains available to help, it will break the economy. If it is limited, those of us left to the street will break the economy.

What is needed now as help is treatment of Early Stagers, starting with Early Diagnosis, and then continuing all for the purpose of prolonging us in Early Stage able to care for ourselves. When this is not enough, then find a way to provide Care with Economy, in graduated levels, from home care, day care, periodic care, assisted living programs in other than institutional settings, all seeking a more individualized form of care within a range of economy of care.

AKIN To Beating a Dead Horse!!!

Here I go again. I am spewing more liberal pap on a blog dedicated to the needs of Alzheimer’s Disease (AD) which I prefer to call Dementia. Another article today appeared on Huffington Report, an already liberal blog, about the disparity of wealth in this country and when it came to be.

Read Thirty Years of Unleashed Greed  which I have posted to my Archive, click on the name of the article to go there to read it.

I write out of anger, not political preference. At the same time, this disclaimer, I am a democrat, a moderate one, who believes everyone is entitled to a fair share of the wealth of this great country.

My anger has to do with the difficulty all of us with the exception of the 1% the very rich in facing what life presents. Life was never easy generation to generation. Therefore we might just as well accept it. The Lord ruled the manor. The upper class would not work in Victorian England. They had it all the people served them. Nothing appears different today in our country. What happened?

Our country was special. It was founded on equality and sharing. Its foundation was the formation of a free and independent society dedicated to eradicating the conditions that produced the extreme disparity in European Society between haves and have nots. Although nurtured in continual tension trying to maintain a balance of wealth and power often things would go out of balance. The period of the Robber Barons following the Civil War and the Deregulated Economy conceived in the 1980’s and completed by the Crash of 2008 are among the most recent experiences we have had.

To date we have been successful in regaining balance when an imbalance occurs. The question is will we do so now. To date, three years post-crash things have not relieved. The disparity survives and seems every day to get stronger. As hard as has been tried there is no quarter given by the 1% of our society who are the haves, who have the money and the power and are not yielding and there seems no way to make them give in at all.

The imbalance has most recently been demonstrated according to the article on which this comment is based:

 Between 1979 and 2007, as the Congressional Budget Office reported this week, the average real income of the top 1 percent grew by an astounding 275 percent. And that is after payment of the taxes that the superrich and their Republican apologists find so onerous

This lack of any balance is seen most graphically if you are grappling with Dementia. Treatment is patchy, often non-existent. The Cost of Care is virtually out of reach. The groups supporting AD, seeking solution are not getting it together with any unified and directed plans. Only on the issue of raising funds for research to find the cure is there any unified agreement. It often seems as if it is spinning out of control.

If you have our disease and are functional able to care for yourself with minimal caretaker help you are capable of generating conditions to prolong your functionality. The professionals are still debating whether this is true. As a result they discourage doing anything other than use the terrible statistics of what is happening to raise more money.

Although this may be the only answer it is less attainable than anyone is willing to admit. To start with AD is not the same, in fact it is as different as those who have it are different from one another. There is no common cause that suggests itself; no common cause that can be attacked by a drug to cure it. There is not only AD but varying forms of dementia and a mix of more than one dementia that goes into making the syndrome which AD really is. It is these many differences that defy a singular solution.

The scare tactics that are used to push for donations causes questions as to where there agenda is. Is it anxious for the cure or is there some cash back under the table actions that gets this kind of aggressive fund raising. It really hurts to think this, but there are times I can see no other reason. We are used for their profit without a damn given to our needs!

It is this that brings me back to the Article that describes the current framework of the disparity that has grown like a cancer in this country. We have truly lost our way. In our social structure 1% of the population has manipulated 99% of the population into serving the needs of 1% at our expense. No consideration is given us other than what might serve the benefit of the 1%. Their control is absolute and no regard is given to the evident manifestation of it.

We are totally out of balance to our damage!

This series has been about what the needs of those of us affected by dementia in fact are. The last two essays describe how it is we have gotten to where we are.

We need to find our way out of this predicament. We could change the system or we work on programs in our support. We will need to suffer through this. As things get worse they will either eliminate (Mercy Killing) us or conscience might overwhelm them to relent in their selfish aggression.

Words Can Smack You Right In Your Face!

 At least the words that follow did it for me. They are taken from a very interesting comment by LZ Gunderson, a columnist at CNN. The Article The question on everyone's mind is well worth the read. It is on my Archive, click on the article title to go there to read it.

The words that smacked me are these:

…the impetus behind Occupy Wall Street is not about jobs or failed policies. It's a yearning to be valued again. To be heard and seen. To matter. Some of us are guilty of buying houses we couldn't afford or leaning on credit cards to live above our means. Banks created a business model that profits off of our desire to keep up with the Joneses. Now the rugs been pulled from under us and we're scared.

The surrounding context of the article set out what we have become, what we truly are, and how it is articulated in our culture. It fits into this series about what to do about Alzheimer’s Disease (AD) and Dementia because it zeroes in on the reason for the seeming impossibility of doing anything as we watch our ship sinking at sea.

Our culture has transformed in the last 30 years or perhaps the last 60 years. It can be argued it started with the Age of Reagan or it started with the Age of Eisenhower (Ike) who was first elected in 1952.

At the time Ike took office our world was on the cusp of where next to go from a material standpoint. Think of it! Continuously since the mid ‘20’s we had fallen into an economic abyss.

In the ‘20’s we had reached the pinnacle of power wrought on us by the Age of The Robber Barons. Their period had to do with the difficult adjustment both culturally and economically from the Civil War. This period oscillated between many views, many movements, but one that kept quietly ascending was economic expansion reflected in the building of Railroads able to connect us as a nation from coast to coast then border to border.

In that period we conquered the Wild West in what history calls “The Westward Expansion.” It was in the New York Tribune that Horace Greeley wrote in 1865:

Washington is not a place to live in. The rents are high, the food is bad, the dust is disgusting and the morals are deplorable. Go West, young man, go West and grow up with the country.

First a Mantra than a fact, people went west seeking their fortune. In turn the financial moguls in the east ventured into enterprises to aid and assist this movement and above all to make a bundle, which they did.

Greed got out of hand thus we experienced the crash of ’29’ followed by the Great Depression of the ‘30’s. While still in the throes of the Depression we found ourselves in WWII. With all of the death and destruction we experienced an economic godsend. Working in the war effort people had jobs, people had money and people had values measured in purpose.

Came Post War and the question posed was what to do to avoid slipping into economic malaise typical in post war periods. Ike and his Sec’y of Defense Wilson (What’s Good for GM is Good for the Country) riding the crest of Truman’s Marshal Plan in Europe and Recovery in Japan, proposed the Interstate Highway System the construction of which of which transformed America. Along with the Interstate Project so many others flowed, such as the Motel, Fast Food Chains, people moving to suburbs than exurbs, the West filling in with population and myriad other economic miracles.

From the Depression experience there was legislation providing for regulation protecting us from the “Sons of the Robber Barons” and a wonderful equalization of wealth permeated our society. And then it all went awry!

Was it the deregulation of the ‘80’s and ‘90’s? Was it mass proliferation of communication morphed by a computer connected economy where much could be done without notice? Or was it the greed and access to wealth that first seemed to buy much of the media than much of Government and the politicians. It is hard to know; only historical retrospect will tell us.

We do not need history to tell us what happened and why it happened in 2008, and refuses a fix ever since the crash of 2008. Why is this? We are a culture that is really serious when it asks one another “What do you do” and they measure another’s worth on that scale and that scale only.

It is this, attitude and dearth of value that prompts the economic predicament into which we have slipped economically. We are quickly becoming two classes in our society, the “Haves” and the “Have Nots”.

It is this that has produced the impasse we face in trying to tailor the infrastructure of help that has formed in this country to assist those of us affected by Dementia. It is controlled from the top down cast in the concrete of sacerdotal “For Profit” first, last and always. We the affected serve as the excuse to form the cornucopia of riches for the rich and exploitation of us the Eloi, the feed cattle of this society, namely we the “Have Nots.” (See yesterday’s Blog Post: Why People Move to Nursing Homes)

There is no give out of Wall Street or out of Washington. In the aftermath of the Crash of 2008, the intransigence of the financial community, the impossibility of Government to do anything about it, the system in place through which the Haves continue to exploit the Have Nots, is the absolute impediment to solution.

The article on which my comment is based hits the nail on the head. As we communicate with one another and as we measure worth between us the measure is limited to what we do and what we have. No other value is considered.

History seems to always take us to this point to which we can no longer stand it, than unfortunately the lubrication to fix it comes from the “Blood in the Streets!”

This is what the words “It's a yearning to be valued again. To be heard and seen. To matter” means. Said another way, my words, “We the non-rich, the have nots are the sacrificial offering on the altar of greed under its Cross of Gold!”  This is taken from William Jennings historic speech of 1896:

“You shall not press down upon the brow of labor this crown of thorns, you shall not crucify mankind upon a cross of gold." [1]

[1] At the conclusion of the speech, Bryan stretched out his arms in a Christ-like manner for five seconds, while the crowd remained quiet. According to the New York World, at that point everyone seemed to go mad at once and shrieked and rushed the stage. The New York Times commented that "a wild, raging irresistible mob" had been unleashed. (http://en.wikipedia.org/wiki/Cross_of_Gold_speech)

Why People Move to Nursing Homes

In my last post I stated:

The purpose of this series is to try and focus the public view of what our disease is, what it is doing to us, to everyone else, and what is needed to avert the calamity sure to occur if no action is taken.

I will start this part of my series with an article taken from: Allen Power's Blog entitled: Why People Move to Nursing Homes Click on either of the hypertext names to go to and read the Blog and or the article. Alternatively click on Archive to go to my Archive Page where I have posted it to read it.

I believe this article hits the mark on what I choose to discuss in this part of my series. It is right on, thank you Mr Power!

One of two options are attainable in finding our way out of the morass Alzheimer’s Disease (AD) puts us in is to reduce the cost of care and treat Early Stage aggressively to help folks stay in early stage as long as possible. The idea set out in the posted article is an excellent place to start. It questions our culture’s fallacy which today still sets out the modus operandi for treating AD as:

Keep them safe as long as we can then place them in the institution when this becomes no longer possible” (Dr Alois Alzheimer 1902)  

It is my assumption, that of my loving wife and caretaker, and everyone else I know that our ultimate destination before death is the Nursing Home ( “Home!”)  We look to this with fear and trepidation, in part because of the out of sight cost of being there. We are looking at $80,000 to 100,000 a year as cost of being there. An average for a nursing home stay is 4-6 years. Figured at the mean that is a payout of $450,000 cash! Payment is the joint obligation of a husband and wife when one of them goes in. They pay until they have paid down to Federally Defined Poverty Level, after which Medicaid steps in, that is if it is still funded and accepted by the state. The pay-down level is not enough for the spouse on the outside to continue paying the monthly-yearly budget while the spouse is in the home and after the spouse dies. It quickly bankrupts the spouse

Why do we accept the “Home” as our ultimate stop? Because that is what everyone else does.

We are like the Eloi the companion race with the Morlock, existing far in our future as described by H.G.Wells in his classic The Time Machine:

Morlocks are a fictional species created by H. G. Wells for his 1895 novel, The Time Machine. They dwell underground in the English countryside of 802,701 AD in a troglodyte civilization, maintaining ancient machines that they may or may not remember how to build. Their only access to the surface world is through a series of well structures that dot the countryside of future England.

Morlocks are humanoid creatures, said to have descended from humans, but by the 8,028th century have evolved into a completely different species, said to be better suited to their subterranean habitat. They are described as "ape-like", with little or no clothing, large eyes and gray fur covering their bodies. As a result of living underground, they have little or no melanin to protect their skin, and so have become extremely sensitive to light.

The Morlocks' main source of food is the Eloi, another race descended from humans that lives above ground. The Morlocks treat the Eloi as cattle, and the Eloi do not resist being captured.

In the story the Eloi, fully sentient, looking more like humans then the Morlock, accept their ultimate purpose is to be feed cattle for the Morlock. We are Eloi when it comes to Nursing Homes. And oh yes there are the Morlocks today feeding on us as if we too were cattle.

Health Care, Nursing Home Care, Public and Professional Alzheimer’s Support, the Insurance Industry, the Pharmaceutical Industry, all direct or indirect “For Profit” undertakings are clipping their profit coupons living off of our misfortune. We must find a way to take this franchise away from Wall Street, away from the bought and paid for people in Government making it possible for the Wall Street, Banking and the Global Corporation Network for them to plunder us. They should not be cashing in on us as they are.

It is in the fallacy of needing the “Home” absolutely that we fall prey to this bold national, international deceit.

It is in this that the posted article has merit. Nonetheless the article accepts the high cost of home care when it states:

If you have the resources–family or financial–to receive care in your home or in more independent housing, you will virtually always choose that option and stay where you are…

The nursing home is a congregate setting for many people’s care. But that is not an excuse to medicalize life for our elders. If anything, the pooling of clinical resources in one place (as opposed to traveling home health workers) should make it easier to provide treatment that does not interfere with life. It is only our chosen system for providing that treatment that turns things upside down.

What I will attempt in the next essays I post is discuss how we can find economy in cost of care, keep it outside of today’s form of institutionalization, and provide care commensurate with what we determine is needed and in circumstances that preserve a quality of life for us.

I have been blessed by my higher power with sufficient cognizance remaining to write about this need and its issues. I have the advantage of the inside track; yes I got it, diagnosed with atypical AD more than five years ago. Currently my wife and I can afford no other alternative than the “Home.” That too will ultimately break us financially.

Prequel to Dementia Gap

The last five posts have been about the current impossible position those of us affected by Alzheimer’s Disease (AD) have found ourselves in. These five posts are the following:

·        Can things change in Alzheimer’s Disease Care?

·        Where To Go? What To Do? This is Not News, But Every Time I See It I Question: WHY NOT, Why Shouldn’t I?

·        Please! Please, Shoot Me ‘Til I’m Really Dead

·        SEA CHANGE! Are we Ready? Part 1

·        SEA CHANGE! Are we Ready? Part 2

 

These five posts immediately precede this post in inverse order.

This post, the subsequent five, and those which will follow and be identified as such, are intended as a series dealing with the current state of Dementia World. The impending catastrophe produced by the conjunction of unreasonable Cost of Care, exponential increase in numbers with Dementia, Government funds running out, will all come together to produce a Sea Change for society and for those of us affected by this disease.

Unless something is done, it will not bode well for us. Catastrophe is the best word to describe it.

At the core of the current state is a widespread public ignorance about Dementia. Added to that is the misconstruction by the medical and the health care profession. This is the saddest part.

Dr Alois Alzheimer, who named the disease in 1902 described treatment in the following way:

There is nothing we can do for them but keep them safe and when that is no longer possible institutionalize them for their own safety

The thinking of the majority of the medical profession and more of the professional support community has not changed since 1902.

This paradox is manifested in the Stereotype of what Dementia including AD is throughout the public and professions. Unless you are the same or worse than the guy standing trapped in the corner drooling as he is trying to find his way out, you are determined not to have the disease.

Too often we who remain functional, which does occur in the earlier stages of the disease, “You just can’t have it. You are just too normal!” If a doctor has an inkling that it might be Dementia he/she is slow to make that diagnosis because of this stereotype that accompanies such a diagnosis.

This stereotype is at the head end of the misunderstanding of what Dementia is in any form. It is the first cause of so many of us not getting the attention of what is needed to prolong our functionality and have a quality of life before we must be institutionalized because we are actually unable to care for ourselves.

Considering this I wrote the intro and the ditty about: THE SHOOT OUT AT DEMENTIA GAP! which immediately follows this post, separated from this for the sole purpose of making reading easier and entitled: Dementia Diary, a Subjunct of My Alzheimer’s Afterthoughts

 The purpose of this series is to try and focus the public view of what our disease is, what it is doing to us and the rest of everyone, and what is needed to avert the calamity  sure to occur if no action is taken.

Dementia Diary, a Subjunct of My Alzheimer’s Afterthoughts

INTRODUCTION

Having Alzheimer’s Disease (AD) which I prefer to call Dementia, I have found friends within our Dementia’s sphere who are much like me. They are functional appear pretty normal and we enjoy the hell out of each other’s company. We started meeting to do things and have lunch together trying to do so twice a month. We see each other in many Dementia related activities. We have come to enjoy each other’s company immensely.

We agree that with each other we don’t have to try and keep up like we do with Normals. Being limited but functional we hate to be the rain on anyone’s parade because we are just a little bit slow to get things. We do not want to hold anything up because of us. We hate it when someone makes special allowance for us in a patronizing way.

Enjoying one another’s company, Jerry, one of our number, named us the 4 Amigos. It is a name that took. Originally we were three and our name began as the 3 Amigos of Mexican Lore and Movie Fame. I did a picture then for our logo using the mugs of the then three, Jerry, Earl and me:

And then we were four and thus a new logo, the third of the four pictures below.

With the logo established showing we were Gunslingers I conceived the little illustrated story that appears below.

What do Gunslingers do? They protect the good people and shoot the bad people. We are all part of that alternate universe known as Dementia World. One of the worst effects of having this disease is the stereotype everyone has of us. According to the stereotype so many have, we are believed to be not in any way normal, why, we are like that guy in the corner drooling, caught there, unable to get out of the corner in which he is stuck. He looks like this:

People characterizing us as this slander us, slurring us in the worst way; the effect of it which is horrible. It isolates and separates us from the mainstream. Quickly we find ourselves abandoned by friends and many in our families. We become pariahs to be avoided.  

Little is it known what we are, who we are, and certainly that we are not what our classification by stereotyping says we are. So classified it is assumed there is nothing that can be done for us so best left in a safe place and taken to the institution when we are no longer able to be alone.

This stereotyping, a mistaken view is one of the more harmful things we must contend with. Accordingly I sent the Gunslingers, the 4 AMIGOS, on a quest to Dementia Gap. They came to gun down Old Mr. Stereotype’s boy named “A.D.”

THE SHOOT OUT AT DEMENTIA GAP!

All was well in Dementia Gap until A.D. Rode in 
with havoc on his mind. Little did the folks of Dementia Gap know what A.D. could do!

It is not as if A.D. Stereotype Jr. looked dangerous or made a threat.

Fact is he stood there in the corner drooling, trapped by the corner’s two sides, unable to find his way around them:

But damage he could do and damage he did do!

It started with one and then it spread. 
Before you knew it we all had dread: 

WOULD WE BE NEXT TO GET LIKE A. D.?

We asked around and found

The fearsome four who new AD well.

They were known to keep A.D. from doing his dirty deeds!

They were called, and they said, they’d be there to show A.D. just who’s boss.

so they came 
“The 4 Amigos!”

as the story’s told,

one dusky day came those 4 so bold

and gunned down A.D.

so he would have no more hold!

SEA CHANGE! Are we Ready? Part 2

In my last blog post I finished with this paragraph:

I state the foregoing for the purpose of setting out how some moral precepts become part of us with little thought on our part and blind acceptance of religious prohibitions seemingly established under guise of the hierarchy’s superior knowledge of right and wrong, when in fact they are all control measures by the hierarchy attempting to keep its sheep dumb, blind and in control.


In this blog I continue the discussion under the same title SEA CHANGE! Are we Ready? Part 2

That said, sit back and reason, is Euthanasia so dangerous a concept as to require laws prohibiting it? I think not. I think it is a personal decision left to the morally sound who are capable of good judgment and reasoning about it.

Certainly the shrill admonition, “State Killing” is likely to be raised along with the argument that it is but a step on the path that leads to the killing of all “Inconvenients” by the state. I suspect the same admonitions were used against Capital Punishment, killing the enemy in a theater of war, or an agent eliminating an enemy of state as part of his legally authorized espionage work.

Right now, with the exception of Abortion, which is rife with political control reasons more than morality, we get along just fine with the way things are at this time when it comes to the “right to kill!”

The older Eskimo chooses the time to step out onto the ice flow and go on into oblivion, as does the historical Native American who goes off into the woods when he/she is no longer any good to the tribe or themselves. Is this morally repugnant?

I think not!

We need to take a serious look at least at Doctor Assisted Suicide, which has worked in other countries and is working in this country. There are safeguards with the way it is allowed to be administered which not only protect the person the subject of the assist, they also protect the society at large from the allowance being carried too far.

We should get about it before the ignorant fringe are induced by politicians and the media to demand that the cost wasting dementia sufferers be removed, terminated, eliminated as let them poor folks starve in the streets.

This unfortunately is where this economic crisis will lead if we do nothing to avert it. If I take the hemlock under proper conditions from the proper doctor I do not think the lord will strike me dead even though the hemlock will. Like Onan, most of us spill our seed on the rock quite a bit and we are still walking around. It took time but the public as an opinion making body finally got around to examining this and reversing the moral prohibition.

In my first essay on this subject Where To Go? What To Do? This is Not News, But Every Time I See It, I Question: WHY NOT, Why Shouldn’t I? I discussed the suicide of a Tibetan Nun which the author of the article stated:

"This is not suicide, this is sacrifice in order to draw the world's attention."

With the exception of this I have not seen any other instance where taking your own life is permitted in any current religious discipline. Should this under the circumstances of the burgeoning numbers of Dementia keep us from reasoning to the point that one can do suicide under reasonable circumstances?

Will you go to hell if you shoot your partner who is in pain from a wound and there is no hope of getting medical help? The wound is sufficiently severe to make death inevitable. Is it more moral to stand by watching your partner writhe in pain while at the same time your supply of food and water is not sufficient to sustain you if you stay and wait until our partner dies! Do we do the moral thing and not shoot him dead but walk off out of the desert you are in while you can yet sustain your own life? Who could stand by and watch the man suffer to death, and/or walk away and let him die alone or let the wolves or coyotes hurry it along?

In the essay I See It, I Question: WHY NOT?, I discussed my consulting my Rabbi. Her reasoning was great suggesting I should not consider Euthanasia. My question to her was predicated on: Is it not the greater good to have a doctor assisted suicide when I am unable to care for myself, or be cared for outside of institutionalization, assuming my brain has pretty much quit thinking by that time. My reasons were the high cost of care, the responsibility my wife and I both had to pay for it until our worth was spent down to the government defined poverty level. This would not leave my wife enough to live on while I am institutionalized and after I croak.

She reiterated with a question (very Rabbinical as such) would you deny your wife the opportunity of caring for you? At first I agreed I could not. Then looking at the above paragraph of the two guys in the desert, well, doesn’t my original thought that produced the question for my Rabbi make better sense? I believe it does!

It is not a matter of holding on to material goods that prompted my question. It was rather my concern with the suffering my wife would undergo without the wherewithal to take care of herself or maintain a roof over her head.

Of course she could do with a homeless shelter. Just ask a dear friend of mine who reads this blog what it is like having to do this after her partner dies and she spent all her money on caring for the partner not leaving enough to take care of herself.

What is moral here? Either we must change the system so it can care for us as long as we live, even if in a vegetable state, or we change our moral thinking to a more practical bent and legislate some form of Euthanasia, the safest of which appears to be the style of Doctor Assisted Suicide now legal in Oregon.

There are two burning reasons to consider this. Look at the options of what will happen that I cited in the preceding post SEA CHANGE! Are we Ready? Part 1. If we choose to continue the status quo, namely feverishly raising money to find a cure, depending on finding the cure before harm is done, if we do that and make the find that cures Dementia than the unaffected society gets off free and get payment for their contribution to the raise funds lottery.

Those of us afflicted and our caregivers and family affected face a different story. We pay the high prices and ultimately live off Medicaid if that is even left to benefit us.

So, what if a cure is not found? What if the dementia continues to happen at the same rate to the same aging population? Add to this population the increase in number fed by the baby boomers turning 65, entering the age of High Risk of getting Dementia, the increase which will continue occurring over the next 18 years.

Without a cure, with the problems society faces now growing worse, costing more, what is going to happen. Add your own options to the ones I cited in SEA CHANGE! Are we Ready? Part 1.

Unless we change the system as suggested in options 4 and 5 or do so in some other way that benefits us and not the profit takers, we are facing Euthanasia by default. Namely, we are letting our early suffering to death, or the state ordering termination on whatever terms the majority sets be our ultimate result.

The system under which our society is currently operating will not be able to handle the cost which is soon to happen by reason of the epidemic of Dementia now building. Absolute doing of nothing will place all of us in the streets with nothing to sustain us ultimately dying as a result in front of everyone.

The public will be incapable to handle witnessing this in front of their very noses. We will see a Sea Change on the issue of whether or not the state is entitled to terminate life when a person is diagnosed with dementia or at some point following diagnosis.

The same shrill voices that scream “Death Panels” will change the tune to “Mercy Kill Them Now!”

We will get death sentences by the default in our failure to take action now.

We must find a way out or take protective steps to define safe suicide for us at a time that makes sense in the course of this disease.

A Sea Change is coming. It is up to our action or non-action to formulate what that Sea Change will be!