Painting in Twilight: An Artist's Escape from Alzheimer's

This is beyond beautiful, watch it. You will be glad you did.

Alzheimer's Drugs in Trial

This article appearing in the Tangled Neuron captures the reality of the progress being made in Finding the Cure. It is so unfortunate that it is taking so long, at the same time, it took so long to get a handle on Aids, and we have learned much about cancer that is enormously helpful too. This is true in spite of the fact that we have not found the medication able to obliterate it able to cure it. The same is true of heart disease the other of the four loss leaders ravaging humanity.

This means we hang tight and continue the research, continue to search and continue raising the funds to do so.

It also double underlines the short term need, long on its own, to care for those of us with it. I continually ask:

Interesting, Very Interesting, about finding the cure in five or ten years; God speed your search! And, What Are You Doing For Me Today Or For The Next 9 Years As I Succumb To The Ravages Of This Disease Before You Find The Cure?

The answer to this question is only now seeing the light of day as programs are finally being produced to care, comfort and treat us who have it, remain functional and wish to continue so. This is a problem equal in kind to the catastrophe of getting the disease. If we do not have help in prolonging our functionality we quickly slide the slippery slope to oblivion that is but the halfway point of our disease.

Alzheimer's Drugs in Trial, Part 1

One of my friends diagnosed with Alzheimer’s recently talked with his counselor about how depressing his cognitive problems are.  He is losing hope that new Alzheimer’s drugs will be available in time to help him.  Based on media reports, his counselor said she thought he was too pessimistic, and that new treatments were around the corner.  

Should patients and families really expect new drugs to be available soon?

Last year, Pharmaceutical Researchers and Manufacturers of America (PhRMA) issued a report called Medicines in Development for Alzheimer’s Disease.   Citing industry sources and the Adis R&D Insight database, the document lists 98 Alzheimer’s medicines in clinical trials.   The document is meant as a status report, says Ed Belkin, VP of Communications and Public Affairs for PhRMA, and is not meant to advocate for any particular action.  “Patient advocacy groups are hungry to know what’s in the pipeline,” he says.  “This is a way to catalog the hefty lift being done inside America’s biopharmaceutical companies.”

The recent wave of failures of Alzheimer’s drugs in trial has heightened the sense that pharmaceutical company investment in this area is risky, reducing funding and causing companies and individuals to consider leaving the field.  So showing a little love for researchers in the pharmaceutical industry is a good thing.  “We’ve tried to convey that research scientists who come to work every day in America’s biopharmaceutical companies are committed to finding a cure for Alzheimer’s,” says Mr. Belkin.

Of the 98 drugs in the PhRMA report, six are listed as being inPhase III clinical trials.  However, three of those drugs had already failed in trials by the time the report was published.   The remaining three are anti-amyloid treatments, and one of them (bapineuzumab) is being tested only on people without theAPOE4 genetic variation.  

If those Phase III trials are successful, and regulatory bodies like the U.S. Food and Drug Administration approve the drugs, they could conceivably be on the market in many countries in less than five years. 

Overall, potential treatments in Phase III have an estimated 47% chance of getting to market, which would mean that it’s likely that at least one of these three drugs will be available soon.  That estimate is for past decades and all types of drugs, though, and may not be valid for potential Alzheimer’s drugs being tested now.  If the amyloid hypothesis is flawed, as some researchers believe, the chances of success for the drugs in Phase III trials could be much lower.

What about the 38 potential treatments listed in the PhRMA report as being in Phase II trials?  With an average of 44% of drugs in Phase II transitioning to Phase III trials, and applying the 47% chance of Phase III drugs getting to market, perhaps eight of these 38 potential treatments could eventually be available.   But it would certainly be more than five years before any of these drugs now in Phase II were on the market.

So, if past experience with developing all types of drugs were a guide, then Alzheimer’s patients and families might expect to see one new treatment on the market within five years, and a handful within ten years.   Developing neurological drugs is more difficult and takes longer than other types of drugs, though.  The uncertainty about the causes of Alzheimer’s adds to the difficulty.   It’s too pessimistic to predict current trials will end in failure – we need to wait and see what the data says.  But I think it’s too optimistic to plan your life around new treatments being available anytime soon.

Let’s Hear It Now! Three Rousing Cheers for Mary Kay Baum!!!

I am pleased to tell you I know Mary Kay Baum. We have corresponded about Alzheimer’s Disease (AD), both of ours; we have discussed survivorship, both of us about both of our Survival. 

Read a comment in Ahlzheimer’s Reading Room made by Mary Kay entitled: Generation Alzheimer's Hope or Hopelessness?.  The comment is in response to Bob DeMarco’s comments of yesterday, that are entitled New Generation Alzheimer's Report Calls Alzheimer's Defining Disease of the Baby Boomers Read both by clicking on the title or by clicking on Archive to go there where I have posted both.

Mary Kay in this article says it like it is! I support her comments 100%. Thank you Bob DeMarco for printing Ms. Baum’s view. It matches what I said about Bobby Nails it on the Head yesterday.

This view of Mary Kay Baum is a little more defined and to the point than mine. Mary Kay notes there is nothing new in the news release of Alz.Assn nor is anything more proposed than Raising even more Money.

C’mon Already!

Do you Alzheimer’s Association exist for us, those of us affected and afflicted with AD, or are you in it for the money?

I hope you can raise sufficient funds to find the cure. But doesn’t that get the cart way ahead of horse. You seem to be giving little more than lip service to warning our communities and our country, to efforts to find Economy in Care and programs designed to avoid and forestall the time we need care

• How much concentration of effort is there about how we are not now positioned to combat the coming catastrophe soon to happen, or, what needs to be done to avoid it or ease its impact?

• There is so little being done about the Cost of Care escalating beyond all reason and our impotent indifference to be up in arms about that. The profit the Care Industry, the Pharmaceutical Industry and the Medical Health Insurance Industry are looting from us in their disingenuous ministration hiding their purpose of nothing other than more earnings continues unabated. Where does the Alzheimer’s Assn stand on this what are they doing to correct this?

• Why are they not doing more to propose and initiate services to help us survive in the face of the ravaging disease? Mary Kay Braun has survived. She is representative of a group consisting also of my friend Jay Smith, and others, who call themselves “The Survivors” because that is what they are doing. I like to count my self as one of them.

Each one of us will tell you we work very hard at prolonging our stay in Early Stage, in being functional and as self supportive as possible and it is working…

We need more help, more of us need more help, there is good to be done by giving that help, if only that was given equal attention which it is not. Economy of Care (which includes the simplest measures of care for those in Early Stage designed to keep them in Early Stage) should stand with Finding a Cure in everything that is done publicly about AD.

Wow! That Bobbie nailed it on the head again, and how…

Thank you Bob DeMarco. 

Look at Bob's article entitled Can Baby Boomers Dodge the Alzheimer's Bullet? Click on it to read it on Alzheimer's Reading Room or on Archive to read it there.

In my Blog I have been trying to carry this message. Bob gives the message far better than I can. That is why it is a MUST READ 

My purpose in giving the message has been my concern of how we handle this catastrophe as the potential of the calamity it currently has develops. Nothing says it better than call it the Silver Tsunami. It will hit us, engulf us and leave but strands of silvered hair in its wake, having taken all else.

The numbers not only escalate they increase exponentially. The cost will be overwhelming. We are altogether unprepared to deal with the calamity that this will be. Families cannot now afford to care, if they are willing, communities have not developed the means and infrastructure with which to do it. The government already strapped beyond its capacity and captured by a group that would curtail yet more government spending does not have a the capacity to step up to the plate.

The Alzheimer’s Association aptly lists the risk, the threat, warns of the overwhelming Cost of Care. Then with the warning validated they stress the imminent need to Finance Funds to Find the Cure.

As necessary as it is, as one currently pushing 4.5 years after diagnosis and 20-25 after onset, I continually ask the Als.Accoc folks this question:

Interesting, Very Interesting, And What Are You Doing For Me Today Or For The Next 9 Years As I Succumb To The Ravages Of This Disease Before You Find The Cure?

Is AD A Form Of Dementia, Is It A Disease, A Distinct Disorder Or Is It A Class?

Alzheimer’s Disease (AD) is it a form of dementia, is it a disease, a distinct disorder or is it a class of symptomatology similar in kind one to another?

I sure don’t know ask a Doctor. If your back with out an answer of some 60 or more of them after wearing yourself out asking the experts, consider this my existential view of it. It is based on my experience of  having been diagnosed with it some 4.5 years ago, having it in development for at least 20 years before that, and having my cognitions as well as my ability to read and write about it as I experience it remain fairly intact.

Caveat, I have AD, not the normal predominant memory loss variety of it but one that is classified by the experts as a-typical AD. It is emanates more from frontal brain lobe damage as hippocampus and rear lobe kind. It manifests itself more with substantial loss in executive functioning and multi tasking functions and a definite loss of in my capacity for visual perception. Picks, Lewy Body and other Frontal Lobe kinds have been ruled out.

The following is my view and my view alone. It makes sense to me; it might to you in answering the frustrating perplexity of “What the Hell Is It?”

Whether or not the evident dementia is aging, vascular insufficiency or the Buzzword Alzheimer’s Disease (AD) is not at all important. The treating and caring folks have such a need to classify illness. When they see dementia not a result of stroke, vascular insufficiency, trauma, tumor, all the kinds that are known to be caused by specific conditions and events, they have to put a name on it before they can treat it.

For this reason they have created groups or category of dementia which they call the Alzheimer’s Kind. Then they have given it a bad name to dramatize the need to raise money to find a cure.

AD is but a broad category of dementia, progressive in kind, and experienced more by older than younger people. It is not an illness; it is a class of disorder similar in nature to other like kind, but each one different than the other.

AD has as many kinds of it as people with it. How it differs from Dementia in general is the sum of the adjectives that describes it. Like all dementias AD results from a brain dysfunctioning often secondary to incipient damage happening to the brain.

It is produced by unknown causes, probably many different ones, each producing manifestation personal to the person having it and in the way that person is different from every other person. No one knows how it is caused, what it in fact consists of. After spending untold amounts in research they are no nearer a cure than was cancer in its early history the cure for which is yet to be discovered.

In Analogy AD in each individual case of it is as different, one from another, as each view seen with the twist of a kaleidoscope is different one right after another. Never is one view like another.

It has reached the realm of Buzz because of the stereotype enshrouding it. The classic   Metaphor of it being the guy standing in the corner, drooling, unable to find his way out of the corner entrapped in his frontal view of his world.

 
AD comes to that as mine will in time, I hope in a long time from now I am intent on doing all things necessary to maintain my quality of life as long I remain functional.
 
The beauty is this is doable. In my case it is doable because my wife was able to see it very early in my digression. I believed she was nagging me about my driving when in fact she was seeing enough difficulty that it caused her alarm. She went to the doctor, I thought the two were ganging up, I tried a driving simulation exam given by the Sister Kenny Institute in Minneapolis to prove them wrong. I flunked it not once but four times.

Later diagnosis and testing produced evident deficiency in my visual perceptual ability along with severe limitation in my Executive Planning and Multi-Tasking abilities. This was very consistent with the findings on the driving simulation test validating the reason for the failures I had with it.

Was this diagnosis easy; was it a piece of cake? No way! It was an abrupt paradigm shift in the lives of my wife and me. It also extended to my children, my grandchildren and my close friends. The beauty of it is being human we weathered it, we adjust, and we have the uncanny ability to make the best of things if we simply put a good positive attitude to it.

That is what AD has done for me. You can find it in my writing, in my blog, it became a gift. All was lost, nothing more to lose, I was still alive, was blessed with surviving cognitive ability in the face of the many functions lost or in which I was limited. I could still read and write and my attitude persisted to use that to make the best of it.

That has become my life: Writing about AD from the inside out. Giving witness to the fact that with early diagnosis a quality of life exists for the person diagnosed.

30 Years Carved, 30 Years Whittled Away, Back To The Same Place We Started 60 Years Ago.

Need more be said than what is said in the article appearing in the New Old Age Column of the New York Times on Thursday, January 27, 2011 entitled “Retirements Swallowed by Debt?” Click on the title to read it on my Archive

I often write about the economic wasteland produced in my Alzheimer’s Disease (AD) World. In this article the simple state of seniority produces its own inherent risks economically, more of the same wasteland.

Too many of us are not prepared for the shortages and the limited resources available to seniors not wage earners. This article demonstrates one of the pitfalls of not knowing better or being so depressed, not caring, hoping to die before the Sheriff arrives with the Bill of Particulars posting Debt in Default for Payment and putting you out in the street.

We work all of our lifetime looking for more than the bale of hay promised for the end of this lifetime. When the Hay Trough comes up empty we ask why?

The Pundits and Politicians, the Fiscal Conservatives chide, “You should have known better, you simply must suffer your own ignorance and bad judgment!” It is so difficult to hear this from the crowd with all the parachutes, the vested interests, yes the tax cut windfalls, produced by paid for politicians, without having just a little chagrin.

We had the Great Depression followed by the continuing need to sacrifice by WWII. Then came the end and started the age of affluence. A certain sadness seeps in when looking at the economic manipulation that came in to create and continue this.

First the financial reform and economic reconstruction that was produced as counter to the faults of the past by the New Deal. Then the war, which Hitler and Tojo produced, requiring response. It had a collateral benefit in the spending that spurred the economy out of the final throes of the Depression.

After that, post war, many good moves including the reconstruction of Europe and Japan, then that wonderful Eisenhower Administration which produced much good. It also produced the first dark clouds of economic manipulation by the Military-Industrial Complex about which Ike paid us lip service warning us about it, but truly set it into process in his administration.

For defense we built the Interstate and the DefenseSec sold more Buicks and Olds. Then the investors built a web around the Interstate of many McDonalds, Howard Johnson and Holiday Inns. The oil industry turned seriously political, feeding the gas guzzling machines pouring off the lines in Detroit and entering the age of obsolescence on the road.

This all stemmed from our defense policy. Along with that the sacred cows of intelligence and Cold War Defense started strategically with SAC.

This list is infinite over the next 30 years to the inception of Morning In America, when we saw the coffin nails pounded firmly into the New Deal. We witnessed the additional demise over the next 30 years of the regulation established to overcome the Depression and to avoid another.

Then we all experienced 2008. By then we are puzzled, paralyzed, how could this have happened again? I thought we buried the robber barons.

And now the seniors, who post war learned the safety of riding the crest and making hay while the profit increased endlessly, because it would never happen again, they would never let them get away with it as they did post civil war and into the first part of the 20^th Century.

Well they didn’t and they did, Eh!

****Save for later or read tomorrow****

Let us pound another coffin nail into the big picture we face in AD World. New Old Age Column of the New York Times on Thursday, January 28, 2011, carried an article entitled: “Strains for Hispanic Caregivers” It is also posted in my Archive, click on it to read it.

This relates to the first article posted in my archive and referred to at the start of this post.

It suggests a problem in development that is hitting Hispanics in our country, only because they are latest in getting here so it has taken time for them to develop into the American Way. Care for your family, however, do so at a distance.

In our SoundByte Society devoid of thoughtful reflection, patient pondering of issues, we are caught up in the business of “Too Much.” We want too much, we get too much, we spend endless effort holding on to too much, never ever thinking about What’s Enough?

This is said not to chastise but to observe. We do it because we are programmed that way. We do it because we are in a world of constancy, constant distraction, constant need for quick satiation, constant striving for more. We do it for us or for them (often The Family, The Wife or The Kids). We did it because we started it, it was the thing we were supposed to do, our play is in motion, if we falter or think the next move will pass us by, and then we are out of the game!

We want things to be better for them than it was for us. The only way to do that is sacrifice yourself in the effort to serve them, what more could be asked of us?

This is what produces the American Way non-stop through the middle years and into Seniordom. For some they can never stop, either they need to keep acquiring to pay their way or they can’t leave the action alone.

The result is the Hispanics join all the other ethnic groups on letting go of the reality of serving instead seeking out the American Way.

This does not include the time or the space, and especially the invasion of privacy occasioned by bringing the Old Folks into the sanctuary which we construe our homes to be. 

The Litany of Love Recited Daily in the AD World

A story that goes into the category I call the Litany of Love. It is the silent prayer recited by Caregivers daily, too busy to knee it down, their prayer is said in what they do, and do, and do…

Read it in the Alzheimer’s Reading Room by clicking on its title or on my Archive where I have posted it. It is entitled “Community of Care” aptly so because it is!

In this blog I have written often of the expression of love the manifestation of which is seen in Caretaking. It is a two way thing as well. The Caretaken, to the extent they have the capacity, give it back in same kind. That is certainly is in the core of my Community of Care. The love I feel receiving it and giving it is beyond anything experienced ever before in my 74 years of living.

Does this paint any kind of a picture? I believe it does and it this: Amidst this bramble bushed thorn patch known as Alzheimer’s Disease (AD) World a gift lies nestled but waiting for our taking. That gift is the temporal experience of loving the quality of which is ethereal, is god given and touches the gods right back.

Not everyone is blessed in this way. Those without residency in AD World, those whose capacity to love is not yet caught up with the wonder it has to offer, those who live an agenda less selfless surely miss out, but may learn it in the process.  I don’t know because it is not within my range of having been there, but I wonder to what degree this love compares with the other beautiful expression of it seen in Motherhood.

Pamela Kelley’s Essay speaks as few others do of what it is to Caretake. She expresses it eloquently, thoughtfully and without rancor for what isn’t. This is blessed. We in this world see too much of what isn’t. We see the denial of others, passive abandonment by others not caring enough, then out of embarrassment for their oversight, not caring at all.

We see the community, particularly the professional support community and government operating from the unwritten agenda of self interest and an arrogance of knowing better what is needed at the discount of those who in fact know, viz, the Caretaker and the Caretaken.

Pamela’s way is also selfless in the respect of doing what needs to be done without faulting the walking blind who cannot see it themselves. Care and Community are the bi-words that name the priority of care needed by us in the AD World.

So many practical reasons exist for it, particularly the community aspect of care, the loving contact with others that is not as free to us with the limitations imposed by our disease. Between the love of being cared for and the contact with community our time without the need of the prohibitively and confiscatory cost of being institutionalized is saved our family, our community and our country.

These needs do exist but most of all the communion of love that can be found in Caretaking and Caretaken has their branches reaching transcendentally into heaven.

That is the Litany of Love chanted by Pamela Kelley

It Is Time for Compassionate Care!

Two articles caught my attention in reading this morning. The first “Innovations Bring Depressed Elders Back From ‘Living Hell’ ” the second “Understanding Dementia” Click on either one to go to my Archive to read them.

Not necessarily similar to me they have a common theme. The need so sorely exists that we do more for people afflicted with Alzheimer’s Disease (AD) and dementia that is more than palliative care and less than therapy. I would like to call it Compassionate Care.

Palliative Care is intended to make a person comfortable with the difficulties that person suffers. It is intended as giving relief. Therapy is just what it says. Programs to train the person to overcome some of the limitation imposed by disease.

Compassionate Care falls between. The first article innovations talks about programs for ethnic groups, Blacks, Asians, Hispanic but applies to and for all seniors of whatever race or circumstance.

Myriad losses accompany aging. Friends, loved ones, independence, ability, abandonment, the litany of loss will not stop. As it builds the toll taken on the psyche of the senior increases in like measure.

Compassionate Care calls for both recognizing the factors of loss and creating programs to circumvent their negative affect on a segment of our culture at high risk and limited means and ability with which to cope. Not to be trite, it is a crying shame our failure to really address this has no excuse.

The reasons are considered in the second article Understanding Dementia. So many of the causes of dementia attack through the back door, through the windows, rarely straight on through the front door. We don’t see it until after it has taken its due.

The losses experienced is aging are a more evident factor. Bad health, indolence of inactivity, failure to exercise Best Practice, namely, Eat Right, Exercise Daily, and Become Involved in Stimulating Intellectual, Social and Creative Activity. Add to that the admonition take your medication.

One that I have suspected to be a major cause of mine is stress. My life has been a stream of stress, punctuated by periods of sensibility. Whether the stress arose from problems emanating from a dysfunctional family and an equally dysfunctional marriage, active alcoholism for 20 years, followed by many more years of obsessive compulsive success oriented workaholism, all of this contributed. Add to that ten years practice in an impossible tutelage by my father, another twenty years building a super successful practice of law to compensate for the first ten years, then loss of that practice because of the severely dysfunctional way in which I ran it, this too was in the recipe. Then couple that to a divorce in mid stream,

This was enough. In fact it was more than sufficient to tarnish a life lived on the edge throughout it.

We can spend all kinds of time asking why we got this way. We can take all the necessary steps to research for and find a cure. We cannot excuse the fact that we do little for those who are afflicted by our disease to ease the way, teach coping skills and install programs to improve the quality of life that is so severely destroyed by the disease.

This is simple enough to do, wonderful in the results it provides, and nice for those of us with the disease as we plod our way through the stages of it.

Quality of life I believe is the single most efficient cause of putting us on the slippery slope to the institutional palliative care that is our ultimate end. We have no reason to hurry there unless our quality of life is so bad the mindless time of this disease, and/or our death is preferable.

It is for this I plead the public, “GIVE US A HAND!” Ask us “WHAT CAN WE DO?”

With a Song in my Heart I have Death in my Sight!

Sounds crazy, the title does, eh? Crazier yet is what we as a culture do with an absolute part of our lives, that is, with its ending. Birth and death with the course of life in between, these are really the only three absolutes to doing this gig.

About birth we personally know little. We are but potential entering the realm of possibility. The life that follows is what we do with the potential. That can be very interesting or vexing, usually a bit of both. The end of it, we hardly deal with it, we are afraid of it, we live in a culture that sidesteps it as though it was the proverbial “Elephant in the Living Room.”

This is such a mistake. It is in death we celebrate our life’s culmination. This is the time of harvest. It is the time for us to sum up. It is in this process we can make sense out of so much of what has been in this time spent between the portals of birth and death.

We not only should we must change our cultural take on the last of what our lives are. What a waste it is if we fail to do so.

It is for this reason that the essay With Poem, Broaching the Topic of Death has so much importance to us. Read it by clicking on the title to go to my Archive to read it.

… I explained to an old Navajo patient of mine that we sometimes have to shock the heart to get it started, he said, ‘Why would anybody do a crazy thing like that?’ 

Would you ever hear that said in our Culture? No, death is to be avoided at all costs. We give lip service to afterlife but from our practice relating to death it seems we are rigidly in denial of it. Maybe the prospect of hell leads us to avoid thoughts of heaven. Who knows? There is something that keeps us away from that final portal.

One of the more evident reasons is the degrees to which we go to acquire, to be something more in life than we are, trying always to hold on to what we have, whether it be in material things or status in the eyes of others.

Many of us are blessed, particularly in our senior years, with the ability to step aside and look for anything else we might have missed.

It is when we are given this gift that we can look at death in a far different way. It has been earned, we are deserving of it, our sentence to time and material place has been served, it is time for release, time to go back to what we were and are to continue being.

                                                                                                                                       

I could stop here having said all that needs to be said. The Lawyer in me, a shadow from my past life, sees more that could be said so it will be said.

Life has been so very precious in the potential we have dealt with. I don’t believe it a measure of how well we did with it, but rather that we did and kept growing from it that really counts.

The continuous push and pull we strive at so assiduously, wanting this, getting that, wish we were otherwise, is a constant urge in us incapable of being requited, until we come to a realization of “It’s Enough Already!”

Mine finally came over me with the diagnosis of Alzheimer’s Diseases (AD). I had been orbiting it some time, but never fully planned a landing. When AD came into my world and then became my world, then I landed.

It was simple enough, I lost everything, nothing more to lose, might just as well make the best of what it is left and get on with that. This sound trite in the saying of it, but so very real in the full impact of it. Like a hammer slamming me into the ground, deep as I could go, I broke through the ceiling of another world where I was completely free. I was free simply to be. And what a delivery, a transformation, it came to be.

Finally I had no need, less urge to look back or forward. There was nothing there for me. All I had, and certainly all I needed was to deal with my absolute present. In my circumstance that present is. It is, I am, the sum total of the continuing experience of what I had become in the time I occupied this sphere. Without having to look either direction, before or afterwards, I was free to look about. This is the time for me to try to understand what it is that lies in me.

What a gift this curse they call AD. I do have a next step. That step is in its own time. It is coming, with AD by slow inches, but certainly coming. When it does I am ready. I have the sense I have paid my dues, I have applied my potential to the possibilities I was given and have a product with which I am pleased the result of it.

I can’t measure that product; can’t weigh the goodness or the badness of it. I know I have no regrets about it nor do I see I had much to do with making my way through it. It followed its own predesigned course in spite of me. Had it been my way I might feel differently, instead, I believe it is as if the god’s did it their way.

For that I thank them, being full with life, I am ready to leave it. Therefore with a song in my heart I put blessed death in my sight.

DELUSION AND DENIAL HAVE SO MUCH MORE TO OFFER THAN ACCEPTANCE OF SOMETHING YOU WOULD RATHER NOT ACKNOWLEDGE

Alcoholism is front and center, first, in the awards ceremony for denial.

Alzheimer’s Disease (AD), its cousin in waiting is running a close second.

There is so much denial of AD about, it is hard to identify. It comes in many shades with more nuances. It often starts in delusion. Delusion is denials partner keeping it alive. Alcoholism classifies denial a part of the disease. That doesn’t seem to exist with AD. AD produces its own version from inside and out of the people affected by it.

“I do not want to have the disease therefore I don’t!” This is the simplest act of denial.

“I don’t want to know, nor do I want to find out. I would just as soon wait until it is so evident it is undeniable.” These are brave but foolish wishes. It does not go away, keeps coming, and the worse it gets the harder it is to cope with it.

Early detection makes sense in the multitude of positive affects available over the course of the disease. Treatment, medication, socialization, exercise, intellectual and creative stimulation, coping skills, positive attitude head a very long list available to the person afflicted with AD.

Their net effect is prolonging the person afflicted in the Early Stages, able to function, able to avoid institutionalization, saving family, community and country the cost of it. That just starts the list. The biggest and first item on the list is Quality of Life.

Delude yourself as much as you will, deny the truth of it, the introduction of its possibility being a substantial factor in triggering denial, will continue as a cloud over you. That cloud is known as: “Waiting for the other shoe to drop!”

Given, with the support of the community and the health care system, buttressed by the stereotypes of the disease, this can insulate the delusion and denial into an honest to goodness comfortable reality.

Assuming it does, great for you, but for one caveat. Look at it as rolling the dice. A period of time of blissful ignorance wagered against the opportunity to slow the deterioration and garner a decent quality of life until the deterioration no longer allows that. The odds do not favor betting on denial. You are the goat; you deny at your expense.

There is of course so much personal, family, community, public and professional support available to re-enforce any decision to walk around the metaphoric elephant it your living room.

This reinforcement starts with the stereotype our world has of a person with AD. The best view is the guy standing in the corner, drooling, unable to find his way out of the two walls blocking his frontal view. The balance of the stereotyping is worse, all the way to lying catatonic in a warehouse ward for AD patients.

Given the descriptive view of what it is it is a simple step to deny it until that is no longer possible.

The enablers for the denial are on all sides of you. Family and friends most often are heard to say, it can’t be, you are so all together, you would never see it!

The community does a close second in the denial process. If you have it you are shunned, relegated to out of sight and out of mind. Let to be alone because there is nothing to be done for you but to keep you safe and warehouse you when you are no longer safe.

Until then having no clue as to what they can do, they do nothing. After that void runs long enough, embarrassment produces benign abandonment. During this time you sit and wait, for the phone to ring, for a visit, for some kind of communication from another. Your only future prospect is the “Home” the warehouse called nursing home or assisted living.

Recently I shared the podium with a Doctor practicing in the specialty of Senior Care. He told the group to which we were explaining AD, there is nothing the medical community can do for a person afflicted with AD but keep them safe. I got up an immediately refuted the statement.

This is typical. They do not get training in it and the medical community in its infinite arrogance doesn’t feel a need to do it. They know it already!

The professional support community surrounding AD is little better. Over concentrating on raising money, to “Find the Cure,” they involve themselves with little else. This is the worst kind of denial in its total disingenuous tone. It comes across as positive and does fulfill a real need we have, namely, to find a cure. But it is most damaging in that it excuses there non-action in all other programs of help.

This does not justify doing nothing for those of us who have it and are sorely in need of help. We are abandoned and remain so. So much can be done with programs that stem the progress of AD. Starting with medication, the Best Practices:

Eat Right, Exercise Daily, and Become Involved in Stimulating Intellectual, Social and Creative Activity.

These are tried and true. They work. Science is still arguing whether Best Practices have reached the level of Theory > Hypothesis > Principle. Those of us who do it, viz practice it, give witness to the fact it does work. Without it I would no longer be able to reason and write as I do pushing 5 years post diagnosis.

The public, particularly government adds to the abandonment of us. With the help of Government, especially Federal, Business and Finance has so streamlined, consolidated and homogenized services to make Home Care, Institutional Care, assisted living, day care, nursing home, prohibitively expensive if not confiscatory. More that 60% of Institutional Care in the U.S. is for profit.

The cost of health care remains on its fast track of increase. The National Health Care Bill recently adopted is under major frontal attack in Congress.

The middle class has its own pocket for finance to pay the cost, no other program. The poor have Medicaid soon to be exhausted by the burgeoning Silver Tsunami of Boomers reaching seniority. Between their escalating numbers and risk potential for AD by reason of age they potentially will break the Bank of Medicaid.

We need to act now on all fronts. The task is enormous. The only reason we have to justify inaction is Delusion and Denial coming around to kick us in our rears.

In support of my averment on reducing risk and prolonging Early Stage I am posting on my Archive and excellent article appearing in a Canadian publication The Record.Com  entitled Good health best way to reduce risk of Alzheimer’s Click on the title or on The Record to read it.

Finally Getting it Together at least In Part!

 

We might yet see the time come when we look at our resources, weigh need with cost and available infrastructure and seek the most economic and efficient solutions. This Article New Lives for ‘Dead’ Suburban Malls speaks of this. Read it on my Blog by clicking on it its title to go there.

It was in the New Old Age Column of the New York Times this week. They catch up to an idea I commented upon some months ago when featuring an article out of my home town newspaper entitled: A Bold but Sensible Proposal! Parts 1 and its continuation Part 2. Click on each to read the two Blog comments and click on Suburbs are showing their age the article from the Minneapolis StarTribune which was the basis for my comments.

It seems possibility is breaking open in the World of AD, making the possible probable. The approach is no longer monochrome. It is taking on the appearance of responsive innovation. For too long we have known one model dealing with AD. “Keep them Safe and Warehouse them when they are no longer safe at home.” So said a medical person where we shared the podium. “We can help the caretakers, not much can we do for the persons with it than keep them safe.”

Pushing five years post Dx what I have seen and railed about has been a compulsion to find the cure, build more care infrastructure, very little else. A cure hasn’t been found, the cost of infrastructure has priced itself to being prohibitive and confiscatory. Add to this the impending explosion of people with AD resulting from the Baby Boomer Bulge bursting into seniority, something more has become unassailable.

The idea proposed in the current article in the New York Times is a great alternative that offers one such sensible alternative. Looked at in the same light as has been considered in 

Part 2: When the Practice of Medicine Forgets it’s an Art and Tries to be a Science.

This post is in two parts, this is part 2, the first part was yesterday . It was prompted by article yesterday's issue of the New York Times in its New Old Age Column, entitled "F.D.A. Sees Promise in Alzheimer’s Imaging Drug"  I disagree with the superficiality of the article and its conclusions as not fitting the quality of the New York Times. Read it on my Blog Archive by clicking on the title of  it. 

I get more specific in this second part. This might seem diatribe it is not.  Medicine tries to streamline and come to quick efficient conclusions. It forgoes its bedside manner and turns too efficient at the expense of good medicine. 

I am concerned with this and the article in my blog triggered that concern in the source or the writer saw a quick conclusion from yet another test, and surmised it diagnostically answered everything. 

I medicine it is not that easy and to think it is wrong!

One of the many ways of homogenization in the field of medicine is the penchant to classify diseases that doctors work with. All things with children become Pediatric. All things with bone broken bones are Orthopedic. They rely on testing that has risen to the level of almost being nano science. This is particularly true with Gastroenterologists. If it can’t be demonstrated with a test result it isn’t!

Doctors also classify. They try to make categories and place things appropriately. The creation of specialty practice is one of these. Another is the Diagnostic and Statistical Manual of Mental Disorders, 4th. Edition. Better known as the DSM-IV. This places all mental illness into one book and adopts criteria that the clinician can use and rely on and must use when diagnosing a disorder that includes classifying it.

An interesting sidenote, this includes criteria for diagnosing Alzheimer’s Disease AD.  DSM-IV was relatively specific.

To find AD:

First, multiple cognitive deficits must be present, one of which must be memory impairment.

The Rest:

Aphasia …

Apraxia  …

Agnosia  …

Problems with executive functioning, ..

Alzheimer’s disease involves a gradual onset and progressive worsening of symptoms.

In order to receive a diagnosis of Alzheimer’s, the deficits can't be due to another medical condition,

The DSM (Diagnostic Statistical Manual of Mental Disorders) is in revision. When reading what is proposed one sees no end of confusion and much softening in the lines of what is and what isn’t. Memory loss is no longer a necessary part, it is a possibly.

Reading between the lines the categorizing experts are finding more difficulty in classifying the variety of symptoms that appear to be Alzheimer’s Disease (AD).

The problem with classifying is what do you do with something that does not fit in the category. Is it AD, if not what is it?

Another time consulting at Harvard I spent time with one of the top Neurologists specializing in Developmental Defects occurring during gestation of a fetus. I was handling a lawsuit in NY in which a child was diagnosed with a developmental defect resulting from exposure to a chemical manufactured by my client.

In an effort to understand criteria and classification, understand factors necessary to show this was caused by that, I asked around the medical grapevine for the top person on the East Coast on developmental disabilities.

Finding this person at Harvard, I learned there is no one developmental defect like another. There are as many different kinds of developmental defect as there are of children with them. No two are alike. Diagnostically the clinician attempts to determine the specific disorder treated similar to other disorders fitting within the general classification. If a group of similar kinds are found it is determined to be that kind in diagnosis.

He used an example of Downs Syndrome. It tends to be easy to identify, the eyes, the growth factors, they all look somewhat alike and are limited much the same. But, the fact is there is not one of them alike, they are all similar. The brain is so intricate that when it sustains damage to parts the many functions altered as a result can be made dysfunctional in as many different ways as minute parts of the brain in the many intricate areas of its whole that they manifest many different collages of symptoms.

The conclusions I drew of this are care and concern when a clinician backed by his/her discipline attempts to be too definite in fixing diagnosis. It is the same concern of the Librarian at Harvard. Medicine is art not science, you can’t be sure of anything.

It is with this background that I look somewhat askance at some of the conclusions of the writer or the source for her article in the New York Times on January 21 in the article entitled “F.D.A. Sees Promise in Alzheimer’s Imaging Drug” click on the title to go to my archive where I have posted it.

The article introduces a somewhat new PET Scan with a dye that can disclose the existence in the brain of plaques. It says plaques show the existence of AD. Often other testing procedures, scans, MRI, x-ray etc are unable to disclose plaques because they are so minute that they can not be discerned. Now they can state the writer or her source.

She goes on to say if the PET Scan shows no plaque there is no AD! That’s it!

If AD is that easy to rule in or rule out, wow! We have no problem.

Like developmental defects there are as many different kinds of AD as there are people with it. Many have memory loss, others it is not so bad. I am one of these. My memory is bad but far better than most and I am going on 5 years post Dx. My ability to read and write stay good, cognition remains to do this. But there are all other kinds of limitation 3 if not 4 of the diagnostic criteria in DSM-V.

Some of my peers are like me many are not. Ours is the same disease, or class, with many many variations. This article does such a disservice to our needs. It discounts more than it perceives.

If is a shame that the New York Times would allow such an article to be part of its quality publication.

When the Practice of Medicine Forgets it’s an Art and Tries to be a Science.

This post is in two parts, this is part 1, second to follow tomorrow. It was prompted by an article occurring in todays issue of the New York Times in its New Old Age Column, entitled "F.D.A. Sees Promise in Alzheimer’s Imaging Drug"  I disagree with the superficiality of the article and its conclusions as not fitting the quality of the New York Times. Read it on my Blog Archive by clicking on the title of  it. I get more specific in the second part, wanting to but introduce where I am going with what might seem diatribe.

I met and consulted with a retired Harvard Professor, a celebrated doctor and teacher, who in retirement was the librarian for the New England Journal of Medicine. After finishing the topic of our consultation he expounded on the intricacies of diagnostic testing in the many specialized practices of this the modern day medicine. It was all a part of a book he planned on writing about the decline of the practice of medicine in the late 20^th Century.

He told me and the small group of my cohorts consulting with him: Modern Medicine has lost its way. It deludes itself into believing it a science and not an art. It is all tubes with tests, dials that diagnose, all of them which are many, capture diagnosis within the closed orbit of their measurements. If it doesn’t measure – it isn’t!

Referring again to the book he planned to write to be entitled “The Rise and Fall of Modern Medicine. He would show Medicine, once a diagnostic and treating art, had become entranced by its bells and whistles.

Doctors no longer visit their patients; spend time with them beyond their three minute office visit. They have someone do a history than a list. The list names the possibilities that might cause the complaints from the history as given. Then a parallel list is made of the tests available to determine each possibility as cause or rule it out. This is performed part by the Doctor, part by staff, reviewed in the end by the Doctor.

After this the Doctor him/herself don’s the Plumber’s Hat, or Electronic Connectors or some other testing device the history suggests using in the conclusions drawn from it.

Plumbers and electronic technicians do the tests called for by a malfunction. If the tests disclose nothing they conclude there is nothing more to do. If the tests can’t disclose it, they surely can’t do better. So they move on accordingly.

They are not trained to analyze they are trained to test. They trust the tests. If they cannot find a cause there recommendation is to replace, retire the faulty apparatus and start over with a new one. ”It is far cheaper than paying my hourly rate to keep digging, and all I have is more tests that I can do.”

 

“Doctors have adopted this style,” so said the expounding librarian retired Doctor Professor at Harvard “to the ruination of good medical practice.” “They have all become plumbers and steam fitters!”

I had no argument for this. In fact I would add another factor in the practice of medicine that provides another set of nails for the coffin burying modern medicine,

Doctors are taught to rely on the differential diagnosis. It is a tool, not really a diagnostic procedure. It is taught in first year medical school, often named in the syllabus: “Diagnosis 101.” The rules of it are these:

1. Take the patients history; include all possible events that relate to the conditions bringing the patient to you.
2. Make a list of all possible causes the complaint might have
1. Based on the history,
2. Based on your own knowledge bank
3. Based on the literature relied on in your practice, namely, Text, Peer Reviewed Journals, etc, then,
3. Make a second list of the tests that can be administered to determine the cause.
1. Do that and include every test possible
2. If the tests fail to determine the cause,
3. Look at what the tests ruled out as cause of the complaints.
4. Then: Look at what has not been ruled out, one or more of these are it!

In the search for negatives to rule out the failure to rule out becomes ruling in. Diagnosis becomes based on the default of not ruling it out.  I was but a lawyer handling disease and disorder cases in representing a large international chemical company. To me this seemed incongruous. Proof of fact in the law was far more stringent, not reckless, not given to chance.

One of the questions asked on history was often: “Have you been recently exposed to any chemicals?” It is often that exposure that can’t be ruled out. Once the question is asked in a differential diagnosis and the exposure cannot be ruled out than by the requirements of medical practice the diagnostician has to consider it. In many cases the diagnostician does nothing more than name it as cause. He can by the rules of practice do that.

The next stop for the patient is his lawyer’s office with his doctor in tow to testify this chemical caused this disorder.

Although law has stringent rule for proof of fact, one can be worked over nicely. That is entry of a medical opinion into evidence. If a doctor will say that based on the rules of medical practice he can say it more likely than not that the chemical caused the disorder, nothing more, he can say it. When put into question he has the medical practice that supports the forming of a medical judgment in the exercise of a differential diagnosis

In the conduct of trial procedure no judge would allow such a method of bootstrap reasoning to prove the validity of an opinion, excepting this rule: If the doctor and his profession rely on this who are we to question their august authority.

This occurs as one of many concepts that reduce the quality of the practice of medicine. this permeates all of it. Being the good scientists they prefer to be they are on the lookout for any tool that might shortcut their way to the truth. They homogenize all they can, make it similar so similar rules can be applied. Don’t trust reason, trust the close application of the rule and thereby let the truth win out.

The Bread and Butter of Moving a Loved One to “The Home”

This is simple enough but worth review if and when faced with the task of making a move of a loved one to assisted living, to the nursing home, or for that matter out of their home and into yours.

Home is often seen as the last bastion of individuality. Alzheimer’s Disease AD is a long slow process of loss of the person of the one afflicted with it.

Of course the mind goes, then the body and then life itself. In between each course is further insult of many losses. It starts with the inability to do things, to get things done, to needing help, in short vulnerability which many not experienced at anytime since childhood.

We are not ready for this nor for the next things to come. It may be car keys, loss of the companionship of friends and family, these good meaning folks who do not know what to do, so they do nothing, then embarrassed by their procrastination, wander into a limbo of “You are not Included.”

The abandonment is devastating but it doesn’t end with that. If you were in charge of anything in your life it is not long that is taken over by the caretaker because you cannot be relied on to do it yourself! The worst part of this is the mixed feeling you have over this, relieved you no longer have to try devastated because it has to be.

This list continues. At some point you can no longer read; you are unable to follow TV programs or a ball game; Participating in conversations becomes difficult and embarrassing, any number of interfaces that make up the community of life become the non-face of AD life. You are alone, only your caretaker will put up with you.

Then you come to the point of not being able to live at home, the last sanctuary where you were distinctly you. That no longer becomes possible.

It is at this point, if not all points, a heavy dose of compassion should be the order of the day.

An article was run in the New Old Age Column of the New York Times entitled More on Moving that is simple but excellent in giving pointers to the loved ones about dealing with their frail one at the point of having to give up her/his home. The Article can be read by clicking on the title to go to my Archive to read it.

I draw special attention to the link to a very good booklet about moving that appears in the article and I repeat here for convenience. Click on a comprehensive booklet on easing the transition (PDF) to link to the WebSite from which you can download the booklet. It is worth getting, reading and then keeping for when you need it.

Beyond Vexing task: Piecing the AD jigsaw puzzle together

In this current incarnation, no longer what I was, now one afflicted with Alzheimer’s Disease (AD), never before have I seen a more confounding experience. Everything about it is perplexing, confounds, and defies normal expectations.

Bob Demarco ran a prescient essay suggesting one avenue the search for the key is taking. I find it interesting, more than that significant and could be on the money. The title of it is: Lower Biomarker Levels, Less Education Associated With Greater Cognitive Decline. Read it by clicking on the title and going to Alzheimer’s Reading Room or on Archive where I have posted it.

We can do so much ourselves, to keep us cognitively cooking. The Best Practices is first in line:, the self confidence that it makes a difference is its identical twin. Although the statistical analysis deals with specific measurable results, which it must as a statistical study, reading between its lines I see so much more.

Where is the chicken and the egg that produces the result concluded in the article, namely that.

Older adults without dementia and with lower levels in plasma of the biomarkers beta-amyloid…. had an increased rate of cognitive decline over a period of 9 years…. relationship was stronger among individuals with less education and lower levels of literacy

           

… Older adults with low reserve .. had an even greater association with beta-amyloid…  whereas those with high reserve had less association.

Between the lines, not statistically able to be proven I surmise, keep at the Best Practices, of them double up on Stimulating Social, Intellectual and Creative activities to increase that cognitive reserve.

I believe this corollary may yet prove to be right: Spend less mindless activity such as TV, avoid activity whose only value is distraction > Sit Com TV, Cable New creating its own emotional need, Ball Games, the too many other mindless activity with which out of laziness we tend to be attracted. Make your activity some form of interface with the mind included in that interface.

The greater correlation with cognitive reserve may be no more than the result of more education tends to make the mind more curious than that of the normal carrier.

This could be the egg that hatched the chicken.

How the Exercise of Control can Destroy the Quality of Life

 A vexing story recited in the case study, daughter of father, is sad beyond sad. Read about it in the New York Times New Old Age column having the title: Resisting Alzheimer’s  Click on it or on Archive to read it.

As one who suffers the unforgiving Alzheimer’s Disease (AD) my heart breaks for this poor man his daughter describes. Like Sisyphus he is trying to do the impossible, not seeing the inevitability and the futility in his efforts.

My key to success having this scourge is found in acceptance. I accept (AD) for what it is. It is devastating in all respects having no forgiveness as it rampages through our mind, our body, and our loved ones.

Accepting it was the key that worked for me. It may not work for anyone else. Nevertheless I looked at the futility of the writer’s father, who I will call Dr Bercaw, fighting the getting, then the having of AD all to the damage of his quality of life. It sounds as if from the hysteria of getting it he spent a lifetime before and after he had it in a state of compounded obsession using measures to avoid it.

Never did he give himself the opportunity to deal with it, or live with it once he got it.

Using my key I see it as providing me the gift of doing some good. I am a witness from inside this swirling vortex. I am experiencing the overwhelming invasion and subjugation it razes in me. In accepting it for what it is, am able to see the daylight in between.

Although lost in many ways limited in more, I have been gifted with the capacity yet to read, to understand, with the cognitive ability to write about it and give witness to it.

Dr Bercaw is nicely positioned to offer a fount of knowledge to all of us which would be so wonderful for us to receive. He has had the personal experience, viz, his dad, than himself. He has the training namely, practice of Neurology. He has what sounds like success in staving of many of the debilitating processes of AD.

He has had objective findings of AD.

 “M.R.I. that showed ‘atrophy consistent’ with Alzheimer’s disease”

This indicates he has it. The history recited by his daughter tells us the debilitating effects are limited if at all; he is quite functional. In my experience with the functional level of this disease, actual brain changes are slow to manifest themselves until later Early Stage or the Mid Stage of the disease.

This suggests Dr Bercaw has had success in his efforts to stave off much of the deterioration that accompanies AD. I would love to know, as would others, what regimens worked for him.

Dr Bercaw: At our age (I am 74) I have learned sharing is far more satisfying and fulfilling than denial and defense against the ravages of aging. Take a shot at if for our sakes. You might find it having a collateral benefit back. 

The Cost to Those Affected by Alzheimer’s Disease (AD)

Just as AD is a family disease the cost is a family cost. AD not only costs the one afflicted with it, it costs the family in losses and direct expense for care and for replacement of services no longer able to be provided by the person AD afflicted.

Between a husband and wife, between parents, the one not afflicted is affected in almost worse ways in combating loss to the family and carrying not only their individual role but adding to that is the need to pick up the role of the afflicted.

Illustrations of this are as follows:

• Lost Income
• Loss of job or diminished work capacity of person afflicted with AD
• Diminished work capability of spouse caused by time for care, need to take leave of work for care, or cost of supplying care while spouse works to support the family.

• Replacement of services in home and for family with diminished capability of one of the spouses to fulfill share of family tasks. Too numerous to list, it starts with obvious stuff, e.g. house keeping, cooking, cleaning, yard work, grocery shopping, etc.

• Direct Expense
• Medical and Drug expense not covered by insurance, subject to co-pay, deductibles, & gaps (e.g. the Medicare Prt D donut hole amounts to $4500.00 which is reached easily with accelerated cost of AD drugs, usually accompanied by high cost of other non generic drugs where generics not available)
• Care expense at home
• General home care
• Day care
• Recreational care
• Medical home care
• Cost of home health aids and prosthetic devices.
• Daily day care or night time care
• Assisted living care
• Nursing home care.

 On average in Twin Cities Metropolitan Area Assisted Living Care outside the home costs on average $6,000 a month which equal $72,000 annually.

• On average in Twin Cities Metropolitan Area Nursing Home Care costs on average $7,000 a month which equal $84,000 annually.
• On average in Twin Cities Metropolitan Area Care Costs on average $20 to 5
• $50.00 an hour (and higher if specialization required) 

The Facts about Alzheimer’s Disease in the Immediate Future

 The Impending Onslaught of Alzheimer’s Disease (AD)

            AD has the potential of epidemic proportion in the near term future of our Country. Unless we change our course radically and immediately it will break the economic back of all of us and destroy the economic solvency of our Country.

            Not hyperbole this is irrefutable fact. The threat of it is not now being dealt with. If our lack of attention continues AD will overwhelm us.

The Reasons are These:

1. Medicare is strapped financially and states are whittling more of it away. The electoral mandate expressed in the forthcoming legislative process will prune more of the social and health programs designed to aid to the needy, just as the legislation changing “Welfare as We Know it” some years ago virtually repealed welfare in this nation.
2. The Federal Deficit and the political majority mandated to “Starve the Beast” will prevent furtherance of programs to provide support for people affected by AD.
3. Social Security is likely to be curtailed further limiting ancillary support for family wage earners stricken from employment because of AD.
4. People suffering AD progress to the point they need care unable to care for themselves. This progresses into greater needs of care as the afflicted proceed through the disease.
5. Although many remain functional and able to self care in the Early Stages of AD, progressively they need Home Care, Day Care, then Assisted Living then Nursing Home care. Home Care if provided privately, families unable or incapable of providing it causes this challenge; as greater need of it grows the cost of it becomes more than either Assisted Living or Nursing Home Care.
6. If not paid by Medicaid the Cost of this Care including ancillary services is the individual responsibility of the individual needing it coupled with the joint responsibility of the spouse of that person.
7. The Cost of Care has escalated becoming confiscatory of individuals savings and severely strains government. This escalation seems out of control. Certainly in the current political climate it is unlikely to be subject to any control if attempted.
8. Unless the personal financial estate of spouses is less than the approximate sum of $103,000 they will not qualify for Government Assistance until they jointly relinquish or pay down their entire savings and property other than homestead to that amount. [i]
9. Although 103,000 is a large number, when offset against the normal family budget it will not last long. When the one afflicted starts receiving Medicaid, the spouse not financially assisted still has the obligation of paying the family budget to live.
10. When the family budget eats up the remaining estate the separate spouse has no other recourse. There is no welfare program to assist.
11. This makes the afflicted one the ward of the government and the spouse out in the street if unable to pay the cost of living in the homestead.
12. The number of people facing this predicament is growing and no real plans exist to assist.

********************

Before you can qualify for public assistance you must pay down what ever funds you and your spouse have. Paying down amounts to giving up or spending all there is. You spend down to that point where you own no more than just a little bit more than $100,000. Only then, after it is spent or given away, gone altogether, will any assistance be paid for your care

There are some other exceptions, the most important of which is if your spouse stays in the Homestead you can keep that free and clear up to 500,000 and some circumstance 1,000,000

            [i]  Further detail on qualifying for Government Assistance

·        You can buy some income stream only annuities, the cost and profit of which are at best dubious.

·        You can make transfers to your spouse so long and they qualify under some circumstances making them otherwise insulated from that allowed for qualification, which includes a set back time of 5 years on the transfer, and if owned exclusively by the spouse and owned appropriately. Then they might be exempt.

·        You and your spouse can divorce split your estate and stuff as much on the side of the healthier one of the two of you. A Court will likely give you problems with that even if you try to finesse it by a stipulated divorce.

·        There are other courses that can be followed such as establishing irrevocable trusts, simply giving the money to the kids, to others, but few other ways of avoiding paying out your assets.

This information is as I have been told. I am not an attorney licensed to practice law. I turned my license in to keep me fully retired. This is as I was told as I was seeking counsel on my Estate Plan. Do not rely on it, call your Attorney!