Choosing death can be like a 'birth,' advocates say

The article posted in my Archive today is from CNN. It deals with the issue of self-termination in far more practical manner than any others I have seen. Entitled Choosing death can be like a 'birth,' advocates say. Click on it to go there and read it.

Four paragraphs in it particularly caught my eye:

But this creates a double standard for the prevention of suicide, argues Stephen Drake, research analyst for the organization Not Dead Yet, a disability advocacy group that opposes physician-assisted suicide.

In his view, the Death with Dignity Act establishes a two-tiered system in which some people's suicides are more encouraged than others. It's the idea that young, healthy and nondisabled people should be prevented from dying, while the deaths of the old, ill and disabled should be facilitated, he said.

In order to use the law in Oregon, a patient must be over the age of 18 and have a diagnosis of a terminal illness with six months or less to live. The patient must be a resident of the state and capable of making and communicating his or her own health care decisions.

The patient must give an oral request to an attending physician twice, with at least 15 days in between. A consulting physician must also confirm the diagnosis and prognosis.

It's usually not possible for a person with dementia to use the law, because the patient must be able to make his or her own decisions

These statements as well as the entire article lead to much discussion. Where is it likely to go?

Only our future will tell us.

Two separate lines of discussion are Moral/Religious. The second is our constitutionally protected right to life.

To open the door to euthanasia leads to the government injecting forced euthanasia as a demographic consideration. To ease the public cost of medical care how quickly will seniors be ordered disposed of.

This part is scary. But equally scary is my lack of choice should I choose to do it.

This is an issue worth watching and seeing how it evolves.

THE SERVICE EXPECTED FROM ALZ.ASS’N BOTH OVERWHELMS AND UNDERWHELMS EXPECTATIONS!

If we were to grade the National Alzheimer’s Association (Alz.Ass’n) we should give them the following on their report card:

Fund Raising Commitment to AD Affected

A+ D-

The Card needs no further grading. The two entries show how controverted the dedication of Alz.Ass’n is. I would hazard saying this: On dealing with Alzheimer’s Disease (AD) other than financing a cure of it there is no further interest by them in AD or the people afflicted or affected by it. As for Dealing with Dementia, they have no interest whatsoever.

For dealing with programs to stem the tide of AD on its slippery slide to incompetence and dependence, or finding ways to reduce the Cost of Care, they are simply out to lunch.

On first forming 20 – 30 years ago, the NIH, their founding arm, was reported by a speaker who stated:   

There was no funding anywhere for research in AD. We at the National Health Institute (NIH) were not empowered to raise funds for research. Therefore we organized the Association to be the fund raising arm for us. They would raise money we would assign it to research.

The purpose of the Alz.Ass’n was funding for us. It still is.

It was that same NIH that announced a year ago:

… There is currently no evidence of even moderate scientific quality supporting the association of any modifiable factor—dietary supplement intake, use of prescription or non-prescription drugs, diet, exercise, and social engagement—with reduced risk of Alzheimer's disease

The speaker concluded that the only positive means of combating AD is to find a cure and eradicate it from the diseases to which we are susceptible.

In looking at this issue we are faced with a choice. It is this: Do we accept why Alz.Ass’n exists and acquiesce in its historically defined purpose? Or do we take it at what it says:

The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's ["Alzheimer's is a tragic epidemic that has no survivors. Not a single one," said Harry Johns, President and CEO of the Alzheimer's Association. 1-27-2011]

If they’re going to walk the walk and talk the talk, they must do just that. They cannot continue the shenanigans reported in two articles appearing in Alzheimer’s Reading Room entitled The Local Versus National Alzheimer's Presence & Dear Alzheimer's Association Leadership

Click on the titles to go to the reading room or on Archive to go there where they are posted.

Simply said, we should not allow Alz.Ass’n to have it both ways! If they are going to organize closely retain absolute control over their local units and their activity then they better make that clear when they have them for ask money for research. They need to be open and above board on who is asking, who is using and what precisely is the money being used for.

There has been a silent allowance that misconstrues what the local and national Alz.Ass’n is all about. Along with this using a statement that avers: “provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health” (Harry Johns supra) in the face of what little they do and what little they allow their local units to do this is not right!

A lawyer would tell the judge “This is tantamount to fraud!”     

THE RIGHT TO DIE A Recurrent Theme in Dementia World!

I write this following reading an article this week taken from New Old Age entitled: Deciding to Die, Then Shown the Door. I have posted it in my Archive. Click on the title to go there to read it.

Right to Die? Could this be an issue? How does it become an issue? Why define it as a right? Whose right is it?

Look at the phrase The Right to Die. It is not something new; it is a phrase representing an act that culturally is most familiar.

Most of us have a cultural knee jerk opinion that it is forbidden, if we do it we a playing at terrific risk doing an act that has absolute and ultimate consequences with no second chance. For this reason consideration of it rarely gets off the ground.

We do have empathy with and treat with understanding the archetypical Native American or Inuit who on getting old and losing usefulness for the clan go off into the wilderness to quietly die.

Judeo-Christian beliefs upon which so much of the West’s foundational philosophy depends prohibits suicide. In Christianity it is conflated with the belief that life is put a test to earn our redemption and therefore to end it would short circuit the test. In Judaism it is predicated on the principle that it is our primary duty to preserve life, ours heading that list.

I suspect the enforcement has much to do with the irremediable nature of the act which has no further recourse once performed. It almost seems we have built in to us an attitude that in life we still have atonement and forgiveness available to us. After it is all final.

The reasoning falls short when evaluated by comparing it to other acts we allow ourselves to do.

We can kill to protect ourselves or our family. We can kill in war. When certain absolute proscriptions we have come to accept are seen as entirely lacking in reason, than non- adherence to them is justified.

This has often happened in Catholicism in America. Rome took a non-negotiable stance opposing any kind of birth control. Many members left The Church, others simply chose to not follow the rule and face death without any change.

Divorce is similar proposition. I was raised Catholic and very carefully abided by the rules. Doing so produced a great deal of damage to me and to others because of me. In my young adulthood I was faced with what seemed an irresoluble issue. My young wife and I were looking to the birth of our third child in little more than three years of marriage.

We were tearing the hell out of our connubial relationship along the rest of our marital life. At the time there seemed to be some daylight in the Church this being the time of the afterglow of Vatican II. With deep religious consideration we decided to “Go on the Pill.” Not long after it became clear the Church would not budge, particularly when the afterglow burned out replaced by a glacial freeze.

Years later in mid-life my wife and I divorced. I could have easily had my marriage annulled which would have allowed me to remarry with the permission of the Church. It was explained annulment was achievable if you did not exercise consent to marry at the time you did. This was a personal decision you had to reach, but, you needed to have your decision approved by a panel of “Old Men of the Church!”

I had no question in my own circumstance that I knew my marriage was annullable. Considering that it became so because it never was, because I had not consented the decision to consider it annulled was easy. When I thought of carrying that to the panel I said “No Thank You.” I have been directed by too much of this Church’s bullshit in my life.

I did nothing until I decided to marry again. I was invited by our parish priest to get married in the Church. Shortly after this invitation this poor guy was called on the carpet by our Bishop for being Gay! He wrote an article in the diocesan newspaper, as requested to do so by the editorial staff, in which he revealed he was gay and a priest. He explained that his gayness, his homosexuality, was based and defined not on an act but on a choice. If he were to have sex it would be with another man, not a woman. He went on to state he was abstinent and would stay that way. He did not and would not violate his priestly vow to refrain from sex.

After a big protest in which I participated, the Bishop defrocked him and kicked him out of the diocese.

It was this straw that prompted me to leave the Church absolutely and entirely. I have not looked back since unless it has been out of relief to be free of this irrationality.

Why I detail that in this essay on the right to die is for this reason. I am now converted to Judaism; I practice that and follow Buddhism as the path of my spiritual life. I will die a Jew and hope to have some Buddhist ritual part of my farewell.

Am I worried that my denial of Catholicism will damn me to Hell? I rather expect Peter to shake my hand for having the strength to seek out the right way in the face of the pressure of belief instilled in me in my early spiritual formulation.

For this same reason I have decided for terminating my life at that time I am no longer competent. I see no value to me or to anyone else particularly my loved ones of prolonging my life incompetent.

At that time I am an intolerable burden. I know this will give my loving wife the opportunity to offer her pain up for the poor souls in Purgatory, she too having been a Catholic before converting to Judaism. But doing this I wonder if I would be failing in my duty to recognize the truly right thing to do because someone else has decided this is verboten.

I have expedited my decision by writing into my Health Care Declaration that my agent take the necessary steps to obtain a Doctor Assisted Suicide when I am no longer competent

Below I note two excerpts taken for Wikipedia discussion the right to die and the means of carrying that right out.    

The right to die is the ethical or institutional entitlement of the individual to commit suicide or to undergo voluntary euthanasia. Possession of this right is often understood to mean that a person with a terminal illness should be allowed to commit suicide orassisted suicide or to decline life-prolonging treatment, where a disease would otherwise prolong their suffering to an identical result. The question of who, if anyone, should be empowered to make these decisions is often central to debate.

The right to die is sometimes associated with the idea that one's body and one's life are one's own, to dispose of as one sees fit. However, a legitimate state interest in preventing irrational suicides is sometimes argued. Pilpel and Amsel write, "Contemporary proponents of ‘rational suicide’ or the ‘right to die’ usually demand by ‘rationality’ that the decision to kill oneself be both the autonomous choice of the agent (i.e., not due to the physician or the family pressuring them to ‘do the right thing’ and suicide) and a ‘best option under the circumstances’ choice desired by the stoicsor utilitarians, as well as other natural conditions such as the choice being stable, not an impulsive decision, not due to mental illness, achieved after due deliberation, etc."^[1]

Legal documents

Most often, the idea of the right to die is related to a person's wish that caregivers allow death—for example, by not providing life support or vital medication—under certain conditions when recovery is highly unlikely or impossible. It may also refer to issues regarding physician-assisted suicide. It may be called passive euthanasiain cases where the patient is unable to make decisions about treatment. Living wills and Do Not Resuscitateorders are legal instruments that make a patient's treatment decisions known ahead of time; allowing a patient to die based on such decisions is not considered to be euthanasia. Usually these patients have also made explicit their wish to receive only palliative care to reduce pain and suffering.

Although specialized legal instruments differ from place to place, there are two more that are important in this context. The Five Wishes document allows a person to state in advance the priorities and values they wish to have honored at the end of life. And the Medical Durable Power of Attorney (or MDPOA) designates an agent to make decisions in case of incapacity, and can be used to give written guidance regarding end of life decision making. The MDPOA is generally considered to be the most powerful of all such instruments. All others may require interpretation on the part of health care providers or even court-appointed guardians; the MDPOA takes the job of interpretation out of the hands of strangers and gives it to a person selected and trusted by the individual. (http://en.wikipedia.org/wiki/Right_to_die)

Basics in Dementia

When the hint is there, when it is wondered “Could this be It?” it helps to know what to do. The last thing on your mind is Dementia (DM), Alzheimer’s Disease (AD), Vascular Insufficiency, or the myriad other reasons that could be responsible. You are troubled because thing are a little bit awry.

In the early stage of AD, sometimes called pre-clinical, when problems are encountered excuses can be used as reasons of what it must be. Senior moments, aging, too busy, my plate is full to overflowing, stress, overwhelming distraction, this list can go on and on.

Too often these are excuses that allow us to say wait, let’s see if it lasts, see if it somehow defines itself, if it doesn't go away when the apparent reason for it does. Some do this putting it off; others call it fear of what it might be and do nothing.

In all cases of supposed reasons for doing nothing they add up to mistakes. They are mistakes that delay remedies that are otherwise available to treat and or to prolong the course of the Early Stage of the disease.

It is in the early stage that we can remain pretty functional, generally take care of ourselves with help from a caretaker who is normally our spouse or another family member. It is while at this level that our disease is the least burden to our love ones, namely those affected by the disease with which we are afflicted.

If we fail to act to impede it in its course, it can quickly progress to the point that nothing more can be done. This leaves us on the slippery slope of rapid degeneration to incompetency.

It is therefore most important that we pony up to reality. It can happen; it happened to me with no inkling that it was coming and had arrived.  Things had gone awry with me, but when my driving prompted my wife to take action, only that got me the attention that detected AD and put me on a program to prolong the Early Stage. This has worked for me. I thank God for my early diagnosis. I do in the face of giving up my car keys, giving away my bike, and accepting too many limitations in how I had done things.

I lost my treasured independence, entered the arena of dependence on others and at the outset felt very emasculated.

The first article I have posted today in my archive describes the various tests available to detect and diagnose this disease. It is a helpful tool with which to take the first step. The title of the article is: Alzheimer's Tests: Pros and Cons of the 6 Main Options. Click on it to go to the archive to read it.

I have posted a second article to day. Its title is: 8 Things to Do When You First Learn Your Loved One Has Alzheimer's. Click on this title to go there to read it.

The significance of this article is its practicality.

It lists the basics you will need to follow through on dealing with AD or any other form of dementia once diagnosed. This will be a time of adjustment and change, it invokes all of your capacity to cope, whether you are the afflicted or the caretaker affected. Roles, duties, everything about what you once were changes, often it is diametrically changed. There is no going back; it is painful, difficult and conflicting. To get through it you need to accept it, work with it and change with it.

You will need all the help you can get. This article gives you direction in that regard. 

NEED MORE BE SAID ABOUT THE GRIP OF POVERTY WITH NO PLACE TO GO?

The article appearing in the News today answers questions I have had and not seen much putting it all together. This article entitled: “Welfare Reform Leaving More In Poverty.” It comes as close to answering the question as I have seen. Click on the title to go to my Archive where I have posted it.

The answer is not news, it but validates what I have been saying will happen as we are swallowed by the coming “Silver Tsunami.” The Silver Tsunami soon to engulf is will be the exponential increase in numbers needing institutional care because of Dementia (DM). The Boomers hitting age 65 starting this year and continuing the next 18 years will literally Break the Bank.

When you get the disease as I have, you must look to your ultimate need for Professional Home Care, Assisted Living Care and Nursing Home Care. This takes on average 80-100 thousand a year. Unlike tuition in college, there is no time limit as to how long the need continues; It does ‘til you croak.

The payment of this is the obligation of spouses one of whom needs the service that charges this fee. Once the couple has paid out nearly all they have, then Medicaid will step in and take over. There is unfortunately no relief available for the other spouse. He/She must look to Welfare. When they do they ask: “What happened to it?” They find nothing as this article explains. Their next stop is the homeless shelter, our modern day Poor House!

Medicaid would be the safety net if? If states weren’t cutting it back. If the Federal and State Governments weren’t by definition Bankrupt and all of us in this country woefully strapped by job loss, investment loss, and cost of living, the only part that hasn’t gone down. Let’s add, the double dip of the Recession now in the making.

I cannot give answer to the overall fix we are in. I can answer for those of us affected by DM. We must prepare for our care ourselves! We must start now if not yesterday if we want to avoid being left behind!

Should she/he Stay at Home or Go to “Home”?

I have Posted 9 Articles in my Archive. They are all taken from the New Old Age section of the New York Times. The articles all concern the issue all of us affected by dementia face sooner or later. Should she/he Stay at Home or Go to “Home”?

They are listed below and can be accessed by clicking on the title of each.

1.     Assisted Living or a Nursing Home?

2.     Is Home Always So Sweet?

3.     A Rocking Chair Called Manhattan

4.     A Grass-Roots Effort to Grow Old at Home

5.     National Shared Living

6.     Sharing a table, and much more

7.     Real-Life Golden Girls

8.     My House, Our Home

9.     Growing Older in an Urban Village

We have been on a wild economic binge the last 30 years and have now to face its just results. In the 20^th Century we performed a marvelous task of restructuring our economy and the society that makes it up. This was done in response to the Great Depression of the ‘30’s. Between WWII and the stabilizing economy that followed we renovated the structure of our society into a more fair and balanced stratification in the possession of wealth.

Leading to the end of the century more people were generally affluent. The gap between the classes, the well to do, the middle, and the lower economic class had less of a gap between them when measuring the distribution of assets amongst those of us in this Country.

Erosion in this started in the lateer years of the twentieth century as the market and banking was able to free itself from the regulation that was placed over the economy in answer to the wrongdoing that brought about the Great Depression.  By 2008 as the Housing Bubble Crashed it became increasingly evident the looting of our economy which had occurred.

We have since been unable to extricate ourselves from the self-made mess and are again bordering on another recession before we are even out of the one we fell into in 2008. Being called the coming Great Recession it is likely to fall into another depression.

We will become familiar with terms like deflation, deflationary spiral, liquidity trap, poor house, soup kitchen, rampant unemployment, starvation. These just start a list that seems to have no ending. When the escalating number of boomers reach the state of need, Medicaid will not be able to handle their Cost of Care.

My comment today is not about what has been happening, but one thing that will happen which will have an altogether different negative effect on us individually and as a society.

More people will be beyond working age and less younger people behind them positioned to support them as has been the case until now. The Baby Boom will cause a resounding BOOM that will know no equal in recent history.

I am not being a crepe hanger: (a gloomy pessimist; a kill-joy) in stating the foregoing. The facts are there and unless one is amongst the very well to do they are feeling the effects of what is coming already.

This is the reason I so often return to a subject we all must face and that is “We must to do it all ourselves. We will not have Care when we no longer can provide for our own care!” We need to start now so something is in place when we get there.  

If we do not we will be without options when we arrive at that time of need! None of the old standbys will be there with us. Our National Economy is Spent, literally! This has filtered down to State and Community which is in the similar fix. They cannot do it.

As if by default it is quickly becoming our problem alone, no other will have it.

The number in need will quickly grow with the “Boomers” now entering the age of risk, 65 and over, become in need of care beyond what they can provide for themselves the Economy will break. With the severe state of economic limitation that now exists and will only get worse, nothing will be there for us unless we can provide it for ourselves.

When the escalating numbers of boomers reach the state of need, Medicaid will not be able to handle their entry into a Nursing Home or other form of institutional care. That will start what we will look back on and call “The Collapse!”

The articles I have posted all point to the self help remedies available to us if we get started Now!

Adult Daycare for Someone With Alzheimer's

BEYOND EXCELLENT describes the scope and content an article originating in caring.com, carried in 

Alzheimer’s Reading Room and now posted in my Archive. It is entitled Adult Daycare for Someone With Alzheimer's. Click on the title or on caring.com to go there and read it.

It deals in a topic too often overlooked that is both timely and important.

Those of us having dementia in the Early Stage as I do need the attention we do not get. It needs it for our quality of life and for the cost savings available for everyone if we get help in prolonging our time in Early Stage.

When we have the benefit of early detection and diagnosis while we remain independent able to continue functioning we have so many opportunities available to us. The most important of them is to increase our quality of life and lengthen the time we remain in the Early Stage of our disease.

We lead a lonely life abandoned by friends and family members. They don’t know what to do with us so simply don’t. We are alone with nothing to do, nothing to hope and look forward to. We simply sit and wait. We wait for the bus to come to take us to the “Home”.

Adult Day Care is one of many activities that can help us immeasurably. It fulfills a need for company, camaraderie and companionship. It provides socialization along with intellectual and creative stimulation to our brains. This gives us a terrific boost in our lives

Addressing our needs as something more than baby-sitting service makes all the difference. There are so many options in doing so. Socialization is probably the most important. We need to be out and about, in contact with people with whom we can be comfortable. I find I enjoy being with my dementia peers the best. With them I do not have to try to keep up as I do with normals. With normal folks I have a tough time keeping up. This leads to exhaustion and frustration.

Creative Stimulation is also so important. Whether it be Art, Music, Crafts, Mind Games; anything that challenges the brain to think and associate works with us. In this way we challenge the brain to overcome the impasse created by our limitations and find the by-pass to get around the mental impediment.

This invokes the brain to retrain and regenerate which it is quite capable of doing. Evoking the brain through the Arts creates a unique venue for improving the brain. The Arts are primarily managed and produced out of the right brain where we have the capacity to do so many tasks different than the data storage and assimilation carried out by our left brain.

Having the impetus directed to the right brain, that hemisphere used too little by us, opens doors that are new, pleasurable and fulfilling. This creates its own synergy in action spurring us on.

The enhancement of our quality of life alone produces such benefits. We have something to live for other than seeing ourselves as a burden and weight on the lives of our loved ones.

The more important factor over our own improvement that results is the benefit to the entire community and country.

The cost of care has increased prohibitively to the point that it has become confiscatory. Unless you are well to do the cost of it is going to drain all the resources of a husband and wife one of whom needs the expensive care. If you have any funds, such as retirement savings, this goes to apply on the cost of care. The obligation is joint between spouses, once the cost of care exhausts the accumulated savings of spouses, the one spouse receiving the care can have Medicaid step in and foot the cost.

No provision of any kind is provided for the spouse. No Medicaid to live on, no welfare, nothing is available to pay that spouses cost of living on during the balance of the care period and after the cared for spouse passes away.

This plight is not bad enough. Currently our entire economy is straining to pay its way and everything Government does is being cut back.

The cost of a nursing home will run 80 to 100 thousand a year. Professional Home Care accumulates to a higher cost than Nursing Homes. Assisted living is a close cousin to Nursing Home care running at about 80% of Nursing Home Care.

There is no recourse available when the government cuts back on Medicaid. This is starting in some states, like Texas, Arizona and others. Leading to and when that happens all of us suffer, it becomes everyone’s burden whether they have Dementia or not.

Day Care is one important step to many more we must take if we are to survive this calamity. 

THE SYNERGY OF SHOCK STRIKES AGAIN!

I was in the office of the surgeon who operated on my broken hip replacement last week. Appropriately I asked my wife to give the history of the difficulties I was having 2 ½ years after surgery. Appropriately the surgeon directed the rest of the conversation to my wife leaving me invisible in the room.

I needed my wife to talk so the history wouldn’t take all afternoon as I stammered and looked for words. I needed her to talk so nothing would be overlooked. I needed her to talk so I could take the time to listen to the conversation and have the time to understand it.

With my form of the disease I have sufficient cognition to understand what was being said. But I need time to hear it, digest it, and translate the words into information. Once I could understand it all as it was said. This is no longer instantaneous like that with me. I suffer a time lag while I go through the process of explaining to my brain what the words were that I heard. My brain then tells me what all of the words of a segment of communication mean.

My cognition is still pretty good. I not only knew I was in this process, I also knew how isolated from reality I had become letting my isolation go on. Having no other choice I nonetheless let it go on.

This all came to mind as I read the article entitled  The Long Goodbye… which appeared in Alzheimer’s Reading Room. Click on the hypertext’d title or Archive to read it.  

The shock term “The Long Goodbye” is one of many that a speaker can use to capture the attention of the listener. Unfortunately it comes at a price. It allows the listener in response to the shocking news to see the object of the discussion, the person afflicted with dementia, in the worst possible light.

Too often all of us dealing with this disease, afflicted, affected, more distant, and those not involved, accept the use of descriptive shock words to get the attention and favorable response from the listener. The expediency of it is excused by using shock the byproduct of which allows the formation of stereotypes about the disease. That’s ok if there is good purpose in it.

This is such a mistake because it de-humanizes us so. With this disease, with the cognitive attributes that remain, I run at two speeds. Abject, sad and depressed by what has happened to me because of the limitations I deal with every hour of every day. The other speed is that of being engaged. I have the disease and rather than sitting idly by feeling sorry for myself I am committed to doing something useful with my disease.

Writing is a big part of doing this. Thank you Monica Heltemes for your insight and sensitivity of your article “The Long Goodbye.”

WHAT’S WRONG WITH THIS PICTURE PART 6.5, and Last Part!

This post continues the segments of a paper I have posted in my Archive  under the hypertext title: WE NEED TO EXPAND OUR CONCENTRATION If you find this interesting and want to read it in its entirety click on the title to go to my Archive where it is posted as one.

3.We Need To Put Programs In Place To Have First Contact With Families First Diagnosed With Alzheimer’s

Alz.Org or some other program, more social as medical in nature, needs to direct itself to better providing for the unique needs of families afflicted by Alzheimer’s Disease. Provision of more positive programs will arm those with this family disease to more successfully cope with its effects and maintain more an atmosphere of normality such that the person with the disease is not relegated to expensive warehousing.

This New Service Is Needed.

There is an adjunct service crying out in need for Alz.Org or some other equivalent organization to act on. People need a place to go upon learning they have Alzheimer’s disease to learn the skills of what to do about it.

The person’s world and family are abruptly and irreparably altered by an Alzheimer’s diagnosis. It presents a collage of predicament that must be faced which needs a set of tools with guidance for facing them.

There is so much need for first stop places, gateways for folks suddenly confronted with the question: “What can I possibly do now? How do I handle this? How do those around me deal with it, deal with me?” We need a place to come, to sit down and learn how. Those of us who have it and are early stage are ideally equipped and more than happy to provide that service. We need help in organizing it, a place to provide it, entities to gather inquiries and refer folks to it.

The how to, what to and where to is incidental. It can be regular “get together for coffee” times and places, organized support groups, gatherings at Alt.Org, churches, public places where peer people able to help regularly attend.

Starts on First Diagnosis

It starts in the Doctor’s office. With a good system in place from the organization sponsoring it, Doctors and Staff could have available all of the places where a person might go and who they might call. This is simple. If they have the places and the places are up and running they can simply say: “Go there, they will tell you what you need to do, what you need to know.”

The Message.

We all need to understand that quality of life continues for those of us with this difficult prognosis. We just have to know what to do with it. It is easy for some of us who have been knocked around a little and had to learn it the hard way. Some other of us for whom life has been smoother need more help. Those of us who have been there and done that will give it to others if we can find them and see them to do so.

The Families of The Disease Need Treatment Too!

Ours is not only a medical disease it is a disease with particularly difficult social, cultural and psychological ramifications.

It is a family disease suffered by the entire family. There is crying need for help coming from caregivers, children and grandchildren, who all need help in accepting the fact of the disease and coping with its results.

Caregivers.

Care givers are drained; the unsung heroes are devastated by the loss not their own; suffered twice as much by them.

Family and Friends.

Children, friends, peers, have trouble grasping full understanding of the events that occur following the diagnosis, understanding the process and course of the disease.

Too often their reaction is couched in not knowing what to do. Therefore they do nothing. Delay of action leads to embarrassment. This results in benign neglect by them. This in turn isolates the afflicted one if not the caretaker too.

Children, particularly adult children, can get into denial. They do not want to think Mom or Dad has this horrible affliction. They don’t want it to be happening. This produces everything from downright denial to simply deferring it is a matter that they would rather not discuss or deal with right now.

This also isolates the person with the disease.

Shifting Roles.

Roles change for the entire family dealing with the disease. This is particularly difficult for the afflicted one to accommodate. Vulnerability is an altogether new thing for many of us. Personal reaction can range from irritation to depression to inability to deal with or accept the new and often subservient role. It is hard enough for the caretaker to step in and do everything without having also to deal with identity crises by the partner.

These are all matters that can be the subject of support by their fellows who have been dealing with the problems before them.

Mid and late stage provide an altogether different challenge. For those stages the more costly care becomes needed.

Cost Of Care Economy Can Be Achieved!

We can achieve positive results and cost of care economy by concentrating more alternatives for dealing with those yet in early stage the purpose of which is to keep them right there as long as possible.

WHAT’S WRONG WITH THIS PICTURE PART 6.4

This post continues the segments of a paper I have posted in my Archive  under the hypertext title: WE NEED TO EXPAND OUR CONCENTRATION If you find this interesting and want to read it in its entirety click on the title to go to my Archive where it is posted as one.

Who Pays The Cost?

As these extra expenses escalate, who pays for them? You do. When can you ask for help? Anytime, anywhere, anyone can be asked. When are you entitled to help? Only when you have reached what the law calls the “Poverty Threshold.”

This threshold is when you own no more than in the area of $103,000 total value of everything the husband and wife have. It was this amount when I checked with the experts in 2007. I believe it remains the same 4 years later.

Everything you have is just that! This includes bank accounts, retirement accounts face value of insurance policies, pension plans of which you are the owner not employer provided.

There are exclusions, not many, nonetheless there. Your homestead up too $500,000 in some cases others up to 1,000,000 in value are excluded so long as the other spouse remains living in it. Certain annuities if they fit within a rigid definition of “purchase of flow of income only annuities” with no or restricted right of beneficiary appointment are excluded. If you have given it away more than five years before application for assistance is made it might qualify. By giving it away they mean it. That does not include revocable trusts.

Change.

What is needed is change.

 Change in the style and cost of care.

 Provision of more economical care.

 Change of the existing infrastructure responding to the present needs produced by Alzheimer’s

 Creative change of Public Assistance beyond the current compensation formulas.

These can run anywhere from qualification to supplemental provisions taking the form of more tax deduction and credit allowances, credits or incentives for public, private and non-profit ventures all directed to reducing the cost and increasing the availability of help for families faced with the overwhelming task of accommodating the alteration in their lives caused by Alzheimer’s.

IT IS IN THE PUBLIC’S INTEREST.

It is in the public’s interests this be done. Alzheimer’s disease presents our short term future with a financial crisis that will devastate our already exhausted private and public capacity to pay its cost.

Proposals for Change.

What are sorely needed are lower level care facilities and assistance programs. In whatever form we need to consider and seek out greater economy of care in a variety of methods as alternatives to the high cost of institutional nursing home and assisted living of the facilities now provided.

Kinds of Care.

These can be although not limited to boarding and care homes, co-ops, foster homes, mutual help homes of people buying or renting a group home or grouping in same location apartments to hire and manage their own needs. Programs to support this are needed to help organize, facilitate and maintain these kinds of alternative care approaches. These could be supplied by private enterprise, charitable institutions or some lower level function than the Federal Government. This is being done in some areas; so much more is needed.

Tax Treatment.

Additionally tax breaks and public incentives are needed. There has been a concentration of effort on removing any opportunity of anyone avoiding their personal obligation to pay for institutional care by government. This may be as it ought. Nonetheless if private estates must first be drained of the funds needed by those depending on the person needing care, those dependants will continue to have the same economic need during and after the care is given the one in need of it.

The epidemic proportions of the issues associated with Alzheimer’s disease need attention. Tax deduction is needed for in home care, day care, respite care, any care in other forms. Deduction allowance is needed for the cost of care facilities. There needs to be a scheme to reward economy of costs in providing services. Other tax benefits are needed for programs to supplant the need of public funding for care. These need to be explored and the best of them provided.

Current Tax Treatment.

Although some deduction of cost of care facilities exists it is not clear, and too often predicated on qualification processes that escalate the cost prohibitively. For a person needing such care it is questionable who has the deduction that might exist. Is the patient needing the care qualified to deduct it or is it the deduction of the caregiver requiring the additional help. Who determines the qualification of the person in need before any deduction can be taken?

The tax breaks depend on the taxpayer entitled to the break having the income from which to take the break. Many on fixed income fall between the cracks. They have too little income from too much estate to qualify for public assistance. This is one of those open cracks. Some scheme of credits, rebates or something more direct needs to be considered for those who do not benefit from the deduction credit allowed against taxable income.

Change Will Save The System.

We need to find a more economical way of providing care and respite for the afflicted before those needs bankrupt the system and put everyone out on the street. The problems today with cost of living, health care and insurance costs, medical and hospital costs, the inability of our politicians to get it together in any meaningful way demonstrate what will come. The prospect of what we all will face is inversely magnified by the inability of our culture, institutions and governmental processes to care for the current insurmountable costs we have caring for ourselves without Dementia complicating it. How then are we to meet this coming crises bearing down on us at breakneck speed.

If we are unable to find a cure for this disease quickly there will be no funds left with which to seek economy of care. The coming increase of people needing care because of this disease is frightening.

WHAT’S WRONG WITH THIS PICTURE PART 6.3

This post continues the segments of a paper I have posted in my Archive  under the hypertext title: WE NEED TO EXPAND OUR CONCENTRATION If you find this interesting and want to read it in its entirety click on the title to go to my Archive where it is posted as one.

2. We Need To Give Emphasis To Economy Of Cost Of Care

Alz.Org needs to concentrate on formulating and developing programs of care offering a greater economy than those as now exist.

When a family is faced with its diagnosis of Alzheimer’s disease it faces a variety of issues that need immediate resolution. One of these is the handling of their estate which may be irretrievably altered by reason of the current prognosis for care of the Alzheimer’s afflicted.

Financial Issues of First Facing This Disease.

Of the many things that need to be dealt with will be:

1. What will happen if the care needed has cost for which the family is not presently prepared to pay.

2. Is there long term health coverage to pay this?

3. Does Normal Health Care coverage or Medicare provide any help?

4. Is the Alzheimer afflicted able to continue working, earning the same salary? Is the spouse working earning income, is that enough to currently support the family?

5. If income of one subsides or of all of them reduce will the family be able to make it?

6. Where does the family go to fill the gap?

The Answers To These Questions Are Not Pretty!

1. The family’s private funds are normally the first source for payment of any cost of care not immediately covered by the insurance of the family.

2. Long Term Health Care coverage, if sufficient, if it specifically makes provisions, and is designed to run a sufficiently long, will pay cost of care in the home and out of home care provided by agencies qualifying for reimbursement. This applies to most institutional Nursing Home and Assisted Living Facilities. It may apply to some day care and group home settings.

3. Health Care coverage and Medicare do not pay anything but immediate Hospital and Medically related expenses provided as part of treatment. This most often does not include Nursing Home, Assisted Living facilities or equivalent styles of In House or Away from Home kinds of help.

4. In the event of diminution in earnings in the household by reason of the disease the private funds of the families are the first if not only source to make up the difference. Charitable or public assistance is predicated on the inability to pay and in many cases is difficult to get unless there is no other way.

5. If the family cannot make it, Public Assistance is available as well as assistance from many giving groups.

6. The problem is for those in-between.

Available Options.

Long term health care seems worth every penny paid for it, if you have it. If you do not, with an Alzheimer’s diagnosis it is unlikely you can get it. But, remember, you get what you pay for, no more, no less. If you were smart enough and have it be sure it pays enough. Be sure it runs long enough. Be sure it covers Nursing Home and Assisted Living Care. 

These are pretty basic to all of them. Be sure in addition they cover cost of home care and cost of out of the home care not the normal institutional Nursing or Assisted Living facility. Look at the type and kind of services it pays for. Does it pay for the normal group home, called foster home in some states? What are the qualifications, if any, for the home should payment for it be sought? The same applies to Home Care. Is the person who comes in to provide care qualified, certified, or. can just anyone provide the service required by simpler needs such as attendance, cooking, cleaning etc.

Financial Planning

Some financial planning with an expert is recommended. This is most important when it comes to evaluating the availability of Public Assistance. A need for care does not automatically produce Public Assistance. The law is very specific in determining where and how you qualify for it before you can get it.

In most cases the funds of the husband and wife seeking assistance (their entire estate) cannot exceed a few thousand more than 100,000 between them. This may seem to be enough. It is not when you stop to consider this:

When the need for Assistance kicks in the current need of the family doesn’t kick out, it continues. As an example: The husband, no longer earning income, needs daily attendant care. If the wife is home, able to give it that is not a new cost. In this situation the couples living conditions do not change however, they continue as they were.

The cost incident to the disease only goes up and too often is yours alone. What this means is: Current cost of living does not go down, if anything it goes up. These costs continue during the lifetime of both the husband and the wife. Circumstances change what those costs might be. They can go up, they can go down. We of course know their usual direction.

They will go down if the husband needs to go into assisted living or nursing home or some other out of home care facility. Without regard to who pays the cost of this the expenses do go down for the wife to the extent she no longer has to pay the eating and living expenses of the husband. She need no longer pay those costs incidental to his living at home. These are the only costs that stop. Housing, clothing, medical care, health insurance for both, electricity, heat, rental or mortgage expense, insurance, car care, these all remain.

When the husband dies the wife’s financial needs do not change appreciably with respect to herself. They continue. They continue her life time.

Now we come to totaling all of this to see how long that $100,000 lasts. Pull out your budget. What do you pay a month, a year? What of it will change if at all when one of you enters out of home care? Of the fixed amounts multiply them by the number of years of life expectancy the survivor is likely to live. Will it last?

WHAT’S WRONG WITH THIS PICTURE PART 6.2

This post continues the segments of a paper I have posted in my Archive  under the hypertext title: WE NEED TO EXPAND OUR CONCENTRATION If you find this interesting and want to read it in its entirety click on the title to go to my Archive where it is posted as one.

1. We Need To Develop Programs Modified To Deal With Those In Early Stage Designed To Delay Their Progress Into Mid Stage

Organizing services and promoting programs designed for care to alleviate the insurmountable costs that will occur as the number of Alzheimer afflicted multiplies creates needs our attention. The “boomers” coming of that age where the incidence of onset escalates in number is coming quickly. It will overwhelm current capacity for care and exhaust private and public ability to pay for it.

Concentration of a different kind of care can provide solution.

Particular emphasis should be given services concentrating on early stage Alzheimer’s afflicted. They remain sufficiently cognitive and articulate, able to help themselves stay in place in early stage. Kept in place they will not contribute numerically to the deluge of need that will arise from the added people needing care for middle and late stage Alzheimer’s.

Public policy can reap the value from concentration of services and enhancement of programs for early stage. Doing this will provide cost of care economy and give time for continuing research to find the cure. Time is as important a need for finding the cure as is funding for it.

Need More Than Comforting Care.

Currently so much of the care is provided on a palliative basis. This is properly so. It is the kind equipped to benefit the middle and late stage afflicted who are unable to help themselves and whose condition is not able to improve from care.

This same approach for early stage afflicted defeats any benefit that might otherwise accrue for them. It doesn’t deal with them as they are; it invites them to become passive and unresponsive. This simply encourages them to slip into a more dependent and needy state.

In early stage the afflicted are best able to remain in place if provided for appropriately.

The longer a person remains in early stage the less the corresponding cost of care for that person.

Positive creative activity contributes to the person in early stage staying in early stage longer. Any care approach that stimulates and activates is more appropriate for this group. In this group although the process can’t be reversed it can be prolonged.

A Definitive Positive Result Can Be Obtained.

Why is this so? Many reasons, the most prominent:

1. Early Stagers are more stimulated to exercise daily or often weekly. It is a given, exercise is the best treatment and the best means of staving off the debilitation inherent in our disease process.

2. Social activity stimulates continuing at an even cognitive plateau, inactivity and isolation accelerates progressive decline.

3. Creative activity enhances cognitive ability to find alternative pathways to compensate for mental loss. This prolongs the cognition and acuity.

4. One study suggests the activity of socializing, advocating and dealing in network with peers about AD boosts cognitive performance of those doing it. This is consistent with the personal anecdotal experience of those participating in such activity.

5. Current medications prolong the cognitive state and sometimes increase acuity in many of those in early stage.

The more the early stage can be prolonged for a person the greater economy of cost can be obtained in an otherwise foreboding deluge of epidemic-like escalation in cost.

WHAT’S WRONG WITH THIS PICTURE PART 6.1

Introduction

The purpose of this paper is threefold:

1. Recognition of the efficacy of increasing support and implementation of programs designed to keep Early Stage Alzheimer’s Afflicted in that self sufficient and constructive stage

2. Promoting alternative ways both by legislation and by support and implementation of programs to economize the cost of care for the individuals required to pay for it.

3. Support and Implementation of programs to provide service to those newly diagnosed, giving them a social service contact of a kind to inform them on what to do and how to handle their new and different circumstance and some kind of a support system of peers for those diagnosed in Early Stage to secure for them the greatest wherewithal to stay in Early Stage as long as possible.

This paper is in answer to a request from our local MN&ND Alz.Org policy group to provide input for their review of policy. It is also submitted to National Alz.Org for the same or any other purpose.

My assertions are predicated not only on the personal experience of the impact of first learning “I got it.” It looks at the economy of dealing with it in the framework of where we are now, where we as a nation and culture are going and the continuing impact that will be there because we “have it.”

The emphasis has been on funding and finding a cure. This is important, very important and needs to continue. There are other considerations that need priority of emphasis.

The direction of this paper in two of its parts addresses the economic efficacy of treatment to some of the Alzheimer’s afflicted, namely those in early stage, and the economy of cost for all of us in Early-Mid-Late Stage.

The third part of this paper addresses the need to get the person diagnosed into as good a direction as possible for the simple reason of their acute need that exists and too often is not met. It also serves the corollary reason of capturing Early Stage afflicted in order that their needs be served quickly. Early Stage as long as possible. This provides immediate economy to the huge cost of care faced by the country in the onslaught of escalating numbers of people reaching the age of high risk of incidence of this disease.

When it comes to funding and finding cures, a good argument exists: “There is only so much Alz.Org can do.” This is simply answered: “If this disease reaches the numbers afflicted that normal aging population increase suggests the cost of care, private and public will bust us leaving nothing with which to fund finding a cure.” A corollary to this is: “Time for research is as important as funding the cost. The more time given increases the chance of discovery. Delaying the process of large numbers of afflicted progressing from Early to Mid Stage would increase time and delay the financial impact of the cost of care.”

It is for these reasons I take this threefold approach.

They appear in the paper under the following titles:

1. We Need To Develop Programs Modified To Deal With Those In Early Stage Designed To Delay Their Progress Into Mid Stage
2. We Need To Give Emphasis To Economy Of Cost Of Care

3. We Need To Put Programs In Place To Have First Contact With Families First Diagnosed With Alzheimer’s 


Should you want to read all ten pages posted as one document click on We Need to Expand our Concentration