DO YOU REALLY NEED LONG TERM CARE INSURANCE?

I have received a variety of responses from my last post about Long Term Insurance Coverage. Much of it was simply, "I couldn’t afford it in the first place, so, why concern myself with it now." That may be so for many who will be qualified for Government Aid as soon as they need any form of Long Term Care.

That unfortunately does not include a lot of us in what is known as the Middle Class. This is particularly true for those of us in the Middle Class who do not have Public or Private Pension programs when we come to retire.

We must pay our own way. We are the ones who could use Long Term Care Insurance if we had the foresight to get it before becoming diagnosed with Alzheimer’s which disqualifies us on diagnosis.

I chose not to get it. This was the result of bad advice and bias making me suspicious of Insurance Co generally and specifically about Long Term Care Insurance. As I considered this coverage it seemed costly in premium, limited in both benefit and time of coverage and did not make sense. That was a big mistake.

My wife and I saved up for retirement. We do not have pension or other benefits available through our respective employments. We did for ourselves, developed some deferred tax accounts, invested post tax funds, we seemed to have a sufficiency when we both retired.

Then AD entered the picture. This prompted our review of what we had taking account for this unexpected event of having this disease. We had enough should neither of us end up needing long term care. With AD this amount we have starts to stretch thin if I need long term care.

There is no help for long term care. No Medicare, Health Insurance, no Gov't Assistance unless you have only a limited estate. You must drain down your estate before you can qualify for Gov't Assistance. Then they will pay. This unfortunately leaves your spouse without support while you are in The Home and after you are in the ground.

When we realized this, my wife who could still get it, got long term care coverage. She had been an insurance broker and knew coverage, searched and found what appears to be a good policy.

The value of the article I posted is: even though it is a lottery, before you are diagnosed, it is nice to have had the foresight to get it. The article is for those so positioned because it provides some criterion helpful in making a choice.

Who thinks about these things before the AD Lightning Strike? Hmmmm! I didn't. I was appalled to learn how little help there is for us in the middle, like Middle Class. We thought we did the right thing, took care of ourselves. That’s the good old American way! The laugh’s on us.

What we thought was enough, then, (thank you good old American Government and Business,) the market crashed diminishing our savings. To add insult to injury we added up the confiscatory amounts we were paying annually for prescription drugs (that part not covered by Part D, thanks again America’s G&B) Medical costs (that part not covered by normal insurance coverage, thanks again America’s G&B) and insurance premiums for normal insurance for my wife and the far more reasonable cost for this old duffer through Medicare, we were aghast.

Last year we paid out of our pocked $35,000 for medical costs. We saw this in the tally for tax deductions. We have estimated this year it will be reduced by 10,000 if my wife does not need to go back to Mayo Clinic where she had to go finally to get a diagnosis for a rare disease she suffers. Mayo was out of system in her coverage. We live in MN as Mayo is in MN but not insofar as her carrier was concerned it was still out of system.

Get long term care coverage if you can afford it. If you cannot, plan on what you have being drained before any help becomes available. I say all of this to make this overall point:

We so need an adequate reform of health care and insurance coverage in this country. We need some controls being placed on Drug Companies and other Health Care Companies sucking so much off of the top of every dollar spent for our health care. Along with the Bankers, Drug Companies and other Health Care Companies, have been pillaging our means to care for ourselves.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

COST OF CARE: Long Term Care Insurance

An article appeared in the New York Times yesterday that is worth the reading. It deals with cost of care and aging, it zeroes in on Long Term Care Insurance that is very helpful but an unintelligible maze when it comes to understanding it. The article addresses some of the complications and gives excellent explanation and counsel.

I have posted the article on a new Blog I have created as an archive of material I come across that is too long and detailed to post on my Blog or on the Boards. The archive can be found at: MY ALZHEIMER’S ARCHIVE OF ARTICLES AND MEMORANDA http://ic-mike.blogspot.com/

I have started a second Blog the announcement of which is in Header at the top of this Blog. As it explains it is the book I am growing out of the material I have posted on this Blog. I am posting parts of the book as I write them; it is a work in progress. I invite you to look at that at: FROM AA TO AD, A WISTFUL TRAVELOGUE http://icmike.blogspot.com/

I will write more on the subject of long term care and the cost of care as I go along in my postings. If you review older posts which in invite you to do you will find a series of posts on the Cost of Care and the concern anyone affected by Alzheimer’s deals with faced with the tragic process of this disease.

We need bold action on this issue. It will cripple us all financially; it will devastate more of us as we either contract this terrible disease or we see our loved ones do so. If you are not affected now your reaction may be there are many terrible maladies that accompany aging. This is but one of them.

This is true, but there are not any others for which the Cost of Care is greater or is hitting more people in number than any other disease associated with aging or hitting those with young onset AD. The Government and Support Entities have been working feverishly to raise money for finding a cure.

In the past care and its cost has been secondary to this undertaking. It needs to be made equal or primary now. Until and if a cure is found, we are still faced with the unremitting progress of the disease as it robs us of our mind and our life and increases in number exponentially as more baby boomers reach the age of risk of contracting this disease.

One step of protection is long term care insurance. A sound policy is worth it. It covers one exigency in part for a time. The cost of care will break every middle class retirement portfolio. This is one step to relieve the likelihood. There are more in the area of care that I will continue writing about.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

PART IV. ALZHEIMER’S DISEASE CAN BE A SPIRITUAL UNDERTAKING.

This is the fourth of four essays written under the common “…SPIRITUAL UNDERTAKING.” The first was IT IS ALL IN THE BALANCE, the second was MY JOURNEY IN LIFE. The third "HOW AA LED TO AD AND FROM THERE TO MY DISCOVERY OF BUDDHISM. "These four essays are part of the book I am writing: FROM AA TO AD A WISTFUL TRAVELOGUE

HOW MY DIAGNOSIS OF ALZHEIMER'S IS PUT TO GOOD USE IN THE EXERCISE OF THE WAY OF BUDDHISM





Buddhism is my way for approaching my world. Through utilizing the way of Buddhism I have dealt with my diagnosis of Alzheimer’s disease (AD). I am not a religious Buddhist. I was a Catholic, firmly understanding and educated in my belief system. In following that belief system I later, in mid-life embraced Judaism. I today remain a Jew.

When confronted with AD the student in me tried to understand the consequences of my having this disease. This search for understanding led me to the study of Buddhism. Embracing the mind set and the practices of Buddhism I was enabled to deal with my diagnosis in a far better way.

I do not recommend Buddhism as a religion. Buddhism is a Way. The Dalai Lama and so many of the writers I have read say, follow your own spiritual mentors, the ones with whom you are the most comfortable. Apply the Way of Buddhism to their guidance and you will find the peace and serenity available in it.

Robert Thurman, movie star Uma Thurman’s dad no less, wrote a wonderful book entitled: The Jewel Tree of Tibet. It is his approach to the Buddhist aphorism “The way to happiness is in seeking the happiness of another not yourself.”

In his book Thurman describes a tree standing on a small island in the middle of a large sea. On the tree are jewels. The jewels are the spiritual mentors of the person who meditates before it. The meditator (you) sits on a hill on the shore overlooking the tree. Below the meditator is a valley filled with all of the people for whom the meditator seeks happiness. The mediator breathes in their pain and suffering, taking that as his own, and beseeches his spiritual mentors to relieve the pain and suffering of those whose relief he seeks.

I find this a beautiful metaphor for Buddhism in practice. At the begining is the icon of it that I have drawn digitally and use in meditation. On it my jewels include my Christian, my Jewish and my Buddhist spiritual mentors.

I use this picture during meditation. It offers me a sense of peace and depicts the essential of what meditation in Buddhism is for me.

When I was diagnosed with Alzheimer’s Disease my initial reaction was this:

Why me?

Alzheimer’s came out of the blue, no warning, it just hit! There I was, “wham,” nowhere to go; it would not leave me; it would not go away; it was beyond devastating to have to cope with it and all its ramifications.

It became my lot in life. Why me and not someone else? Haven’t I had enough?

We in this life are continuously in search of happiness, continuously seeking freedom from suffering. Why does the suffering keep coming back?

Buddhism in its Four Noble Truths gives answers:

1. Life means suffering.
2. The origin of suffering is attachment.
3. The cessation of suffering is attainable.
4. The path to the cessation of suffering.

(I have italicized the Four Noble Truths here and in the later portion of this essay. I have provided textual explanation of the Four Noble Truths in the essay entitled PART III: HOW AA LED TO AD AND FROM THERE TO MY DISCOVERY OF BUDDHISM which preceded this essay.)

Taking what is explained, applying it to my experience in life, I conclude it all means this:

The adage of life: “It wasn’t supposed to be a rose garden!” is quite correct. Life includes suffering along with happiness. Happiness is easy to deal with. We accept it as birthright and look for more.

We have a greater problem with suffering. If there are evident reasons for it acceptance is easier. You rob a bank; you have to go to jail. That seems as it ought to be difficult as it is to accept if you are the robber. Too often the reason is not evident. If suffering comes on by way of random occurrence with no understandable reason for its cause, that is far harder to accept.

When suffering seems to have no basis it invites the question “Why me?”

All of my life I have been incredulous over the proposition that tragedy can happen so readily, suffering can come at random with no apparent reason. Why? Why is there so much suffering, so much suffering caused by random events? Why is it so disproportionately placed on some, with no reason, and not on others, some of whom might qualify better for it?

These are the questions that scream for answer none of which can be found within this life.

This of course leads one to search beyond this life for some kind of answer.

Religion provides the first line of answer to this confusing predicament we all face. Religion offers answers; it also offers ritual with promise of reward. Often the embrace of the religion and its ritual gives solace for the pain and heartache produced by suffering.

Others do not need the explanation of religion. Life is full enough to sustain them through the difficulties encountered in life. For them that it is enough.

My answer is found in Buddhism.

My life has been filled with reverses. I have suffered loss innumerable times. For the many successes that were mine too few ever lasted, too many turned to defeat. Life was difficult, I sought solace in alcohol. That all but destroyed me.

Wresting my life from the clutches of alcohol addiction taught me there is a way we can reverse misfortune. We can convert a negative event into a positive one. My addiction to alcohol became the transformation of my life. This happened because my addiction forced me to accept life on its terms and not as I would have it.

I was forced to accept the Four Noble Truths. My experience of turning it over in all of my affairs invoked the Four Noble Truths for me. I could step back, look at each event, accept its reality then seek a way to deal with it in a positive way.

I knew because I had learned “Turn to your higher power for help. That higher power can and will take care of the problem, take care of the event complicating me.” This worked!

How does this fit into Buddhism, into the Four Noble Truths?

(1.) Life means suffering. A simpler way of dealing with this concept is to look on life as necessarily including suffering. It is our lot in this life to suffer from events the happening of which we have no evident control.

(2.) The cause of suffering is attachment. When events occur we embrace them fully as ours. We do not treat them with any objectivity. By this I mean, when suffering happens we dwell on the aspect of the suffering it causes and do not look any further. It hurts and we dwell on that.

We take into account that (3.) the cessation of suffering is attainable. How is this possible, how can we attain cessation of it? The explanations contained in my third essay of this series which gives an overview of Buddhism in Noble Truth # 3 it is stated: “This means that suffering can be overcome through human activity, simply by removing the cause of suffering”

The simplest human activity I found in countering the desperation I felt with my diagnosis of AD was to say “So, what are you going to do with it. Muck around in the pain of it or alternatively see how you can make the best use of it!”

This is what I did 34 years ago with alcoholism. I turned my alcoholism over to the care of my higher power. As a result of this undertaking it transformed my life. My alcoholism is the best thing that happened in my life. It led me to recovery and forced me to use the way of recovery to my advantage. Is the same thing possible with AD?

I turned my AD over to my higher power. The result was phenomenal. I looked for the good in this terrible event that had occurred, namely my diagnosis of AD. I found much good in it.

I was diagnosed at a very early stage. This gave me time to remain at a functional cognitive level. At this level I was equipped to dedicate my life which included the curse of Alzheimer’s to some good purpose.

That good purpose among others is to be an advocate for matters concerned generally with AD and specifically with Early Stage. As it concerns Early Stage, one of my causes in advocacy is the proposition that the longer we stay in early stage the longer we have a favorable quality of life. This is to our benefit and the benefit of our caregivers, our families and our loved ones. It saves them wear and tear caused by our needs because of our disability and it saves the cost of care for them and for society at large,

There is reason to believe it is possible to prolong early stage by our becoming involved in creative, positive and social activities. I have discussed this in other essays I have written.

Taking action on this decision has been quite beneficial for me.

It has taken me out of my self centeredness and committed me to the help of others consistent with the admonition of Buddhism, that being, to commit your love and compassion to relieve the suffering of others. Buddhists call this concentration: Bodhicitta.

It has given me reason for having AD as I join the reality of it with the opportunity of doing some good with it.

Above all it leads me on a (4.) a path to the cessation of suffering. The suffering from my AD has reversed itself becoming a blessing. It gives me the opportunity to do good with my remaining years in my current condition.


Mike Donohue

My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

THIS NEEDS TO BE SAID AGAIN, AND AGAIN, AND AGAIN!

We all grieve it!

Those of us suffering through this disease, day by day, whether we are AD afflicted, one of its similar variations, or a caregiver facing abrupt change and an unexpected increase in responsibility. No only that our loved ones are left seeing loss inching away in the slow slide of the one they love.

Our plate is full!

Everything about this disease is tragic and worse the tragedy of it is subtle.

It is subtle to us who have it. Too often the change has occurred before we or so many around us have a clue of its having occurred.

It is subtle to our caregivers because the agenda is changed for them dramatically. The subtlety of this is the change occurs without warning; also it occurs with no guide posts, support or empathy for the intolerable burden it places on them. They are truly our “unsung heroes.”

Those of us afflicted get the attention if any there be. Off in the wings who is there that gives a care to the caretaker? We can be angry and everyone understands why. Does anyone wonder what is going on inside the caretaker?

The caretaker has every right to be angry and what a strange bird he/she would be if there existed in them no anger at all. Mother Theresa’s we are not in this human condition. The worst part of a caretakers anger is it has no place to go! The honest anger is with the disease. The minute it is vented it is misconstrued. Therefore it is swallowed and buried and burns on.

It has been said, I have said it in part: ALL THE CAREGIVER IS SEEING IS THE LOSS OF THEIR "FAMILIAR" SPOUSE AND THE EMERGENCE OF A STRANGER WITH INCREASINGLY UNPLEASANT TRAITS. I leave the caregiver out and apply it to everyone.

So the caretaker should be exempt of that feeling?

I see that feeling everywhere, and when it seeps out from those close to me it breaks my heart. I can take it hard as it is to take having it. To see my loved ones suffer it because of me I cannot take. It is such a burden foisted on them and the absence of concern for this by the society that responds to us.

This is not from sadness that I write, but from frustration. So few know what it is really like and less know what it is like for our loved ones.

I wrote and posted a poem some time ago that I post again to emphasize my point:

Wake of Tears

Here I am trailing to death
In a wake of sorrows and sobs of those who watch me go.
To the world around me my conscious dims,
My skill to care escapes my hand,
Weight I’ve become, and burden too.
And here presents my personal parody:
I must grasp and hold so tight
That tendered love provided me.
It commandeers, cares, does for me instead,
Standing in my place, their hand with mine,
Lovingly leading me along life’s final frame.

Mike Donohue 2008

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

TIRED OF ME SAYING I'M TIRED OF HEARING?

I have had so many supportive comments to my post: I AM TIRED OF HEARING, “YOU ARE SO SHARP, YOU CAN’T HAVE IT!” my head could swell if AD had left any room in my brain in which to do it. There have also been a few negative comments.
These prompt my response as follows:

Your advice is great short cut admonishing me: "forget it, quit whining, get on with your life!" That has nothing to do with why I wrote this piece.

My purpose was directed toward the stereotype from which the comment: "Your so good you can't have it" arises.

This "you can't have it" characterization arises from a misunderstanding of the disease. The common stereotype is this: If you have it you have to be standing in a corner unable to find your direction out of it.

The reality of the disease is you can function so well, work around your limitations and come off as normal as the next guy.

This is good. It is also wonderful for us. If we have this disease our best quality of life is secured by 1. knowing we have it. 2. treating it accordingly, and, 3. by virtue of doing that staying in the Early Stage longer.

That is good for us, good for the community because it keeps us off those rolls of need that increase the Cost of Care.

When we "look so good we must not have it" many wrong things result.
1. You obviously don't need help! Result: You obviously don't get it!

2. There are so many programs that can help us stay in Early Stage if we get them. The Mantra, "Take your medication, eat right, participate in social, creative, intellectually stimulating activities" really helps our quality of life and helps us stay in Early Stage longer. Looking like we don't need help defeats any possibility of having organized the activity side of what we need.

3. We in the Early Stage fall through the cracks when it comes to getting any kind of public attention. Even though we do not show our impediments we still have them. Having to deal with them, more than not, contributes to accelerating them. Loneliness breeds more loneliness. Boredom lets us slip too readily into mid stage. I could go on.

4. We will get there soon enough! The more we can arrest the process by doing something about it the better we will be off.


Therefore, join with me in doing all we can to accomplish all of this. Do not stand for the stereotype, "You can't have it." When you hear it let loose with the litany: "If only you knew" then give the rendition of what you have to deal with that they don't see.

Bottom line: The Stereotype does us disservice, do not stand for it!


Mike Donohue

My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

PART III. ALZHEIMER’S DISEASE CAN BE A SPIRITUAL UNDERTAKING

This is the third of four essays written under the common “…SPIRITUAL UNDERTAKING.” The first was IT IS ALL IN THE BALANCE, the second was MY JOURNEY IN LIFE. These four essays are part of the book I am writing: FROM AA TO AD A WISTFUL TRAVELOGUE

HOW AA LED TO AD AND FROM THERE TO MY DISCOVERY OF BUDDHISM

While occupying this dimension in which we find ourselves (the life we are in on this earth) one will occasionally wonder, “What is it all about?” It is this premise that gives rise to those issues of life not directly immersed in the basic life that we experience to survive. Sooner or later man asks, “Why?” Why survive; where is it going, what is its worth; where do I fit in it; just what am I doing in this life?”

These are questions I asked as a Catholic, as a Christian, as a religiously unaffiliated, as a Jew. I found answers within the framework from which I asked the question. Never did I sense having received a full answer.

When I was forced to join Alcoholics Anonymous (AA) I did so as a “basics of life” need, namely: survival. I was going down, there was nothing I could do to stop it because I could not quit the using and abusing that was killing me. AA delivered, I survived.

This was my epiphany. I entered a new life. This new life came as a result of turning outside of me in order to survive. It is not something I chose to do. I had to do it. Do it or die!

The program of recovery in AA took me on a path not previously walked by me. It is one in which I had to turn everything over to my Higher Power. Put simply it consisted completely of “Let go, Let God” in all of my affairs. It was different; it defied all logic, nonetheless it is the first thing that worked for me ever.

I spent time in trying to figure it out and did not do so fully until my discovery of Buddhism. This is when finally I was able to get a full answer to my question: “What is it all about?” What is it I discovered; what did it say to me?

It told me this:

We live in a dimension of time and space by which we are limited. It is a material consequence in which we live from one instant of time to the next, occupying a singular space through which we can move. We live; we die and operate in-between these events. That is life!

Buddhism tells us that this context is at best illusory. All of the materiality we see has no real physicality. It is ephemeral, nonetheless, has purpose, and follows sequence to sequence, during which we are involved with all of that around us in this same dimension.

This is the first difficult concept we need to apprehend to understand Buddhism. I compare the illusory aspect of life as we know it, the impermanence of it, the real lack of materiality to it like the vast expanse of cyberspace in which our involvement therein is through an algorithm the using of which gives us the power to exercise individual cause and effect in it and create consequences as a result.

The non material aspect of the cyberworld compares directly to the reality of the physical world which we perceive as material. That real materiality of our world (as opposed to the material world we perceive) reduced down to its component parts, namely, its quantum levels, is little more than movement or expenditure of energy. It breaks down to no physicality. The arrangement of the particles comprising any given physical object gives it the view and feel of material when in fact it is not.

To the Buddhist this is true of all of life. This life is but a momentary interlude in our overall conscious existence. In this interlude we are limited, involved and definitely occupied with our circumstance. We become so occupied we begin to believe our life here and now is all there is.

Buddhism is built on four basic truths it calls the Four Noble Truths. They are:

1. Life means suffering.

To live means to suffer, because the human nature is not perfect and neither is the world we live in. During our lifetime, we inevitably have to endure physical suffering such as pain, sickness, injury, tiredness, old age, and eventually death; and we have to endure psychological suffering like sadness, fear, frustration, disappointment, and depression. Although there are different degrees of suffering and there are also positive experiences in life that we perceive as the opposite of suffering, such as ease, comfort and happiness, life in its totality is imperfect and incomplete, because our world is subject to impermanence. This means we are never able to keep permanently what we strive for, and just as happy moments pass by; we ourselves and our loved ones will pass away one day, too.

2. The origin of suffering is attachment.

The origin of suffering is attachment to transient things and the ignorance thereof. Transient things do not only include the physical objects that surround us, but also ideas, and -in a greater sense- all objects of our perception. Ignorance is the lack of understanding of how our mind is attached to impermanent things. The reasons for suffering are desire, passion, ardor, pursuit of wealth and prestige, striving for fame and popularity, or in short: craving and clinging. Because the objects of our attachment are transient, their loss is inevitable, thus suffering will necessarily follow. Objects of attachment also include the idea of a "self" which is a delusion, because there is no abiding self. What we call "self" is just an imagined entity, and we are merely a part of the ceaseless becoming of the universe.

3. The cessation of suffering is attainable.

The cessation of suffering can be attained through nirodha. Nirodha means the unmaking of sensual craving and conceptual attachment. The third noble truth expresses the idea that suffering can be ended by attaining dispassion. Nirodha extinguishes all forms of clinging and attachment. This means that suffering can be overcome through human activity, simply by removing the cause of suffering. Attaining and perfecting dispassion is a process of many levels that ultimately results in the state of Nirvana. Nirvana means freedom from all worries, troubles, complexes, fabrications and ideas. Nirvana is not comprehensible for those who have not attained it.

4. The path to the cessation of suffering.

There is a path to the end of suffering - a gradual path of self-improvement, which is described more detailed in the Eightfold Path. It is the middle way between the two extremes of excessive self-indulgence (hedonism) and excessive self-mortification (asceticism); and it leads to the end of the cycle of rebirth. The latter quality discerns it from other paths which are merely "wandering on the wheel of becoming", because these do not have a final object. The path to the end of suffering can extend over many lifetimes, throughout which every individual rebirth is subject to karmic conditioning. Craving, ignorance, delusions, and its effects will disappear gradually, as progress is made on the path. (http://www.thebigview.com/buddhism/fourtruths.html)

Buddhism does not dwell on suffering it dwells on overcoming suffering and finding happiness not only for ourselves but for all others too.

To overcome suffering Buddhism speaks of love and compassion. To exercise love and compassion by concentrating on relieving the pain and suffering of others than self is the surest way of finding enlightenment in the long run and the quickest way to acquire peace and serenity in the short run.

Happiness can be found in committing ourselves to the needs of others.

The Dalai Lama is eloquent in describing this very simplistically.

The foregoing is a primary level introduction to Buddhism. It is not a religion it is a way of living and more a way of dying. It directs concentration away from our material consequence and towards our deeper consciousness.

Like all religions seem to do it operates on what Karen Brown in her book Great Transformation wherein she describes the Axial age so named by religious historian Karl Jaspers, as that period in which six great religious like movements formed around the basic rule known by us as the Golden Rule. “Do not to another what you would not have them do to you.” Buddhism was one of these movements.

Buddhism in the west encourages us to follow our own spiritual Mentors. Whether our mentors are Jesus, Mohamed, Moses or other (one of my favorites survives my Catholicism, namely, St Francis) it encourages us to follow their guide as we utilize the Buddhist Way. The Buddhist Way does not tie us to a Buddhist Spiritual Mentor, it consists of: Meditation, Exercise of love and compassion for all around us. It directs us individually to work as best we can with the circumstances in which we find ourselves in this life.

There is so much more! This but opens the door a crack.

This is of course my concept of Buddhism. It is the Buddhism I follow and work at remaining a Jew.

Boiled down for me it comes to this: Life can be a pain in the ass and often is. Our measure in life is to accept the inevitability of the pain occurring and endeavoring to make the best of it. This relieves the pain and by acceptance turns it in to a blessing. We must extend this out beyond us in service of all others. It is in this, through involvement with serving others that the greatest level of happiness is attainable by us while we are here in this life.


Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

FROM HERE I MUSE AND MEDITATE

Looking Out Through my Living Room Window

From the Observation Deck
Of my living room
I Watch
As if I am in
A Space Craft
Plying the Depths
As it passes through my
Universe of Time
mike donohue  2008

4. ADAPTATION TO ALZHEIMER'S, A FOUR PART SERIES

This is a The fourth of four essays about my experience adapting to my diagnosis of Alzheimer’s Disease (AD). The first is I AM AFFLICTED WITH ALZHEIMER’S DISEASE. This follows with 2. ALZHEIMER’S: A LITANY OF LOSS! 3. A DIFFERENT SORT OF LIFE 4. MY UPSIDE OF ALZHEIMER’S

MY UPSIDE OF ALZHEIMER’S


I concentrate on the admonition of my Doctor:

Take your medication. Eat right, exercise daily and participate in social, creative and intellectually stimulating activity. This will prolong your stay in the Early Stage of Alzheimer’s Disease.

I honestly believe this works. I seem to have more cognitive acuity, sharpness, than I did three years ago when I was first diagnosed. I have a far greater sense of peace coming from knowing what it is that makes things difficult for me, namely it is this disease, accepting it and working around it. It almost seems like when I hit an impediment and put my mind to working around it new pathways in my brain develop. This is consistent with organic regeneration that is possible with both the brain as well as with the circulatory system.

On being diagnosed, consistent with what I learned 30 years before in AA, I accepted the fact of having AD. I embraced it just as I embraced alcoholism, made the decision to do something good with it as fight it. The good I saw was to try and make my having the disease be of value to others. I could write and talk about the experience of having it and advocate for help for those dealing with it.

There is so much that needs to be done. So few affected by it have any idea how to cope with it. We who do have it are ideally positioned to help those becoming affected by it. Doing this has given me a real sense of purpose and fulfillment.

Being an introspective sort of guy I had been writing for some time on a lifelong issue of interest, namely “What’s it all About?” Adding the dimension of AD to the mix of my life already being dealt with gave new understanding to what my life is about. It came as revelation that defined and refined the purpose and pattern that I already saw taking form in the retrospective of my life.

I had concluded how key my alcoholism and recovery had been in my life. I saw how everything in my life leading to my recovery was purposeful in getting me to Alcoholics Anonymous (AA) where I learned the tools of recovery. I recognized how I used those tools I learned in every difficult event of my life to my advantage. With the acceptance of AD another realization unfolded.

I initially saw recovery in AA as an almost miraculous event. I could not quit! I was directed to turn the act of quitting over to my higher power. I was empowered to do what I could not do on my own exercise of will.

At the time seeing this power acting in me was mind shattering. As I went along I learned this formula worked with every difficulty I faced. I began to both trust and rely on it. It became something that seemed natural, although it remained beyond my understanding.

Utilizing the formula once more with AD it worked; it worked again. With my commitment that followed, doing for others, with continued study trying to understand it, with the help of two existential philosophers, Abraham Joshua Heschel and Martin Buber, a religious historian Karen Armstrong, particularly her biography of Buddha, I finally learned this process to be completely in the order of things of this world and beyond this world.

The way of Buddhism finally explained for me what it is all about. It is explained it in this simple aphorism:

Whatever joy there is in this world
All comes from desiring others to be happy.
And whatever suffering there is in this world
All comes from desiring myself to be happy.
SHANTIDEVA

Accepting my disease, using it to make a commitment to help others has produced a sense of peace and serenity I never knew possible for me. It is providing a fulfillment I had not had before this. Having it and using it in this way now makes sense of all of the events of my life leading to it. It makes sense finishing my life having this disease

It is in fact a second watershed. The first was my recovery in AA. The second was my acceptance of AD.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

This is a response to the comment of Rose Lamatt who had this to say about my post "I AM AFFLICTED WITH ALZHEIMER'S DISEASE":

Rose Lamatt said...
Hello Mike, I hope I don’t hurt your feelings with this question. Are you sure you were diagnosed right? Alzheimer’s? or could you have Alcoholic Dementia? I was a caregiver for fourteen years to an Alzheimer’s victim, and have volunteered, worked in adult day care, and assisted living facilities. I’ve only seen two people (men) in the last twenty-five years with Alcoholic dementia, and when I read your posts this is what came to mind. Both men were alive and vibrant, could converse and write, just like you. This is what makes it hard to believe you have Alzheimer’s. I guess in the long run it doesn’t matter, but if I remember correctly Alcholic dementia went on for 20+ years, when Alzheimer’s after two to three years there was a remarkable difference in the person, especially with conversing. If your diagnosis is correct, then I’d love to know what medication you are taking beside Aricept.

Rose Lamatt
Author of ‘Just a Word’ friends encounter Alzheimer’s and ‘Don’t Look Forward’ God is leading.

To Rose:

I have wondered and wondered about the relationship between alcoholism and my current symptoms accompanied by the diagnosis of AD. My answer to your query is this:

1. There was a 25 - 30 year interval between my use of Alcohol or Px Drugs in which my cognition was not in any way diminished. A very successful experience on the court.

2. When examined and when a full scale differential diagnosis was conducted, one of the factors given by me in history as an expected cause was my 20 years of abusive and addictive use of Px Drugs and Alcohol. I suspected that. They ruled that out as cause.

Do I question a professional conclusion that it was not a cause in spite of my belief that it most likely was?

3. I have apples or oranges, or maybe bananas! Dose it matter. I suffer dementia! It limits my performance in life substantially. Luckily it does not limit me any more than it does. It is getting worse. I intend to use the good time to talk about my experience of it as much as I can if it can in some way help someone else.

If anything I have a wonderfully high cognitive reserve with which to work. I thank my higher power for that and intend to use it as productively as I can. This is likely my last chance in this life to make good of the talents I was given to work this life.

I wish instead of the Alzheimer's tag we were all given simply a Dementia tag. I wish more that the Alzheimer's tag was given the broad classification of all dementia so we would have no problems of question and classification in the nature of "do I have AD or something else?"

When the question is asked it comes from the basic foundation of having some malady that produces symptoms similar to AD. So why not call it that?

Is it any more the social pariah to carry the descriptive reference, "Pssst! You know the poor thing has Alzheimer's tsk tsk!" To say “he is demented!” This is in some ways worse.

4. Alzheimer's has the notoriety of catching attention because of its impending endemic potential. It is also becoming more socially tolerable (would you believe it?) than being known as demented.

5. Because Of the high cognitive reserve evidenced in my writing and speaking as well as other areas of performance I again asked my neurologist 3 years post diagnosis when I was in for a follow up to my second Neuro Psychometric Exam.

He said in response to this inquiry: “You were originally diagnosed as having an atypical kind of AD. This explains the questions you have regarding the difference.” He went on to say: “Alzheimer’s is given to those who manifest a similarity of symptoms typical of what we have come to call Alzheimer’s. You have an atypical kind because it is not typical, that does not mean it is not Alzheimer’s. It means it doesn’t fit with the array of symptoms typical of typical Alzheimer’s. No two cases of typical AD are exactly the same. There is a greater similarity than dis-similarity between the symptoms of each when we classify them as typical symptoms.

Having ruled out all other possible causes or classifications of your symptoms, test results and history we maintain that your diagnosis remains the same, it is just dis-similar from the usual.”

He told me than to quit splitting hairs and get on with my acceptance of it, adding in his closing “Hey, weren’t you always a little different about most things?” Yes, he was so right.

Whatever I got it’s a bitch!

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

3. ADAPTATION TO ALZHEIMER'S, A FOUR PART SERIES

This is a The third of four essays about my experience adapting to my diagnosis of Alzheimer’s Disease (AD). The first is I AM AFFLICTED WITH ALZHEIMER’S DISEASE. This follows with 2. ALZHEIMER’S: A LITANY OF LOSS! 3. A DIFFERENT SORT OF LIFE 4. MY UPSIDE OF ALZHEIMER’S

A DIFFERENT SORT OF LIFE

The rules are changed. The parameters are significantly different. My style of living has been abruptly changed.

I cannot drive; I cannot bike; I cannot be left at home alone for any great amount of time. I can travel by myself locally by bus. I cannot travel alone beyond this lest I get confused in new and different circumstances.

I like to stay at home. There I have a routine in which I am comfortable. I get very uncomfortable when I am outside of my routine excepting when I am traveling. Traveling is great, but, I don’t like a lot of it. Once I thrived on taking trips. My wife Diane and I have traveled throughout the U.S. and many times overseas. Diane still enjoys it immensely I like it in smaller doses.

We had a winter place in Scottsdale AZ when I was first diagnosed. Before that we had a cabin in the woods up north in MN. We have maintained two living abodes for years. Not long after my diagnosis I realized it and so told Diane, this isn’t working, I need to live in but one place. We sold in Scottsdale and now live full time in Minneapolis.

When we do travel some of the time I have a difficulty with re-entry on returning home. I lose my calm, my comfort with my routine and surroundings. I become very agitated, anxious and depressed. I suffer a sense of disarray feeling like I am crawling out of my skin. This is extremely uncomfortable. I need to simply rest and take it easy until it passes. Rest will quiet me and then I am again in balance within a few days.

I need calmness about me. I cannot handle a lot of stress, distraction and interruption. I cannot handle complex tasks. On simple tasks if I am interrupted or distracted, I lose my place and have to start all over again.

Diane handles all of our finances now, does all of our scheduling, I simply work at keeping up. I am not good at initiating activities or engagements. I am limited in social settings because I can’t keep up.

This is the downside of coping. If I work with in my limitations I do pretty well. I can still read, write, socialize in a more limited way and I enjoy my days. I love to get out in nature, hike, snow shoe meet for coffee and have lunch with friends.

I have found an upside to my having AD that is very satisfactory. That will be the subject of my next essay.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

2. ADAPTATION TO ALZHEIMER'S, A FOUR PART SERIES

This is a The second of four essays about my experience adapting to my diagnosis of Alzheimer’s Disease (AD). The first is I AM AFFLICTED WITH ALZHEIMER’S DISEASE. This follows with 2. ALZHEIMER’S: A LITANY OF LOSS! 3. A DIFFERENT SORT OF LIFE 4. MY UPSIDE OF ALZHEIMER’S

ALZHEIMER’S: A LITANY OF LOSS!

This is the second in a series of four essays about my experience adapting to my diagnosis of Alzheimer’s Disease (AD). I first wrote of the initial experience of being diagnosed. This essay is entitled I AM AFFLICTED WITH ALZHEIMER’S DISEASE.

My first sense when the shock wore off after being diagnosed with Alzheimer’s Disease (AD) was a devastating sense of loss. So much was gone and would be no more. So much more loss was coming, losses yet to be. All of a sudden I felt more apart then ever. I had an overwhelming sense, it is different; things are no longer the same; I am not the same.

When a member of a family dies the family goes through fundamental change. The position held by the member who has passed away needs to be filled somehow. Each family member changes to accommodate this. If it is the father, a new head of the family emerges. It happens with the loss of a parent, a sibling, a child. Before the death the family operated in their relative positions in which they were accepted and relied upon. This was the family foundation. When loss of one position occurs that slot has to be refilled somehow for the family to continue functioning or it fails.

When a member of a family is diagnosed with AD it is like a death in the family occurring. AD is a family disease. All of the family is affected. The affect is different in each member. A shifting of responsibility does occur, relationship attrition will also occur. Things change dramatically.

The loss of position, responsibility and regard that occurs to the one afflicted with AD is profound. I realized I was no longer as I was. I was no longer in charge of family matters. I simply could not handle them. I had to turn them over to my wife, be vulnerable and rely on her.

In my case I could no longer drive. I loved to drive, drove everywhere. We traveled Europe. When we did I drove. Back roads, driving on the left, the more wild the traffic the more I loved it, I was in my element. “Call him Mario” my wife Diane would say.

Without wheels I was isolated. I needed a ride. How awful for the independent soul that I was. I found a sense of independence riding the bus and that replaced my loss of wheels a little. It was a challenge an adventure and above all it gave me freedom of movement.

Then they realized my tripping over things in plain sight, falling down then on to ER, were all a result of my AD. With that I was told, “Quit riding my bike.” This was demoralizing. I loved to ride and Minneapolis has some of the nicest bike paths anywhere.

Then I developed hip problems from falling down. I finally shattered my 12 year old hip replacement. I had to have it surgically corrected. They called it a hip revision. That is understatement of the century. The revision consisted of five and a half hours of grueling surgery in which they removed the shaft, the ball and the cup replacing them all. To do so they broke off half the femur, dug out the old cement, the deteriorated bone and put it all back together packing it with cadaver bone chips around new hardware, wired it all together than sewed me up.

My God, the trauma it caused my system. I was all but on my back for two months and the next two months later I could walk no more than for ten minutes. That’s it.

I haven’t seen the inside of a bus in five months. My home bound restriction has just recently been lifted. Thank you AD.
Other Losses

Isolation is my partner. A silent subtle abandonment takes place. Those around us pull back. This seems to occur for a variety of reasons.

I have been fortunate. Most of my friends accept the way I am and simply accept me.

Many of my peers with AD report something different: Old friends and acquaintances operate on the stereotype that if they have AD, , they are like standing in the corner drooling. There is nothing left there with whom they can communicate. Therefore they simply count the AD afflicted out, strike them from the list.

With others it is a little more oblique. They don’t know how to deal with someone with this disease; therefore they procrastinate doing anything at all. Then they get embarrassed by the lapse of contact and simply let it go and disappear from view.

Others are patronizing. They are over solicitous with care to point of awkwardness. They don’t seem to have a clue. We are still persons. Our integrity remains intact. There are a lot of us left that needs company, companionship, social and intellectual stimulation. We need this more than holding our hand crossing the street.

Family takes its hit too. Some members are great; they shift around accommodating the change of circumstance and extend their love and involvement. Some friends with AD have complained their children are dubious about the diagnosis and sometimes a few are downright hostile.

The dubious ones simply do not get it. “So Dad has this disease” they say. “He sure seems the same.” As I go along the discrete changes that occur are so gradual they go unnoticed. They would rather not deal with what they cannot see.

There are children who cannot accept it at all. The disease is a personal confrontation they do not care to have. It is too difficult to believe this could be happening. It is so fearful it is easier to deny. Either that or there is hostility of “How could you do this to me?”

So much is tied up in their personal image of parent they cannot accommodate that parent becoming less that the revered person he had been.
The activities I enjoyed have become limited.

I love to golf. Not at all good at it I nonetheless enjoy it. It was not difficult to drive to a course hit a few, play a few rounds if there were openings. I enjoyed going out with friends and worked at setting up these events. Then I had AD. I could no longer drive. I wouldn’t go out unless a friend called. Those calls waned away. My pride or sense of integrity keeps me from calling now. If I do the friend has to pick me up and bring me home. My wife wants to take me and pick me up. My pride gets in the way of this. I can’t stand having to be hauled around like a child. It is too difficult to get on the bus with my clubs and go out to the course. They therefore sit home as I do.

I was learning to play bridge and I loved it. I got AD and the learning foursome quit calling. It is true my abilities at the game were digressing as theirs were progressing. What could they do I couldn’t keep up? I feel no animosity just sadness, I could no longer handle it.

I was going to volunteer at the hospital. I thought better of it as I pondered having to tell them I had AD. They certainly would not trust me to wheel a patient to a destination for fear I might get lost even though my sense of direction is very intact. What would there lawyers say if anything happened. What would they say if they had me doing anything as a volunteer?

As soon as I am physically able to take the bus I am determined to find something in a safe setting, safe for the organization for which I volunteer and safe for me. Nonetheless this can be such a pain in the butt!

I joined a group that was providing respite time to caregivers by taking the AD afflicted in for the day. The promise was good fellowship, enjoyable activities interesting and supportive environment.

When it turned out to be a baby sitting exercise I was disheartened and dismayed. It offered us no respect; no attempt was made to interact with us on an intellectually compatible level. We were assumed to be incompetent. Sitting in a chair waving arms to exercise, going outside and throwing lawn darts as a group, watching re-runs of I Love Lucy and the Honeymooners, it was all just too much!

THE WORST LOSS

AD performs a social and familial emasculation of the self. The use of the word emasculate is harsh. Harsh as it is it best defines the sense of having the disease. There is an undeniable association of loss of manhood associated with how I relate once classified as AD Afflicted and after accepting the limitations it has had on my life.

I am no longer the bread winner, the head of the family, the last word, the one they could all rely on, the one who would take care of everything. I have been demoted to a dependent level depending on all of those around me.

This is often subtle but is still too real. This is my very deep personal response to who I am and what I am. This may be true of men and not women. It may only be my personal reaction, the wound to my pride of place in life. I am no longer that hot shot trial lawyer in a three piece suit driving his Mercedes. I am just another guy on the bus. I am not the father to be consulted or the husband to be deferred to. I am taken care of instead! God, that hurts and there is nothing I can do about it. Thank God there are those who do care and are willing to take care of me!

It ain’t no fun having this disease! It is nonetheless livable. I told a guy at a class when he stated the worst he could ever face is getting Alzheimer’s. I popped back, “Oh Howard, It’s not so bad having it as worrying about getting it.”

This has been my lament of losses. I have AD. It has caused me countless loss. When you stop and look at life particularly from my view point you realize nothing in life is free. Be happy with what you had, with what you were, with what you did and then get on with it. Make the best of what you have now. That’s the ticket!

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

1. ADAPTATION TO ALZHEIMER'S, A FOUR ESSAY SERIES

This is a The first of four essays about my experience adapting to my diagnosis of Alzheimer’s Disease (AD). The first is I AM AFFLICTED WITH ALZHEIMER’S DISEASE. This follows with 2. ALZHEIMER’S: A LITANY OF LOSS! 3. A DIFFERENT SORT OF LIFE 4. MY UPSIDE OF ALZHEIMER’S

I AM AFFLICTED WITH ALZHEIMER’S DISEASE


It began like this:

I felt my wife was nagging me about my driving; there was nothing wrong with it. I agreed to a meeting with my Doctor to discuss her complaints. He told me not to drive.

To foil the view of my wife and doctor and show them how wrong they were I took a simulated driving test at Sister Kenny Institute in Minneapolis. I failed it miserably. It was all downhill after that.
After many examinations ending in a Neuro Psychometric test of some four hours I was diagnosed as having an A-Typical Alzheimer’s. They explained it was A-Typical in that my memory was pretty good. But there were other faults. These deficiencies suggested damage in the front and right side of the brain. This affected my ability to multi-task, difficulty in what they called executive functioning and in my peripheral visual perceptive ability.

The perception deficiency explained why I was screwing up driving, why I was falling after tripping over things in plain view. The rest explained why I couldn’t handle money or bank accounts, couldn’t keep up in work and in social settings. It explained why I could no longer handle stress.

For 43 years I was a successful trial attorney, ran a decent sized law office and was skilled in the trial of cases. A lawsuit calls on great deal of skill in multi tasking. I could keep countless balls in the area, try a complicated case, manage my office, supervise the sixteen lawyers working for me and be the primary rainmaker for a firm handling cases nationally.

That was then this is now. Could I do that now? Not a chance. All of the skills I had to do what I did are gone. That is one loss of many that comes with Alzheimer’s Disease (AD). There are so many others.

I was diagnosed as Early Stage at the age of 69. This diagnosis came out of the blue, without a warning, I was completely blindsided by it. Once the diagnosis was made I was able looking back to see it developing with me over a period of time. That period it was in development explained many experiences I was having. I noticed I was not performing as well as I did usually. It took me more time to do things whether at home or at work. I was uncomfortable in social settings, could not keep up in conversation. There was so much about which I could not keep up and was constantly tired out and frustrated trying to do so.

I had a sense of relief when I got the diagnosis. This explained why I was falling behind, why I was in such stress in a social setting, why every thing became so hard. I was relieved, it was something I could do nothing about and it made no sense to keep trying. It was a kind of surprise when this happened. I was amazed because things started to get easier.

As an example: I always found public speaking easy and enjoyable. In the years leading to diagnosis I found I no longer cared to speak publicly, I found it painfully stressful. I first told the folks at Alz.Org in Minneapolis when I volunteered that I could not do any speaking. I did have occasion to speak about my Alzheimer’s to a group and was pleasantly surprised how well it went and how enjoyable it was. After my diagnosis and the relaxation of knowing why I found things difficult my impediment over speaking passed away.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

The Principles for a Dignified Diagnosis:

The National Advisory Board for Alzheimer's Association recently formulated the following principles encouraging a different approach taken by many in the medical and Health Care Community dealing with a diagnosis of Alzheimer's. These Principles are directed to accompany the 10 WARNING SIGNS OF AD encouraging early detection and early diagnosis. I was happy to be a member of the group formulating both and thank Alz.Org for publishing them.

THE PRINCIPLES FOR A DIGNIFIED DIAGNOSIS:

1. Talk to me directly, the person with dementia. I am the person with the disease, and though my loved ones will also be affected, I am the person who needs to know first.

2. Tell the truth. Even if you don't have all the answers, be honest about what you do know and why you believe it to be so.

3. Test early. Helping me get an accurate diagnosis as soon as possible gives me more time to cope and live to my fullest potential and to get information about appropriate clinical trials.

4. Take my concerns seriously, regardless of my age. Age may be the biggest risk factor for Alzheimer's, but Alzheimer's is not a normal part of aging. Don't discount my concerns because I am old. At the same time, don't forget that Alzheimer's can also affect people in their 40s, 50s and 60s.

5. Deliver the news in plain but sensitive language. This may be one of the most important things I ever hear. Please use language that I can understand and is sensitive to how this may make me feel.

6. Coordinate with other care providers. I may be seeing more than one specialist — it is important that you talk to my other providers to ensure you all have the information so that changes can be identified early on and that I don't have to unnecessarily repeat any tests.

7. Explain the purpose of different tests and what you hope to learn. Testing can be very physically and emotionally challenging. It would help me to know what the purpose of the test is, how long it will take and what you expect to learn from the process. I would also appreciate the option of breaks during longer tests and an opportunity to ask questions.

8. Give me tools for living with this disease. Please don't give me my diagnosis and then leave me alone to confront it. I need to know what will happen to me, and I need to know not only about medical treatment options but also what support is available through the Alzheimer's Association and other resources in my community.

9. Work with me on a plan for healthy living. Medication may help modify some of my neurological symptoms, but I am also interested in other recommendations for keeping myself as healthy as possible through diet, exercise and social engagement.

10. Recognize that I am an individual and the way I experience this disease is unique. This disease affects each person in different ways and at a different pace. Please be sure to couch your explanation of how this disease may change my life with this in mind.

11. Alzheimer's is a journey, not a destination. Treatment doesn't end with the writing of a prescription. Please continue to be an advocate — not just for my medical care but for my quality of life as I continue to live with Alzheimer's

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

EARLY ALZHEIMER'S DIAGNOSIS REDUCES COSTS

Published: May 25, 2009 at 2:01 PM UPI.com

The way to fight Alzheimer's disease is to intervene decades before someone demonstrates symptoms, U.S. researchers suggest.

"The future of this disease is to intervene decades before someone becomes symptomatic. This analysis says you can save literally billions of dollars in long-term care costs if you can intervene at an earlier stage," study co-author David Weimer of the La Follette School of Public Affairs said in a statement. "What you don't know costs a lot of money when it comes to this disease."

The researchers analyzed two types of interventions following diagnosis -- patient drug treatment and caregiver-support programs.

The study, published in the Alzheimer's & Dementia: The Journal of the Alzheimer's Association, found each intervention provides positive net savings, with the greatest benefits achieved using a combination of both.

Currently, Medicare does not support caregiver-intervention programs and even accounting for implementation costs, the analysis suggests it would result in net savings to governments by reducing the care burden on medical systems.

The Wisconsin Medicaid program spends almost $500 million each year on nursing home care for 11,000 dementia patients -- a tiny fraction of the estimated 160,000 affected people in the state, but caregiver support is sparse, Mark Sager of the University of Wisconsin-Madison School of Medicine and Public Health said.


© 2009 United Press International, Inc. All Rights Reserved.

10 WARNING SIGNS OF ALZHEIMER'S:

1. Memory changes that disrupt daily life

One of the most common signs of Alzheimer's, especially in the early stages, is forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own.

What's typical? Sometimes forgetting names or appointments, but remembering them later.

2. Challenges in planning or solving problems

Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before.

What's typical? Making occasional errors when balancing a checkbook.

3. Difficulty completing familiar tasks at home, at work or at leisure

People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game.

What's typical? Occasionally needing help to use the settings on a microwave or to record a television show.

4. Confusion with time or place 10 warning

People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there.

What's typical? Getting confused about the day of the week but figuring it out later.

5. Trouble understanding visual images and spatial relationships

For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror.

What's typical? Vision changes related to cataracts.

6. New problems with words in speaking or writing

People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock").

What's typical? Sometimes having trouble finding the right word.

7. Misplacing things and losing the ability to retrace steps

A person with Alzheimer's disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.

What's typical? Misplacing things from time to time, such as a pair of glasses or the remote control.

8. Decreased or poor judgment

People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean.

What's typical? Making a bad decision once in a while.

9. Withdrawal from work or social activities

A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced.

What's typical? Sometimes feeling weary of work, family and social obligations.

10. Changes in mood and personality
The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone.
What's typical? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.

The difference between Alzheimer's and typical age-related changes

Typical age-related changes

Poor judgment and decision making

Making a bad decision once in a while

Inability to manage a budget

Missing a monthly payment

Losing track of the date or the season

Forgetting which day it is and remembering later

Difficulty having a conversation

Sometimes forgetting which word to use

Misplacing things and being unable to retrace steps to find them

Losing things from time to time

Report on Panel before Nat. Alz.Org and AoA Conference in Washington DC

6/4/2009

My wife Diane and I, on June 3, 2009, participated in a panel to address the specific needs of Early Stage AD in Washington D.C., at a conference conducted by the Alzheimer’s Association and the Federal Administration on Aging (AoA).

The panel consisted of three AD Afflicted persons and their Caregivers. The three with AD were members of the National Alzheimer’s Association Advisory Board. They were Susan Pointer, Monroe LA, and her daughter; Karen Zimmerman, Fairfax County VA, and her husband; and Diane and me, Minneapolis, MN.

It was an honor to be able to personally present our views and opinions of the special needs of those of us in Early Stage AD and our caregivers. It was also a wonderful opportunity to say directly that which too often is filtered through the views of third parties reporting what they believe we need.

The panel was moderated by a wonderful person, Lisa Gwyther, who is the Director of Research at Duke Bryant Alzheimer’s Research Center, Durham, N.C. There were around 100 attendees were from all over the U.S., National Alzheimer’s Association as well as local chapters and representatives of AoA. The folks involved have been charged with investigating the special needs of those affected by Early Stage AD. As such it was just a fantastic opportunity to be heard.

We urged many programs some of which were:

The significant need of education for the following:

To overcome the stereotype of any person with AD being one who is unable to take care of her/him self and is evidently confused and demented. The public needs to know Early Stage Normal is looking and acting like everyone else. It is being functional and able to take care of ones self, productive, needing yet to be part of the main stream.

Early Onset Alzheimer’s Disease (EOAD) needs more attention than it gets. The public needs to know it is different than the ordinary concept of it is an old person’s disease. It can and does strike young people, forty, fifty, and sixty, in their prime. It removes the person from the work force and leaves families adrift. It is a calamity that needs special attention because of its tragic personal and community impact.

If persons in Early Stage AD (ESAD) and Early Onset AD (EOAD) get the kind of help that is needed they have a far better chance of prolonging their time in Early Stage. This makes a distinct contribution to their quality of life and that of their families and loved ones. It makes the same contribution to the community in saving the cost of care required by the later stages of this dread disease.

AD in its Early Stage is not as some commercials portray. (Aricept’s commercial were cited as an example). Commercials often show a person with AD in need of medication is already significantly confused and limited. Medication is needed to prolong Early Stage while those of us in it are functional and not as depicted in this and other commercials. The commercials like this feed the stereotype of people with the disease as baffled and incapacitated.

This led into a discussion of the value of the 10 Warning Signs supporting the proposition of Early Detection Matters and the Principles for a Dignified Diagnosis both of which have been recently adopted and promulgated by the National Alzheimer’s Association.

Early Diagnosis is of benefit to both the patient, their loved ones and the community at large. It gets help sooner and secures a better quality of life longer for those affected. It also saves on Cost of Care in the long run.

A Dignified Diagnosis respects the dignity of the person afflicted with AD. It also circumvents the other stereotype that is often the special province of the Health Care Community which can be reluctant to hang the stigma of a diagnosis on a person because of what that person faces in society with the diagnosis. In these cases more often than not treatment is not provided when it can do the most good. It comes when a person is evidently afflicted often in the mid or late stages when little more than keeping the patient comfortable, distracted and subdued can be provided.
Five critical needs by people affected by Early Stage Alzheimer’s Disease were presented:

First Stop Programs: A Place where patients just diagnosed can come and learn how they and their families can deal with AD from those of us with it.
Support Groups: A Place where Early Stagers agree to attend with regularity and be open to the public designed for Early Stage offering support, camaraderie, and encouragement.

Creative Programs: For persons in Early Stage structured so that they are social, creative and intellectually stimulating such as to capture a person still functional and in need of more than the distraction afforded by most day care programs.

Volunteer Coordination: A central source to find volunteer opportunities for Early Stage AD where they can be directed to do volunteer work in the range of their respective ability.

Structured Wage Earning Workgroups: Sheltered Workshops for Early Onset AD’s to provide both work and wage when they have lost their jobs, their dignity and still need gainful employment.

There is a growing body of evidence that says that a regime in addition to medication can help delay the progression of the disease consisting of:

Daily Exercise
Eating Right
Social Interactions, Creative and Intellectually Stimulating Activities

With the coming escalating incidence of AD occasioned by the growing numbers of Baby Boomers coming of Senior Age and folks living longer there is likely to be a catastrophic burden placed on Health Care and the overall Cost of Care.

Finding a Cure is possible but needs time for discovery. The increase in Care of Early Stage will help to buy that time and save the intolerable expense of not doing it.

The presentation ended with a plea for help made to the people in attendance and the public at large to give those of us in Early Stage affected by AD more help designed to prolong our stay in Early Stage. We are competent and able to do a good deal of the work but we absolutely need the assistance and the organizational skills of the Care Community.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

I AM TIRED OF HEARING, "YOU ARE SO SHARP, YOU CAN’T HAVE IT!"

I AM TIRED OF HEARING, “YOU ARE SO SHARP, YOU CAN’T HAVE IT!”

I am sharp because I am in the Early Stage of Alzheimer’s Disease (AD)! That’s the way we are. This is normal for Early Stage.

When you say “You can’t have it” Though you mean well, you feel you are re-assuring us we don’t come off as bad as People with AD are supposed to look, you have to know what a put down it is.

The common misperception about people with AD is this: If you have AD you must be drooling, standing in the corner unable to find you directions out of it. Because this biased perception of what we are we are often outcasts or patronized. Please help us overcome the public stereotype of what we are supposed to be! Certainly, those of is in the Early Stage of this disease do not show it. We come off as being very normal, able to think, do a lot of remembering, find our directions, carry on a conversation and do everything else we could before we got it.



The only change is this: We have some limitations. Because of these the Health Care Folks can tell us, yes we have it, yes it will get worse, yes it will ultimately cause you to die. You can hold it off from becoming worse if you Take Mediation, Eat Right, Exercise Daily and engage in Social, Creative and Intellectually Stimulating Activity, this will prolong your stay in the Early Stage.

The put down of telling us we can’t have it is this:
• I have gone through the heart wrench of being diagnosed with it.
• I have had to deal with the absolute shift in who and what I am because of it.
• I have had to accept the tragedy of what it does now and will in the future visit on my family and loved ones.
• I have had to learn to live with the ultimatum this diagnosis serves. “You have a terminal disease, one in which you mind goes by degrees followed by your body inching its way to death that is the absolute end result.
• I will suffer this emasculation: While I have it I will need to depend on others more and more, I cannot now do everything else without the help of a caregiver, which will become more and more of a need as I progress to conscious oblivion, helplessness and death.

This is no exaggeration! Thank God I come off as good as I do. I still have a quality of life that I cherish and want to prolong.

To do this I need you to:
• Love me, love me a lot I am suffering and I need your support! Accept me as I am. Trust me, I do have this awful disease, I do not want it but am trying to make the best of it. Please don’t make it harder for me by discounting it or denying it!
• Spend time with me. I love social time, activity and the camaraderie of friends and family. I love to do things. I will be a little different, particularly as time goes by. I try to work around it, overlook it when I slip. Above all make a place for me in your lives. I need it more than I ever did.
• Tell everyone you know I have this disease and I do pretty doggone will with it. We suffer a stigma because of our disease. We are with it, with you and want to do things, like volunteer, be in organizations, and participate in everything as a normal person. We do not want to be left on the shelf or put into a warehouse as too often a day care, assisted living or nursing home has become to be for us.

With acceptance we are more likely to get the kind of help we need, like Eating Right, Daily Exercise and having available Social, Creative and Intellectually Stimulating Activity, both organized and self provided, which along with the medication we have available will prolong us in the Early Stage.

If this can be made to happen this improves our quality of life that has been so damaged by our diagnosis. It truly assists our families and care givers because we can continue helping ourselves longer. It greatly benefits the community and the country because it will be longer before the expense of outside help or institutionalization is needed.

Mike Donohue
My Blog: AGING IN PLACE http://im-mike.blogspot.com/