This post is longer than usual
you may want to read it in parts
If a wheel isn’t broke, don’t fix it. If it is, do. If after fixing it will neither turn nor roll, replace it. This is fundamental!
You encounter a wheel when diagnosed with Alzheimer’s Disease (AD). Is it a broken wheel or is it not. You face the questions, is it broke; do you fix it; do you leave it alone?. What follows attempts to answer these questions.
I. INTORDUCTION
AD presents an altogether new world to those who enter it. It is neither like nor equivalent to anything experienced before. Its rules are different; its manner and ways are not even similar. Bewilderment greets all who enter AD World, both those afflicted and those affected. Unprepared having no knowledge or training, we who enter it have no clue how to cope with all the difference with which we are faced.
We find on entry into AD World circumstances have changed diametrically. Most everything we knew, gotten used to, concentrated our lives on have radically shifted on us. We are no longer what we were, our roles no longer fit. Where once we were independent we need help and understanding from others. We become vulnerable, have needs we cannot fill completely requiring others to do so.
Those who enter AD World with us, affected but not afflicted, might just as well be afflicted because their burden increases. They lose us having to do it all themselves. This adds to whatever they needed to do beforehand. This then multiplies by all they must do for us because of our illness and myriad limitations.
That is the practical aspect.
II. LOSS
The deeper more anguishing part is a list headed by loss. Our disease is terminal. Yes, it kills us! That is the ultimate end of it. Nothing quite as agreeable precedes that loss. It is the easy part; easy in its finality.
Before AD kills us we live a life of steady, progressive, unremitting loss. The losses are measured in less then gigameters slowly gnawing away at out vitality and acuity. Our bodies go; our minds go, bit by bit, leaving confusion filling the vacuum made by what is gone.
Our affected loved ones are there to keep count, loss by bit of loss as our deficiencies appear one after another. Their burden as caretakers increase; their sense of their loss as those who love us magnifies. Theirs becomes a world of caring, serving, being there taking up our slack as the slack broadens and magnifies. Often it seems to them they are but there to clean up the mess.
Theirs becomes a world of grief, grief for what was, what is, what will come soon enough. Their life is lonely; they have no time for themselves, for others, family, friends, there is not enough of anything for them.
In this world our funds decrease our costs increase. First we face being unable work, we lose our ability to earn a living. We become a convenient excuse for our employers to let us go, put us to pasture. The salary of the one afflicted terminates. Often the caretaker’s salary is reduced in whole or in part because of the added time and presence required by caretaking.
Income falters, fails, leaving not enough to cover the same budgetary expenses as existed before, leaving little or no source for the additional cost of care, medical and medication expense. The costs build as needs increase. Some of it is covered by insurance, most of it is not.
The cost is increased by home care, day care, assisted living and nursing home care, none of which is covered by Medicare or Medicaid unless your assets are insufficient. Long term care insurance coverage will cover to the extent premium is paid for sufficient coverage. The extent of coverage is directly measured by the premiums paid for such insurance.
Without programs or insurance to cover these costs they are the obligation of the one requiring it and their spouse. This obligation is mutually that of the spouses together; it continues until their entire estate is reduced to just slightly over $100,000. This leaves the caretaker of the pair nothing to live on after basic budget expenses which then take all that is left.
The financial jeopardy of the disease living in AD World is overwhelming.
III CHANGE AND STARTING OVER
Nothing is as it was; nothing that was remains. We all come into this AD World as we did on birth, naked as we were then; we have to learn once more how to fathom this new and changed world. We are given the special handicap of everything skewed and made more difficult by our limitations, by our circumstances and by the need of doing more as we have less capability with which to do it and survive.
When diagnosis takes place, when the initial shock and grief spend themselves out, those affected, which includes the one of them afflicted, are faced with assessing, evaluating and determining how best to deal with all that is new before them. The task is gigantic. It requires choices, options requiring new methods to cope with what has happened so abruptly and so dispositively.
It is in this period the future can be decided by the choices made and the reasons for making them. They are the seeds of what is to be while occupying AD World.
IV. TIME FOR CHOICES
The first choice is between lamenting the loss so rudely imposed, or, accepting and choosing to make the best of it. The choices that follow are determined by those made leading to it.
If to lament is the choice made, none of the choices that follow are nice or easy. This choice compares to holding your hands up to block a massive tidal wave about to roll over you.
The choice to accept and make the best of it offers better alternatives. In many instances the choices are redemptive in form and affect. The principles embedded in the concept of “Winning by Losing” can come into play and offer their own reward. The concept behind winning by losing is this:
After you have lost everything you have nothing more to lose. That leaves you positioned to gain everything else! Sounds weird? Think about it! You are finally free from having to hold on to whatever you already have. All you need do is look for what is next.
The recognition of this liberty offers more relief than anything else I know.
Keep this in mind as well: the lives of all affected that have entered AD World with you are also tempered by the choices you make.
Getting to that point of making choices is arduous like nothing before it. It exhausts all of our talent yet determines our future which can be made to last longer and be better based on how we handle it. Our treatment of it can both set the time of it and the quality of that time while in the AD World.
V. FROM AD WORLD WITH LOVE!
The object of this essay is to inform and enlighten all who read it. It is about our experience in AD World, what we face, our needs and what would best help us. It is written by authors with AD who are blessed with sufficient cognition remaining with them making it possible to think through and write about all of this.
We are experiencing the rewards afforded in winning by losing. We are committed to helping to make the world better for those many people who have or soon will have to deal with our disease. It is not only written for them but for all who will be affected, if not directly, indirectly, because of the catastrophic epidemic this disease will soon become. It is in this we are paid back with the bountiful reward of satisfaction having made sense of our having been stricken with this disease.
VI. THE CATASTROPHE OF EPIDEMIC PROPORTION IS NOW IN PRCOESS!
The number diagnosed with this disease increases with better tools for diagnosis and a growing trend to seek actively to diagnose AD in its early stages in order to treat it better. Each year as medical treatment improves and reaches more people; more people live longer than the year before. That is its natural increase.
It is then complicated in epidemic proportions resulting from the increase of those entering that age of higher risk of getting the disease, namely, age 65 and over. Reaching the high risk age starting this year, 2011, is comprised by the group designated the Baby Boomers because of the Bulge in population number this group produced in the years immediately following WWII. This creates further increase which will be exponential in its growth in seniors 65 and older.
This is all occurring in a social and political climate of cut back. With cut back in funding, cut back in programs, little is left for the needs of AD which are becoming increasingly urgent.
In this environment one might ask why support people affected by AD? Why should we affected by AD expect anything? Why should the plight in AD World be different than the many other catastrophic illness contracted by so many other lives?
Not much should be expected! Each catastrophic illness other than AD is its own calamity many with even greater devastation. With many of these illnesses society has in place programs and facilities for care. Treatment and care are better defined for these with established methods of remedy and relief all of which does not exist with AD.
We are doing little more than feverishly raising money to find a cure. Cure to date, after many years of investment, has eluded us completely. We are no closer to finding a cure than when folks supporting AD first started looking.
We have no greater idea of what causes AD, or what mechanisms produce the brain damage that results. For reasons of classification AD is looked on as one set of descriptive symptoms which incorporate all of the disease.
This is stymied by the same paradox the medical and scientific field faced in dealing with pre-natal developmental disabilities. With the pre-natal classification it has been said often, there are as many different kinds of disability as children born with a pre-natal developmental disability. The same could be said of AD, suggesting there may be as many different kinds of AD as people with it. This being the case a multi-pronged medication to cure approach will be needed before anything gets off the ground.
The statistics makes it urgent. The number of people now affected, the expected escalation of numbers getting AD, the continued escalation in the cost of care and failure to reach any economy in care required as the numbers grow, these all add up to coming catastrophe.
The devastation is a terrible for those with AD. But it doesn’t stop there. The cost cannot be borne alone by the families affected. Sooner than later the cost of care will bankrupt those families. It does not stop at the family line however. After it exhausts family assets it encroaches on everyone else to bear this cost.
When a person succumbing to the physical and mental deterioration the disease produces before it kills them, these persons need professional care and often institutionalization. When the money runs out the need of the help does not. This continuing need then becomes a social cost. AD is now at the top of the list of diseases in terms of most costly illnesses. The numbers of increase multiplies the total to the point that their expense will overwhelm all sources public and private.
A new report from the Alzheimer's Association shows that in the absence of disease-modifying treatments, the cumulative costs of care for people with Alzheimer's from 2010 to 2050 will exceed $20 trillion:
Alzheimer’s Boomers Report – 2011 Generation Alzheimer’s The Defining Disease Of The Baby Boomers, page 3:
- In 2010, Alzheimer’s and other dementias cost American society — families, insurers and the government — $172 billion.
- In 2050, those costs will increase to over $1 trillion (in current dollars).
- Over the next 40 years, Alzheimer’s will cost America over $20 trillion, enough to pay off the national debt and still send a $20,000 check to every man, woman and child in America.
- Between 2010 and 2050, the costs to Medicare of caring for someone with Alzheimer’s will increase over 600 percent — and the cost to families in out-of-pocket costs will grow more than 400 percent.
- A person with Alzheimer’s disease on average, costs Medicare three times more someone without the disease.
There is no way the crippled economy of our country will be able to handle this, less likely will any other units of government be able to do so. Between the wars, the deficits, the collapse of the economy in 2008, the listless recovery that has followed, the AD Affected together with everyone else in this country will be unable to meet the emergency. This truly adds up to an Armageddon like event in the making.
There is no recourse remaining. None, unless we find another way to provide for the consequences of what is soon to happen. It is at this time we must make the assessment.
Is the wheel broken? Can it be fixed? If not can we replace it?
The balance of this paper becomes a series intended to seek solution.
