LOOKING INTO THE EYES OF ALZHEIMER'S

LIFE IS FOR THE LIVING

LOOKING INTO THE EYES OF ALZHEIMER’S

“Many illnesses deprive a person only of the present: one becomes ill, feels more or less miserable, depending upon the nature and severity of the illness, seeks treatment, and recovers after a relatively brief period of time, suffering the loss only of that time when he or she was actually ill. Other incurable illnesses take away not only a person's present but also the future by prematurely ending the individual's life. Alzheimer's disease however, robs the person not only of the present and the future, but also of the past, as all memory of prior events, relationships and people slips away.”

These words, recorded by Professor Stephen Sapp of the University of Miami, Florida, in an article entitled, “Living with Alzheimer’s”, crystallize precisely and accurately the disease scourge that is Alzheimer’s. Originally described by the German Psychiatrist, Dr. Alois Alzheimer, it is the most common form of a group of disorders called Dementia which has no cure, causes progressive deterioration and is invariably fatal, with death resulting from external factors such as pneumonia, septicemia or organ failure.

Dementia is a disease that robs a person not only of their memories, their intelligence, their reason and their personality, but also of the most important component of their existence, their human dignity. As the disease progresses, the patients are consumed in a complex and confusing dilemma where simple tasks give rise to monumental concerns, especially when there is just enough insight that something is just not right. As it progresses, the disease gives rise to altered perception and interpretation leading to unreasonable actions and behaviors. This is made worse by our inability to understand the behavior and our tendency to become increasingly critical and antagonistic. The consequences of this situation serve only to aggravate an already difficult and regrettable state.

As a physician with more than fifty years of active practice, I have seen and dealt with a good share of patients in various degrees of Alzheimer’s and, as would be expected, have had to deal with its effect on the patient as well as on members of the immediate family. Yet it would be fair to say that, despite all these years of direct experience I, like all my medical colleagues, recognize how much more we need to know about this disease. Although we are able to recognize and demonstrate the profound changes in the appearance of the individual’s brain as it progresses to the advanced stages, there is still a great diversity of opinion among experts as to how much someone’s understanding and recognition remains as the disease continues on its relentless path to oblivion. The real truth is that, despite extensive, on-going research by centers all over the world, we are still a very long way from understanding, far less reversing this disease process.

Society in general has developed a very ambivalent approach to coping with this increasing problem and in fact prefers to ignore its existence as much as it can. The majority of physicians, aware of the complex, time-consuming and unrewarding nature of the disease, prefer to avoid commitment as far as possible, and at best, provide episodic care as needed. Family members and caregivers, in the absence of adequate guidance on this subject and intimidated by the confusing presentation, are left to their own resources to provide appropriate care and to avoid doing anything to aggravate the situation. This unfortunate situation is further compounded by the increasing fragmentation of the extended family and the economic demands on the individual members, which serve to restrict opportunity to do more. The result is that Alzheimer’s disease, quite unlike any other disease complex, is notorious for the very wide range of care provided to the unfortunate victims. This range spreads the full continuum from the very best care possible, to the very worst and at times, to inhumane neglect. Further, unlike most other medical disorders, the situation is not necessarily improved with increasing socio-economic status.

Everyone who has been in a position to observe victims of this disease will attest to the fact that even in the advanced stages when the patient is rendered increasingly helpless, mute and uncommunicative, there are periods, sometimes brief and short-lived, when they appear to recognize and to understand and to show appropriate responses. I, like the great majority of my colleagues, am convinced that these islands of clarity, these moments of awareness when the patient is able to escape the walls of their prison and for a fleeting second, join the world of reality is evidence that, despite all the apparent advances so far achieved, we are still very far from truly understanding the working of the brains of people suffering from Dementia and therefore will find it difficult to use the label “permanent” or “irreversible.” Clearly there is urgent need to understand and to educate society in all the aspects of this profound mind-destroying disease. Equally, it should serve to negate the argument, becoming increasingly popular and widely supported, to justify the statement that we are “wasting valuable resources and personnel in such hopeless endeavors.”

Yet as you speak to relatives and caregivers who spend many hours in caring and sharing their lives with the defenseless victims of this vicious disease, you occasionally encounter certain times and occasions when you are overwhelmed by the aura of peace and love that radiates. These occasions come as a breath of fresh air to the physician and serve to reinforce his confidence in the essential goodness in mankind. I myself will always remember a young woman, Kim, who has chosen to devote her life to providing as much comfort and support as she possibly can to counteract the vicious, destructive consequences of this cursed disease. The peaceful acceptance and the joyful optimism she brings with everything she does is indeed a blessing of love, and a lesson to us all. In a very small but meaningful way, I see these acts as true and genuine manifestations of the love that Christ spoke to his disciples and expressed so selflessly by such great people as St. Francis of Assisi, Blessed Teresa of Calcutta and Albert Schweitzer, and by so many others who quietly serve in this thankless setting.

In my own life, these last few years have been spent in the difficult and unfortunate circumstances of having to witness the steady and progressive decline of someone who meant a great deal to me. I saw the relentless, progressive disintegration of a beautiful and vibrant personality as it descended into the hell of oblivion. But I also saw the single-minded dedication and the blazing love that emanated from the eyes of the children and the caregivers and the profound peace and love that pervaded the whole environment, and I am humbled by their devotion.

Unfortunately, and very tragically, this is by no means the prevailing attitude and behavior available to the great majority of patients, who by and large, have to spend their waning years lost in a cloud of apathy. There is still a great need and an urgency to educate and inform society in general on the fundamental needs and expectation. To this end, the National Institute on Aging in 2000 published an excellently written and informative booklet entitled Caring for a Person with Alzheimer’s Disease which I strongly endorse this as required reading by everyone. In addition, the local and national Alzheimer’s Associations provide a good deal of information and support to family and caregivers at a local level.

Against all this unfortunate and painful suffering, I am left with great disappointment and an unyielding indictment against a society such as this, that is much more concerned with glorifying young athletes with absurd and obscene remunerations, and of entertainers who accumulate large amounts of wealth and reward us with their bizarre immoral and sexual encounters. Yet we find it difficult to provide the necessary education, support and resources to help our less fortunate brothers and sisters to navigate through the raging fires of one of the worst and most soul destroying disease.

In the end, the tragedy of Alzheimer’s disease is as much a matter of medical management as it is a reflection of our personal and societal responsibility. In this context, both as a physician and as an involved member of society, I cannot possibly do any better than to remind you of a quotation of Blessed Teresa of Calcutta, whose words as profound as they are relevant:

“Speak tenderly to them.

Let there be kindness in your face,

in your eyes, in your smile,

in the warmth of your greeting.

Always have a cheerful smile.

Don't only give your care,

but give your heart as well”.