LIVING WITH DEATH AND DYING(III) An Overview “...when we finally know we are dying, and all other sentiLIVING WITH DEATH AND DYING (III) - An Overview

LIVING WITH DEATH AND DYING(III)

An Overview

“...when we finally know we are dying, and all other sentient beings are dying with us, we start to have a burning, almost heartbreaking sense of the fragility and preciousness of each moment and each being, and from this can grow a deep, clear, limitless compassion for all beings.”

These words recorded by Sogyal Rinpoche, the world-renowned Tibetan Lama and Buddhist teacher, in his highly acclaimed publication entitled “The Tibetan Book of Living and Dying”, simply and effectively describes that area of vague and indescribable uncertainty through which we all travel, in one way or another, as we journey on that final road.

Whenever I think of this subject, I am always reminded of a time, many years ago when as a young, relatively inexperienced physician I shared a particularly harrowing and anxious period with a very close friend and relative. He had been diagnosed with a very serious, often fatal septic condition and there was some doubt about survival. When he was subsequently asked to recall how he felt during that very difficult and frightening experience, he described a series of stages which to me were almost identical to The Five Stages of Grief so beautifully explained by great Swiss-born, American Psychiatrist Dr. Elizabeth Kubler-Ross in 1969. Even today, so many years after that fateful event, his recollection has not changed in any way, and he still vividly describes the stages through which he traveled during that period. He remembers his initial response of DENIAL and his questioning of the physicians’ findings, followed by the feelings of ANGER he felt at life and at God, and his asking over and over, “Why me, Why me?”. This stage then progressed to one of trying to BARGAIN with God; “Give me a break, Lord, I promise I will be devoted to you!” And when things got worse and the end was beginning to look inevitable, he became DEPRESSED. He felt hopelessly overwhelmed with sorrow and self-pity for being cheated by life and increasingly withdrawn from his family. But then for some reason which he still cannot explain or understand, he slowly became aware of a sense of calm and peace within him as he ACCEPTED the reality of his situation, and tried to make the best of his remaining days, and even began to look forward to the end.

This episode and innumerable other episodes I encountered while I practiced my art over more than half a century, under varying conditions and in multiple settings, have helped me to more clearly understand and to appreciate the actions of people as they travel on their final journey. They have also served the very important purpose of teaching me that the act of dying is not a random, unrelated event that takes place at the end of a person’s lifeline, and should best be ignored and avoided as much as possible until it becomes inevitable. Rather, we should make every effort to recognize that life is but a journey of transition on the map of our destiny, and death is but a continuum of that journey.

The great Italian Renaissance painter and intellectual genius, Leonardo da Vinci, more accurately wrote on the subject of life and death that:

“While I thought that I was learning how to live,

I have been learning how to die”

This statement, though initially appearing to be paradoxical, in fact contains a fundamental truth which we should unconditionally accept. The Buddhist view is even more direct that “we begin to die from the moment we are born and from that moment we should be preparing for the final event.” Unfortunately few societies allow for this truth, and in fact, tend to encourage the very opposite, that life should be lived as if it has no end. We give lip service to the inevitability of death, but live our lives as if this fact does not apply to our living. It is no surprise that when the time comes we are so deeply consumed with regrets that we lose the ability to accept the moment of truth. Far too often, those of us who are in a position to help the patient during this period are tempted to hold back on providing the appropriate information and guidance, treating it as an inconvenient truth, for fear of upsetting the patient or the family. Rather, we choose the safer path of being non-committal and hope that we can get by without being challenged. By doing this we are contributing to the unnecessary suffering and long term pain which lingers on long after the loved one has passed on.

Yet the real truth is that in the end we must all anticipate the inevitability of death as an integral part of living and as such we must, as we must do in every other aspect of living, make preparations for its arrival. The most powerful reminder of this fact is contained in a simple statement in the Gospel, in The Book of Ecclesiastes, Chapter 3, Verse1:

"For everything there is a season,

and a time for every matter under heaven:

a time to be born, and a time to die.”

Irrespective of your belief system, one fact is constant and predictable, and that is, as my friend the late Carlito Alexander repeatedly reminded us: “We are all born with an Expiry date”. Humans, unlike all other members of the Animal Kingdom, find it difficult to accept and adapt to the reality of dying and as a result experience greater pain and suffering. The animal, whether it is the mighty Lion or the humble Otter, will pause to acknowledge the loss and then continue along their way. Humans, by and large, are so preoccupied with the pleasures of living and self gratification, that they either ignore or suppress the reality that death cannot be avoided or worse; believe that they can somehow fool it. There should be no surprise therefore that most of us arrive on that final journey packed with so many regrets that we lose the real impact of that experience until the final moment of acceptance.

In 2009, an Australian nurse, Bronnie Ware, published a brief internet essay based on her 10 year experience as a Hospice nurse entitled “The Top Regrets of the Dying,” in which she recorded the five most common regrets expressed by her patients as they approached death. This was so well received that two years later she expanded her presentation by publishing a book under the same title. In a simple, very personal way, she identified the most common regrets expressed by her patients and their need and desire to have them addressed before the final event occurs. She also reminded us that it was possible to avoid these unfortunate situations and die with peace of mind and dignity, if we took care to make the right choices during our lifetime. She further reinforced the truth, which anyone working in the field will readily confirm, that even in dying it was possible to achieve peace and acceptance, as she noted in her essay:

“I learnt never to underestimate someone's capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them.”

In my own personal life, I have witnessed the peace of mind and calm that comes from the acceptance of the inevitable, and the subsequent joy and celebration of the life of the departed which followed. And above all, I have appreciated the good memories that remain long after. Along the way, I have also witnessed the overnight metamorphosis that take place in a few instances where an angry, aggressive, antagonistic patient was transformed into a peaceful, caring and accepting person, which he suggested resulted from a “spiritual” visit. But I have also shared the excruciating pain and torment of one who could not and would not accept the truth and who fought to the very end, cursing his lot, his luck, his life and his Lord. That pain lingers on forever, and I and the family are robbed of all the good memories of his life that could have been, but were buried by the resentment.

It is clear to me that quite unlike most of the Eastern societies where dying is considered to be an integral part of life, the Western attitude is one of denial and ignoring its relevance in favor living at all cost. You begin to wonder which of these views are really the more “civilized” culture.

There is a growing tendency in this modern society where so much amazing and wonderful discoveries are being made on a daily basis, and where there appears to be increasing optimism that we will be able to replace and restore destroyed and dying organs at will, that perhaps ultimately we will be able cheat death itself. The most extreme form of this thinking is the increasing interest in the concept of Cryonics where the body is preserved in extremely cold temperatures until such time as science catches up with the ability to restore life. While I endorse and welcome all the scientific advancements that have occurred and encourage aggressive research designed to improve the quality of life, I fear that we might find ourselves further lulled into a sense of security that death is indeed not inevitable and that it could be avoided. Already we increasingly cover up the signs of aging with cosmetics and surgery, and we have no hesitation to reverse some of nature’s fundamental changes with the ambitious use of powerful hormones in a concerted attempt to stay young.

All of this however will serve only to prolong the journey, but not change the outcome. We must never lose sight of this fact, nor should we ever abandon our responsibility to prepare ourselves and those around us to the inevitability of our destiny in God’s ultimate plan.

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”.

THE SILENT SERMON

LIFE IS FOR THE LIVING

THE SILENT SERMON

Editor’s note:

From time to time I receive correspondence that impress me so much that I try to post, so that others will be similarly affected. The following message was forwarded by my niece. It contains so many truths that I feel worthy of passing on:

A member of a certain church, who previously had been attending services regularly, stopped going. After a few weeks, the pastor decided to visit him.
It was a chilly evening. The pastor found the man at home alone, sitting before a blazing fire. Guessing the reason for his pastor's visit, the man welcomed him, led him to a comfortable chair near the fireplace and waited.
The pastor made himself at home but said nothing. In the grave silence, he contemplated the dance of the flames around the burning logs. After some minutes, the pastor took the fire tongs, carefully picked up a brightly burning ember and placed it to one side of the hearth all alone then he sat back in his chair, still silent.
The host watched all this in quiet contemplation. As the one lone ember's flame flickered and diminished, there was a momentary glow and then its fire was no more. Soon it was cold and dead.
Not a word had been spoken since the initial greeting. The pastor glanced at his watch and realized it was time to leave. He slowly stood up, picked up the cold, dead ember and placed it back in the middle of the fire. Immediately it began to glow, once more with the light and warmth of the burning coals around it.
As the pastor reached the door to leave, his host said, with a tear running down his cheek:

“Thank you so much for your visit and especially for the fiery sermon. I will be back in church next Sunday”.
We live in a world today, which tries to say too much with too little substance, and consequently, few listen. Sometimes the best sermons are the ones left unspoken.

Consider this interpretation of the real message of Psalm 23:

The Lord is my Shepherd ----- that's a Relationship!
I shall not want ----- that's Supply!
He maketh me to lie down in green pastures ----that's Rest!
He leadeth me beside the still waters -----that'sRefreshment!
He restoreth my soul ----- that's Healing!
He leadeth me in the paths of righteousness ----that's Guidance!
For His name sake ----- that's Purpose!
Yea, though I walk through the valley of the shadow of death----that's Testing!
I will fear no evil ----- that's Protection!
For Thou art with me ----- that's Faithfulness!
Thy rod and Thy staff comfort me -----that's Discipline!
Thou preparest a table before me in the presence of mine enemies------that's Hope!
Thou annointest my head with oil ----- that's Consecration!
My cup runneth over ----- that's Abundance!
Surely goodness and mercy shall follow me all the days of my life----that's Blessing!
And I will dwell in the house of the Lord -----that's Security!
Forever ----- that's Eternity!

Remember this:

“What is most valuable is not what we have in our lives,

but who we have in our lives.”