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Defining Life with Alzheimer's

When my father passed from this world, my sister claimed that Dad's passing was merely a physical phase of life, and that Dad had actually "left her" quite some time ago. Her statement, whether it was made to console those around her, or believed in her heart, begged the question, "When?" to which she quickly responded, "When he stopped being "Dad"."

 

Alzheimer's has a way of stealing from those who are both aware and unaware that many things have changed. But Alzheimer's ways are much more evil than just the taking from the cognizant ones. Alzheimer's leaves gaps for the victim - holes in time, if you will - that are filled with fully cognizant moments. In those moments, its victims are aware of the full realm of their reality, and sometimes their mere existence. Those moments are as illucid dreams, with reality enveloped within the fog of Alzheimer's.

 

My father had very few gaps of time. His cognitive abilities were seemingly very sharp until his 87th birthday, and relatively so until his 88th, even though he had undergone four cancer-removing surgeries between his 84th and 87th years. For several months before they initially diagnosed my father with cancer, my mother described to me my father's abnormally incoherent actions. From a lay person's point of view, I determined that these signs might indicate a stroke. As soon as the doctor determined that Dad was to undergo surgery, the surgeon was immediately scheduled. Yet nobody answered my question, "what was being done about the stroke-like symptoms."

 

My father's doctor told me that dad had not reported such symptoms, but he would assess Dad after his surgery. That medical plan made no sense to me whatsoever, and so, I proceeded to notify the surgeon who immediately upon learning of the symptoms rescheduled my father into the hospital 24-hours "pre-op" for heart monitoring. Those tests indicated that my father's heart was in full atrium fibrillation. A heart specialists recommended an immediate pacemaker implant, and stated that Dad would place himself in peril without the device in place. Dad agreed. From that point forward, and perhaps even before that time, I became his most trusted patient advocate.

 

In September 2004, Dad underwent his fifth and final surgery. Although I had attended the first four, never allowing a single skip of his heart beat to go unnoticed, for this surgery, I was across the hall undergoing major surgery myself. For each of dad's prior surgeries, I always placed my dutiful call to the surgeon to ensure that a twilight sedative be used with Dad, instead of the normal stronger type. And for each surgery, he faired well. This surgery was no exception.

 

The crisis developed after surgery. Apparently, despite the reassurances that the correct twilight anesthesia would be used, a regular sedative was administered. The effect was "anesthesia induced Alzheimer's" according to the surgeon. The result rendered my dad's nervous system incompetent, his equilibrium was nullified, and he was unable to communicate or remain rational. His regular physician was on a mission, so a substitute recommended that dad be immediately incarcerated into a nursing home for his own protection and that of his caregivers, being my mom and my eldest sister.

 

I called for the advice of some of the best elder medical advisors in the states, then rushed to my father's side; he didn't know me, or anyone, or at least that is what we believed because he could not tell us otherwise. I contacted his doctor and requested a shot of Vitamin B, as the medical consultants recommended. I sat with dad for endless hours until he finally calmed, and then I asked for food to feed him. With his nervous system dysfunctional, he was unable to remain sitting upward, so I held him up, and he took slight amounts of food. At one point, he jolted backwards; I didn't expect the quick fall, but grabbed him in time to prevent him from hitting his head on the cement wall. As I did, my internal stitches ripped, and for moments I felt as though I was in labor, but my attention quickly refocused on feeding Dad. He ate an insignificant amount.

 

Twenty-four hours later, he was talking, rational, cognizant, and alert. The Vitamin B shot worked. Within a week, he was moved from the Alzheimer's unit to the regular medical care unit in the nursing home. His spirits were rejuvenated at the thought of being released, but the family had decided that Dad should remain at the nursing home - perhaps for the rest of his life. Dad soon realized the plan.

 

From that point forward, my father's health declined rapidly. He lost hope, and with it his appetite, so he failed to eat well. His upper and lower dentures soon failed to stay in place, and subsequently they were misplaced, and then lost forever. His eyesight, which had already been sustained by eye drops that the nursing home had stopped administering, failed very quickly. On January 11, 2005, I knelt next to my father, as I had done so many times before, and looked up into his eyes. Where previously a glow radiated his love of life, there was now an emptiness. I recall my question well, "Dad, can you see me?" He responded by sobbing. I echoed his response.

 

On March 11, 2005, my father was admitted to the hospital after an episode which appeared to be heart failure. Thereafter, he was completely bedridden. The family was called home. We took turns sitting with him so as to never leave him alone. On March 21, 2005, at 9 PM at night, as I was visiting with Dad, watching him fall in and out of sleep. He awoke and reached for me. I moved onto his bed and listened intently as he tried to speak. I could not understand his words; he had not eaten anything of substance for days, and he was far too weak to utter words above a whisper. He laid his hand upon mine and guided my hand down his chest, over his ribs, and down onto his stomach. There I could feel his spine. He had deteriorated to nothing more than skin over bone. I wept. He guided my hand back up over his rib cage, the hallow there was shocking. In place of his stomach, there was nothing, it was an empty hallow hole reaching deep up under his ribs. He guided my hand to his heart where his pace maker had been implanted, and there he stopped. He tapped my hand twice, and spoke one word, "doctor."

 

In desperation, I begged him to repeat it, and asked, "Dad, do you want a doctor." He nodded ever so slightly.

 

When my father asked for a doctor, I believed he wanted one to save his life. I believed then, as I do now, that he wanted to live, to be free of the debilitating effects of this evil wretched disease. I believed then, as I do now, that he was begging me for help.

 

For my heart could not then, nor can it now fathom even the remotest possibility that my father, who so loved life and living, who believed that life was far too short and death was far too long, who had a list of things to do and accomplish yet unchecked, who protected me from those who would do me evil and wrong, who named me the chosen one and his sun, who fathered me for 43 years, and who loved me with all his might as I loved him would ever even consider praying for his own death. My heart could not fathom that then, just as it cannot do so now. Belief is, as beauty, relative, and yet only in the eye of the beholder.

 

I ask you... when does life end?

 

I submit to you that life does not end when we cease to be the person that others want us to be. It would no more end at that time than it would fail to begin until we develop from conception into a human being with personality - a mere toddler - and cognitively able. Many great scholars have begged to answer the call of the question of when life ends; those who have the answer to that question have not shared it (or cannot do so). To say that life ends when one enters Alzheimer's fog is parallel to saying that it only begins years after birth. As humans, we cannot believe that to be the truth. Life must, as our legal system has declared, be recognized when the first breath is taken, and it must be honored until the last breath is given.

 

Alzheimer's takes all that the body has to offer, including that last breath. Alzheimer's survives because a brain dies; it thrives upon the tissue and brain matter as a parasite upon its host. At some point, it reaches that area of the brain that maintains the simplest, yet the most crucial functions of life itself. And at that point, the war is lost, and the battle is just begun.

 

The body forgets how to swallow, so food and liquids are, or must be withheld. As the body dehydrates, the ensuing days are a slow and agonizing painful death; every last drop of hydration evaporates from every tissue and every cell. The medical profession stands ready to help, yet there is nothing they can do except hide their astonishment of the body's consumption of itself. Decades ago, such consumption was seen in patients who were dying of cancer. Today, it is seen in patents dying of many diseases: Aplastic Anemia, Chronic Graph-versus-Host (cGvHD) Disease, Respiratory Failures... and the list goes on.

 

It is not an aging process, nor is it a natural process of aging. It is not a normal death, nor is it a natural death. It is not an immediate death, but it is death. You can feel the presence of death, and even smell it. It is an odor you have never known, and one that you will not forget. In the final days, the body consumes the fat to sustain the vital organs. It robs all nourishment from every corner of every cell. And when all the nourishment is gone, the organs begin to die one by one, life slips away, and the organs cease to function. One can scarecely imagine the immense pain of an organ dying from within, but you can see the pain on their face, you feel it in their grip, you watch it stiffen their body, but you can't stop the process. Morphine is the only drug that even begins to ease the pain as the person you love lays there dying of dehydration.

 

If life did not exist within that body that lays in wait for death to ease its physical, mental, and emotional pain, then tell me... when does life end?

 

If you do nothing else this year, do one thing: for just one moment, consider how much you would have donated to research for Alzheimer's if you knew you or someone you love dearly would be the person under its consumption, then donate it. April 15th is coming fast - every year.

 

See Also:

About Alzheimer's
In 5 years, an estimated 15 million people will be diagnosed with Alzheimer's. That's half of today's 65 year old and older population.

 

 

 

Theodore "Ted" Golisek
June 16, 1916 - March 30, 2005
Theodore Golisek Memorial Fund

Defining Life With Alzheimer's

 

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