When my father
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"."
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
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
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.
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
June 16, 1916 - March 30, 2005
Theodore Golisek Memorial Fund
Life With Alzheimer's
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