GEORGE TEMPLETON
COMMENTARY
By George Templeton
Gazette Columnist
(My hope is that our twenty-nine year personal story, presented in two week
intervals, about early onset dementia and neurosis, will help others to
understand the consequences of health care policies. Part 1 describes
the influence of the author’s childhood. Part 2 describes our moral
dilemma and finding care facilities. Part 3 describes secrecy within
the industry. Part 4 describes our experiences with the court. Part 5
describes our encounter with lawyers.)
PART ONE
PART ONE
Myths of Arizona Eldercare, Part1
“Man
should not be in the service of society. Society should be in the
service of man. When man is in the service of society, you have a
monster state, and that’s what is threatening the world at this
minute.” Joseph Campbell
An Aging Crisis
Are
we going to live to be 100? Instead of a blessing, longevity may
become our Achilles’ heel. We can’t understand our healthcare system
even though it is everyone’s destiny. Free enterprise has failed us.
The bureaucratic collective doesn’t work. Fractures are the result of
these two colliding. The destitute and mentally compromised, who have
no family to catch them, risk falling in.
Repeal and Replace
The Putin Generation, in the December 2016 issue of the National Geographic
magazine, reminds me of our election. Vladimir Putin achieved his high
popularity by media control, a promise of consumer material prosperity,
security from terrorism, state sanctioned nostalgia, conformity
replacing diversity, compromised democracy, and military prowess. But
healthcare is not about power, wealth, and pride. Its concern is with
life and the needy “least of these”.
A
lawyer explained that it does not matter what is said during a
political campaign, but doesn’t that undermine the idea of democracy?
He was right about the law, but it is silly to think that words don’t
matter. An America that can’t recognize propaganda is prone to see
healthcare as only political. Our choices are not political. They are
ethical and financial.
As
the Republicans try to pour a gallon of milk into a quart container,
without spilling any, we must recognize that economics and an aging
population cannot be avoided. Would we be better off with competition
among many private insurance companies paid from our health savings
accounts? They must be prudently managed. That requires an informed
public and knowledge of consequences that are not provided by marketing
hype. It is difficult to compare complicated policies that lack a
common structure.
Conservatives
are advocates of unregulated business, smaller government, and
competition. Doctors are not competitive in the sense that grocery
stores are. Our healthcare system twists conservative ideology to
empower predators. We have fake free enterprise, a force that has less
leverage than government. We face a choice between rule by government
or by the insurance industry. We are at the mercy of those who feel
that legal means moral and that business is maximizing profit.
In
our lives we have met uncommon little people. They were the giants
whose shoulders we stood upon. They were the altruistic ones who
rescued us in our time of need. Along the way we make many choices
leading to the question that remains unanswered, “How would things be
different if I had never lived?” That is our outer value, concrete and
measurable, but there is also an inner value that is closer to the
heart.
Let
me tell you my story. I offer it because personal experience could be
as valuable as professional opinion. I wish for more humane eldercare.
Forever Old
My
mother died at birth. My grandparents raised me. A doctor persuaded
them to move to Arizona for health reasons. My grandmother was blinded
in one eye and had lost one foot because of strokes. My grandfather, a
policeman, had wanted to come out west ever since interviewing with the
Texas rangers in 1901. We moved to Arizona in 1948, a time when the
Indians still tethered their horse and buckboard at mom and pop’s
grocery store.
It
all changed in 1955 when I was 11 years old. My grandfather was
catching a taxi to go to the hospital. The last thing he said to me
was, “You will be the man around the house now.” I remember having a
lump in my stomach and feeling as though I had been slapped in the
face. My grandmother did not understand what was coming down and
neither did I. She was crippled by her first broken hip. I did the
grocery shopping, laundry, yard, plumbing, house cleaning, and
everything requiring physical strength. By 1960 I was working in
agriculture. It paid $0.75 per hour, fifteen hours a day for seven days
a week. It was enough to fund a decent car that I used to take my
grandmother to the hospital and doctors.
My
grandfather had only a fourth grade education. Arithmetic beyond
addition and subtraction was a mystery to him, but he could see that
televised monthly payments were not the whole story. My grandmother was
the scholar in our family. She had completed the eighth grade. Their
plan for me was simple. I needed to get a job. I found many of them,
but I also started college at the age of 17.
I
successfully made it through one ASU semester before grandma’s stroke,
second broken hip, and mental incompetence. She had claimed many times
in the past that doctors could not do anything, but not this time. That
was when I learned that the Hippocratic Oath was not as portrayed on
television. It should be rephrased to “show me the money”. I could do
that because her bank accounts were in my name.
My
grandmother, a courageous lady who never complained or was
disrespectful of others, could not die when she wanted to, or as she
wanted to. She was bed-ridden for three years in a nursing home,
separated from others only by a curtain. There was no television,
chair, or common meeting area. The residents did not get out of bed.
There was the lady who squatted and defecated on the floor in front of
me before running screaming down the hall and the constantly strong
stench of urine. Horror is not like Freddy Krueger in the Nightmare on Elm Street.
It can be found in Hanna Arendt’s description of the banality of evil,
where law abiding people acting normally, even out of necessity, become
its vehicle. A seemingly healthy 15 year old girl in the bed adjoining
my grandmother’s was warehoused. Every time I visited, she wanted to
play ABC blocks with me, but she never got it right.
More
than fifty years later, I have a realistic repeating dream, complete
with feelings of guilt, that my grandmother is still alive and that I
had somehow forgotten her, but then the reality sinks in.
My Day Would Come
Having
lost my home, my challenge was to study and work full time, keep grades
up, and not let the emotional turmoil destroy me. In those days there
were no student loans and there was the draft if one did not
successfully carry a full academic load. I pulled my belt tighter,
didn’t sleep, and sometimes went to bed hungry. My books came first.
When a friend dropped by with a car load of bikini clad girls and a
trunk load of beer, I had to study for my differential equations exam.
Following
college graduation, I contemplated matrimony. My pastor explained to
me that I would marry the family, not just the girl. I did not look at
it that way, but it came to pass. I was a black sheep and not
considered a good prospect. In contrast, my wife’s younger sister
married the son of a well-known college professor. Their big wedding
was written up in the newspaper. But the race is not necessarily to the
fastest or richest. I eventually found acceptance.
Executive Dysfunction
Sis
bought a new house with cathedral ceilings and tile roof in 1995. It
was not long until symptoms appeared. Her problems were not psychotic
or addictive, but their impact on her life was significant.
Two
divorces, two bankruptcies, a repossessed car, a second mortgage, a
house destroyed by animals, unread bargain books piled to the ceiling,
an apprehensive hoarding of many things that might come in handy, and a
refrigerator that didn’t work because its fan was clogged by saved
newspapers, suggested that Sis had a problem.
House
cleaning was not Sis’s forte. Dirty kitchen dishes were piled to the
point where it was impossible to find an empty spot to eat at. There
were animal feces under the furniture and giant roaches that dined on
it. I could not walk about the house because of things piled and stored
throughout. The garage lights didn’t work and there was no room for a
car inside.
There
was a broken dishwasher, roof tile, and bathroom. There were multiple
partly assembled exercise machines revealing unrealized intentions.
Dogs, confined indoors, peed on the swollen drywall until it had to be
replaced. Indoor cats hissed, bit, and spun in the air when we tried to
capture them. Their hair clogged the piano and coated the living room
chandelier. Urine soaked the rugs, couch, and concrete below. Rabbits
ate the baseboard. The yard had to be graded to meet code because of
cat sand and rabbit litter that had been dumped outside. The sprinkler
system did not work. The windows were opaque because of evaporation
from a mister system that tried to keep the rabbits cool.
Sis
had a dozen five gallon cans of paint. She painted the bottom half of a
concrete block fence that had already been built with colored blocks.
She painted one corner of the house purple. The door to the back yard
was painted until it dripped like the wax from coffee house candles in
woven Chianti bottles. Inside, there was a kaleidoscope of paint
splotches in every room, intended to try out colors. One room was
partly painted purple. There were multiple simultaneous contracts to
maintain the water heater and a multiplicity of incomplete gardening
structures built with motor and brick in the back yard. She did not
finish the things she started.
Sis
kept a log of illness and missed work days because of jet airplane
chemical trails. She recorded disasters like earthquakes and hurricanes
and had strange ideas about the nature of energy and crystal
vibrations. She had hypochondriac tendencies and a suitcase partitioned
for dozens of herbal medicines and hundreds of cosmetics in her
bathroom that had become, over the years, nearly submerged in the baby
powder she used. Her wardrobe and inventory of shoes were extensive.
This was a person who had been a professional entertainer, singer, and
songwriter. She held degrees in drama and psychology, but her behavior
inseparably combined personality traits and life experiences with her
disease.
Sis
had a schizophrenic son who pounded holes in the walls and used the
windows instead of doors to come and go. We think that he had the
family curse. His belief, that we were possessed by Satan, made him
impossible to help. He could not afford the bus ticket from his
homeless shelter in San Francisco, let alone participate in his mother’s
situation. He had not seen his mother in fifteen years and would not accept the fact that she had no hobbies, did not go to movies, and could not correspond with him by email.
Disordered Personality
Surprisingly,
Sis justified all this by explaining that she was a perfectionist. If
she could find a speck of lint on your clothes she would admonish you.
If her shoes were not perfectly arranged in the closet with left shoe on
the left side she would scold you. She complained about the TV remote
because she did not like football and might come across a game when she
changed channels. There was an inability to see the forest because of
the trees.
CADASIL
Flip
a coin. Heads you win. Tails you lose everything, your health,
vitality, and life. At first there are no symptoms, but then the
suffering can last a lifetime for both the ill person and her
caregivers. A stroke at the age of 55 in 2002 led to a DNA diagnosis of
CADASIL and a loss of the cognition needed for Sis to perform her job.
It’s in every cell, in the master plan of those who suffer from it, but
its symptoms are not recognizable until adulthood. It’s not
Alzheimer’s, a disease of the neurons that tends to happen later in
life. CADASIL slowly attacks the fine structure and blood vessels in
the brain. There is no cure, no remedy, and no hope. By the time it is
discovered in an individual, the family has it. Medical science does
not understand it, and it is too rare to warrant attention. They
thought that only one in five million had the disease, but more cases
were discovered later. If you have it, the odds of passing it to your
children are one in two.
CADASIL’s
outward symptoms are strokes, frequent falls, and strange behaviors
beginning at an early age. Internally, it causes runaway growth of
white matter in the brain. It progresses toward vascular dementia,
incapacitation, incontinence, immobility, and finally an inability to
swallow and breathe. Statistics show that CADASIL does not change
female life expectancy, but males often die early. We did not realize
that family records, documenting mental institutionalization of
ancestors, showed that it had been going on longer than history. My
wife’s father, a physics instructor, died suddenly at age 45 after
showing psychiatric symptoms that lead to electro-shock therapy four
years earlier. Although it was never diagnosed, we suspect that it was
this disease.
Mythical
Myths
require no legitimization other than themselves. Anyone who has heard
them is authorized to tell them. Our healthcare myth reveals a
subconscious commitment to a shared responsibility. That is different
from other consumer commodities.(Editor's note: Parts two through five will be posted at two-week intervals.)
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