Monday, January 9, 2017

A family's struggle with a rare, incurable disease


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.)


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. 
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.
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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