Death from GOP opposition to Medicaid expansion

 GEORGE TEMPLETON: COMMENTARY 

By George Templeton
Gazette Columnist

Long Term Care

Speaknoevil, with his sisters Seenoevil, and Hearnoevil were monkeys who lived high in a forest wonderland.  They abhorred and ignored the sin that dwelt below their happy forest canopy.  They explained, “We can’t stand to see pain, we have such empathy, it’s like stabbing us over and over again.”  They cautioned, “Darlings, please don’t get hurt because we will have to leave you lying there in the dirt.”  There were alligators living in that forest, but they were not aware of what happened to those who fell to the forest floor.  It was an unpleasant subject that Seenoevil avoided.  She saw the colors of the rainbow, so pretty in the sky and that they were on the faces of people going by. 

Legacy

Suddenly, without warning, one day Hearnoevil was not behaving right, but she did not know that.  She had become an accident looking for a place to happen.  It was not expected from someone that young, who was in the prime of life.  She kept tipping over and could no longer remember where the coconuts grew.  In three more years, CADASIL would make her unable to work.  It contributed to the automobile accident that she preferred to blame her crippling on.  Continued future falling and pain caused by bruising would lead her to prefer to not move at all.

Hearnoevil had a genetic curse “visiting the iniquity of the fathers on the children and the children’s children”, with a fifty percent chance that passed from generation to generation, revealing itself by institutionalized ancestors, electro-shock therapy, strokes, and sudden death.  Those odds would give her forty-two year old son the schizophrenia that kept him homeless and convinced him that others were demon-possessed.  He shared the irresponsibility that led to his mother’s repeated bankruptcy filings to avoid financial commitments and marriages that did not work out.

Seenoevil said, “it is just eccentricity” because Hearnoevil kept a big suitcase divided into dozens of little boxes containing herbal remedies and kept detailed logs of jet airplane condensation trails that she could see in the sky that made her ill. 

It Could Happen to You

It was like an iceberg where only the tip shows above the surface of the water.  The mapping of the human genome discovered it.  The 2008 federal Genetic Information Nondiscrimination Act did not apply to it.  Coverage depended on the insurance company.  What would happen if employers found out?  The children wanted to know, but they remembered that “curiosity killed the cat”.

Speaknoevil explained, “Nobody understands how the mind and body work together, and what the difference between won’t and can’t is”, but the curse was incurable, untreatable, progressive, and happened less often than being struck by lightning.  The illness was more than the sick person.  It was the entire family.  Now Hearnoevil could not earn a living.  How would she pay her bills given her physical and mental disability and the likelihood of an additional forty year life expectancy?  Soon she would not be able to cook, clean, and bathe.

Seenoevil expounded, “We all lose in the end”, partly justifying the slow trip downward.  She wondered, “Was the commercialization of this new eugenics the heart of darkness or the coming of a brave new world? 

The House

Hearnoevil’s new home was large with cathedral ceilings and a tile roof and its equity would be borrowed on because home values could only go up.  It had lots of room for collecting things “just in case”.  It allowed a large family of pets that would counter the loneliness of living alone.  But it was a forty five minute drive to Hearnoevil’s work.  That meant that she would be gone from home ten hours a day or more leaving the animals free to roam the house. 

Hoarding

“I can see the best option”, Speaknoevil exclaimed, as he moved into his sister’s home to repair the damage caused by her ten years of housing dozens of dogs, cats, and rabbits that wet on the walls until they were swollen, urinated on the rugs until it had permeated the concrete below, ate the baseboard trim, and went on the furniture so that he had to hold his breath to keep from vomiting.  There were feces under the bed and furniture.  Her cats were not the kind that purred and rubbed against you.

 Speaknoevil unsuccessfully tried to subdue and capture them by throwing blankets over them.  They bit, growled, and hissed as they spun through the air.  Speaknoevil found unassembled exercise machines.  There were multiple simultaneous contracts to maintain the water heater, but the home had been left unheated in the winter and the furnace never lit.  Her son moved in.  He used the windows instead of the doors to enter and leave the home, removed the screens, and beat holes into the walls when he became crazed.  It was not possible to move about in the house because of dozens of nearly full five gallon paint buckets and thousands of dollars of unread bargain books stacked to the ceiling.  It took dozens of truckloads to empty the house.  Many gallons of disinfectant failed to wash the smell out that finally was covered by floor tile.  The house was an unfinished kaleidoscope of color splotches including a purple corner on the outside, partly finished purple rooms inside, and a half-painted green block fence. The doors had been painted until they dripped like one of those wax candles in the Chianti wine bottles that decorated sixties coffee houses.  The lot had to be graded because of the cat litter that had changed the yard’s slope preventing drainage.  The refrigerator had stopped working because it had become clogged with saved newspapers and the dishwasher, bathroom, outdoor lighting, sprinkler system, and roof tile had failed.  But Hearnoevil saw none of this, would complain about a spec of lint on your clothing, and she justified that because she was a perfectionist. 

Disability

Long-term care assistance had existed since a 1989 law made it into a cottage industry that was opaque as ink and as impenetrable as the iron curtain.  It thrived on the same secrecy and sleight of hand that makes a shell game work.  It was not transparent, competitive, or concise like a written business plan.

Was it because Speaknoevil was ignorant and could not see the forest because of the trees or a lack of candor on the part of his “helpers”?  It was difficult for him because he was not computer literate and lacked time to research things.  He said, “You cannot trust a government that claims to care but uses technicalities not to!”  But government could not exist without law and law without government.  Society lacked ethos, unwritten rules by which people live, but it was the law and lawyers that held things together.  It was the entire system that, like the Gordian knot, required drastic measures to untie.

When Speaknoevil asked for information, the answer always was, “I am not a lawyer, and will not give you a clue”, “it does not matter what it is going to cost because the government is going to pay for it”.  Seenoevil said, “I know you believe that a lawyer must be hired before any dispute arises”, trying to get Speaknoevil to agree.  Speaknoevil countered, “It is a very expensive insurance policy”.

Sales presentations did not inform about the differences between small and large assisted living centers and more expensive nursing facilities or what happens when the loved one has severe psycho-emotional disturbances, is discharged from a facility, or denied admission.  They did not mention that nursing care facilities would need forty thousand dollars of private payment to cover the risk of Medicaid denial and what would happen then?  They did not mention that assisted living, that is more like a home than hospital, could evict an occupant if they decided that Medicaid did not provide the profit margin they desired or if the resident proved to be incompatible.  They did not mention that government would prefer to help only those needing a nursing home level of care.  They did not describe where information might be found about Medicaid qualification strategy, the sequence of events, pitfalls, or the typical reasons for disqualification.  Seenoevil whined enviously that there are millionaires on Medicaid.  Speaknoevil argued government should try to reduce misunderstanding and confusion.  Seenoevil agreed that a clue is not legal advice. 

Simplicity

There was no will, inheritance to pass on, husband, gifts, trust, and no business to run.  The assets of Hearnoevil included a court blocked account from the auto accident settlement, income from Social Security, and a pension, but they could not be “protected”.  Her new car was repossessed and her home sold.  Spending down, assisted living, and taxes had been paid from bank accounts for eight years.  It was business as usual, but the move out of assisted living and Medicaid qualification was not as cheap and easy as would be expected for someone with such an uncomplicated life.

What was not simple was the interaction of the mind and body.  Nothing is more inadequate than society’s treatment of the mentally ill.  They are like the mistreated dog that forevermore hides under the bed trusting no human being.  They are like the serviceman with post-traumatic stress disorder who has trouble distinguishing between situations that merit fear and those that are innocuous. 

Catch22

Speaknoevil was conservator, reporting to the court, but like Abbot and Costello’s “Who’s on First” comedy routine, he did not understand the relationship between the judge, lawyer, care facility, hospital, and government.

It was eight years coming and unavoidable.  All was going well until, surprise!  She was running out of money.  The court said, “You can’t have the funds that would have kept her in assisted living another nine months, we will help you help yourself”.  It was perhaps best that she could no longer understand that the settlement that she thought belonged to her belonged to the court and they would order it to be used as they saw fit.

The law was “decisive and imperious to criticism”, an adversary of the “highly trained, skillful, and motivated attorneys, well versed in the ways of the courtroom, who would press any advantage to obtain a favorable outcome for their client”.  It had to be a consistent rule, but was it absolute, not situational, God’s will manifest in history, or some sort of phantom that had an existence independent of society?  The law west of the Pecos was empowered to micromanage the human situation that it did not understand.  Poor Hearnoevil, she had fallen to the ground, and like in the death bed scene from the 1964 movie, Zorba the Greek, the alligators had come to steal her money so the State would not get it.

Long-term care qualification was taking four to  six months, not the printed 45 days, because of a shortage  of lawyers and “no, no, no you can’t get the  forms until  you are broke”, but you can’t be qualified or even start an application until everything, including the denied court blocked account is gone.  Ambushed, Speaknoevil found himself having to suddenly decide between wrong and wrong.

Speaknoevil wondered, why is it that you cannot get help unless you are broke, but if you are broke you can’t pay for help?  Even though he could see it coming, he could not plan ahead.  Why does the government mandate a situation causing loss of control of the situation that amplifies the stress on the people that it serves?  Could it be that the “system” has created rules to justify and conceal its own abuse of power? 

It’s not forgetting

Hearnoevil’s sister, Seenoevil, thought that CADASIL was just impairment of mental powers, but the mind and body were inseparable.  Psycho-emotional disturbances started at thirty years of age, sometimes killed in the forties, or disabled in the fifties, though life-spans often exceeded eighty years.  Paranoia, schizophrenia, extreme rigidity where any change is threatening, creeping anxiety, apprehension, frustration, anger, and depression only became concrete by living together.  Hearnoevil could not go shopping because busy store atmospheres caused hysterical fits.  She was more than a vegetarian, excluding everything except cheese, and she became anxious if she could not carry a bottle of water with her at all times.  When she fell, only the biggest and strongest person could set her upright.  She had forgotten how to brush her teeth, and for years she had been unable to walk past four pm, perhaps because she became confused and less lucid as the day wore on.  So, she went to bed every day at four pm.  In the sixties she was a musical composer, naturally gifted professional singer, and star of stage.  Her essence progressed toward irrationality, babbling speech, crippling, morbid obesity, pneumonia, inability to swallow, breathe, heart attack, and cerebral hemorrhage, but Hearnoevil was not ready for skilled nursing care.  The small assisted living facilities that accepted Medicaid would not admit her.  That left only nursing care, but she did not have bed sores, a feeding tube, or a catheter. 

Remembering

Speaknoevil was raised by his grandparents.  He lost them during his first year in college.  His grandmother spent three years in a nursing care bed.  There was a fifteen year old girl, warehoused in the adjoining bed who always asked him to play ABC blocks with her.  She never got it right.  Then there was the lady who screamed, ran, and defecated on the floor.

Speaknoevil thought about how he might feel were he involuntarily committed to an institution for the rest of his days.  The sentence could easily be ten years and could lead to chemical restraint in a mental ward.  Hearnoevil feared others and hid behind locked doors, saying that everyone else was “crazy”.  She was intolerant of light, noise, and music, regardless of how soft or momentary, like the jingles in TV ads and had become supersensitive, requiring hospitalization to have a routine blood test.  The air conditioning thermostat was never correct requiring constant adjustment.  Her incontinence, diarrhea, and constipation were constant, simultaneous, perhaps imagined, but partly justified.  She huffed and puffed, shook and screamed, but usually seemed normal. 

Death Panels

Seenoevil thought that Sarah Palin’s “death panels” were frightening.  She did not see that real death came from Republican opposition to Medicaid expansion, but many baby boomers would be requiring long term care and costs would skyrocket if something was not done.  There would have to be a choice between unlimited coverage for a few and “reasonable” coverage for the many.  It was a shame that the care of the elderly and disabled would be left to the profit motive. 

Trust

Trust is what all human interactions are founded upon.  Who can you trust if not the conservator care giver, the one with no financial motive?  He had to act within a culture of distrust where humanitarian and Christian values were shameful, where the poor and ill were depersonalized and not treated as human beings, but he could not expect that life would follow his rules.  He had to say “yes” to the way things were, that it was at heart something beyond right or wrong.