"We had forgotten who we were and did not know what we are."

GEORGE TEMPLETON 

COMMENTARY

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 healthcare policies.  Part 1 described the influence of the author’s childhood.  Part 2 brings the personal to the public, describing our moral dilemma and finding a care facility.  Part 3 will discuss secrecy within the industry.  Part 4 is about our experiences with the court.  Part 5 describes our encounter with lawyers. 

Myths of Arizona Long Term Eldercare, Part2

By George Templeton

Gazette Columnist

More than one third of us will be demented by age eighty.  Nearly half of us will be if we make it to ninety.  Our free will goes when we become legally incompetent, but it remains personally present in our feelings.  Dementia classifies one as disabled and unable to earn a living, but it does not mean that society will care for us.

Conscience

If we became participants, architects in Sis’ demise, would not we bear the pain of responsibility?  It is worse than the pain of loss.  We would have to live with the evolving reality and the guilt of not having tried, if we did nothing.  Involvement meant unavoidable anxiety about the future, the adequacy of Sis’s finances, and the appropriate level of care.  We did not realize that our loved one could amount to a thirty year prison sentence for us.  At what point is a caregiver’s suffering important?  Are we selfish if we put our children first?

Unlike some other states, Arizona supposedly does not require filial responsibility.  Sis had lived her own life.  She was younger than us and there was not the bond that exists between parents and children.  But what was in store for her?  Would the establishment really have her best interests in mind?  How could they?  They didn’t know her.  A lawyer said, “We don’t go there; I won’t listen to you concerning your ward’s psychological issues”.

We had forgotten who we were and did not know what we are.  We did not realize that we were creating the meaning of our lives and ourselves by choosing the way that things ought to be.  Our world would change.  We had no doubt about what Sis wanted.

Whatever will be will be

Sis qualified for Social Security disability because she was no longer mentally competent to perform her job as records clerk.  My wife agreed to accept healthcare and financial power of attorney because we knew that things were not going to get better.  Sis was still living in her home as we tried to get it ready to sell.  Her emotions were in the way.  It was like trying to hike through quicksand.

We would not let Sis get on a ladder because she might fall, but we did not anticipate that she would try to hike to the store to buy ice cream and would be hit by a car.  There was a helicopter trip to the hospital, temporary loss of speech, impairment of gait, mental incompetence, Social Security disability, insurance settlement, and unwanted mandatory appointment of my wife as conservator (not guardian and no longer financial power of attorney).  From that point onward, Sis blamed everything on the automobile accident.  She never accepted the terrible reality, that she had an incurable illness and would suffer a slow death.

I moved into Sis’ house for a year to repair the damage.  We financed its repair.  She moved into our home where we provided room and board at no charge.  I hauled dozens of truck loads to the dump and held my breath as I loaded furniture soaked with years of urine.  I replaced, repainted and repaired everything so the house could be sold.  Concrete is porous.  It had absorbed ten years of animal pee that would not just wash off.  I mopped the floor over and over and covered up the smell with ceramic floor tile.

We knew that Sis had become disabled and unable to work before the accident.  CADASIL was the bigger problem.  It was incurable, but people recover from automobile accidents.  We knew that liability cases could take years and involve us personally and extensively.  We felt that there were enough problems to solve without taking on another fight that we might not win.  We settled out of court.

The consequences of this were never explained to us.  We did not understand that her insurance settlement belonged to the court, and not our ward.  We knew nothing of the legal costs and horrible bureaucratic inertia that would result.  When you accept a conservatorship, you work for the court and are persona non grata.  Once the court becomes involved, it stays involved.  It can’t be rushed.

The law reads that a conservator cannot be held responsible for the conservatee’s financial problems, but read closer.  That applies only as long as the estate is not depleted and can be a source of funding.  All support for the ward comes from their estate.

The great real estate crash was starting.  You can image how quickly Sis would have “spent down” had we not intervened.  There would have been fees for a public conservator, court appointed guardian, guardian’s attorney, ward’s attorney, and lawyer’s fees.  We saved the taxpayer’s money and protected Sis from a highly impersonal system that cared as little as possible for her.

Compatibility

The first time that Sis lived with us was through her first bankruptcy and second divorce in 1988.  We learned more about her increasing quirks when she lived in our home again for another year in 2006.  Her funnel vision caused her to inflate the importance of trivia and to miss the relationship between cause and effect.  Attending to her every whim and need required our constant attention, night and day.  We had to help her bathe and dress.  Her “vegetarian” meals were all-out exclusionary warfare because she refused most vegetables, preferring cheese instead.  Her meals had to be served at unusual times of the day.  Though she had spent much of her life as a professional singer and song writer, she would no longer tolerate any music regardless of how soft.  That included Christmas carols and advertising jingles on the radio or television.  She prevented my trumpet playing.  Lights were intolerable.  She liked to sit in a dark room with curtains closed and would not come out for family events.  She had a fear of men.  Taking her out to a busy department store was out of the question because she would huff and puff like a steam engine.  She threw a fit when she saw someone smoking on the other side of the street.  She needed to have many bottles of water at bedside because she feared that she might get thirsty, but that required using the bathroom at all hours of the night.  It led to frequent falls.  Apprehension ruled our house. 

Finding a home

After a year of taking care of Sis in our home, 24 hours per day and 7 days per week, we needed to escape.  We were seeking the experience of life instead of its meaning.  We had retired only months before her incapacitation and had finally straightened out her home and financial affairs.  Our plan was to retire in our forest home.  We started to act on that plan.

Facilities, who view business as a win-win proposition, realize that eldercare is a shared responsibility.  They become involved in the Medicare/ ALTCS qualification process and may have their own lawyer.  They can help with medical qualification and the ALTCS application, but this means that they will be in control.  Their motivation is to continue the cash flow.

The choice of skilled nursing should be driven by the level of medical care required.  It is appropriate for people who are in the last year of their lives.  Skilled nursing facilities cannot make your ward leave if you have applied for and are waiting to get Medicaid, but they don’t want to get stuck with bad debt.  This is the reason why they are reluctant to admit a person pending ALTCS.  It is also the reason why people try to get their loved one admitted sooner instead of later. 

Assisted living facilities can discharge your ward at any time for any reason, but they provide a quiet living situation less like a hospital and are cheaper.  They advertise a college dormitory setting, showing residents playing sports and happily partying with their new friends.  But our case was the opposite, a fifty-five year old incapacitated sister who was anxious, reclusive, crippled, and would likely need care for thirty years.

Home for Sis had to be physically convenient, somewhere that we could visit weekly.  Small care homes refused to admit our 200 pound 5 foot 4 basket of eccentricities.  Close living would require Sis to compromise, but that did not seem to be in her.  We found an assisted living center that assured us that they would help when the need for Medicaid came, but reality is influenced by the constantly increasing size of the retiring baby boom generation.  Incentives become unnecessary when there are more than enough old people to fill every opening. 

Psychologically disturbed 

Sis had her own room.  Television watching meant incessant cycling of the channels.  She adjusted the air-conditioning a dozen times every day.  She kept her door locked and justified that by claiming that the other residents were crazy.  She complained that they were old.  The facility made certain that no music played and that the sun did not shine when Sis was present.  Sis ate early because she went to sleep at 4:30 pm.  She claimed that she could not walk past that hour.

When she rode in our car, Sis would have to go within minutes but at the doctor’s office she could not go even though she wanted to because the bathroom was not hers.  Sensitivity to pain and needles was another problem.  The doctor’s office gave up on her.  We had to take her to the hospital to have blood drawn for testing.  You can imagine the look on the waiting patients’ faces when they heard her scream.

Sis kept two dogs that she had not toilet trained.  They were afraid of the outdoors.  We took one and left the other with her, anticipating future problems.  In the beginning the dog provided a way for socially interacting with the other people in the care center, but it was not long until Sis was failing to walk her dog.  Feces accumulated in the facility, as it had when she was a home owner.  From then on, we took both dogs and left them with her when we regularly came to town.  This was Sis’s reality for eight years and more than a quarter of a million dollars spent.

Unlucky 

As luck would have it, a new corporate owner acquired the care facility only a month before Sis was broke.  They needed more profit.  They would not accept Medicaid and knew of no care facility would without an undefined family supplement.  We were the only family.  We did not feel that it should be our responsibility to pay out of our own pocket for someone who had lived a financially irresponsible life.

Legacy preservation

Gifts, transfers of titles, and trusts are strategies of wealth preservation.  If you have not transferred your house to your children five years before the nursing home, the government steps in.  But do you trust your children’s judgment?  Do you trust that the state will believe that you were not deliberately avoiding financial responsibility when you transferred wealth shortly before requesting the state’s financial help?

ALTCS fails to protect the truly poor individual who has no assets or family.  The system throws such a person in with the gamers.  Seven percent of the Medicaid recipients in nursing homes account for more than two thirds of asset transfers.  It distorts the intent of Medicaid and robs the taxpayer.

In Finland, Germany, and Japan, the taxpayer funds your nursing home stay and you can retain your assets.  However, most developed countries suffer from insufficient immigration, an aging population, and resulting economic decline.  They have the honesty to let you know that you will not qualify.  They do not play the game of brinksmanship that will ambush you and hold you hostage by virtue of your loved one.