By George Templeton
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 politics. Part 1 described the influence of the author’s childhood. Part 2 was about our moral dilemma and finding care facilities. Part 3 considered secrecy within the industry. Part 4 related our experiences with the court. Part 5 describes our encounter with lawyers.
Myths of Arizona Long Term Eldercare, Part 5
“No man is our friend who believes in our good intentions only when they are proved. No man is our friend who will not be very slow to accept evidence against them. Such confidence, between one man and another, is in fact almost universally praised as a moral beauty, not blamed as a logical error. And the suspicious man is blamed for a meanness of character, not admired for the excellence of his logic.” C. S. Lewis
A Miller trust (income only trust) is an accounting vehicle arising out of distrust. It makes a lawyer mandatory. You might think that your ward’s income would be an advantage, but this is not so when it is not substantial. When is it appropriate to have a lawyer involved with the truly poor? The truly poor can’t afford it. They should not be part of a system of distrust arising because the wealthy game the system.
Even the simplest Miller trust can cost $2000 when you add up the mandatory lawyer’s fee for service and his clocked rate ($400 per hour). Lawyers charge the same fee for service regardless of the complexity of an applicant’s financial life.
If your family member has gross income exceeding $2205 per month, ALTCS requires the trust. Health insurance costs and taxes come out of this, so net income comes to about $1500 per month for those just exceeding the threshold. That’s less than one month’s cushion as you drop below the ALTCS maximum wealth limit. It is duress by design and it doesn’t help to keep honest people honest. We are reminded of the death bed scene in the 1964 movie Zorba the Greek. The town people came to steal English Woman’s belongings so the State would not get them.
We met with a lawyer to begin work on a Miller trust. We agreed to do all the leg work, so it was a surprise that Sis was charged more than double the original quoted fee for service.
What we did not know is that the trust, required for financial qualification, must be successful before medical qualification can be considered. We were not told that it would expire in 60 days. It was retained by and belonged to the court. We would have no receivable, only one sheet of paper displaying the figures from our conservator accounting. If the medical qualification failed the trust would have to be repeated. We would pay again.
You could hire a lawyer, fail an ALTCS application, and receive nothing. Our lawyer now explained that our simple case was not so simple in undefined ways. When they repeatedly explain all the ways that your case should cost more, and that they feel that they deserve more, you have a clue for what’s coming.
We were on the clock, hearing that costs would be higher. I had heard it all before. It was a canned song and dance routine. Now all the charges would also be more than double the original fee for service. Clock charges ran on top of and simultaneous with them. Your lawyer determines when the clock can be started, not you. Bonding disclosed our worth, suggesting that that we could pay more, but Sis was not our mother. We were helping her entirely out of our good will.
Our lawyer had our spending plan and knew what was happening with our family member’s care home, but that was our problem. The strategy was to take every penny. According to the law, it all has to be spent! We had stepped into the trap of brinksmanship that profits a cottage industry created by flawed laws. The fractures between government, the law, lawyers, and care institutions promote a corporate irresponsibility and self-interest exerting a form of coercion. We were ambushed and trapped.
As Fate Would Have It
We were moving Sis again, for the fifth time in nine years. Every move is stressful to the demented who have difficulty with any change, but by now, cognitive decline had made Sis less aware. She was concerned that she might not keep her TV and private room. We decided to take the risk of placing her in a smaller, cheaper, less adversarial situation, but there were more than fifty pages of possible homes. It seemed like it would require an insurmountable effort to investigate the possibilities.
We hired a finder service. They found a small group home that provided better care than any of her previous accommodations. When your loved one has a slow incurable disease like CADASIL, the most important thing is attention, compassion, and reassuring touch. It is the opposite of a system that pays for medical procedures instead of time spent with the patient. However, Sis was still reclusive and did not emotionally join the community that she lived within.
The ALTCS medical qualification test is the way that society avoids its responsibility to care for the ill, broke, and disabled. It fails to distinguish between those who are disabled by early onset incurable chronic disease and those who suffer from the inevitable frailty of old age. Sis’ problems and our failing health required frequent doctor’s visits. Our age would have no influence on Sis’ ALTCS qualification, but what would happen if we passed on first?
Sis remained incompatible with a busy hospital-like environment. You might think that use of a walker, wheelchair, shower chair, commode high rise seat, and grab bars would bear on medical qualification, but they don’t because they solve problems. Mental problems that are fixed by drugging do not count. A chronic incurable ten year illness counts no more than the previous 30 to 90 days. Sis remained in her room, door shut, blinds drawn, perpetually cycling through the TV stations, and sometimes watching programs in Spanish that she did not understand. This was a workable situation, but her quiet private room ruled out ALTCS. But it does not matter, because no care facility can afford to operate on the amount of funding supplied by the state.
We made the mistake of bringing some family movies from the fifties that we thought Sis might enjoy. Instead it was a reminder of her father’s early death caused by CADASIL. It led to emotional outbursts and the falling that seemed to correlate with her disturbed condition.
Unfortunately, mini-strokes and falling down are hallmarks of CADASIL. Sis had fallen repeatedly in every care facility and in our home. This time she fractured her spine and pelvis. That led to the emergency room, rehabilitation, numerous doctors who did not talk to one another, and a social worker who found that Sis was happy as long as she was behind a closed door and saw only us and her caregiver.
Sis returned to her care home. She did not completely recover to her prior state. Now, she could not walk without assistance, but maintaining her strength required her to try. She had become incontinent. Her table, lined with numerous bottles of water because she was apprehensive about thirst, did not help. Incontinence anxiety made her think that she needed to go even though she had gone only moments before. Speech became increasingly difficult. Swallowing started to fail and the impairment of one side of her body grew.
It is not dark in Chicago as our president insists. It’s our neighborhoods where Eleanor Rigby, whom no one hears, waits in lonely solitude for the end she can no longer understand and could never accept.
David Kuo’s 2006 book, Tempting Faith, describes the journey of a disillusioned Republican Christian who was a special assistant to President Bush. He writes from the emotional, personal, and human side of religion instead of the dogmatism that confuses the absolute with the ultimate. We all hope that the right guy doing the right thing will make America better, but politics corrupts faith and clouds vision.
People come before power and profit. C.S. Lewis mentioned this in his book, The Screwtape Letters, “… Once he’s made the world an end and faith a means, you have almost won your man, and it makes very little difference what kind of worldly end he is pursuing.”
Good ideas, like Faith Based Initiatives are flawed by how they are administered. Religion and political ideology are proselytizing, but that is the least of their problems. The law is neither just nor moral. Business is not intrinsically good. Health care should be treated as an instrument of the public benefit instead of a source of private gain. It may be that morality cannot be computed, but the fact is that ends, means, dollars, and cents, cannot be avoided.
In 1966 when Medicare started, health spending was six percent of America’s GDP. Today it has tripled. Our aging baby boom population cannot be supported by a lack of workers and insufficient immigration. The savings of the average person going into retirement are not much compared to medical expenses. That government will take care of us is a myth.
Every business manager knows the importance of honesty and trust for motivating employees. America is the only country that deliberately manufactures an eldercare crisis. We seem to have decided that secrecy, business, and profit are more important than people.
An Incomplete Truth
It’s a catch-22 when your impoverished loved one can’t qualify for public support unless she pays. The TV news personality explained that all reality can be expressed as “deals” and that we have just the president we need to make them. Aren’t there some things that should not have a price?
This story is about how the pieces fit together. The fracture between government and free enterprise results in each piece treating us as a means to their ends. It’s legal, but when we are on the side of profit instead of people it becomes a moral corruption.
Our health is not just another consumer commodity that can always be replaced. Thank goodness we have Medicare, but it does not address long term care. It is like a government insurance policy. It is not socialism because it fails to regulate prices, though it pays less than you alone would. It is not complicated by “more choice”.It has been proposed that eldercare should be rolled into Medicare. We will go to the poorhouse because we did not support socialized medicine when we were younger and working. We failed to consider that eldercare is not ninety-five percent body and five percent mind. It is much closer to fifty-fifty.