Author’s Note: A Word of Explanation
This Essay is intended to concomitantly fulfill several functions. First this essay is an attempt to complete academic requirements for a first year Communications Course I’m currently taking at The Christ School of Nursing in Cincinnati Ohio.
The assignment, in pertinent part, is this:
You have complete freedom to create a project that represents the most important interpersonal concept, theory or skill you learned about this semester. You should imagine that you are being tasked with teaching others about your chosen concept, theory or skill and why it is such an important concept to master in personal and professional interpersonal contexts….
The purpose of this project is to concomitantly provide objective and personal views of my topic which is: addressing the symptom of anosognosia, as commonly suffered by schizophrenics, through language based treatment, and in particular, the LEAP Program as developed by Dr Xavier Amador.
This project combines, incorporates and provides for the practice of any number of skills, theories and concepts we have discussed this semester including: expressing empathy, practicing we language, the use of eye contact as well as communicating immediacy, and communicating through touch and collaboration.
Anosognosia for those who are new to the world of psychosis, is a – “‘lack of insight’ or “lack of awareness” – is believed to be the single largest reason why individuals with schizophrenia and bipolar disorder do not take their medications.
A result of anatomical damage to the brain, it affects approximately 50% of individuals with schizophrenia and 40% of individuals with bipolar disorder.” In essence, those afflicted cannot, for physiological reasons, understand that they are sick. As a result they often refuse treatment which places these patients at greater risk for any number of problems including homelessness and being subject to arrest and violence.
Secondly, I also intend this essay as a personal, as well as academic work, for several reasons.
First of all, while a great deal of research has been directed at the disease of schizophrenia, especially over the last twenty years, and while much of that research is hopeful and illuminating as to the nature and reality of that disease; it has also been very much my experience as a father of identical twins who have both, over the last two years, been diagnosed with schizophrenia that understanding the daily realities of this disease is crucial to understanding the disease as a whole.
Secondly, some of the greatest support which Becky and I have received concerning our sons, and their recent illness, has come from non professionals, especially the instructors and fellow classmates of the twelve week NAMI course we took shortly after the twins diagnosis.
The personal advice and support and education I received from those involved non-professionals meant as much as any professional assistance we have received to date. It is, by the way, my intention in making the last statement, to praise the kindness and generosity of those non-professionals; and not to denigrate the professionals who have cared for our sons in a very competent and caring fashion.
It is also my intention to provide insight to those who may be new to the adventure which is schizophrenia. For while it has become easier especially over the last five to ten years to find clinical and professional information regarding the onset, treatment and care of schizophrenia; it remains difficult, from my perspective, to find answers to the human issues which accompany this towering challenge.
Accordingly, for me, any project which concerns this subject, must offer a scientific as well as personal component in order to be meaningful and effective to anyone newly interested in this subject; whether as a caregiver, friend or relative of someone burdened with this disease.
Penultimately, creating in this genre permits me to, as an artist, combine my love of writing and photography. And, because increased communication is the goal of this project, and because combining these two arts results in the synthesis of a third medium possessing an inherently greater potential for telling a more nuanced and human story, from the point of view of all parties concerned, I take this multimodal/multimedia approach.
It is, also, quite frankly, a way for me to make sense of the journey I have taken with Becky and the boys, over the last two years. Quite simply this is the best way- in my estimation to tell this story.
For to tell this story from purely a clinical point of view, is, in my estimation, to tell only a third of the story. I say a third because it is imperative to understand that there are, from my lay perspective, three principal parties involved in any case of schizophrenia. The first, being of course, the person with schizophrenia, the second being those professionals charged with his or her care and the third person(s) being those lay persons friends, family, significant others, charged with caring for the schizophrenic individual.
As we’ll come to see, all three parties are greatly touched by this disease. All three struggle with communication not just with communication regarding the need to take medication, but communication on every subject on a daily basis. Improving the communication of all three parties thus serves to improve the quality of life of all three parties immeasurably.
That improvement, however, is not possible without developing trust through honest heartfelt communication. Developing such trust is normally hard enough between allegedly normal everyday folk. It’s a much bigger deal to ask for trust from a schizophrenic.
For if we define trust as firm belief in the reliability, truth, ability, or strength of someone or something while simultaneously holding in mind that the schizophrenic and the caregiver are seeing, literally two different worlds, then the development of trust becomes a long and hard road.
But there really isn’t as far as I can see any other choice, so this is a story about people walking together down a long hard road, together.
Lastly, please do not construe any of the information contained within this project as professional or disposition advice. No organization mentioned, directly or indirectly, is responsible, nor do they warrant, any of the information contained within this essay. This work is only the work of a well-intentioned and hard-working student.
It is imperative that you consult qualified medical treatment providers in the event that you have any questions regarding the treatment of Schizophrenia, or any form of psychosis.
The National Institute of Mental Illness (NIMH) reports that “in the United States, an estimated 11.5 million adults suffer from a seriously disabling mental illness, such as schizophrenia, bipolar disorder, and major depression.
Based on estimates for 2010, mental disorders accounted for 21.3 percent of all years lived with disability in the United States. Among the top 20 causes of years lived with disability, five were mental disorders: major depressive disorder (8.3 percent of the total), anxiety disorders (5.1 percent), schizophrenia (2.2 percent), bipolar disorder (1.6 percent) and dysthymia (1.5 percent).”
Research suggests that schizophrenia may have several possible causes:
- Genetics. Schizophrenia isn’t caused by just one genetic variation, but a complex interplay of genetics and environmental influences. The highest risk occurs when an identical twin is diagnosed with schizophrenia. The unaffected twin has a roughly 50% chance of developing the disorder.
- Environment. Exposure to viruses or malnutrition before birth, particularly in the first and second trimesters has been shown to increase the risk of schizophrenia. Inflammation or autoimmune diseases can also lead to increased immune system
- Brain chemistry. Problems with certain brain chemicals, including neurotransmitters called dopamine and glutamate, may contribute to schizophrenia. Neurotransmitters allow brain cells to communicate with each other. Networks of neurons are likely involved as well.
- Substance use. Some studies have suggested that taking mind-altering drugs during teen years and young adulthood can increase the risk of schizophrenia. A growing body of evidence indicates that smoking marijuana increases the risk of psychotic incidents and the risk of ongoing psychotic experiences. The younger and more frequent the use, the greater the risk. Another study has found that smoking marijuana led to earlier onset of schizophrenia and often preceded the manifestation of the illness.
The DSM IV diagnoses Schizophrenia as being, ” characterized by profound disruption in cognition and emotion, affecting the most fundamental human attributes: language, thought, perception, affect, and sense of self.
Symptoms are typically divided into positive and negative symptoms because of their impact on diagnosis and treatment.
Positive symptoms are those that appear to reflect an excess or distortion of normal functions.
Negative symptoms are those that appear to reflect a diminution or loss of normal functions. These often persist in the lives of people with schizophrenia during periods of low (or absent) positive symptoms.
Negative symptoms are difficult to evaluate because they are not as grossly abnormal as positives ones and may be caused by a variety of other factors.
Diagnosis is complicated by early treatment of schizophrenia’s positive symptoms. Antipsychotic medications, particularly the traditional ones, often produce side effects that closely resemble the negative symptoms of affective flattening and avolition.
Problems of treatment, communication and care are further compounded by the symptom of anosognosia.
According to The Treatment Advocacy Center, (TAC)”Anosognosia is a common symptom of schizophrenia and bipolar disorder with psychotic features. Also called “lack of awareness” or “lack of insight,” it has an anatomical basis that has been confirmed in multiple scientific studies.
The word anosognosia comes from the Greek word for disease (nosos) and knowledge (gnosis) and literally means “to not know a disease.” It …is the most common reason that individuals with schizophrenia and bipolar do not take their medications… They do not believe they are sick, so why should they? Without medication, the person’s symptoms become worse. This often makes them more vulnerable to the consequences of non-treatment, which include arrest, incarceration, homelessness, victimization, suicide and violence.”
The American Psychiatric Association, in 1994, wrote in the Diagnostic and Statistical Manual IV TR that: “A majority of individuals with schizophrenia have poor insight regarding the fact that they have a psychotic illness. Evidence suggests that poor insight is a manifestation of the illness rather than a coping strategy. It may be comparable to the lack of awareness of neurological deficits seen in stroke, termed anosognosia.”
Dr. E. Fuller Torrey writing for Mental Illness Policy Org. concurs: “Anosognosia is a major problem… caused by damage to specific parts of the brain, especially the right hemisphere.”
Dr Fuller further notes that: “Impaired awareness of illness is a strange thing. It is difficult to understand how a person who is sick would not know it. Impaired awareness of illness is very difficult for other people to comprehend. To other people, a person’s psychiatric symptoms seem so obvious that it’s hard to believe the person is not aware he/she is ill. Oliver Sacks, in his book The Man Who Mistook His Wife for a Hat, noted this problem:
‘It is not only difficult, it is impossible for patients with certain right-hemisphere syndromes to know their own problems …And it is singularly difficult, for even the most sensitive observer, to picture the inner state, the ‘situation’ of such patients, for this is almost unimaginably remote from anything he himself has ever known.'”
Until recently, studies and treatment of this phenomenon has been limited, in no small part secondary to a common belief, shared by the medical and general communities alike, that this lack of insight was not part of the disease process but was, rather, a willful behavior on the part of those who suffered schizophrenia.
Despite these early misunderstandings, the topic has become increasingly important among researchers studying psychotic disorders. A special report authored by Dr Xavier Amador (the author of the LEAP project discussed below) notes that: “A MEDLINE search from 1998 through December 2005 in which the key words/terms “schizophrenia,” “insight into illness,” and “awareness of illness” were used revealed that 200 empiric studies of poor insight in schizophrenia have been published in the peer-reviewed scientific literature since 1991. Before that time, there were fewer than 10.”
Moreover, extensive studies reported since the onset of this class and as described below indicates that multimodal treatment aids in increasing a patient’s insight concerning the effects and realities of her symptoms.
Additionally, as TAC notes, “Impaired awareness of illness is a relative, not an absolute, problem. Insight in some individuals may also fluctuate over time, with awareness being heightened during periods of remission but lost during periods of relapse.”
Before turning to consideration of THE LEAP practices, however, I would like to provide both verbal and visual portraits of two young men suffering from schizophrenia in order to provide the reader with a more complete insight into the nature of schizophrenia as well as some clarity as to the actual daily physical and psychological manifestations of the symptoms of anosognosia.
The following is a brief description of the circumstances involving my sons’ diagnosis and subsequent treatment for schizophrenia. From a clinical point of view their cases are of interest because they are identical twins both diagnosed with schizophrenia, at age 21, approximately 6 mos apart.
From a clinical point of view it is equally true that they are but two of many millions of people suffering from a disease which demonstrates a broad number of symptoms and is caused by numerous possible onsets. Given these facts, their cases are not dispositive as to schizophrenia as a whole.
The cases of Matt and Jake, are however, helpful in that in many ways their circumstances are typical and may serve to provide insight for others just beginning to grapple with this perplexing disease.
Matt and Jake’s cases were typical. for instance, in that throughout their childhoods and teens years, it was often clear that they were suffering from some sort of problem; though obtaining a diagnosis of those problems was nearly impossible. This is common.
Schizophrenia is confusing for many reasons. Diagnosis of the disease, for instance, can be an uncertain and/or difficult process. For instance, It can be difficult to diagnose schizophrenia in teens as the first signs can be as subtle as a change of friends, a drop in grades, sleep problems, and irritability—common and nonspecific adolescent behavior.
Additionally, the full onset of schizophrenia is typically preceded by a gradual ‘prodromal’ (pre-cursor) period where odd behaviors and experiences, such as anxiety, restlessness and hallucinations begin to occur, but not yet with their fullest force. There may be a subtle, gradual, loss of reality.
Many schizophrenic sufferers describe the onset of odd feelings, thoughts and perceptions a few months before anyone else can see visible evidence of them, thus it can be quite difficult to recognize schizophrenia during this early stage, particularly if it is a new diagnosis.
Schizophrenia can also be difficult to diagnose as there is no single definitive test to confirm the presence of the disease and the disease can present secondary to any number of potential causes.
Most recent studies show that the biological pieces of the disease exist at birth and that there exists a slowly ticking alarm which does not ring until the late teens or early twenties. There can be symptomatology, problems, along the way, though schizophrenia is often not diagnosed until subsequent of the time of the first break.
The cases of Matt and Jake are also common in that the etiology, or cause, of their schizophrenia is uncertain.
The bottom line is that both Jacob and Matthew were, at various stages in their lives, prior to diagnosis, subject to more than several of the disease’s possible causes including genetics, head trauma through sports, living for extended periods of time in a stressful household (their mother and I divorced during their teen years though we have since reunited), engaging in serious drug abuse including the use of marijuana and LSD and other mind altering chemicals and possible exposure to viruses before birth.
I’d also note parenthetically, that this inability to assign an etiology, or cause, to their illness was very frustrating at the onset. There is I believe, a common transient belief that being able to define the cause of the condition will aid in finding a solution. This belief while natural for parents concerned about their children is not supported by research.
Pragmatically, I also, now, personally believe that there is nothing to be gained in searching for this etiology and that any all available efforts are better focused on rehabilitation and the search for a cure.
As for current symptoms, both Matt and Jacob tend to express and suffer from widely divergent symptoms. Their presentations or the symptoms they display tend to be very different for each despite the fact that they are identical twins raised under near identical conditions in the same setting.
Accordingly while both have exhibited, especially prior to being medicated, psychotic manifestations, such as hearing internal voices or experiencing other sensations not connected to an obvious source (hallucinations) and both have assigned unusual significance or meaning to normal events or holding fixed false personal beliefs (delusions); their current daily behaviors and/or symptoms differ sometimes a great deal.
This fluctuation in symptomatology, behaviour and competence is both typical and often very taxing on the caregiver.
Additionally, because the health and sanity of the caretaker directly impacts the care and health and sanity of those suffering the condition, it is important that the caregiver and the afflicted both be cared for.
Furthermore, my experiences, to date, have lead me to believe that one can best care of the health and sanity of all involved by working to ensure the ability of all to clearly communicate in an environment of trust. Even if one is often left feeling like they are screaming into the wind in a very large and empty field.
For, on a personal level, schizophrenia is all too often a problem of communication. The schizophrenic cannot, all too often, convey his or her needs, or convey the realities of what is occurring in their mind.
More frequently, our sons cannot, or will not, (it’s often open to debate what they hear on any given day) hear what we are saying.
One can tell them 100 times, for instance, not to take our credit cards, without permission, to buy cigarettes or chew but the odds are that we will not be heard (J&M, like many schizophrenics, have a terrible addiction to tobacco. Research now suggests that people with brain disorders smoke at a high rate partly because nicotine reduces some of the cognitive dysfunction that is a common symptom-In fact it has been estimated that 44% of all cigarettes used in the US are smoked by the mentally ill. Nice huh? ) .
Because of such inability to communicate, caregivers are unable, or hindered, in their ability to assist the schizophrenic. Frustration arises on both parts. When this pattern is repeated time and time again, frustrations can become very great. As this pattern is repeated time and time again, throughout weeks and month, patience wears thin on both sides, the possibility for conflict arises secondary to frustration arising from unmet needs.
Moreover, and as discussed, because the symptoms and overall mental health of the schizophrenic can wane and ebb, the schizophrenics needs and desires are not necessarily static. It is not possible to guess what he or she wants, or needs, based solely upon past needs and preference. Tomorrow is never necessarily like yesterday. Thus care is rarely a matter of routine or predictability.
In this way, and in our experience in the broadest and simplest sense, having a schizophrenic in the house can be a lot like having a severe alcoholic in the house. Both are unpredictable, there is often a sense of waiting for the other shoe to drop. It’s often difficult to reason and there is often a denial of impairment or symptoms.
The caregiver can often feels that one is living without control, or that one possesses no control over his or her life. Such stress can constitute a chronic stressors which can degrade health of both the sick and caregiver (Boardman 2004).
Becky and I had both grown up with alcoholics in our family. Dealing with the boys and the onset of their disease was a flashback to those unwelcome times. The hallmark of both experiences, of both periods, was the fact that there was no predictability, no routine in our lives-then or now.
This state of siege was especially notable prior to the twins diagnosis and medication. Life was frequently difficult, and communication grew worse with each year. Trust ebbed on the part of all parties.
There was no control, only ever increasing and ongoing conflict, dread, over what might happen next. Nothing we did seemed to matter. The twins flat out did not give a damn about consequences. We tried everything short of tossing them out in the street; to no avail.
In a period of five or so years the twins went from fairly conventional soccer playing suburbanite, with many interests and friends, to becoming very troubled kids.
Life, during the twin’s teens years, was one thing after another. Some incidents were humorous. Matthew, in junior high, attempted to leave a dull class taught by a poor teacher by faking a seizure much to the delight of his classmates.
Both began drinking and taking drugs. We obviously attempted to curtail that behavior, but were largely without success. The twins come from a very long line of alcoholics-myself included. I had always know that drinking and drugging would come to them and that given their genetic background, they’d be hard pressed to remain sober.
Once, early on, I was out of town, they threw a large party in my house. Drunken stoned youths filled my house. The police were summoned. Someone during the party set a $900.00 printer against a radiator killing it.
Later- months, years- it’s all a blur-Matthew was arrested with a friend after breaking into, or walking into a number of open, garages with a friend. They looted the garage refrigerators and spent the night strolling about suburban streets drinking stolen beer and wine. They walked the front door of one home and stole an expensive baseball bar from the hallway which they used later a battering ram in various stunts. They broke into a car and stole expensive sunglasses.
A neighbor heard the commotion and called the police. The police arrived to find Matt standing over his now passed out friend- a bat in his hand.
Nothing I could say or do, in the coming days or weeks or months could make him appreciate that he had put himself at risk for being shot and killed at least twice.
Other adventures followed. I let him sit in jail hoping time part would help him understand. He only grew more angry, bitter.
Jacob was initially more stable and then become out of hand. He began drinking on a regular basis, broke up and reunited any number of times with his long term girlfriend.
After high school, however, Jacob did manage to graduate, with good grades, from firefighting school. There was a celebratory party.
Later that night there was a panicked phone call from Jacob’s screaming girlfriend. The host, not realizing that Jacob was only 19, over-served him. Jacob got drunk and belligerent and picked a right with ten or so classmates. They all, in fierce embrace, tumbled down a set of steep stairs and and put a large hole in the basement wall.
The host was demanding that I drove 40 miles across town in the early morning and collect my son and his care or the police would have to be called.
Somewhere in there, Matt stole Becky new car in the middle of the night. He was drunk, he totaled the car in a one car crash. I arrived at the police station to find him being escorted by three of our local cops. Matt was yelling, for no apparent reason, into the night, “purple marshmallows, purple marshmellows.”
Months later, at a downtown hotel in his twentieth year Jacob become very drunk and quarrelled and then wrestled with guests at his girlfriend’s employer’s christmas party.
When security guards came, he fought them. His girlfriend called us at home, on her cell, in hysterics. I attempted to talk security into releasing him to me, but they refused, he had been too belligerent, too violent.
I went to bed and awaited the inevitable phone call. It came at 3am. A desk Sergeant said that Jacob was, apparently, so drunk that he was incoherent and could not appreciate that he was in jail. He awoke from a blackout believing that he had been abducted. He unscrewed a floor drain from the concrete floor of his cell-with his fingernails and threw it through the window of his cell door.
Given his behavior, the Sergeant said, it was necessary to subdue him, there was bruising ect. He was the father of boys and he just wanted to do me the favor of letting me know that my son would not be home that night and would be arraigned that monday morning.
On Monday morning he drew a hard ass of a judge. The prosecutor charged him with felony mischief among other charges a charge the judge intoned that carries a maximum penalty of ten years in the Kentucky penitentiary.
I had been a trial lawyer for twenty years at that point and those minutes were the only time I have ever came close to collapsing in court.
I let Jacob sit in jail for four days to contemplate his stupidity. When I picked him up he was very bruised and battered. He did not remember being taken to jail, though he did recall trying to escape. He said that he could not comprehend that he was in jail, he thought that he had been kidnapped. He did recall being several beaten by several of the jailers.
Those are the highlights, there are many other similar stories.
Neither Becky nor I were nor are, by any stretch of the imagination conventional people- we can both roll with the punches and are fine living a life outside the borders of normality, but living with two Jacob and Matthew in those years was much like living in a frat house for the mentally challenged. It was like living on a non-stop rollercoaster.
Throughout those years we took them for counseling at various practices and agencies. Some of it Court ordered, some set up on our own. It was always the same. They didn’t have a problem they didn’t need help. Sometimes they would go after a extended period of bribery, begging and threats only to spend the entire hour silently staring at a wall, pointedly refusing to speak.
More than once, alleged experts in troubled teens told us, “don’t bring him back, I can’t do anything.”
The most infuriating thing about these visits were that I could never get an answer as to whether these experts believed that Matt and Jacob had a legitimate problem, beyond their control; or whether they were merely acting out- being assholes.
Throughout their entire childhood, I suspected that they did have some problem, which to some degree, left them unable to control their behavior and emotions. But that line always moved. Some days they seemed entirely responsible and other days they seemed unable to help themselves.
From the time the boys were about fifteen until the time they were diagnosed, things went from occasionally problematic to being stressful on a near daily basis.
Matt barely graduated from high school despite being as smart as nearly any of his classmates. He refused to go to school. He missed thirty days at a stretch and Becky and I- now divorced were summoned to a truancy meeting. This was especially problematic for Becky since she worked for an education service center that supported the boys high school.
Matt eventually went to the “Success Academy.” A shitty trailer behind the school where problem children were warehoused with apathetic teachers and administrators. They were not taught, merely contained. At the end of the year they were given diplomas in order to protect the schools fraudulent pass rate.
Jacob did graduate from on the standard program.
Matt, after high school, spiraled downward.
In the years prior to their diagnosis and treatment every day was anything could happen day.
The boys may get drunk and wreck the car, or they might drop acid, stay up all night and attempt to climb out the window and run through the neighborhood in the early morning rain, thus guaranteeing a visit for the local small minded police force. They might have long violent fights destroying furniture and punching holes in the walls.
They might stay up for days on end playing video games. Jacob was prone to drinking excessively and becoming very violent after drinking.
In desperation I decided to take Matt with me on a trip out West, (Jacob seemed largely stable at this time and was working), my thought being that if I spent every single moment with him, that I would gain some insight into his problems. I learned, in a nutshell that he was much sicker than I realized.
Returning home, I finally convinced Matt to see a psychologist I knew and trusted. The night before Matt’s first appointment he was arrested for trespassing.
He was walking down our suburban middle class street in a bathrobe when he became concerned that someone in a neighbor’s home was in peril. He knocked on the door and tried to advise the neighbor of their plight.
The cops were called. Matt was charged.
The next day we went to see the psychologist who recommended a full exam by the people at the Lindner center, a private psychiatric hospital run by the University of Cincinnati.
I took him to Lindner the next day. He was diagnosed with Schizoaffective Disorder. They recommended that he be admitted. They did not know how long her would be there. After nearly three weeks of much-needed sleep, medication and treatment by a dedicated staff, he was able to leave and begin the outpatient care (outlined below) he has faithfully followed to this day.
Some six months later, Jacob began acting in a very strange manner. He moved at a snail’s pace, posing as if he were a great blue heron hunting in the river. He maintained this, and other poses, for minutes on end. He would not communicate, and/or seemed unable to communicate. He sat uncommunicative for hours on end. He said he was meditating.
We had, by now, been educated that there was a 50% chance that Jacob would also become psychotic/schizophrenic since he and Matt were identical twins.
I took him to Linder where he was evaluated, admitted and remained for several weeks.
After completing their respective stays at the Lindner Center, both were referred to the FIRST Program, through Cincinnati Behavioral, for the follow-up care described below.
Becky and I were both at a loss. Helping them seemed beyond our control.
More than anything, I, in the early days, wanted to know, were my sons behaviors volitional or beyond their control? For me, how I treated them, related to them, turned on this question. Could they help themselves, were they responsible for their own actions?
Finally having a diagnosis was helpful but did not necessarily answer my questions or make life any less stressful.
In some way, however, the initial diagnoses did make things better.
In time, and on a personal level I came to understand that both Matt and Jacob did have very real problems. Having these problems confirmed by competent health care workers, psychiatrists and social workers helped me understand that the last five hellish, at times violent, heart breaking and bewildering years were, to some degree, beyond the control of my sons.
I was now convinced that they were sick and needed serious help. With this recognition came some degree of peace, much of the anger I held for their behaviour was transformed to empathy, sadness and concern.
Being able to put a name to the disease did not necessarily make our lives easy on a logistic level.
Both had wanted to leave the hospital early, both were reluctant to stay. Both denied that they had problems despite abundant evidence to the contrary. Both were resistant to treatment even though they ultimately went secondary to bribery, threats and or occasional screaming.
We both missed a lot of school, work and other events and appointments secondary to the many doctor and office visits both must necessarily take. We cannot leave them alone for extended periods of time and so rarely go out on our own. We have not had a night away from the house since their respective diagnosis.
What was ultimately clear was that we needed to find a way to communicate with them. We needed to find a way to restore the trust that had been eroded over the past decade.
Fortunately, Matt and Jake’s behavior, their ability to function in the world, did improve after being hospitalized and medicated and undergoing continuous intensive treatment.
They were, however, by no means normal or healed, and they would, at least for the foreseeable present, if not beyond, need someone to look out for them. They would need someone to think for them, on occasions, and to ensure that they didn’t put themselves in less than safe situations.
The problem was, however,that they were 22.
They had not been remanded into our care and were, for all intents and purposes, free adults. They did not, simply stated, have to listen to us. We could not threaten them with being sent to their rooms.
If we were to walk this fine, it would be necessary to collaborate, to have them understand that we were looking out for their best interests. In other words, they would have to trust us to make decisions which were sometimes contrary to their desires.
A Possible Solution
Dr Xavier Amador is currently a Visiting Professor of Psychology at the State University of New York, over two decades he also served as a Professor of Psychiatry and Clinical Psychology at Columbia University and Professor of Psychology at New York University.
In addition to his books, Dr. Amador has published over 120 peer-reviewed scientific papers and many other publications that have been translated into more than 20 languages. His research on psychotic and mood disorders has made him a worldwide expert in the mental health field.
He was also a section Co-Chair of the only peer-reviewed text revision of the Diagnostic and Statistical Manual for Mental Disorders (DSM), the authoritative diagnostic manual used by mental health professionals world-wide.
Dr. Amador also is the founder of the LEAP Institute, which is based on his research, personal-life and professional experience as a therapist. LEAP teaches the importance of strong relationships in everything from treating illness, to healthy couples, to effective business practices.
Dr Amador developed these practices while working with his brother, a schizophrenic, over a twenty year period.
The purpose of LEAP (“Listen-Empathize-Agree-Partner”), according to Dr Amador, is to show clinicians and caregivers, “how to quickly gain the trust of someone you are at odds with. When you Listen–Empathize–Agree–Partner, you stop trying to convince the other person he is wrong, or simply misguided and instead listen in a new way that conveys respect for the person’s point of view and complete lack of judgment.”
Dr Amador argues that this type of approach is both necessary and most effective because anosognosia, in its most succinct form, means that the patient suffering this condition may be- to varying degrees-perceiving a different world, a different universe and believes, as strong as you believe that the sun will rise tomorrow, that his or her perception of the universe is as accurate, if not more accurate, than any other person in the universe.
Therefore, according to Amador, taking the position that you are sane and therefore know best, can only lead to conflict. Whether or not you are right, on any given topic, is not the point.
The point is to help.
This fact is complicated by the fact that the patient has, for a very long time in his life, enjoyed the ability to accurately perceive the world and his or her place in it. Additionally it is often not clear to the patient that there came a point of time when he or she should stop trusting his or her perception of reality.
Additionally, because schizophrenia comes on later in life and is not often diagnosed until well after a first break. Thus, the schizophrenic has every reason in the world to believe that the psychotic visions playing out in his or her head are accurate and true given that they were often capable of leading an independent life before their first break.
In the same way, if a stranger walked up to you on the street and told you that the sky was orange and demanded that you confirm that fact and subsequently demanded, after your maintaining that the sky is blue, that you take anti-psychotic drugs and be contained to a psych ward because of your opinion, the odds are strong that you would be neither peaceful or cooperative.
In the same way, the schizophrenic will steadfastly maintain his or her version of reality and you will never change that perception, through logic or reason, any more than you can change the color of the sun through logic or reason.
Dr Amador points of that because those afflicted with schizophrenia and similar forms of psychosis often demonstrate, to varying degrees a, “very severe lack of awareness…” as well as a firmly rooted conviction that their, ” beliefs exist,” despite the presence of a conflicting evidence, the schizophrenic will cling to his or her psychotic beliefs, in the face of all other realities, to the degree that he or she will offer, “confabulations, or illogical explanations, for such behaviors and beliefs.”
In short, often no amount of argument or logic will ever convince a psychotic individual to accept your point of view. Thus because the schizophrenic knows that he or she is correct, logic, persuasion or argument is all too often futile.
What is not futile according to Dr Amador is adopting a trust based form of communication. That is, to gain the trust of the patient through the creation of partnership and empathy.
According to Amador, “LEAP focuses on transforming the relationship first. You do not win on the strength of your argument; you win on the strength of your relationship.”
Implementation of this form of communication, according to Amador, “results in an immediate lowering of tension, anger and defensiveness. As you convey genuine understanding, empathy and respect for someone’s point of view, even when you disagree with it, you are free to find common ground on which you can partner. And suddenly, your opinions and advice start to matter a great deal.”
The doctor knows best approach, according to Amador, that is the assertion of blind authority, “will not work,” instead, “collaboration is the goal, but not a given.”
Collaboration is the key according to Amador because there is no cure to schizophrenia, there is no silver bullet, though long working treatments (injectables) are a patient’s best hope for improvement.
However, for all the reasons already discussed, patients, at best, will remain weary about taking such medications, over an extended period of time, meaning that this issue will need to be revisited time and time again, making the existence of a trusting relationship critical.
In support of this position, Amador cites a 2004 meta-study demonstrating, “psychoeducational interventions without accompanying behavioral components and supportive services are not likely to be effective in improving medication adherence in schizophrenia. Models of community care such as assertive community treatment and interventions based on principles of motivational interviewing are promising. Providing patients with concrete instructions and problem-solving strategies, such as reminders, self-monitoring tools, cues, and reinforcements, is useful. Problems in adherence are recurring, and booster sessions are needed to reinforce and consolidate gains. ( Interventions to improve medication adherence in schizophrenia.Zygmunt A. )
A review of more recent literature notes that, “nonadherence remains a challenging problem in schizophrenia. The heterogeneity of factors related to nonadherence calls for individually tailored approaches to promote adherence.” (Interventions to improve adherence to antipsychotic medication in patients with schizophrenia–a review of the past decade. Barkhof E ).
In fact, a 2014 study based in China, suggests that a long term trusting relation with an (basically educated) caregiver may ultimately result in better compliance than the current system of relying upon psychiatrists given that “a lack of specialists is a common problem in resource-scarce areas in China.”( Village doctor-assisted case management of rural patients with schizophrenia: protocol for a cluster randomized control trial Wenjie Gong) .
The Application of LEAP
Jacob and Matthew were both evaluated and then initially treated over multi week stays at The Lindner Center in Cincinnati. Once they completed their stay at the Lindner Center and were released, they were red to the First Program, through Cincinnati behavioral, in Cincinnati, for follow up care.
Both The Lindner Center and The first program emphasized the need for obtaining a diagnosis sooner, rather than later. Both stressed that early diagnosis and treatment can greatly reduce hospital stays and relapse rates, and improve treatment outcomes. FIRST uses both professionals and family members, as defined by the client, as their recovery team members.
Per their website, FIRST is a specialized treatment program for:
- People who are between the ages of 15 and 40.
- People who have had psychotic symptoms for no more than 18 months.
- People diagnosed with schizophrenia, schizoaffective disorder, schizophreniform disorder or other specified/unspecified schizophrenia spectrum and other psychotic disorder.
FIRST through providing multi modal forms of treatment attempts to.
- Provide support and education for the individual and their family.
- Improve their recovery.
- Reduce their chances of suffering a relapse.
- Help the individual set goals for the future.
To use the FIRST program, an individual must agree to participate in at least two of the following treatment components:
- individual counseling
- psychiatric care
- supported employment/education
- family education
- case management
Because both Becky and I had no experience with providing primary care to a family member dealing with schizophrenia let alone two were referred to NAMI or The National Alliance On Mental Illness, a non-profit organization which is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization.
Of paramount importance to us was the fact NAMI offered what they called NAMI Family-to-Family: a free 12-week course for family, caregivers, and friends of individuals living with mental illness. In essence a free crash course on Schizophrenia from other similar situated lay people people who understood and could feel our pain.
The course was taught by trained family members who also have loved ones living with mental illness. We were taught, not by mental health professionals but trained non professionals who understood what it means to live with someone who has psychosis. Their experience and experiences were written in their haggard faces, wrinkled clothes and breaking voices.
In short, FIRST began to intensively treat the twins and we were educated, in a very pragmatic manner, about how to deal with the twin’s illness.
More than anything, I, in the early days, wanted to know, were my sons behaviors volitional or beyond their control? The last two years had been hellish, at times violent, heart breaking and bewildering. In the years prior to their diagnosis and treatment every day was anything could happen day.
In short, we both received, through NAMI’s 12 week Family To Family course, “compassion and reinforcement from people who could relate to our experiences.”
If I were to sum up in a nutshell what I learned from all three programs, it would be that:
- We were- all things considered lucky.
- That schizophrenia was very much a disease involving relationships and trust and the lack of relationships and trust.
- That the ability to communicate with our sons in a meaningful manner was going to be critical.
We were lucky because we were referred to FIRST just as the program was being launched, FIRST was program funded by the state of Ohio and was patterned on other prior successful programs around the Country. Because this was a new program, the boys received more care then they might have from other programs.
The best hope for schizophrenics like our sons was for them to receive intense multi-modal treatment immediately after the onset of their first respective breaks (Thus the name of the program). Consistent and constant treatment in a variety of forms, we were told was our best hope of returning our sons to meaningful lives.
The professionals at FIRST were very much of the opinion that counseling, job training and case management were just as important as the meds.
The people at FIRST who had been living these experiences seemed to be of the same opinions. Establishing a relationship with our sons would be critical to their recovery. What we needed to understand was the boys were- especially early on- living in their own worlds which did not necessarily comport with or look like our worlds.
We also learned that living in such a world is isolating and scary and that they would need friends, guides to help them through the process. Trust between caregivers and the ill, was paramount and that it was necessary to be kind and respond with patience and understanding event when their behavior was inexplicable, infuriating or frightening.
During the course of the NAMI program I learned about LEAP from a husband and wife who had been dealing with a psychotic son for several years. They were kind enough to give Becky and I a copy of Dr Amador’s Learn to LEAP video which is a prestation of his practices before a group of mental health professionals.
I also read Dr Amador’s Book I AM NOT SICK which chronicles his experiences with his schizophrenic brother.
The LEAP (Listen-Empathize-Agree-Partner) training programs teach participants a set of evidence-based practices to strengthen mutual respect and trust with the aim of developing effective partnerships among a range of persons in a variety of settings.
According to Dr. Amador, the success of the LEAP approach rests on three pillars:
- Patient Focus: Developing a new relationship with the mentally ill person that focuses exclusively on problems that the “patient” perceives, or seeing the world through the patient’s eyes.
- Treatment Team: Breaking down the barriers that keep the provider, family, other stakeholders (law enforcement, judges, attorneys), and patient from functioning as an effective team.
- Common goals: Finding common ground between team members and patient, that can be shaped into goals that will be worked on together
Throughout all of his materials, Dr Amador argues that “severe problems with insight into illness are most often a consequence of the disorder (schizophrenia or bipolar disorder) stemming from brain dysfunction (i.e., anosognosia) rather than defensiveness and/or personality factors.”
That is, in the case of most schizophrenics, contrary behavior is not willful. It is part and parcel of the illness.
Secondly, this type of practice is critical as, “contrary to popular belief, treatment with antipsychotic medications and/or mood stabilizers rarely results in significant improvements in insight. ” Accordingly, while long-term injectables provide a wide range of benefits, they do not alleviate or cure the problem of anosognosia.
That is, even with medication, the schizophrenic will very much remain unaware of the nature of his delusions.
Furthermore, Amador argues that, “Among the top 2 predictors of medication adherence are: 1) Awareness of being ill (which for all the reasons described above is often not forthcoming even with therapy and medication); and, 2) The development of a relationship in which the patient feels that you: A) Respect his/her point of view B) Listen to him or her without judging or reality-testing.
Subsequent to an opportunity to consider all these factors, we began to serious work with the twins pursuant to Dr Amador’s approach.
My decision to engage in these practices were based on the fact that I found many of Dr Amador’s claims consistent with my own findings and observations.
For instance, even though we had been fortunate in finding effective long lasting medication for both early one- they were both on 30 day injectables- and even though the meds obviously provided them substantial relief on multiple level; the meds, even after a year, did not serve to reduce their anosognosia.
In speaking with their lead therapist more than a year after their initial treatment and medication, she opined that on a scale of 1-10 she thought that Jacob’s anosognosia was a 4 and that Matt’s was a 9.
Because this opinion was consistent with my own observations and because the twins continued to have significant difficulties in performing even basic to moderate activities of daily living (ADLs). Neither could remain employed for any period of time, even at entry-level positions, they had few friends, they had no real social skills. It was our hope, therefore, that these practices would enable them to work with us- and their treatment team- in a more effective manner, thus improving their treatment and their abilities to engage in ADLs.
Specifically, this meant, under LEAP, that we needed to:
- Listening reflectively to what the twins said, whether or not we agreed with their comments and whether or not their statements contained delusional beliefs, beliefs about not being ill and, or a desire to avoid treatment.
- I also engaged in discussions involving suggested questions, such as: What are the disadvantages and advantages, if any, to taking medication; do you believe you have a mental illness, what frustrates you the most?
- We also went over the Attitudes and Beliefs Checklist (ABC) which involved four general categories of questions to consider and information for which to listen, including medication; mental illness; frustrations and self-concept and desires.
- I also attempted to pay special attention to attitudes and beliefs that caused interpersonal friction and to those that motivate.
- We attempt to, when listening: to express our empathy for their frustrations, as well as their wishes to avoid treatment.
- We also attempt to normalize their experiences whenever possible. We do this by insisting that they earn money to buy cigarettes, take part in daily family activities and bonding (having them help me cook dinner on a daily basis, eating together, watching hockey games). Becky will also walk with them throughout the neighborhood and I take them with me, whenever possible, when I am out running errands or chores (such as my weekly trip to Findlay market and/or Jungle Jims) so as to work on their ability to socialize.
When called upon – either by request or circumstance to offer an opinion likely to be contrary I try and give my opinion, per LEAP practices, using the Three A’s.
This means we discuss only perceived problems and in discussing same practice: a) Apologizing, by using statements such as: “Before I tell you what I think about this, I want to apologize because it might feel hurtful or disappointing.” b) Acknowledging Fallibilityy: “Also, I could be wrong. I don’t think I am but I may be. c) Agreeing: “And, I hope that we can just agree to disagree. I respect your point of view and I will not try and talk you out of it. I hope you can respect mine.
We then try and partner in the hopes of helping Matt and Jake achieve their goals. This means: a) Identifying relevant steps b) Agreeing what each of us will do to reach the desired goal c) Creating an agreement about what will be tried and for how long
In trying to determine whether or not these practices are successful, it’s necessary to note, up front, that quantifying any results, as to our sons, is nearly impossible. Neither Becky nor I possess the education or experience to rate the twins behavior via a vis the average schizophrenic.
We probably do possess a better background than many- she has taught special education for over a quarter century and in additional to the year of nursing school I have completed, I also have twenty years experience as, inter alia, a social security disability attorney where I confronted and researched psychological issues and illness, including schizophrenia, on a near daily basis.
However, no one can be objective when caring for two schizophrenic sons. There’s too much which occurs every day to make any scientific sense of the boys, their behavior and our well-intentioned, and sometimes inadequate, reactions.
I can say without a doubt that I appreciate that schizophrenia is, as I said before, a disease of communication. I also agree that the building of a trusting relationship is essential to making any progress toward recovery. Schizophrenia entails a broad array of issues and behavior across a large-scale. Some are more amenable to treatment than others.
I can also state that while I cannot quantify with any specificity the progress my sons have made since we have engaged in these practices, I can say without a doubt that these practices have helped us to move in the right direction.
I have always obviously felt the need to maintain a close relationship with my sons, though this illness has, to a very heightened degree, made me aware of the importance of maintaining a positive and close and trusting relationship.
Simply said, there are times when the twins, for their own good, will need to trust me to take action and or have opinions which are contrary to the desires and expectations. Should I not maintain the trust upon which our relationships is built, then the odds of their trusting me to makes those decisions, to take those actions will be greatly diminished.
Empathy- the ability to understand and share the feelings of another, requires much more commitment than sympathy, which is merely feeling sorry for another. LEAP is difficult because one must appreciate and make an effort to understand the sometimes heartbreaking emotions being felt by those who are ill. One must partner active listening with empathy and feel what one’s love one is feeling: the hurt, the fear, the utter confusion.
It’s a painful thing to go to that level, but once one has made the effort to emphasize, and once that effort is understood, then trust can exist because you can now know their pain, limitations and frustrations. Clarity of vision under these circumstances yields empathy and this empathy generates a great desire to be there under all circumstances. You come to realize that life is a collaboration and not a scoreboard.
Under these circumstances it does not matter who is right or wrong, it matters that we move down that long dark road together with mutual trust and respect. It matters that we look out for each other to the best of our abilities.
These realizations have, for me, made all the difference, have made this sometimes dark process bearable. I feel that we now move forward to do the difficult things necessary to move forward, and hopefully one day, get well.