The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.
In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.
Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?
We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.
Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.
It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.
It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.
Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.
Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.
Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.
Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.
It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.
Your thoughts are always welcome:
By Elin Widdifield
I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.
Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
— Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.
Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.
When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.
All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.
The Merriam-Webster dictionary defines Grief in part as the following:
A: deep and poignant distress caused by or as if by bereavement
B: a cause of such suffering
Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.
When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.
Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1
When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.
Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.
The journey was jagged.
Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.
Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.
I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.
One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!
Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.
Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.
If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.
2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org
Comments always appreciated!
This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
The dangers of “coddling” a child who lives with serious mental illness. Five ways to be supportive instead.Posted: July 31, 2014
My biggest mistake was trying to fix everything for him. He never learned how to do it on his own.
This is what a mother of an adult son who lives with serious anxiety and depression now says. From an early age, Jonathan* seemed more sensitive than other kids. During adolescent and teen years he showed symptoms of anxiety and depression. His mother tried to resolve issues for him because mothers want to make things better. But in doing so, she’d give him the solution rather than allow him to make his own way through problems. She did the heavy lifting to get him out of his darkness. She’d say, “Let’s go for a walk.” Or, “How about I take you somewhere.” “Maybe we should watch a movie.” In other cases, she’d shield him from potentially difficult situations. She tried to rescue him. “That was my mistake,” she now admits.
… finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty.
Protecting a child from physical harm and nurturing through difficult emotional benchmarks are givens in a mother’s job description. But finding the fine line between being protective and supportive versus coddling for an overly sensitive or atypical child can be shifty. Parents we interviewed for Behind the Wall described atypical children who almost always had real limitations in social and school settings caused by anxiety or over-sensitivity. Sadly, it is not uncommon for a spouse or the child’s other parent to disagree about where the line of competency exists, creating friction in the home and between family members resentful of “special treatment”. Disagreement between parents about a child’s competency can have devastating consequences. Expectations that are too high can be overwhelming and unduly stressful. Low expectations send the message that parents lack confidence in their child. An awareness that parents are disputing one’s competence can also create guilt and self-esteem issues.
Madeline Levine, psychologist and author of The Price of Privilege and Teach Your Children Well advises, “Never do for a child what he can do for himself”. This includes navigating on one’s own through difficult emotional territory with support from parents. A parents’ job is to prepare a child to live successfully in the world. Experience is truly the best teacher, and parents are uniquely qualified to provide such opportunities for trying new physical, mental, and emotional challenges. Coddling, by definition, prevents experience and important failures from which one learns. Being supportive means presenting a child with choices and allowing him to gracefully fail and succeed at his own pace along the path he chooses.
For a person who lives with mental illness, though, the line of competency can shift day-to-day, sometimes hour-to-hour depending on the person’s current state of recovery. Sometimes, that line moves backwards.
Here are ways our Behind the Wall parents show support and avoid coddling:
Be honest. Being honest with a loved one about her mental illness and her current state of recovery is the crucial first step toward her recovery. Being well informed by credible sources about the diagnosis and seeking evidence based treatments are necessary for recovery. Ultimately, a person cannot reach recovery without moving toward it on his own volition, which may require professional motivational help. Managing an illness successfully requires knowing facts. Shielding facts in an effort to protect another from the stigma of mental illness only serves to obfuscate the path to recovery.
Give your child responsibilities. Everyone needs responsibilities. Having a goal each day fosters success over time, even if on some days the goal cannot be reached. As one Behind the Wall parent says, even though her son was not yet able to live on his own, he wasn’t broken; he could still clean his dishes. It just may take a little longer for him to remember to do it. As Dan says of expectations for his daughter who lives with schizophrenia, she is responsible for living the best way she can. All of us owe ourselves the self-respect to work every day toward learning better management of one’s own health; for a person living with mental illness it is certainly more challenging than most and often means taking medications and recognizing when treatments are not working. A person may do better one day than others, and may even fail, but everyone has the responsibility to try again. And loved ones must provide support everyday without judgment or criticism.
Teach strategies rather than provide solutions. Keep an ongoing dialogue. A person living with a brain disorder may not always be capable of rational or logical thinking. Sometimes, a person may believe that loved ones or even non-existent people are trying to inflict harm. There is no amount of rational talking that can convince a person who is experiencing psychosis otherwise.
But that doesn’t mean a parent or trusted loved one shouldn’t keep trying to show—by asking questions, for example—how to logically work through paranoid or disjointed reasoning. When her son is experiencing psychosis, Bianca points out behaviors and symptoms that indicate irrational thinking, and helps him to see he is not well. When doing well, she describes the behaviors that reflect failing mental health. She will tell him, “When you were in the shower for six hours, that was not healthy.” She will ask him, “When you’re not doing well, what are some things you can do?” A constant dialogue about recognizing symptoms of one’s worsening illness may be helpful to a person who is in the long and difficult process of learning to manage his own illness. Bianca encourages her son to take a daily inventory of symptoms and think about what has worked for him in the past and what he can do in the future. More than once, Bianca’s son checked himself into the hospital.
Provide an escape plan for potentially stressful situations instead of not trying at all. Along the lines of teaching strategies, avoiding any situations that may have potential for stress can limit an individual’s engagement with community and chances to develop new skills. But stressful situations without an escape strategy can have devastating consequences for a person living with mental illness. Sometimes, social events are unavoidable, or an individual desires to try a new experience. Discussing an escape plan in advance empowers an individual with agency to determine when a situation becomes overwhelming and to act upon it. Planning ahead develops problem-solving skills for managing the ever-changing limitations of one’s mental illness. Behind the Wall father, Dan, encouraged his daughter to pursue a demanding education while emphasizing the always-available option to drop a class should she begin to feel overwhelmed. Bianca, a Behind the Wall mother whose son lives with schizophrenia, prepared her son in advance of attending a wedding. If the crowd became too much for him, she explained, it was acceptable for him to go outside and take a walk or go home. Now, when they go out to dinner, he gets up and goes outside if he needs the escape and nobody is concerned, critical, or judgmental.
Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience.
Welcome failures as opportunities to learn and never be judgmental. Perhaps the most difficult guideline to follow when parenting any child, but especially one who lives with persistent mental illness, is allowing for failure. A person with brain disorders frequently faces situations in which “failing” may pose lethal risk. Failure to manage one’s illness can lead to a psychotic episode, possibly resulting in self-harm or victimization. Assertive Community Treatment (ACT), an evidence-based treatment, provides people with mental illness a safe environment to try new life skills. Failures are memorable lessons, and with support from a team, a failure can be a safe learning experience. One example of ACT service is “supported employment” in which a person’s employer and case manager work in cooperation to increase the employee’s success. The case manager facilitates understanding between employer and employee, assists in working through obstacles and potential job challenges such as communication problems, stressful hours, or short-term memory deficits common for individuals with brain disorders. ACT provides similar support for college students managing communications with instructors and stressful course loads, for example. By providing well-trained advocates to teach and reinforce practical life skills and strategies, ACT decreases day-to-day logistical load for families who are hesitant to allow an adult child to fail.
By the time Jonathan, whose mother admitted she had not allowed her son to fail, reached his early twenties, an age by which he could have begun to understand how to manage his illness, he continued to experience increasingly severe and unmanaged anxiety and depression. He was not progressing in life as he thought he should. He sought help from an uninformed practitioner who did not offer talk therapy but prescribed marijuana** for severe anxiety, which over time, compounded his issues. Though one of Jonathan’s parents is a physician, he refused to listen to advice from either of them. Fortunately, Jonathan finally recognized his anxiety and depression was debilitating and he had not acquired effective tools to manage his illness. He agreed to seek treatment from a doctor recommended by his parents and his life has been improving.
*Names and identities are changed to protect anonymity of the (usually adult) children of Behind the Wall parents
**Studies show that marijuana use is “…potentially dangerous for people with mental illness.”
From National Alliance on Mental Illness web site (www.nami.org):
The overwhelming consensus from mental health professionals is that marijuana is not helpful—and potentially dangerous—for people with mental illness. Using marijuana can directly worsen symptoms of anxiety, depression or schizophrenia through its actions on the brain. People who smoke marijuana are also less likely to actively participate in their treatment—missing more appointments and having more difficulty with medication-adherence—than people who abstain from using this drug.
The relationship between marijuana and psychotic illness, specifically schizophrenia, has been studied for many years and is receiving increasing publicity in the mainstream media. Certainly not all people who smoke marijuana will develop schizophrenia, but people who are at risk of developing this illness—including individuals with close family relatives that have severe mental illness—will be more likely to experience psychosis if they are using marijuana. In this population of individuals, people who regularly smoke marijuana are diagnosed with schizophrenia at a younger age, hospitalized more frequently for their illness and are less likely to experience complete recovery even with high quality treatment. This is particularly concerning, as approximately one-third of people in America with schizophrenia regularly abuse marijuana.
From the Royal College of Psychiatrists website (www.rc.ac.uk):
There is growing evidence that people with serious mental illness, including depression and psychosis, are more likely to use cannabis or have used it for long periods of time in the past. Regular use of the drug has appeared to double the risk of developing a psychotic episode or long-term schizophrenia. However, does cannabis cause depression and schizophrenia or do people with these disorders use it as a medication?
Over the past few years, research has strongly suggested that there is a clear link between early cannabis use and later mental health problems in those with a genetic vulnerability – and that there is a particular issue with the use of cannabis by adolescents.
Sometimes it seems to happen overnight. In other cases, parents know there is something different about one’s child from an early age. When it hits suddenly, a parent may see signs of mental illness creeping up only in hindsight.
No matter the evolution or specific diagnosis, the journey of parenting a child with mental illness is an unfathomable challenge, unimaginable to those who have not been the parent and witnessed scenarios that even in the retelling are difficult to believe. When a child becomes increasingly symptomatic, chaos erupts in the household and the lives of each family member are affected. Not just a little, but significantly. Managing this chaos while searching for solutions for the ill family member can feel overwhelming. Yet parents get through it. The Behind the Wall parents we interviewed describe the early stages of the illness in similar terms as the steep learning curve of boot camp training with an over abundance of emotional turmoil. But the learning curve sharpens parents into invaluable advocates in managing treatment for their child; they hold the whole health history from the smallest obscure observations to the concrete details of hospitalizations and medications.
Parents and families can be integral to the recovery process. Statistically, there is a higher rate of recovery for those who are well supported by a loved one and this is usually the parent. They work harder than anyone at keeping their child safe. They fight for a diagnosis and treatment and are usually best positioned to encourage compliance. Sometimes, they even enforce treatment because they know it’s best.
But then their child turns eighteen.
Says one Behind the Wall parent, “I wanted to help my son, but I was prevented from doing so.” What a difference a day makes. At eighteen, because of HIPAA (health privacy laws), parents are effectively excised from their child’s treatment team.
After a recent mass shooting (pick one) many commentaries in the media sphere asked, “Why didn’t the parents do more to prevent this?” I’ll concede discussions of gun laws to others. And while it’s unfair to conflate violence with serious mental illness because statistics don’t bear this connection, these incidents bring the stigmatized topic of mental illness bubbling to the surface. And as an advocate, one must seize the conversation to explain that there are a myriad of reasons why a parent doesn’t have all the power to help an adult child living with serious mental illness, and the important ones hinge on eighteen.
Even when symptoms of one’s illness are present throughout a child’s whole life, behaviors often become more severe during teens and early twenties. It can take months, even years to obtain a proper diagnosis and treatment particularly when substance use is involved. It is not uncommon for a person to try several medications before finding one, or a cocktail of as many as seven at a time, to become stable not to mention functional. What may work for a year may need to be reduced, increased, or changed later. In Andrew Solomon’s New Yorker article, “The Reckoning,” Peter Lanza, whose son was the Newtown shooter, describes how Adam was given medication that caused him serious side effects. It is inferred that the medication trial did not proceed. Adam refused treatment. Usually one must try several before getting it right, though convincing a person to try medications that make one feel lousy, at least at first, is easier said than done and truthfully, all medications have some side effect. A feature common to serious mental illness, anosognosia, is defined as the inability of a person to comprehend he or she is experiencing mental illness. And it’s another serious impediment to convincing one into treatment compliance. If a parent is fortunate to obtain a diagnosis and a treatment plan that has promise for their child, it offers hope that the individual will stabilize and recognize just how ill they were before treatment. But tick tock; the clock counts down to the magic hour of one’s eighteenth birthday.
. . .expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic.
Treatment cannot be enforced on a person who is over eighteen and unless one’s child signs a HIPAA release, the person(s) who hold the whole medical history, the parent, can effectively be excluded from healthcare decisions. Parents have told us they call their child’s therapist and say, “I know you cannot tell me anything, so I’ll feed you information.” It bears pointing out that expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic. Kerri, a Behind the Wall contributor, tried bringing clothes to the hospital that her son called to request. But because he forgot to sign HIPAA papers, and forgot to tell her where he was, she couldn’t bring his clothes or even visit him for days. Losing a healthcare advocate in a parent because of the over-eighteen law presents serious dangers considering that a parent knows through shared experience how a certain medication has triggered mania for their child, for example, or severe and lethal tachycardia.
Fortunately, these barriers that parents encounter have become a salient to mental healthcare discussions and better yet, to proposed legislation (see links below for information about Murphy’s Law.)
No person in this known world excuses violence perpetrated by a person who lives with mental illness or experiencing psychosis. Those who do live with and successfully manage their mental illness most certainly don’t accept this message. Instead of asking, “Why didn’t the parents do something to prevent this?” Perhaps the real question is, “How can we address this over-age-eighteen issue?”
Because the truth is, these parents need our support not our judgment.
Andrew Solomon, “The Reckoning” New Yorker: http://www.newyorker.com/reporting/2014/03/17/140317fa_fact_solomon?currentPage=all
Comments are always welcome:
Recommended links regarding proposed mental health legislation:
OP-ED: Overhaul of mental health care long overdue, by Rep. Tim Murphy, Philadelphia Inquirer (January 26, 2014)
Mental Healthcare in the U.S. Needs a Check-Up, Editorial Board of the Washington Post (April 16, 2014)
Better Care for the Mentally Ill is Crucial for Our Society, Dr. Cyril Wecht, M.D., J.D. for the Pittsburgh Post-Gazette (April 13, 2014)
Worthy of Support, editors of the Toledo Blade (April 9, 2014)
Worthy of Support: Murphy’s Mental Health Bill Faces the Critics, editors of the Pittsburgh Post-Gazette (April 6. 2014)
The Definition of Insanity, editors of the Wall Street Journal (March 31, 2014)
A Mental Health Overhaul, editors of the Wall Street Journal (December 26, 2013)
Sound Off: Mental Health Reform Needed to Aid Patients, Dottie Pacharis for The News-Press (Fort Myers, FL)
We need to take a proactive approach with mental illness, Guest Opinion by Liza Long (author of “I Am Adam Lanza’s Mother”) in the Idaho Statesman (January 13, 2014)
A Law to Fix Mental Health Care, Dr. Sally Satel for Bloomberg (December 22, 2013)
All in the Family: Mental Illness and Caregiving Across the Generations, Rachel Pruchno, Ph.D. for Psychology Today (January 15, 2014)
New Bill Decreases Mental Health Funding, Increases Mental Illness Funding, DJ Jaffe for Huffington Post (December 18, 2013)
Murphy’s bill a step toward mental health reform, Observer-Reporter (Washington, PA), (December 21, 2013)
San Fran should take up Laura’s Law again, Amy Yanello, San Francisco Chronicle (December 20, 2013)
Rep. Murphy’s Bill Would Shift Focus: Make Major Changes In Mental Health Care, Pete Earley, journalist and father of mentally ill son
I’m sitting in the baseball stands watching my son’s game when a young boy’s anxious voice calls, “Mom! Mom!”
Though a parent is acutely attuned to her own child’s distinct cry, our biology snaps us to attention when we here these words, even if the voice only marginally resembles one of our own, which is why all the women and most of the men swung their gaze toward the boy. It was the anxiousness in the boy’s voice that got to us, a tinge of worry and need that reaches right into your gut and shakes your brain stem.
I don’t remember what the trouble was, but a few of us began to stand, unconsciously moving toward the boy because we would have willingly helped him until his parent surfaced because it was not the kind of sound a child makes when whining for a soda or irritated by a little brother. In his cry there was vulnerability, a sense of loss and, “I’m scared.” There seems nothing more powerful than sounds of a genuinely frightened or pained child. Nothing.
Countless parenting books offer advice on everything from breastfeeding to curbing tantrums, but the one thing we don’t need to learn is how to know one’s child is hurting emotionally. We feel it ourselves, deep into the marrow of our beings, even if we don’t know how to help. Parents have an inexorable need not just to nurture and protect but also to make everything ok. To fix it. Ask any parent of a child who has suffered and they will tell you, “I wish it were me instead of him.”
When one’s child calls out for help, we become single-minded, our adrenaline surges readying for the battle to protect our young. We may even knock over a few parents in our path to get to our own. For me, when that frightened call comes, there is a wee sense of relief, or gratitude that my child had the wherewithal and trust to call upon me. Me! It’s selfish, and maybe misdirected pride to be chosen to protect my most precious thing in life.
Imagine how heartbreaking it is, then, and counter to our biology when a child won’t ask or take a parent’s help and instead puts himself in danger. Parenting an adult child with persistent mental illness is frequently excruciating for this very reason. The illness teases and manipulates every fiber of the parenting coda to protect and just fix it.
I’m thinking in particular of Kelly Thomas, a twenty-seven year-old schizophrenic man who was experiencing psychosis. His parents loved him, kept their home open to him, tried their best to keep him in treatment. But Kelly was sick and preferred to wander the streets, a common theme with people suffering with psychosis and schizophrenia.
Thomas was brutally beaten to death by Fullerton, California police officers for not cooperating. And “brutally beaten” doesn’t really describe what happened to Thomas, who was unrecognizable when the officers were done with him. The officers apparently lacked any compassion or understanding of serious mental illness, and had become impatient with Thomas’s inability—due to his easily detectable psychosis— to follow instructions to, “Put your hands behind your back.” The beating has been captured on video and it is clear Thomas is confused by the instructions given to him when he says, “Like this? Is this what you want?”
Also in this video, one too painful for me to watch to completion, are the clear cries for help when he calls out, “Dad! Dad!”
The calls to his father are crushingly heartbreaking. He is afraid, and anyone able to watch the video wants to rush to him, and save him. His feeble cries remind us that he is someone’s child. He calls out to a father he trusts to help him, who has earned this trust that Thomas can even recognize and remember while in a psychotic state. He calls to a father who is sadly out of range to come to his aid. There is nothing more devastating than knowing your child called out to you and you weren’t there.
And sadly, for those who have children living with serious mental illness, stories like Kelly Thomas’s are not uncommon.
Like us on Facebook: https://www.facebook.com/StoriesBehindTheWall
Follow Behind The Wall on Twitter @widdi123
Comments are always welcome
When Riley, who is diagnosed with schizoaffective disorder, goes off his meds it’s usually coincidental with a binge of heavy drinking. His mother, Maika, a parent / contributor to Behind The Wall tells us that during these phases he will disappear for weeks or months at a time. She wrings her hands, fear and heartache are constant companions; she wonders what will happen to him, what dangers he will confront during these distressing episodes.
Riley’s past is marked by a pattern of disappearances, psychosis, and homelessness, often resulting in forced hospitalizations or jail time for public drunkenness and fighting. Once, he was arrested after an incident occurring while psychotic and was jailed for nearly six months where he experienced untreated psychosis, mistreatment, and developed other physical health issues.
Riley is dually diagnosed, a combination of two brain disorders, one of which includes addictions. It’s a complex and confounding mix that for many predicts a life of institutions and early death.
Our dually diagnosed loved ones bounce from rehabilitation facilities to hospitals, from homeless shelters to sober living, from jail to group homes, and back to rehabs. Many drug and alcohol rehabilitation facilities claim qualifications to treat patients with dual diagnosis. What this may actually mean in reality is they have a nurse on staff dispensing medications prescribed by a staff psychiatrist. Some rehabilitation facilities employ a harsh, confrontational style designed to address the addictions. But confrontation is usually detrimental to people who live with mental illness because such interactions can cause stress, a well-known and primary trigger for launching a mental illness crisis.
But where hospitals and residential facilities treat the mental illness, the substance abuse issue is often ignored. In one of our earlier blog posts, Just Another Friday Night in Lockdown, (July 26, 2013) a mother describes her experience with Scott, her dually diagnosed son who had been checked into a well respected ER hospital that treats many mentally ill patients experiencing psychosis. Having advocated for Scott through the many years of his illness, this mother knew that doing everything she could to support his sobriety was an imperative to getting him well and keeping him well. When the attending physician ordered an addictive drug, a benzodiazepine, to calm his mania, this mother protested, explaining how a benzodiazepine could trigger her son’s addictive brain and undermine his hard fought year of sobriety. She knew the drug Haldol alone would be enough to settle Scott, who hadn’t slept well for weeks. And yet, the doctor on staff simply ignored this mother’s request.
… for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted.
For a person with dual diagnosis, illness management is challenging and treatments, when administered by medical professionals trained in one area of mental health but not both, which sadly, is often the case, becomes at odds. Because of these complexities, for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted. The person with a dual diagnosis often feels isolated from community, society, and feels failure for the inability to manage both facets of their illness. And like Maika, the parents live with constant worry, fear, and grief.
So, What Would Effective Treatment for Dual Diagnosis Look Like?
In over 20 years of research, Dr. Robert Drake of Dartmouth and his colleagues have devised evidence-based practices for this unique and treatment-complex population. Ideally, treatment is integrated community-based and delivered by well trained providers using positive motivation and counseling, peer group support, supported vocational and life skills training, and medication management. Families are also included in this equation and also receive valuable support and education.1
Recovery looks different for each person with a dual diagnosis and it can be a long jagged journey. Maika wants her son to stay on his medication. She wants him to live at home where he will be safe and well fed. He won’t stop drinking but she asks him to at least use ‘harm reduction’ – that is, cut back on his alcohol consumption and stay on a good sleep schedule. She is grateful for every sign of progress and hopes one day he will be able to return to college or a part time job.
In general, a person in recovery works with a treatment team and learns to manage symptoms. This includes good sleep hygiene, nutrition, exercise, and knowledge of one’s medications. The patient participates regularly in support groups and self help groups. Recovery may include independent or group living, or living with one’s family. He or she may be able to volunteer, work, or take college classes. She has sober friends and feels she belongs in her community.
Parent / contributors to Behind The Wall have learned that being supportive and understanding of their dually diagnosed child’s complex challenges offers their best chance for recovery. And, there is hope.
1 An abstract of Dr. Robert Drake’s important work can is posted on psychiatryonline.org: http://ps.psychiatryonline.org/article.aspx?articleID=85734
For further and more comprehensive reading on the subject of dual diagnoses treatments, we recommend starting with the following resources:
Drake, Robert E. and Kim T. Mueser. “Psychosocial Approaches to Dual Diagnosis.” Schizophrenia Bulletin, Vol. 26, No. 1, 2000.
Friman, PhD., A.B.PP, Patrick C. Dual Diagnosis: Adolescents With Co-Occurring Brain Disorders and Substance Abuse Disorders, Fact Sheet. National Alliance on Mental Illness (NAMI). http://www.nami.org/Content/ContentGroups/Illnesses/Dual_Diagnosis_Fact_Sheet.htm
Jackman, Tom. Dual Diagnosis: Substance Abuse and Mental Health. The Washington Post. Washington, DC, July 28, 2009. http://www.washingtonpost.com/wp-dyn/content/discussion/2009/07/28/DI2009072801297.html
Thesis, Evelyn. “Addicts Often Battle Mental Disorders.” Sun News, Cleveland, Ohio, September 14. 2012. http://www.cleveland.com/healthfit/index.ssf/2012/09/for_many_addicts_recovery_mean.html
Additional Sources for Dual Diagnosis Evidence-Based Practices:
Drake, Robert E., Kim T. Mueser, Mary F. Brunette, and Gregory J. McHugo.
“A Review of Treatments for People with Severe Mental Illnesses and Co-Occurring Substance Use Disorders.” Psychiatric Rehabilitation Journal, v27, n4, p360-374.
Drake, Robert E., Susan M. Essock, Andrew Shaner, Kate B. Carey, Kenneth Minkoff, Lenore Kola, David Lynde, Fred C. Osher, Robin E. Clark, and Lawrence Rickards. “Implementing Dual Diagnosis Services for Clients with Severe Mental Illness. Psychiatric Services, v52, April, p469-476. 2001.
Regier, D.A., M. E. Farmer, D.S. Rae, B.Z. Locke, S.J. Keith, L.L. Judd, and F. K. Goodwin. “Comorbidity of Mental Disorders with Alcohol and other Drug Abuse. Results from the Epidemiologic Catchment Area (ECA) Study.” Journal of the American Medical Association, v264, n19, p2511-2518. November,1990.
As always, your comments are welcome!
When we began our Behind The Wall project, our main purpose was to understand how parents of adult children living with serious mental illness cope and manage the day-to-day dramas and crisis that seem to come with mental illness.
A family member had just been diagnosed with serious mental illness and we were searching for resources to help us accept the diagnosis, address the roiling emotions, and care and advocate for our loved one. And, the bigger question, how can our family support the parents of the individual living with the illness?
As parents, we know that the most practical child-rearing advice has come from those who have experienced it before us—everything from potty-training, sleep strategies, to getting kids to eat vegetables. So we again turned to other parents. While researchers and psychiatrists provide invaluable insight and information about the brain and effective treatments, no one can truly understand day-to-day challenges better than a parent who lives with a mentally ill person.
I daresay, not even a person who has a serious mental illness can truly understand what it is like being the loved one, caregiver or advocate. The challenges are not greater or lesser, just different.
She says, “When I accepted his mental illness, his life got better.”
In the process of collecting stories for Behind The Wall, we always asked parents what advice they would give another parent whose child is newly diagnosed. Maika, whose son Riley lives with schizophrenia, regrets not accepting the illness earlier because the sooner a person begins an effective treatment, the better the outcome. She says, “When I accepted his mental illness, his life got better.” Acceptance is for many, the most difficult step. Not just for parents and loved ones, but for the ill person too. But when loved ones find acceptance, it becomes easier for an ill person to recognize it too. And then chances for effective treatment improve.
What can make acceptance come easier is knowing there is hope. That’s what contributors want other parents to know. Rebecca has one daughter who lives with depression and another diagnosed with schizophrenia. She advises that, “As hard as it is right then, it can get better. It’s very hard to remember that when you are in the middle of it and your child is telling you, ‘I hate you and I can’t be in the same room with you.’” That is not to say the journey isn’t difficult, just that it can get better.
We again came across a video made in Britain. For anyone who has been newly diagnosed with a serious mental illness, or has a loved one who has, this is a valuable resource. What these individuals say is what our contributors told us too.
For anyone who has been newly diagnosed with a serious mental illness, or has a loved one who has, this video is a valuable resource.
What these individuals say is what our contributors told us too.
Click Here to view this video.
We are always interested in hearing from our readers. What has helped you parent a child living with mental illness?
At the last annual National Alliance on Mental Illness (NAMI) conference a controversial speaker, Robert Whitaker, was invited to talk about psychiatric drug use in treating serious mental illness (SMI). Mr. Whitaker is not a doctor but has won journalistic awards primarily in the areas of medicine, science, and history. He receives a lot of traction when he advocates treating mental illness without medication and cites studies to back up his claims.
His NAMI lecture focused on dangers of current drug protocols and methodologies that are standard in psychiatric care. Among other disturbing ideas, he cited studies indicating brain shrinkage from long-term psychiatric drug use, and that patients who never start on drug therapies have a better long-term outcome than those on medications. Mr. Whitaker advocates “selective use” of psychiatric drugs, and a reevaluation of drug treatment efficacy for children, claiming a link between drugs used to treat ADHD and a higher rate of pediatric bipolar disorder.
In the audience that day was a twenty-two year old man diagnosed with schizophrenia. That same day, the young man quit his medications. Cold turkey. His mother wrote to journalist Pete Earley, a mental health advocate, author, and father of a son living with schizophrenia, who then posted her email on his blog (http://www.peteearley.com). “Angry Mom,” as she named herself, blames NAMI and Mr. Whitaker if anything happens to her son because she knows how sick her son is and that nothing good happens when he’s off his meds. There will be “blood on their hands,” she says.
Hearing Mr. Whitaker question drug therapy makes most of us who have a loved one living with a serious mental illness (SMI) cringe. I mean a full-body Cringe. Not because we love drug companies or are close-minded. In fact, much of what he says makes a certain amount of sense and could be helpful toward treating SMI patients in the future. But saying it out loud is lethally dangerous.
I’m guessing Mr. Whitaker doesn’t live with a person diagnosed with SMI. If he did, he’d know patients living with bipolar, schizophrenia, and schizoaffective disorder typically have concrete or rigid thinking, a symptom of which is the constant obsessing over an idea, and an inability to think abstractly or fluidly. So, when a twenty-two year old man with a schizophrenic brain heard “drugs have serious side-effects” and “patients do better without…” that is all he heard, not the more nuanced message that included, according to Mr. Whitaker’s response to “Angry Mother,” that, ”[Drugs] could be used to help some patients recover from an initial episode, and they could be continually prescribed to those patients who can’t seem to do well off them.”
“Angry Mom” knows a lot about her son’s condition and if she says he needs medication, I’d believe her. Nothing like a stranger coming in and introducing an idea that undoes all the work she’s put into getting him to stay on meds, and not just to be functional, but alive.
One parent /contributor to Behind The Wall: The True Story of Mental Illness as Told by Parents claims she will never again question her son’s doctors about his meds in his presence. By merely asking his doctor, “Can’t he get off some of these?” her son, not seeing that she was exploring the idea, went off all of them, cold turkey. Weeks later, he became psychotic, landed in jail, and often couldn’t recognize her. She blames herself for questioning the drug cocktail in front of him. Another contributor put it this way: the drugs are awful and why wouldn’t a person want any chance to go off of them?
No one can dispute that side effects of psychiatric drugs are horrible: excessive weight gain, tremors, loss of appetite. One contributor to Behind The Wall said her son went (temporarily) blind from one drug. Another put him at risk for a heart attack. Another drug doctors continually recommend could kill him. It often takes several weeks to get a drug cocktail correct, then that too can change. But there’s a trade off. Catherine’s son, Philip, was diagnosed with schizoaffective disorder. But Philip’s father didn’t support drug treatment and his psychosis persisted on less effective medication. Eventually, while alone, and not monitored to ensure he took his medications, Philip committed suicide at age nineteen. Drug therapy would have prevented these devastating outcomes.
Mr. Whitaker’s drug-reduction advocacy is not meant to harm. Any parent would insist on reducing the drug load for their child living with SMI if they could stay well without them. And we won’t discuss medicating pediatrics here, except to say, it’s never an easy decision.
But some of Mr. Whitaker’s claims ignore other studies that provide at least partial explanation, for example, as to why recovery rates for SMI are reportedly higher in some third world countries. Countering his suggestion that the cause for lower recovery rates is because of over prescribing, we can look Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly* cited in our post, “Society’s Way or Best Way,” regarding societal structure and community impact on MI.** Stress and isolation play a big part. Mr. Whitaker also cites a study showing mentally ill patients who are not on drug therapies do better in the long run. There are many SMI patients who, without medication put themselves in grave danger. If a patient isn’t so psychotic or manic that they can stay safe without medication, then yes, one can see they will be the ones who do better in the long run. That is NOT the kind of patient Mr. Whitaker means to be speaking about.
But that’s not what that twenty-two year old heard.
Mr. Whitaker’s focus is on shifting drug protocols, and uses science to back it up. But even he admits that the current health system (and our society) is not structured for long-term minimal drug therapies. In his response to Angry Mother, Mr. Whitaker seems to acknowledge risks in his advocacy when he says, “We, as a society, have not developed a system of care that provides support to someone who might want to taper from his medications, and help that person try to do so in a safe manner, even though we know that it can lead to a good outcome for many. And the absence of such support may put a person—such as this mother’s adult son—into a perilous place when they do, in fact, learn of such information.”
If our society could develop deeper compassion for people living with brain illnesses, reduce stress caused by our societal structure, and put our loved ones who live with SMI in a safe environment for a year or two— time for their brain to cool, maybe we could begin to have this ideal treatment methodology Mr. Whitaker proposes. Mr. Whitaker offers a hope for a tolerable treatment for SMI that we, a supposedly humane society should strive to realize. What Mr. Whitaker never offers, is an apology. Because he’s giving out an idea that many SMI patients simply cannot have. At least not now.
But that is not what that twenty-two year old heard.
Research and evolving brain studies do offer hope for non-drug and selective drug therapies for SMI. And a broad range of seemingly worthy studies identifies the multiplicity of factors contributing to SMI and to recovery— factors that are varied, complicated, and unique to each individual. No one’s mental illness is like the other, nor is their recovery. And for parents trying to keep their adult child living with SMI healthy and alive, they want to stay with what’s working.
Complicated, varied, and irrational. That’s what mental illness is. Maybe we cringe because it all sounds too good to be true. No drugs? Please don’t tease us, Mr. Whitaker. Don’t even tell us until hope really is here.
* Tanya Marie Luhrmann’s essay, Beyond the Brain, from last year’s The Wilson Quarterly: http://www.wilsonquarterly.com/article.cfm?aid=2196#.UOR7b8OB6j0
NAMI provides information and resources about treatment for mental illness: http://www.nami.org/template.cfm?section=About_Treatments_and_Supports
For further information about Robert Whitaker: http://www.robertwhitaker.org/robertwhitaker.org/Home.html
Huffington Post blog by Robert Whitaker that clarifies his perspective: http://www.huffingtonpost.com/robert-whitaker/anatomy-of-an-epidemic-co_b_555572.html
As always, we are interested in your thoughts.
Mental Illness and the Medical Industrial Complex: parent / advocates can be a doctor’s best resource and yet are often undervalued.Posted: August 3, 2013
Proper treatment—talk therapy and appropriate medication—can save the life of a person with mental illness. Often it is a parent/ advocate driving toward that ultimate goal, one met with a myriad of obstacles. Every parent interviewed for our Behind The Wall project had at least one, if not several, hideous experiences with the “medical industrial complex.” We use this term to illustrate the oftentimes bureaucratic, impractical, impersonal, demoralizing system for patients with mental illness and their families. Our last post, Just Another Friday Night in Lock-Down is the story of one parent’s emergency room experience with her son.
Most common problems parents cite were caused by a general “one-size-fits-all” approach and more specifically, doctors who did not value the medical histories and insight parent/advocates could provide, health insurance policies that limit care or end treatment prematurely, obscenely long wait times in emergency rooms, a dearth of available, quality in-patient treatment facilities, and medical professionals who are poorly trained or administered medications inappropriate for a particular individual. Perhaps the most galling of all are restrictions framed by HIPAA laws, which were designed to guard patient privacy but in reality, excludes caregivers from direct information interchange with medical professionals despite their unique and experienced knowledge of the patient.
An individual living with mental illness usually has a long history of trial and error therapies. Contributor/parents to the Behind The Wall story collection have learned to adhere to a few critical and practical methods in dealing with the medical industrial complex. First, they constantly remind their over-eighteen child to sign the HIPAA waiver when they are in treatment and ask for one if it is not offered in order to allow medical professionals to communicate with a designated adult. Unfortunately, a person experiencing psychosis doesn’t always have practical matters, such as paperwork, top of mind. Second, parents advise, keep medical records of all treatments well-organized and close at hand. Many parents joke about binders filled with medical paperwork lining their shelves, overwhelming their offices. Because of the complex nature of diagnosing mental illness, it is crucial that each medical professional involved understands past treatments and outcomes. While a patient in crisis may present common symptoms, the go-to treatment may be potentially dangerous to some individuals.
One such patient, Miguel, who was diagnosed with schizophrenia, has never been able to tolerate a typical therapeutic dosage of most go-to medications. Once he gained fifty pounds in a week. Another time he lost his vision at a nearly full dose. One medication put him at risk for cardiac arrest. Luckily his mother maintains excellent records and researches medication so that when a doctor prescribed Clozaril, a heavy-duty drug known to be potentially legal to a small percentage of individuals, she was able to convince the doctor to find an alternative even though his symptoms were severe. Since Miguel experiences side effects to some degree with every medication, she knew a hard-core drug would be especially risky for Miguel.
Kerri’s son, Thomas, was living in a group home that was not her first choice but was decided upon by her insurance. There was no psychiatrist on premises. Instead, a prescribing nurse met once a week with residents to assess drug treatments. While living in the group home, Thomas complained about depression. The nurse prescribed Prozac, a medication that in the past had made Thomas highly agitated. Kerri doggedly tracked down the nurse at her off-site office and informed her of the negative reactions her son experienced when prescribed any SSRI medications and luckily, together, they were able to find an alternative.
In these cases, a parent was closely monitoring their child’s treatment and a doctor listened. One can only imagine what happens when there is not an advocate overseeing treatment. Or, in Marie’s case (from last week’s post, Just Another Friday Night in Lock Down) when a doctor ignores a parent’s pleas not to administer a benzodiazepine to her addict son.
Dan and Rebecca also closely monitor their daughter, Stella, who was diagnosed with schizophrenia and lives a few hours away from where she attends university. Stella called her parents saying she wasn’t feeling quite right, to which her parents urged her to visit the university health center. Later, Dan and Rebecca received a call from the medical center stating that Stella would be checked into a hospital. “If you don’t do it,” the nurse said, “the university will.” Dan rushed to retrieve his daughter and drove her to an emergency room at a well-respected hospital close to their home. They were ushered into a room with, as Dan describes it, “soft furniture,” where they waited over ten hours and still did not see a psychiatrist. Dan realized that sitting in the dismal waiting room was more damaging and stressful than not seeing a psychiatrist. It was also a Friday, and she wouldn’t have received treatment over the weekend. He took Stella home to rest for a long weekend and she was able to return to school and resume her life.
Dan followed a third bit of advice that other parents cite, which is to “trust your gut” because, as Dan explains, you know your child best. He advises parents to “strike a balance” between listening to medical professionals and using one’s own observation skills. After all, the doctor is exposed to a data set limited to a short observation window and medical records. They don’t know the person. Says Dan, “You might be told, ‘I think we’ve nailed it with this combination of meds,’ and you’re looking at your kid and she’s not there, it’s not her. You have to say, ‘No, I don’t think what I’m seeing is working.’”
There are many pieces that need to align before a person with mental illness can reach recovery, and having a trusted advocate is an invaluable one. The stigma around mental illness certainly impedes treatment; more troubling is that based on the experiences of our contributors, stigma seems to be perpetuated by the medical industrial complex itself.
HIPAA laws are a formidable barrier as well. That a medical professional cannot provide information to the parent/advocate is an obstacle to constructing full-circle treatment where all parties vested in the health of the patient are well-informed. Esme always made a point to contact Jennifer’s therapist to tell her what was really going on at home because she suspected her daughter didn’t always tell the truth in therapy. She would call and say, “I’m just feeding you information…” hoping to increase the efficacy of her daughter’s treatment, but never really sure what was transpiring.
After Kerri’s son was placed in a psychiatric hospital, it took two days for her to learn where he was, and when she arrived to visit him, the receptionist would not tell her and her husband where he was. It’s against the law, after all, until he signed the paperwork. A young man who was experiencing psychosis forgot to ask for the paperwork. Imagine.