Jean did not delay taking her thirty-year-old son, Keith, a Medicaid patient, to a prestigious teaching hospital’s emergency room when he began experiencing heart attack symptoms. Jean, a lawyer, is the legal guardian of Keith, who lives with schizoaffective disorder that was diagnosed at age twenty. Jean knew Keith was likely experiencing a panic attack and the symptoms she was most concerned about were those of a mental illness relapse. Advocates like Jean, who have watched their loved one’s illness unfold, are intimately familiar with subtle and sometimes frightening warning signs of mental health relapse and what signifies the urgent need for an ER visit and hospital admission. On that day, Keith’s concerning symptoms included elevated mood, obsessive need to clean, racing heartbeat, and the most critical of all, incoherent speech.
Up until that ER visit, Keith had been managing his illness successfully for nearly four years with medication, therapy, sobriety and the support of his parents and loved ones. A recent college graduate, Keith teaches advanced math to high school students at an after-school clinic. He was recently promoted and had plans to move from his parents’ house into an apartment with a roommate. Stress can trigger a critical health event for those who live with chronic mental illness and Jean believes his increased responsibilities possibly caused his relapse.
The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided, or the fact that Keith is treated at the same hospital for his schizoaffective disorder.
Upon meeting the ER doctor, Jean detailed her son’s mental health symptoms she observed and knew to be concerning and his correlating health history. But the ER doctor focused on Keith’s cardiac symptoms, asking an incoherent Keith to explain how his heart felt. The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided or the fact that Keith is treated at that same hospital for his schizoaffective disorder. “The ER doctor couldn’t write the discharge order fast enough,” Jean says. She laments the breakdown in what should be an integrated health system, one that includes protocols in which doctors are trained to address physical and mental health symptoms.
Jean recognized Keith’s mental health was rapidly deteriorating and his ER discharge meant the opportunity to get him committed for treatment in the hospital was denied. Jean then called Keith’s psychiatrist, who was on vacation, and left a message for the on-call doctor. Several hours passed before she received a return call. In the meantime, Jean also had left a message on the answering service at the clinic where her son is treated.
When her call was finally returned, the usual and important question was asked: “Is he suicidal? Is he homicidal?” Keith was not expressing suicidal ideation though he was incoherent and clearly exhibiting signs of psychosis. But Keith does have a history of hearing command voices—voices that instruct him to do dangerous, impulsive acts. Jean explained, “No, he’s not saying he’s going to kill himself. But his thinking is becoming more convoluted and his mood is more elevated.” Despite Keith’s history, he did not meet criteria for being at risk for self-harm or harming others and therefore Jean was informed, “Have him call us tomorrow and get an appointment at the clinic.”
Jean was finally able to make an appointment for Keith early the following morning and prepared for a long night of vigilance, which was especially worrisome since her husband was away on business. Knowing Keith’s history of psychotic thinking, especially that he experiences frightening command voices, scares Jean. She would need to check on him frequently throughout the night.
Jean recalls, “The rest is a blur. About 1:30 am, I saw blood in the hallway. I banged down the bathroom door and stopped the bleeding as best I could. I called 911 and got help from my neighbors who are nurses. Before I knew it, Keith was in the first of two surgeries.”
Keith will survive but it will be a long recovery process, both physically and mentally. He told his family he wants to live, get well, and return to work. He tells his parents he had no plan to kill himself. Keith has no memory of that night. “I don’t know why I did it,” he says.
Keith’s psychosis involved hearing voices commanding him to act, nearly resulting in his own death. His act, unlike a conventional suicide attempt in which the intent is a conscious and often planned effort to end one’s own life, was unplanned and impulsive. Keith’s brain was very ill, requiring urgent treatment to stabilize disordered thinking and keep him and others safe. Had Jean been successful in getting Keith hospitalized, he could have been protected from this impulsive act that will now require a longer recovery than had he been committed to treatment merely one day earlier.
Discouragingly, these types of experiences are not anomalies. Like most mental health advocates, best selling author, Pete Earley, became frustrated by the confusing and oft enervating mental health system when his son became ill. Earley’s very informative book, Crazy: A Father’s Search Through America’s Mental Health Madness, explores the healthcare and criminal justice system for those living with mental illness and for their advocates navigating the health and justice system. In Crazy, Earley tells a story of his frustrating effort to commit his son, Mike, whose mental health was deteriorating:
The doctor said: “Virginia law is very specific. Unless a patient is in imminent danger to himself or others, I cannot treat him unless he voluntarily agrees to be treated.” Before I could reply, he asked Mike: “Will you take medicines if I offer them to you?”
“No, I don’t believe in our poisons,” Mike said. “Can I leave now?”
“Yes,” the doctor answered without consulting me. Mike jumped off the patient’s table and hurried out the door. I started after him, but stopped and decided to try one last time to reason with the doctor.
“My son’s bipolar, he’s off his meds, he has a history of psychotic behavior. You’ve got to do something! He’s sick! Help him, please!”
He said: “Your son is an adult and while he is clearly acting odd, he has a right under the law to refuse treatment.”
“Then you take him home with you tonight!” I exclaimed.
Mental health professionals are required to follow the criteria established for hospital admission. This criteria and HIPAA privacy laws restrict providers, often resulting in sub-par care and tragic consequences for people who live with mental illness. Advocates, mental healthcare providers and patients are frustrated with these laws and protocols that quite simply are more often harmful than helpful.
No good comes from an untreated illness and after leaving the ER, Earley’s son was arrested and incarcerated for trespassing. Fortunately, Mike caused no physical harm to himself or others and the arrest prompted Earley’s investigation of the mental health and criminal justice system.
Virginia State Senator Creigh Deeds and his twenty-four-year-old son were not fortunate. Deeds’ emergency intake experience was similar to Jean’s and Earley’s but with horrifying consequences. His son’s observable symptoms indicated he was becoming gravely ill. Like Jean and Earley, Deeds was unsuccessful getting his son committed. Deeds was told there was no bed available for his son. Later, Deeds’ son stabbed his father, leaving a lasting facial scar, and then he killed himself. Says Deeds about his experience with the medical system,
That makes absolutely no sense…An emergency room cannot turn away a person in cardiac arrest because the ER is full, a police officer does not wait to arrest a murder suspect or a bank robber if no jail space is identified.
Deed’s experience prompted him to initiate changes in the emergency intake laws in his home state of Virginia. The changes include:
- Doubling the maximum duration of emergency custody orders to twelve hours and establish a framework to ensure private or state psychiatric beds are available for individuals who meet criteria for temporary detention.
- Requiring State hospitals to accept individuals under temporary detention orders when private beds cannot be found. The law enforcement agency that executes an emergency custody order will be required to notify the local community services board, which serves as the public intake agency for mental health emergencies.
- Establishing a state registry of acute psychiatric treatment beds available to provide real-time information for mental health workers.
Deeds acknowledges that changes to the intake law are “just the beginning” of the process the state must undergo to modernize and increase the effectiveness of the fragmented mental health system. His detractors believe more changes should have been implemented. But he accomplished what he’d identified while on his back in recovery from the physical injury his son inflicted. And these changes can be a model nationally. Deeds said, “The bill signed by Virginia Governor McAuliffe makes needed improvements to the emergency intake process. But there’s so much more to do.” As a father of a person with serious mental illness, Deeds is keenly aware of holes in the health care system. Says Deeds,
What happens after crisis intervention?…What if a person needs long-term care? What happens after the first 72 hours? Our system was deficient before, but a lot of deficiencies remain.
Many parents interviewed for our Behind the Wall story collection share the experience that there was little information about, and questionable access to, post emergency commitment treatments or alternative resources when a person in crisis is denied hospitalization.
Frustrating experiences like those of Jean, Earley and Deeds are shared by almost all parent/advocates of a loved one living with chronic mental illness. To effect change and remove dangerous roadblocks in the mental health system, Jean could, perhaps, pursue legal retribution against the medical professionals who failed her son despite having been provided Keith’s pertinent health history. But Jean notes that the hospital and mental health professionals followed an established protocol, even though that protocol was clearly flawed. Legally, they did nothing wrong. Instead, she will work for systemic change for Medicaid patients through NAMI (National Alliance on Mental Illness) to shape a more comprehensive diagnostic protocol, one that incorporates a case-by-case basis method of treatment for mental illness symptoms. She expects pushback but she is determined.
Changes that advocates like Jean, Deeds, and Earley are pushing are critical for the reparation of the broken system. It seems overwhelming. But there is hope. In June 2015, Representative Tim Murphy (R-PA) introduced H.R. 2646, the Helping Families in Mental Health Crisis Act of 2016, which was passed in July 2016 in the House. H.R. 2646 will now move to the Senate for approval. The changes proposed are substantive. The link to read the language of this bill and follow it as it moves through the Senate can be found here: https://www.congress.gov/bill/114th-congress/house-bill/2646
There is much work to be done in order to provide the best care for our loved ones who live and struggle with mental illness every day of their lives. If you are a caregiver or a person with mental illness we’d like to know your thoughts.
If you, or someone you know is thinking about suicide, please visit these sites and get help:
 All names have been changed to protect privacy.
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:
Our guest blogger tells us how challenging it is to live “in the moment”.
I hold my breath waiting. Panic stuck in my throat, wondering if this is beginning of another crisis my son is creating. Is he going to experiment and lower with his meds and become manic? Will it be like the time he became manic and paranoid?
That time, after alerting the police that the CIA was watching him, he threw out all his trophies, awards, photos, well-written essays, things representing highlights from his past, from before he became ill. Later, I was able to retrieve most things, buried deeply in the garbage and sludge-covered. He packed the essentials: a gallon of sterile water, one change of clothes, sketchbook, a few dollars and not much more. He set out to live on the streets so the CIA couldn’t study him. My two sisters and I drove down every street downtown, tracing the path to his familiar haunts, hunting him down as if he were a runaway puppy.
We found him, euphoric, ready to enter the homeless shelter. He admitted he hadn’t slept in a week and needed help.
The chaos he has created in the past stems from his decision to walk into a bar and drink a beer, and his distorted notion that he is a ‘normal guy’ who can drink a beer. One beer, and be fine. But for him, one beer leads to a weeklong, or months-long binge, blackouts, ruined relationships, lost job, failed college semester, and all this followed by shame and guilt, and the long haul of putting it all back together again.
So, I would hold my breath waiting, knowing what had been built could all fall apart. In one beer.
But while holding my breath, I forget the gratitude for the previous three years of calm and serenity his recovery has brought to our family. I forget gratitude for the hard work and day-to-day struggle that is his, just to live a meaningful life with solid relationships, work, and balance in his life. I forget how much work he does to earn a moment of joy, and happy family moments.
It’s not healthy to stop my life, become paralyzed in fear…
It’s not healthy to stop my life, become paralyzed in fear; I know this. And I’m not fun company. I’ve watched my husband sleep, eat well, go to the gym, work, and put his worry into neat compartments that only occasionally leak out. I will never know how he has been able to do this, but we are all different.
At the Al Anon meetings they tell me to let go and live my own life. Of course I know this is what one should do, but letting go and taking care of myself requires more discipline than holding my breath. Taking care of myself, over worrying for my child, is not natural for mothers.
But how long can a person hold their breath?
I came to realize that I cannot continue to live this way, starving myself of oxygen, denying myself my own life. I need to be strong for that moment he reaches out, asking for help. I needed to change, and it can only come from me.
I found a therapist who knows about addictions and mental illness. She helped me grieve the loss of my son, the easy son I once had; the son who won trophies, wrote essays, and had healthy relationships. To allay my fear and angst, I began to meditate, sometimes a walking meditation on the beach, or in the woods. Exercise and sports had always been a part of my life and it was time to incorporate these activities back into my life. I needed to live more consciously, beginning with eating well, not mindlessly consuming a pint of cookie dough ice cream in one sorrowful sitting.
The most difficult part for me was becoming social again. I had lost relationships during the chaotic times of my son’s illness. Let’s face it, people don’t understand, and I wasn’t fun to be with anyway. I made new friends who are also in the club of knowing mental illness and addiction. These friends could hear what I was saying without flinching or pitying. I don’t want pity.
What has helped give me perspective and insight is being well informed. I read and learned everything I could about the dually diagnosed, those with serious mental illness and substance use disorders. I found my local NAMI to be most helpful, especially the Family-to-Family class that my husband and I attended together. I found support and community there too. I also called upon my faith, that faith I had felt abandoned me during the hard times.
I feel connected to my son, and this is key. Feeling connected to our son gives us the best chance that he will turn to us when he is failing. It’s the best hope we can have. Feeling connected enables me, ironically, to let go a little more. Knowing that he is aware that we will always support his recovery and never judge his journey is the best insurance that he WILL turn to us on his own volition. Because ultimately, his recovery must come from him. I now recognize that holding my breath or living in fear will not give him tools to manage his illness.
How we stay connected is by expressing our deep appreciation of his strengths and struggles, and telling him frequently how much we respect his hard work. Believe me, I want to keep him in a bubble to protect him. But I don’t pity him or coddle. I support his efforts. I’ve learned the importance of letting go and allowing him to make his own choices and decisions, because I won’t be around forever to protect him. I enjoy his humor, his new quirkiness, and his artistic passions. There are many things I want for him but he may not want these things for himself. I’ve worked on learning to stay quiet, enjoy the moment, and find gratitude. I am grateful he’s alive and has integrated into his community, and is moving forward in his own way with his own volition.
Sometimes, I slip, and find I am holding my breath: after learning he’d “had a beer with friends,” or one recent night when he didn’t return home. The difference now is that I recognize when I am not living in this moment, but rather flashing back to the chaos of the past, and worrying about things that may or may not ever happen. My physical health is much better when I live mindfully, with balance, and joy. Every day offers the chance to find joy. I sound like a bumper sticker. A few years ago those sayings evoked anger rather than peace for me. I don’t want to be in this club of parents whose children struggle with a dual diagnosis. I want to be a parent of an adult child whose biggest problem is finding the right career, or breaking up with his girlfriend, or learning to budget his money.
But this is where I am in this moment.
Your comments are always welcome:
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.
*As promised in our very first post, the following story is provided by a guest blogger, edited by us. All names have been changed for privacy. Behind The Wall stands by the authenticity of this story.
Of the many parents we interviewed for our story collection, almost every parent interviewed had a similar story pertaining to ER care and treatment. This is one of many.
My son, Scott, who is in his mid-twenties, was experiencing his second acute, hypo-manic episode in seven months. He was terrified and highly agitated, believing he was going to die from lithium poisoning and insisted on having his blood tested. Right now. About a month before this night he had somehow been convinced by strangers, in person and on the internet, who he referred to as “cult members trying to kill people,” that drinking one’s urine and a gallon of distilled water each day was good for one’s health. While he decided on his own to lower some medications thinking his urine would boost his mental and physical health, he became convinced he had been lethally poisoned by the lithium re-circulating through in his body. He claimed the lithium overdose was causing headaches, and lightheadedness, though my husband and I had noticed he was forgetting to eat for long stretches and we were more alarmed by his news about drinking urine than the idea of lithium toxicity, but relieved he now admitted it had been a bad idea.
Scott and I arrived at a well-respected university hospital and were told to sit in the ER lock-down where emergency psychiatric patients are held. It amounts to two grubby, prison-like bedrooms and a small common area, which is a rather generous description. I was told to leave my purse and cell phone outside the room, which meant I couldn’t contact my husband, who was out of town, or family members taking care of our pets to let them know what was happening to us. Scott had been escorted from our driveway in an ambulance, a scene that lends itself to justified concern. Like prisoners, we were locked in the room. To use the restroom, we had to ask permission and someone unlocked the door to let us out. With nothing to read or watch, I couldn’t ignore the shabbiness of the place, the uncomfortable fiberglass chairs and the kicked-in scuffed walls; I kept wishing for a can of paint to have at least something constructive to do with the empty time before me.
I expected we’d have a wait before someone would appear and help my son. In the ER triage, though he believed he was going to die, I understood he was not a top priority.
An hour and thirty minutes passed with nary a nurse or doctor in sight. During this time Scott was quiet and we exchanged a few words. But as more time passed, he became agitated again and ranted that he was going to die from lithium toxicity. He was sure of it and also that no one would help him. I assured him he was not going to die and motioned through the glass window to the nurses and doctors. His agitation increased, he writhed, paced, and yelled, “I’m going to die.” His 6’2” body would not stay still because stillness, he said, would cause him to die. His eyes were wild and he was frightened. And there was nothing I could do for him.
A non- psychiatric resident finally appeared and asked me if my son had anxiety. Did he really ask me that? Could he see what was happening? He asked if Scott had ever been manic before and if he takes Ativan, an addictive benzodiazepine, used to treat anxiety.
“He’s an addict-alcoholic,” I said. “He can’t take anything in that category. Nothing. He cannot take that shit! He’s been sober for a year and we don’t need to stir up his brain now.”
I was very clear in reminding, or more likely teaching that intern that any benzodiazepine would be devastating to Scott, who is dually diagnosed with bipolar disorder and addictions. Benzodiazepines light up the addictive part of his brain, essentially accentuating the thirst an addict fights daily. A thirst that eventually quiets somewhat over time though never goes away, but comes back with a roaring vengeance with even a drop, like blood to a shark. That was the last thing he needed, especially coming so close— less than a week to be precise—to maintaining sobriety for a full year, a remarkable accomplishment for any addict.
The resident said Scott’s lithium levels would be checked, though did not offer a time frame, then offered a perfunctory nod and left. Scott resumed his crying, yelling, and pacing because he was ‘going to die.’ A nurse arrived to take his blood while I somehow held him still— all 165 pounds of him. When would we get the lab results? No one seemed to know.
I wondered how many hours I have spent in ERs and hospitals, not for my son’s mental illness, but for my own injuries or for either of my two sons. In fact, Scott’s brother was rushed to the ER on numerous occasions, more than I can count, from infancy through adulthood for a rare condition that requires emergency intervention whenever he contracts an illness in which he loses fluids (a flu, for example). There were three different broken bone incidences, torn ligaments and stitches. How kindly the nurses were, making sure my sons were not afraid, outlining procedures in advance, looking us in the eyes as they told us what would come next. Doctors took time to listen to the important parameters for treating my son whose rare condition requires added precautions. These past experiences were in stark contrast to how we were treated on this night, now a mentally ill patient and his exhausted mother.
By hour three, my son continued to occasionally rant and pace. I was trying to keep him still and tried logic… But logic with a hypo manic person, well, that’s another story…
An older woman, who announced herself as the attending physician, cracked the door of the lock-down. Her voice was angry and sharp. She said, “We’re going to give him Ativan and Haldol.” I repeated myself and told her Scott is an addict-alcoholic and can’t take the Ativan. She barked, “This has nothing to do with addictions! I’m the doctor. If he doesn’t get Ativan he will hurt himself.”
Before I knew it, four residents, a policeman, and a nurse were in the room to watch the crazy man pace and scream. One resident laughed. I felt humiliated and sad for my son, a young man who had once been an academic and athletic superstar, who had received a merit scholarship to college, and was now being laughed at by an uncompassionate intern who clearly knew nothing about mental illness.
Before I could refuse the Ativan, or even say anything to them, a resident gave him a shot of Haldol and Ativan. They were gone as soon as they left. My son was soon asleep. I was angry and deflated. Tears stung my eyes.
Four more hours elapsed during which no one spoke to or checked on us. During that time, a young couple, an exhausted woman and deeply depressed man, entered the small common area and sat in the stained chairs, never looking our way.
A nurse came into the lock-down with absolutely no explanation, to whisk us away to the “Behavior Health” area. Scott was drowsy and clearly incapable of fight or escape, and yet there was a police escort. The Behavior Health area was also locked down and my purse was taken away. My son and I went into a dark room and were told to keep the lights out. The air conditioner on this hot July was cranked to what felt like 60 degrees. As my son slept, I wiped crumbs off the chair, wrapped myself in a thin blanket and tried to get comfortable in the fiberglass chair.
We had checked in at 8:30pm and it was now 2:00am. I never thought we would wait so long to get some attention. I tried to rest, but all night I’d been in a state of anticipation, thinking that surely we would see a doctor soon and be able to check out. I had been told he would be seen “tonight” but tonight had passed. At 3:30am a resident came into the room just to apologize for keeping us waiting, telling me there were four people ahead of me and two were adolescents. “By law I have to see minors first.” And then he left.
I felt powerless and helpless. A nurse came by and asked me to close the door. “I can’t sit in total darkness,” I said, trying not to cry. The nurse suggested I wait in the main ER waiting area. I refused because I had seen too much coughing and blood there that night. More importantly I needed to be available to Scott, to advocate for him, though already that night I saw that the staff undervalued my experience and knowledge about his treatment history. I ignored the nurse and propped the door open to allow light in from the hallway. Surely, I kept telling myself, a doctor would soon be there and I didn’t want to be asleep when he evaluated my son.
Over the course of the next three hours, Scott awoke and told me his hypomania had dissipated and that he felt good and was ready to check out. I knew he was good to go home, he was calm and sounded like himself, even if groggy from the Haldol-induced sleep that allowed him to get the rest he desperately needed. The Haldol alone would have stopped the acute hypomania. I was relieved to see him calm, but underneath, I was furious the doctor had ordered an Ativan shot—potentially causing more damage for an addictive brain than had we never come to the ER.
Finally, at 6:00am, well over nine hours after we checked in, yet another resident appeared. But the resident was unable to conduct an evaluation because Scott could not be roused from his deep sleep. The resident went by my report though I’d had no sleep and hardly any food the day before, never a good combination for me even under the best of conditions. I had trouble remembering names of medications and what exactly brought us into the ER. I slurred words. All I could think of was that I was exhausted, cold, and I wanted out of that jail. Please, please let me out.
Scott was cleared to check out and we were told it would be another two hours before the paperwork was done. This is when I finally and successfully asserted myself. I demanded the paperwork be completed within the next hour. The resident listened and we were out within forty-five minutes. We walked out and into a sunny Saturday.
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