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.
*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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