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.
Motherhood is beautiful. And messy, challenging, sometimes exhausting, and wickedly unpredictable. The moment a child first gazes into his mother’s eyes, or writes her first grade poem about all the reasons she loves her mother, diminishes most of the heartbreaking events—like the first snub a child experiences by a friend, or a child’s serious illness. Motherhood can be a roller coaster of emotions.
Sadly, some mothers don’t get many of the kind of moments that balance heartache.
This is why I take umbrage at the “Lean In” concept perpetuated by Sheryl Sandberg. Designing one’s own life is possible only to a degree; many of us recognize that motherhood and life throws curve balls. The suggestion that women can be mothers and “have it all” is simply preposterous unless we re-frame the definition of “having it all”. Something has to give way to have it all.
The concept of reframing “having it all”, and how to work toward it was introduced to me by some of the most amazing mothers I know—those women we interviewed for our story collection, Behind the Wall: The True Story of Mental Illness as Told by Parents.
This is not a rant against working mothers. We need women in the workforce and leadership positions. Personally, I prefer a female doctor. Ms. Sandberg is remarkable for what she has achieved while also raising a family. She has raised the bar for what women can achieve in the high tech world, one in which women have not felt welcomed. But her “Lean In” movement feels disingenuous.
When we plan to have a family, we envision our little family taking walks in nature (without whining about taking the walk), teaching our child to ride a bike, and celebrating graduations, proms, and weddings. As my sister, Elin, says, “That first time you gaze into your child’s eyes, you don’t think, ‘Someday this child will grow up and develop mental illness or substance use issues.’” But for parents whose children are atypical, these simple dreams aren’t always guaranteed. Parents whose children have special needs or serious mental illness, for example, often must make career and lifestyle choices to meet their child’s needs. Bianca, a mother we interviewed for Behind the Wall, had to choose a nursing position that provided a schedule that allowed her to be available for her son who lives with schizophrenia and sometimes cannot be left alone. Bianca’s other adult son sometimes works from home to be with his brother.
Dan considers himself fortunate to have been able to work at home while his daughter, who lives with schizophrenia, was recovering from a mental health crisis. Tessa, a mental health advocate and mother of an adult son with serious mental illness, is challenged to find a window of time to take a vacation because she never knows when a crisis may erupt. And I’m not even talking about the financial impact on parents of an adult child living with mental illness. Or the stress on a marriage.
But yet, these mothers we interviewed do have it all. All of them talk about gratitude for what they do have, how the experience of raising a child with a chronic illness has made them more empathic and compassionate. They are generous, spreading the message of their experience in an effort to help others. They also understand the concept of letting go of control and accepting what cannot be changed and fighting fiercely for what they can change. These mothers are caregivers and gladiators. They understand more about life than most and can hold a range of emotions with utter grace. Their gratitude is genuine, and deeply felt. And whether the rest of society recognizes it or not, by taking care of their own, they contribute in immeasurable ways to our society.
How about we lean in and embrace the hard work they do every day that often goes unrecognized.
This post is dedicated to those mothers. Happy Mother’s Day.
We always welcome your comments:
Our Behind the Wall blog and book explores the emotional journey of parents who advocate for their now adult children diagnosed with serious mental illness. The primary criteria we set for this project from the beginning was that the finished work remains worthy of the parents who contributed, contain useful information, effectively convey that parents are not alone in their journey and offer hope that recovery is achievable. Our intent is to provide truth and solace.
Our interviews with parents yielded valuable information and hope. Parents needed to tell stories and we were grateful and honored to be there to listen. Throughout the interviews, consistent themes bubbled up in the stories including chaos, feelings of isolation and grief, coping, hope and recovery.
As we travel around the country for book signings and other speaking engagements, we continue to meet inspiring parents and hear stories. We consistently hear that we are not alone. There are many who live in recovery or have a loved one who does.
Because we feel a responsibility to speak on behalf of parents who share stories with us, below are a few things we’ve learned on the road we’d like to share.
What we learned on the road by talking about mental illness:
We are not alone. We cannot say this enough.
Families are yearning for a voice that recognizes and understands the grief, chaos, confusion and frustration associated with living with a person who has untreated mental illness and is trying to navigate the mental healthcare system.
Hearing stories from others and telling one’s own story has shown to be informative and healing. We all need to be heard. We all need to know there is hope for the difficulties we are experiencing. Knowing what has helped others shines light into the darkness and unknowing of a mental illness diagnosis.
It often seems as if there is constant talk about mental illness in the media and the assumption is that there are resources. Yet at speaking engagements, we are reminded that when a parent or loved one begins the journey of advocating for another, feelings of isolation and grief are new, raw and overwhelming; it’s difficult to see past the roiling emotions to find resources and most importantly, hope. And that’s why we tackled this project in the first place—to address the emotional journey of parents. To help others see the long view.
In order to make a difference for families, we continue to talk about mental illness using factual, clear, non-judgmental language.
After a hospital stay, mental health professionals don’t always provide critical follow-up protocols or advice.
Recently, a parent told us that upon her son’s release from a two-week hospital stay following a mental health crisis, there was no discussion from the mental health professionals (doctors, nurses, hospital administrators) about support or follow-up. “Not one social worker or nurse recommended NAMI (National Alliance on Mental Illness) as a resource or outpatient treatment, nor referred us to a doctor to renew my son’s prescription,” she said. “We had no idea what to do. There was especially no discussion on what we, as parents, should do or even what we could read to learn more…We had no idea how to help him reintegrate into the community and go back to school.”
This may not be the case in every hospital but it certainly was the case for this family and many others. We were disappointed to learn this but were not surprised. We are aware of countless stories (some our own) in which a healthcare provider did not fully understand the larger picture of managing mental illness, nor was the important historical perspective of the parent respected or considered in the treatment, which usually resulted in problematic or even tragic outcomes. Further, after a patient’s first mental health crisis, medical professionals often fail to convey that mental illness requires long-term management.
As family members and healthcare advocates, we can continue to talk about the reality of serious mental illness and that there is support. We can also work with—and on the behalf of—our own NAMI chapters to get information about resources into the hands of mental healthcare providers, especially after a psychiatric hospitalization.
Families and those diagnosed need to hear from health care providers that there is HOPE and RECOVERY.
We have learned that mental healthcare providers don’t always understand that the parent or the loved one who serves as advocate is crucial to one’s recovery. The parent or person serving as advocate needs to be included in treatment. Period.
Studies show that a person recovering from any health trauma has a much better rate of recovery when well supported by loved ones and community. Who knows a person’s health history better than a parent who watched the illness unfold?
While Elin was speaking at a university hospital to mental healthcare providers in October, a young man who lives with schizophrenia told the group that one psychiatrist told him he would find recovery and that there is hope. The young man said, “That is what gave me hope and today I am in recovery.”
Early diagnosis is beneficial… if it’s possible.
Research shows that early intervention makes a significant difference in treating mental health issues, yet finding treatment for a person under eighteen is thwarted by a lack of available pediatric psychiatrists, a pervasive myth that individuals under eighteen cannot be diagnosed and by HIPAA laws that restrict the communication flow between parent (advocate) and medical professional. Almost every parent laments, “If only my adolescent had been diagnosed earlier…” And, “I knew my son/daughter’s behaviors were more than ‘adolescent angst but no one listened.’”
As John G. Looney, MD, MBA, Professor Emeritus of Psychiatry and Behavioral Sciences and Professor of Pediatrics at Duke University advises, therapists can treat the symptoms that are seen. There is no need for a label as long as the symptoms are being addressed. It is critical for parents, healthcare providers, and the adolescent to work as a team to address presenting symptoms.
Parents and loved ones are hurting.
Unless one has lived a similar experience, the chaos and grief are unimaginable. At book signings, we often meet parents who are deeply emotional, feeling raw from the experience. Fortunately, everyone in the room understands. And that’s what we learned: there are deeply compassionate people in the world ready to hold others upright and walk with them through difficult times. Which leads to…
We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
The best way for parents to get support is to reach out, ask for help.
It’s hard to ask for help, but when dealing with a family member’s health crisis—let’s say it’s cancer— it’s perfectly acceptable to request help. Even commonplace to create a whole website about a person’s struggle.
Recently, my friend’s child was hospitalized for a series of procedures and surgery. They set up a CaringBridge.org web page so that friends and family could provide support—meals, errands, caring for the sibling— and could follow medical progress through the daily blog written by the child’s mother. Friends and family were thus able to provide support without feeling we were being intrusive.
Why wouldn’t we do this for a family supporting a person in a mental health crisis? Families whose loved one is hospitalized for a mental health crisis need support too. Most friends want to help but may not know how. Maybe they don’t understand mental illness. Chalk it up to stigma.
Because of stigma, mental illness is awkward. We can teach others how to support us by asking for what we need; by asking for help the way a parent of any sick kid does it. Yes, I’ll take the casserole and errand running, please.
Resources are available in most communities; accessing resources can seem elusive.
Families need to learn about evidence-based treatments and where to find them in their community. We are always surprised to learn how challenging it can be to obtain services for the ill person and support for the caregiver. NAMI is a great place to start in most communities, though there are many others.
Anosognosia, or the inability to recognize one’s own mental illness, is the most vexing challenge.
Anosognosia affects about 40 percent of people who live with serious mental illness. At almost every event, we get a question about how to encourage a loved one experiencing anosognosia into treatment. Anosognosia is the root of many challenges in advocating and treating a person with serious mental illness, especially those who are over eighteen. A person cannot move forward in his treatment without acknowledging the diagnosis. We always recommend Xavier Amador’s book, I AM NOT SICK! I Do Not Need Help!* Amador developed the LEAP system of dialogue to gently guide an ill person toward insight and ultimately toward recovery on his own volition.
An important note: a person is more likely to address his illness when his loved ones and others close to him are in agreement about the illness, diagnosis and treatment.
“Letting go” and self-care are difficult concepts for parents.
It goes against a parent’s instincts to think of oneself But taking care of oneself provides the sustenance to care for others. All the parents we interviewed and we meet stress the importance of taking care of oneself.
Let’s keep getting the word out about coping strategies, hope and recovery. Please introduce yourself if you attend one of our events. To find out where we will be speaking next, keep checking our event schedule at: www.behindthewallstories.com/home/gallery/
As always, we welcome your comments:
Within a few weeks of starting middle school, a sixth-grader in my son’s class died by suicide. The principal, who was also new to that middle school, acted swiftly and appropriately to the crisis. His communications to the school community contained information about how to talk to one’s child about the event and how grief can manifest. His message was clear: It’s confusing to process this tragic event and important to allow time to talk it through. In addition, resources were provided to students who needed them while at school, and to parents during an evening information session. Thankfully, ours is a supportive community.
Naturally, the school community was shocked. Death by suicide in the US is statistically more common in teens (ages 15-24), ranking as the second most common cause of death. The perception seems to be that suicide is low for adolescents (ages 10-14), but sadly, according to the CDC, it ranks as the third most common cause of death. These statistics are horrific.
The student from our community was also so young; begging the question, “How could a person who has lived barely twelve years have already given up?” Parents wanted to know more about the circumstances of this student’s life and mental health history, though this was thankfully kept mostly private. Maybe knowing some specifics could explain something we all had difficulty understanding and could prevent it from happening again. Secretly, we searched for a factor leading up to this tragedy that is not shared by our child or existing in our family life to assure us this tragic event was an anomaly. One can become selfish when it comes to our own. We look for the “Oh, I get it” moment that allows us to say, “See? There’s the reason.” But there really is no acceptable explanation. It’s simply heartbreaking.
What may cause a person to attempt suicide, particularly those within the 10 – 14 age group, is the impulsiveness that comes with an emerging or untreated brain disorder. Stress is a significant factor in triggering brain disorders that disrupt brain connectivity. Those living with brain disorders often have a lower stress threshold. But of course, we will never know the specifics of this student, nor should we unless the family wanted it so. I’m grateful that (from what I could tell) the family’s privacy was respected, without stifling important discussion.
Because of this event’s emotional repercussions and the concern over the copycat phenomenon common with teen suicide, education about depression and suicidal ideation that is commonly woven into high school curriculum was made age-appropriate and brought into this middle school. Students were taught how to recognize when a friend may need support or intervention and where to get it. Students were taught that if someone expresses he wants to “give up” or says something like, “what’s the point,” a responsible friend should seek advice from a trusting adult. Getting support for your friend, students were told, is not betrayal. These are important messages.
My son shared a class with the student who died, though they were not friends. Still, my son was affected by the event. In the days and weeks that followed, I remained open to difficult discussions about death and suicide and repeated the message to my children about the importance of identifying when a friend may require intervention and how to convey to a person who seems to be in distress that they matter and that resources exist.
But at some point, my son had heard about copycat suicides and worried that one of his friends might attempt suicide. He asked, “What if I cannot stop my friend from doing the same thing? What if he doesn’t listen to me?”
Oh my. In the interest of creating a safe and supportive community, had we burdened these young kids – barely out of elementary school – into thinking it was their responsibility to protect others? Were we setting ourselves and our children up to feel responsible for a person’s death by suicide?
The anguish in my son’s voice over feelings of helplessness and the recognition of his ultimate inability to protect his friends suggested I had placed undue burden. His sorrow was crushing. And familiar. All parents know this wrenching feeling of not being able to control all the levers and conditions of our child’s life. He was feeling that, though for his friends and loved ones.
It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
There is no question in my mind that thoughtfully engaging with a person who seems to be in emotional distress and encouraging him to seek help is more beneficial than ignoring odd behaviors and hoping for the best. Acknowledging a person who may be slipping into darkness can make all the difference for them in getting help or not; a person may not even know how unwell he has become or that there are resources to help him. It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.
But when a person seems unable to get well, or more tragically, dies by suicide, it doesn’t mean that someone is to blame. This seems obvious, but the parent, loved one or friend of a person who dies by suicide always wonders if they could have done something differently. It’s even a fleeting thought for parents or loved ones who know on a rational level that they have provided all the support and resources within their grasp. It’s always there; the thought, I could have saved him.
There were many gems of advice provided by the parents my sister, Elin Widdifield, and I interviewed for our Behind the Wall project. These parents have adult children who live with serious mental illness and all of them have genuine fears about their child being at risk for self-harm or behaviors that make them vulnerable. Because death by suicide is common for those who live with serious mental illness, these parents are confronted by its reality. A parent once told us, that if you’ve done the best you can for your child, “You can’t blame yourself for their death or their success. There is only so much control you have.”
In fact, that was one of the most common and best bits of advice. There is only so much control you have. Accepting this fact is healing. A loved one can provide ample support and resources but a person must take the mantle to get better. Or not.
Still, witnessing risky behaviors of a child who has an untreated mental illness is worse than having your heart ripped out through your throat. Many parents share the sentiment that they’d rather feel the pain themselves than watch their child suffer. I can tell my child how to ask for help, and-remember-I-told-you-don’t-do-drugs, but out of my sight, I have no control. A person who has delusional thinking isn’t going to make good choices no matter how much he promised when mentally well, or sober or both. It doesn’t mean we are bad parents, loved ones, or friends.
I told my son that being a good friend or loved one means never giving up. But this does not mean a person has to endure abuse from others (another topic) or take responsibility for another’s actions. I will never give up on the people I love. I learned from my sisters and mentors, there is a solution to every problem and that’s what I tell my own children. And when he encounters the sadness that life brings, he will carry it, and his parents will stand beside him every step of the way.
But what I cannot do is solve his problems. I cannot make bad things go away. It’s simply not possible. Not realistic.
There but for the grace of god go I.
Suicide deaths ARE preventable. Here are online resources for suicide prevention:
 For more information about statistics regarding death by violence and death by suicide, please refer to the website for the Centers for Disease Control (CDC): http://www.cdc.gov/violenceprevention/suicide/statistics
 According to United States Department of Health and Human Services, “… people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.” For important information about Mental Health Myths and Facts, see http://www.mentalhealth.gov/basics/myths-facts.
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
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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.
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Sometimes the stories are difficult to hear. Maybe the stories are too close to home; maybe the stories present a reality we’d prefer didn’t exist.
And it’s so unpleasant—talking about chaos in the home and grief parents experience watching their child change as the illness manifests. The ugly scenes! The awkward moments! And worse, some die as a result of behaviors or disordered thinking brought on by the illness.
Maybe if we don’t talk about it, it will go away.
May is Mental Health Awareness Month and those of us who live with a brain disorder, or have a loved one who does, will be talking about it. We make some people uncomfortable. But we need to talk about it to give hope to others. Yes, that’s right, hope.
Since publication of our book Behind the Wall: The True Story of Mental Illness as Told by Parents, a collection of true stories, my co-author sister, Elin Widdifield, has been approached by friends and acquaintances who say, “I had no idea you were going through so much. I’m sorry.” Elin appreciates this concern and knows it comes from a genuine place, but we didn’t interview other parents to garner pity for them. None of the parents, Elin included, want pity.
In the words of Esme, one of our contributors, the reason for telling one’s story is to simply help another parent. “If I can just help one person, it will be worth it.”
Telling one’s story, and listening to others, is wisely encouraged by the National Alliance on Mental Illness (NAMI). The act of telling and listening is informative and healing.
There is chaos, danger, and even death in the stories told by our Behind the Wall Parents who have witnessed their child’s illness unfold. That is reality. Sometimes a loved one doesn’t reach recovery. Sometimes they do. But why does anyone really need to embrace this brutal reality? Why shouldn’t we just go about our merry way, talking about celebrity mishaps and what Emeril is making for dinner?
Because one in four adults have been diagnosed at one time in their lives with a mental illness. One in seventeen lives with serious mental illness such as bipolar disorder, severe depression, severe anxiety, schizoaffective disorder or schizophrenia. And their loved ones are impacted also.
A person living with untreated mental illness creates tremendous chaos in the home and in the lives of his or her loved ones. When a person is out of control—has frequent rages, runs away, uses drugs, or all of these things—it can drive families into isolation. Parents in this situation feel that no one else can possibly understand what they are going through. Adding to feelings of isolation is that parents are often harshly judged for the “bad behavior” of their child. Stories illustrate that a child’s extreme behaviors may possibly be a sign that treatment is needed. Sharing how parents overcame the isolation and chaos helps others to not feel so alone. When a parent has no idea how to help her child and begins to lose hope, stories about celebrities don’t help. Stories about others who share their experience offer hope.
Talking openly and honestly deflates mental illness stigma that is usually the barrier for many who desperately need treatment. Stories show it can get better with evidence based treatment. Describing outcomes without effective treatment (self-inflicted harm or even death) or with effective treatment (a fulfilling life), illustrates that seeking professional help is not a weakness but an act of resolve, strength and requires hard work and a willingness to change.
But there are actions a parent or loved one can take to more successfully cope and to increase chances for recovery for a loved one: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible.
Talking about mental illness informs others that there isn’t really anything specific that causes it. But there are actions a parent can take to more successfully cope and increase chances for recovery for their child: join NAMI for family support, nurture one’s own health and spiritual needs, find evidence based treatment as soon as possible. Talking honestly about recovery, a parent/advocate can learn there will be setbacks and it isn’t anyone’s “fault” nor is it the end of a chance for recovery.
But why do others need to know so much about mental illness? Because if it doesn’t run in your family, why should you care?
Brain disorders runs in families but impacts society. Encouraging early intervention, which increases chances for recovery, and community based programs with evidence based treatments, make more economic sense then waiting for a person to endanger themselves or get into a tangle with the law, or worse.
Our communities need to be inclusive and support those working hard to manage serious mental illness. Many of our most successful citizens live with mental illness. They just don’t talk about it.
The question is, why aren’t we making all the months Mental Health Awareness Months? Well. We are.
Thank you for visiting our blog. As always, we welcome your comments.