In our story collection and book, Behind the Wall: The True Stories of Mental Illness, as Told by Parents, the parent-contributors offer advice and talk in-depth about the emotional journey—rife with grief— that defines their experience advocating for a child with a persistent mental illness. As heartbreaking as it is to watch their diagnosed child suffer, parents also acknowledge the pain their “well” children endure. At almost every speaking engagement for our book, we are asked, “What about the sibling(s)?”
Parents tell us that their children, who are the siblings of a chronically mentally ill person, grieve deeply. There are several sources of a sibling’s grief. Shifting dynamics within the family is a significant factor. In a typical scenario, a very ill child with immediate and all-consuming needs hijacks parental attention while other children are inadvertently ignored. Parents typically focus on the child who constantly gets into fights, has run-ins with the law or is abusing substances. Meanwhile, a sibling may be quietly suffering without acknowledgment. Kids need to know a parent is emotionally available, which is not necessarily the case when another child is in crisis.
Though one child’s emotional health may be the most grave, all children need support. In fact, the whole family unit needs support. But sadly, grieving parents, who are also in triage mode, may be temporarily incapable of recognizing and/or providing for the emotional needs of their other children. Parents admit they were even unaware of their own grief while experiencing it. Most worrisome is that a young person’s unchecked grief can develop into more serious health issues later.
Such was the case for Kerri, whose son, Tomas, is prone to rages. When he doesn’t get what he wants, she says, he threatens to break things and then does it. His behaviors ruin special times for her daughter and make it uncomfortable to have houseguests. Kerri says her younger daughter had “enjoyed the time when Tomas was away at college. She had felt free to bring friends around, not worried her brother was going to do something weird” (qtd. in Widdifield and Widdifield 44).
Tomas’s all-consuming illness draws attention from his younger sister’s needs due to his demands, anger, and the way he often puts himself in harm’s way, creating one crisis after another. Tomas’s destructive behaviors and the resulting stress in the home, Kerri believes, have affected her daughter’s health.
I’ve always felt he’s ruined things for his younger sister. Here we are, trying to look at colleges and had planned a whole weekend… Our daughter, who’s a great kid and good student, was having health problems, and I always wonder if it was connected to the stress of her brother’s illness and all the uncertainty he has caused. She was first diagnosed with Lyme disease then later with chronic fatigue syndrome with fibromyalgia. We’ll never know her diagnosis for sure, but she became depressed from not feeling well, always feeling tired and run down, and it finally got to her. (qtd. in Widdifield and Widdifield 47).
When Tomas is at home, Kerri says, the family often feels as if they are “walking on eggshells.” Their home is not always a place of calm and peace because of Tomas, clearly not an environment conducive to entertaining friends much less healing.
In another scenario in which parental attention is diverted to the child who is acting out, siblings may subsume their own problems for fear of causing their parents more heartbreak. But unaddressed or unresolved emotional issues can bloom into larger problems. Still, other siblings use the shift in attention to engage in risky behaviors while remaining under the diverted radar of parents who are emotionally and logistically consumed.
Grief also derives from siblings feeling that they have “lost” their bother or sister to the illness. A person with a brain disorder often suffers cognitive (and personality) changes that may be permanent. Sometimes there is memory loss. It is bewildering to all family members and siblings that their brother or sister creates so much trouble and refuses to follow basic rules they once could understand; or that behaviors that are not tolerated from any other family member are excused for the “ill child.” Children are understandably angry with a sibling who creates unnecessary drama and seems to ruin every family event—from birthday dinners to vacations.
Sadly, a young person can’t often escape the impact of their sibling’s behaviors through supports outside the home, either. The stigma of mental illness means that a loved one’s health challenges are not usually disclosed to extended family or close friends for fear of being judged or, as one parent says, because others “can’t possibly understand what I’m going through.” Parents know that because of the bad (sometimes bizarre) behaviors of their child whose illness may be undiagnosed or under-treated, their parenting is scrutinized by those who don’t understand mental illness. Other family members are scrutinized too.
Esme, a parent-contributor says that her daughter, Laura, suffered directly when attention became focused on Jennifer’s chaotic, raging behaviors caused by her mental illness. Laura, a naturally easy-going and upbeat person, was banned from the home of a long-time friend by his parents who believed she would become like her sister, Jennifer. Not only did the community conflate Jennifer’s behaviors with Laura’s, but also Laura’s emotional needs were subsumed by her sister’s volatile, demanding behaviors. Being misunderstood in one’s community is hurtful, especially for young people. About community judgment Esme says,
I was hurt, but there was no action I could take other than console Laura who had by then been affected more than once by the community because of Jennifer’s behavior. That’s what stung the most. At that time Laura was starting to experience depression, which was also crushing. We definitely never intentionally ignored her, but we did ignore her because we missed cues that could have informed us of her well-being, and we shouldn’t have. It was accidental because we were focusing 98 percent of our attention on one child. (qtd. in Widdifield and Widdifield 37).
Growing up with a sibling or any close family member known for disruptive behaviors can lead to feeling isolated from one’s community. This isolation compounds the grief of “losing” a loved one to a brain disorder, especially when friends and community don’t acknowledge loss or recognize support is needed. A brain disorder, as many know, is not a “casserole disease.” Yet, all loved ones, including the person living with mental illness, suffer from a loss the relationships before the illness became symptomatic. As Bianca, a mother we interviewed astutely observes,
When a person has a brain disorder it’s traumatic for the family, like experiencing a death. If Miguel had been in a car accident and had brain damage, everybody would have enfolded him. The loss [his brother] Arturo felt about Miguel’s illness affected him the way I felt the loss and hurt of my divorce: if the man had died, I’d have gotten a card. Flowers at least. You are left with pain and grief that no one acknowledges. (qtd. in Widdifield and Widdifield 226).
Still, it’s important to know that families can heal and recovery is possible for a person living with a brain disorder. The grieving process represents progress, allowing for a “new normal” to bloom. Families of a person with serious, chronic mental illness are forever changed but they don’t have to remain broken. First, parents need to take care of themselves in order to support their children. Parents like Esme also recommend spending one-on-one time with each child to strengthen the parent-child relationship. Though creating that “normal” one-on-one time with other family members requires some work at first, it doesn’t have to involve complicated plans. Says Esme,
I’ve been learning to have balance and spend more time with Laura when her social schedule allows. When she was taking driver’s education I’d spend time in the car with her. We take moments. “Let’s go have dinner, just you and me.” Or, “Let’s go driving for an hour and stop along the way and go into shops . . .” Anything to steal a moment so she feels connected. (qtd. in Widdifield and Widdifield 37-38)
Even as adolescents and young adults rebel or seem to rebuff parental attention, children do need time with their parent(s). As another parent recommends, find something, anything that your child likes to do and share that activity. “Maybe it’s crochet,” he says. Many families do find fun activities that involve every family member to help heal relationships and reach a ‘new normal.’ Activities can be simple, such as hiking, biking, playing a board game, working a puzzle together or watching a movie at home. Start with something small if that’s what it takes.
Siblings need time to heal from their own journey grappling with “losing” the sibling they knew, escaping the chaos the illness creates in the home and/or accepting their loved one’s mental illness. Siblings may escape or lose regular contact with the family for short-term or long-term. In some cases, the sibling relationship becomes (or is deemed) irreparable, even toxic for one or both persons. For others, siblings come to an understanding and may even be drawn closer. Having shared joyful, meaningful early years together can determine the long-term relationships between siblings and those who understand mental illness, usually become in awe of their loved one’s strength to manage it.* Many siblings we met became the compassionate, adult healthcare advocates, managing their own journey loving and supporting a person with a chronic brain disorder.
No matter what the scenario, the journey of the person whose sibling lives with a serious and chronic mental illness must be acknowledged.
We recommend finding support at your local National Alliance on Mental Illness (NAMI) affiliate and participating in the free twelve-week Family-to-Family course to learn evidence-based information on mental illness, how to communicate with your loved one and about healthy self-care. NAMI was a resource many parent contributors found to be helpful in their journey.
*For an example of sibling compassion and understanding, please see our March 20, 2014 guest post from Michael Ross about his sister Michele, Eulogy for Michelle: Defining the Success in My Sister’s Life”
If you would like to share your story, please connect to us privately through this website or private email at: mwiddi [at] yahoo.com. Identity of contributors remains anonymous to protect family members.
Of course, we welcome any comments:
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By Elin Widdifield
I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.
Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
— Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.
Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.
When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.
All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.
The Merriam-Webster dictionary defines Grief in part as the following:
A: deep and poignant distress caused by or as if by bereavement
B: a cause of such suffering
Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.
When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.
Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1
When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.
Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.
The journey was jagged.
Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.
Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.
I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.
One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!
Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.
Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.
If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.
2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org
Comments always appreciated!
This is the question my sister, Elin Widdifield, and I ask one another as we prepare to talk about the important stories in our Behind the Wall collection. We don’t present the same talk or readings at every venue because there are so many different facets of parenting and advocating for a loved one who lives with serious mental illness. What we talk about with mental health care professionals is different than what parents of children recently diagnosed can benefit from; then there’s a slightly different conversation when speaking to a broader audience. This subject matter is really important to us, so we have plenty we want to talk about.
As we prepared for the parent interviews that became the stories in our collection, we knew through personal experiences what areas of this parenting journey we wanted to explore. At the top of the list were questions concerning parents’ experience of grief and of course, coping. Other themes consistently bubbled to the surface throughout the course of interviewing including, and unexpectedly, thoughts about how to talk about mental illness.
Though our great-uncle, Dr. Lawrence Collins, was a well-known psychiatrist many years ago, the rest of the family of lay people didn’t have a language to discuss my grandfather’s illness (nor was the illness specifically identified) that caused chaos for his young wife (our grandmother). As he developed a pattern of missed work, his wife hid his illness, covered for him, and endured privately; his children rarely entertained friends at home. They would say he was “sick again” and everyone knew to keep a distance. It is a blessing they all possessed a wicked sense of humor and despite the chaos, recognized my grandfather’s positive qualities as distinct from the sickness.
We now understand alcoholism is an illness; treatment is available and celebrities talk openly about living sober. Yet talking about mental illness hasn’t quite caught up and widespread misunderstanding prevails. In my grandfather’s day, a cancer diagnosis wasn’t talked about outside the family either because, until cure rate statistics rose to foster hope, it signified doom. The stigma around mental illness is largely a result of the odd and frightening behaviors a person exhibits when the illness is untreated. There’s also a small, yet significant factor feeding stigma, one that is similar to how cancer was once viewed; it is a sense of hopelessness associated with the diagnosis. Sadly, what many don’t understand is that a person who is diagnosed with serious mental illness today can reach recovery with early detection and evidence based treatment. Many of us endeavor to address this misunderstanding through more accurate language.
There is an ongoing broader discussion about media and society’s penchant for exploitative and sensational language. I depart from that discussion here to focus on the manner we, as advocates, family members of those diagnosed, and individuals managing their illness use—or fail to use— clear language when talking about brain disorders. Through our interviews with parents, Elin and I saw that the way parents talked about mental illness, specifically and generally, matters a great deal. The way we use language, or lack thereof, reinforces stigma and the walls of isolation.
… managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Managing any chronic illness is a challenge and support for caregivers is as critical as support for the ill person. Stigma drives people away from providing this support to the supporters. Of a person with mental illness, we’ve heard it been said, “He’s off” or, “She’s a mess” and even worse, “He’s crazy!” In contrast, think about the language of cancer: “He’s fighting bravely.” “She fought a heroic battle with cancer.” Without discounting the bravery attributed to fighting any painful mortal illness, I assert that managing one’s own mental illness, or supporting another in that challenge, is the most brave and compassionate existence I’ve ever witnessed. It’s a battle fought day in and day out.
Elin echoes many other parents we interviewed when she states that mustering courage to be able to say her son’s diagnosis aloud was a milestone and marked a step toward acceptance and subsequent recovery. Verbalizing truth is key to acceptance. One Behind the Wall mother, Tessa, tells us when she accepted his illness, “his whole world got better.” One’s life improves because acknowledgment leads to effective treatment and importantly, the individual’s own acceptance. A person can only manage his illness once it has been accepted without judgment. Elin and I were quite alarmed that several parents we interviewed revealed that other family members, or worse, even the child’s other parent, were in denial about the diagnosis despite very clear symptoms. A subtext of conflict or judgment about the diagnosis among loved ones hinders a person’s chances for recovery.
Talking openly about mental illness is difficult at first. Elin and I found that once we started talking, others came forward gratefully to share their experience. Bianca, a Behind the Wall mother whose son lives with schizophrenia grew tired of skirting the issue. Now she just tells people. “My son has schizophrenia,” she says. “You know, You guys deal with it!” Because Bianca understands that she can’t control how others judge her son but speaking honestly about her experience and his illness is liberating, particularly when there are many more important issues about the illness to address on a day to day basis, like, “How is my son feeling today?”
Even ignoring the stigma, the parent/advocate role is sometimes grueling. A marathon. Communicating a need for help is no different than any other life challenge. Asking for help is an act of bravery, it’s practical and self-preserving.
Language and communication tools are much better than what my grandmother could access. When her husband drank, he was unavailable. The behaviors he exhibited that we now surmise as his mental illness were just “moods”. Sixty years later, when my nephew was diagnosed and at each juncture of his illness, my sister and her husband sent emails to extended family. Yes, that’s right. They talked openly about it. They spelled it out in vivid detail in email distributed to the whole family. Their emails carefully and factually conveyed a clear message: this is happening, please support us, and here are phone numbers and addresses. More recently, the emails speak about incredible progress.
It has been my experience that people really do want to help others in crisis. But, as one Behind the Wall mother reminds us, not all people understand mental illness; while that’s good for them that they have not had to experience the illness, the misunderstanding isolates a family just when community support is needed most. When one Behind the Wall mother, Rebecca, hospitalized her daughter, she didn’t want everyone to know every detail or have to talk about her experience to every person she encountered. But she did want support in the form of being with friends in a setting that was not all about her daughter’s illness. Like my sister, she used email to update friends about Stella’s, progress. She’d say, “I don’t want to talk about Stella’s progress at dinner tonight or church group tomorrow, but here’s what’s going on so you all know…” This way, she framed the type of support she needed, which for her was friendship and normalcy. Getting it all out in the open, limiting speculation and clarifying her own wishes, made it easier for Rebecca.
The journey supporting her son has been long for Tessa. Her son, now in his thirties has a dual diagnoses of substance use and schizoaffective disorder. Tessa is honest and uses humor to manage and cope. Sometimes, during conversations, he’ll even tell her, “I don’t know what I think about that because I’m crazy.” And when he’s not taking his medication or caring for himself properly, she says, “You’re crazy!’” Her friends tell her she shouldn’t say that to her son. But she tells them she’s treating him like a normal person. She purposely uses the same language flung carelessly about by others to create normalcy. She’s also expressing her defiance and challenging the language of stigma. She is declaring her commitment to a fearless, indefatigable, daily fight against mental illness.
Comments are always welcome:
Sometimes it seems to happen overnight. In other cases, parents know there is something different about one’s child from an early age. When it hits suddenly, a parent may see signs of mental illness creeping up only in hindsight.
No matter the evolution or specific diagnosis, the journey of parenting a child with mental illness is an unfathomable challenge, unimaginable to those who have not been the parent and witnessed scenarios that even in the retelling are difficult to believe. When a child becomes increasingly symptomatic, chaos erupts in the household and the lives of each family member are affected. Not just a little, but significantly. Managing this chaos while searching for solutions for the ill family member can feel overwhelming. Yet parents get through it. The Behind the Wall parents we interviewed describe the early stages of the illness in similar terms as the steep learning curve of boot camp training with an over abundance of emotional turmoil. But the learning curve sharpens parents into invaluable advocates in managing treatment for their child; they hold the whole health history from the smallest obscure observations to the concrete details of hospitalizations and medications.
Parents and families can be integral to the recovery process. Statistically, there is a higher rate of recovery for those who are well supported by a loved one and this is usually the parent. They work harder than anyone at keeping their child safe. They fight for a diagnosis and treatment and are usually best positioned to encourage compliance. Sometimes, they even enforce treatment because they know it’s best.
But then their child turns eighteen.
Says one Behind the Wall parent, “I wanted to help my son, but I was prevented from doing so.” What a difference a day makes. At eighteen, because of HIPAA (health privacy laws), parents are effectively excised from their child’s treatment team.
After a recent mass shooting (pick one) many commentaries in the media sphere asked, “Why didn’t the parents do more to prevent this?” I’ll concede discussions of gun laws to others. And while it’s unfair to conflate violence with serious mental illness because statistics don’t bear this connection, these incidents bring the stigmatized topic of mental illness bubbling to the surface. And as an advocate, one must seize the conversation to explain that there are a myriad of reasons why a parent doesn’t have all the power to help an adult child living with serious mental illness, and the important ones hinge on eighteen.
Even when symptoms of one’s illness are present throughout a child’s whole life, behaviors often become more severe during teens and early twenties. It can take months, even years to obtain a proper diagnosis and treatment particularly when substance use is involved. It is not uncommon for a person to try several medications before finding one, or a cocktail of as many as seven at a time, to become stable not to mention functional. What may work for a year may need to be reduced, increased, or changed later. In Andrew Solomon’s New Yorker article, “The Reckoning,” Peter Lanza, whose son was the Newtown shooter, describes how Adam was given medication that caused him serious side effects. It is inferred that the medication trial did not proceed. Adam refused treatment. Usually one must try several before getting it right, though convincing a person to try medications that make one feel lousy, at least at first, is easier said than done and truthfully, all medications have some side effect. A feature common to serious mental illness, anosognosia, is defined as the inability of a person to comprehend he or she is experiencing mental illness. And it’s another serious impediment to convincing one into treatment compliance. If a parent is fortunate to obtain a diagnosis and a treatment plan that has promise for their child, it offers hope that the individual will stabilize and recognize just how ill they were before treatment. But tick tock; the clock counts down to the magic hour of one’s eighteenth birthday.
. . .expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic.
Treatment cannot be enforced on a person who is over eighteen and unless one’s child signs a HIPAA release, the person(s) who hold the whole medical history, the parent, can effectively be excluded from healthcare decisions. Parents have told us they call their child’s therapist and say, “I know you cannot tell me anything, so I’ll feed you information.” It bears pointing out that expecting a person who is experiencing psychosis to willingly sign a release, much less ask the medical staff that he wishes to do so is at times, unrealistic. Kerri, a Behind the Wall contributor, tried bringing clothes to the hospital that her son called to request. But because he forgot to sign HIPAA papers, and forgot to tell her where he was, she couldn’t bring his clothes or even visit him for days. Losing a healthcare advocate in a parent because of the over-eighteen law presents serious dangers considering that a parent knows through shared experience how a certain medication has triggered mania for their child, for example, or severe and lethal tachycardia.
Fortunately, these barriers that parents encounter have become a salient to mental healthcare discussions and better yet, to proposed legislation (see links below for information about Murphy’s Law.)
No person in this known world excuses violence perpetrated by a person who lives with mental illness or experiencing psychosis. Those who do live with and successfully manage their mental illness most certainly don’t accept this message. Instead of asking, “Why didn’t the parents do something to prevent this?” Perhaps the real question is, “How can we address this over-age-eighteen issue?”
Because the truth is, these parents need our support not our judgment.
Andrew Solomon, “The Reckoning” New Yorker: http://www.newyorker.com/reporting/2014/03/17/140317fa_fact_solomon?currentPage=all
Comments are always welcome:
Recommended links regarding proposed mental health legislation:
OP-ED: Overhaul of mental health care long overdue, by Rep. Tim Murphy, Philadelphia Inquirer (January 26, 2014)
Mental Healthcare in the U.S. Needs a Check-Up, Editorial Board of the Washington Post (April 16, 2014)
Better Care for the Mentally Ill is Crucial for Our Society, Dr. Cyril Wecht, M.D., J.D. for the Pittsburgh Post-Gazette (April 13, 2014)
Worthy of Support, editors of the Toledo Blade (April 9, 2014)
Worthy of Support: Murphy’s Mental Health Bill Faces the Critics, editors of the Pittsburgh Post-Gazette (April 6. 2014)
The Definition of Insanity, editors of the Wall Street Journal (March 31, 2014)
A Mental Health Overhaul, editors of the Wall Street Journal (December 26, 2013)
Sound Off: Mental Health Reform Needed to Aid Patients, Dottie Pacharis for The News-Press (Fort Myers, FL)
We need to take a proactive approach with mental illness, Guest Opinion by Liza Long (author of “I Am Adam Lanza’s Mother”) in the Idaho Statesman (January 13, 2014)
A Law to Fix Mental Health Care, Dr. Sally Satel for Bloomberg (December 22, 2013)
All in the Family: Mental Illness and Caregiving Across the Generations, Rachel Pruchno, Ph.D. for Psychology Today (January 15, 2014)
New Bill Decreases Mental Health Funding, Increases Mental Illness Funding, DJ Jaffe for Huffington Post (December 18, 2013)
Murphy’s bill a step toward mental health reform, Observer-Reporter (Washington, PA), (December 21, 2013)
San Fran should take up Laura’s Law again, Amy Yanello, San Francisco Chronicle (December 20, 2013)
Rep. Murphy’s Bill Would Shift Focus: Make Major Changes In Mental Health Care, Pete Earley, journalist and father of mentally ill son
Eight things NOT to say to a parent whose child lives with serious mental illness and how to respond if you’re THAT parent.Posted: March 6, 2014
“What parent doesn’t feel their child’s pain?”
This is what Esme, a contributor / parent to Behind The Wall asks. As the saying goes, “We are only as happy as our most unhappy child.” Parents take on their child’s pain and usually wish they could take it all in their stead. Our parental vigilance is heightened when our child is sick; we fiercely monitor how he is treated physically and psychologically.
This is the agonizing reality for parents of chronically sick children: witnessing the suffering that accompanies an illness. In the case of mental illness, much of this pain derives from societal judgment. With that in mind, imagine saying to the parent of a child who lives with developmental disabilities, “Boy, your son is really, really dumb! Ha!” No one would ever say such a thing. But Annie, a contributor to our Behind The Wall project, tells us that the parent of a boy who went through school with her son once said, “I saw your son on the street downtown. Boy! What a wacko he is!”
As if Annie didn’t know her son has some challenges. Thank you, but yes, she knows his behaviors are sometimes a little odd.
Now, you may be thinking that the person who said such a thing is a clueless person who, if you were to meet, anyone would recognize her as misguided. But in fact, she is a respected body/mind health instructor.
As horrific as this comment may seem, sadly it is not an uncommon experience for parents of adults living with serious mental illness (SMI). But parents like Annie and Esme become accustomed to a society that really doesn’t understand. Esme’s daughter lives with bipolar disorder and borderline personality disorder. Even after being told her daughter was no longer welcome at a friend’s home, Esme is circumspect. Regarding how others perceive her daughter and judge her parenting Esme says, “I’m a private person and also the type of person who doesn’t really care what other people think. It’s not their life and good for them they don’t have these problems. That’s the way it is.”
Here’s a guideline one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers.
It is difficult to understand the reality of SMI. Those of us who have a loved one who lives with chronic mental illness all agree that others should be grateful not to know about the challenges brain disorders inflict on both the ill person and his immediate advocates and caregivers. Even non-nuclear family members who don’t live with the ill person don’t really get it. Showing understanding to a parent of a child with SMI does require some degree of delicacy, the same goes for addressing a parent whose child has died or has any other challenging disease. Here’s a guideline one may find helpful: many parents describe the grief associated with having a child with persistent mental illness as similar to experiencing a death. But without the casseroles and flowers. There is nothing you or anyone can say to make it better, so don’t try. But expressing compassion without judgment, is the gesture of support that is always valued.
Here are some common misguided comments similar to those parents often hear, and how to respond. Even in the tender place that parents reside, responding with honesty can assert one not as victim, but as caregiver and advocate as well as messenger.
1. Be glad it’s only bipolar and not schizophrenia
Response: Both bipolar disorder and schizophrenia are serious brain disorders and both are difficult for the person living with the illness.
2. She’s just a drunk!
Response: Yes, she has a dual diagnosis, which means she has a diagnosed mental illness and uses substances. She tends to medicate her depression with alcohol and it has become alcohol abuse, for which she is getting help.
3. Aren’t you afraid that he’ll hurt you? Aren’t you afraid to live with him?
Response: Not all people who live with mental illness are violent. I am not afraid of my son. He has never been violent. Actually, people with serious mental illness are eleven times more likely to be victimized by a violent crime than the general population.*
4. Isn’t mental illness just an excuse for bad behavior?
Response: Sometimes mental illness looks like ‘bad behavior’ to others. For instance, when police try to reason with a psychotic person who is hearing voices or experiencing delusions, the person’s behavior may seem odd or defiant. A person experiencing an altered reality may also be very frightened. The person cannot understand or respond to what is said because his inner process is altered, which makes him unable to hear the real world around him or process what is happening. Often, his response times become delayed also. He does not choose to have these experiences.
5. She’s really out of it.
Response: Yes, she has psychosis. Because of her brain disorder she sometimes hears voices, and her reality is different from ours at this time. She does not choose to have these experiences. What is most helpful to her is kindness and understanding.
6. You poor thing, having a child like that. How do you do it?
Response: It is challenging to advocate for an adult child with mental illness. There are no outward signs to indicate she needs to be treated with kindness. But there are stigma and myths that perpetuate misunderstanding about mental illness. The person who suffers most is the person with the brain disorder because she remembers herself as she was, and knows what she has lost. What’s painful for parents is that we cannot always help our child and sometimes others falsely judge us for our child’s illness.
7. How did this happen?
Response: Mental illness is a confluence of genetics, environment, and possibly drug use. It is a brain disorder that we parents didn’t cause.
8. Why won’t he just take his meds and stay in school?
Response: Some people who live with mental illness also have anosognosia, a common feature of brain disorders that affects the self-awareness of one’s own illness. This is the reason many who live with mental illness don’t believe they are ill and therefore, don’t think they need medications. Some professionals and advocates believe that if mental illness was not stigmatized, those who need treatment would be more likely to embrace it.
Here are ways to communicate your support for a parent who cares for a child with a brain disorder:
If you want to learn more
You can say:
- I don’t know much about brain disorders but explain her illness to me and tell me what I can say to her or how to act toward your daughter.
After learning about their child’s hospitalization
You can say:
- I’m sorry. Can I help your family while he is in the hospital? Can I walk your dog, or pick up food for you?
- Would it be ok to send your child a card in the hospital?
Show general concern
You can say:
- I’ve heard that it sometimes feels as though you have lost the child you once knew.
- What would be helpful to you at this time?
You can and want to offer your time or perform a helpful task
You can say:
- Any time you need to talk, I can listen.
- Any time you need a distraction, call me and we’ll go to a movie, for a walk, out for coffee…
- I am happy to offer my _______expertise.
Examples: cook meal, help navigate insurance, find a psychiatrist, research medications, walk the family dog, drive other children to school/ sports/ activities, help the family locate a Family- to -Family NAMI class or find other support.
And one more thought: If you’re a parent who’d like others— friends or other family members— to understand your difficult parenting journey, or you have a family member whose child lives with SMI, we recommend this blog. Yes, a shameless plug. But we don’t sugar coat anything here and it has helped our own family. Maybe we can help yours.
* Mr. Insel’s blog entry that we have cited can be found at: http://www.nimh.nih.gov/about/director/2011/understanding-severe-mental-illness.shtml) Thomas Insel, NIMH Director, January 11, 2011.
We welcome your thoughts:
When Riley, who is diagnosed with schizoaffective disorder, goes off his meds it’s usually coincidental with a binge of heavy drinking. His mother, Maika, a parent / contributor to Behind The Wall tells us that during these phases he will disappear for weeks or months at a time. She wrings her hands, fear and heartache are constant companions; she wonders what will happen to him, what dangers he will confront during these distressing episodes.
Riley’s past is marked by a pattern of disappearances, psychosis, and homelessness, often resulting in forced hospitalizations or jail time for public drunkenness and fighting. Once, he was arrested after an incident occurring while psychotic and was jailed for nearly six months where he experienced untreated psychosis, mistreatment, and developed other physical health issues.
Riley is dually diagnosed, a combination of two brain disorders, one of which includes addictions. It’s a complex and confounding mix that for many predicts a life of institutions and early death.
Our dually diagnosed loved ones bounce from rehabilitation facilities to hospitals, from homeless shelters to sober living, from jail to group homes, and back to rehabs. Many drug and alcohol rehabilitation facilities claim qualifications to treat patients with dual diagnosis. What this may actually mean in reality is they have a nurse on staff dispensing medications prescribed by a staff psychiatrist. Some rehabilitation facilities employ a harsh, confrontational style designed to address the addictions. But confrontation is usually detrimental to people who live with mental illness because such interactions can cause stress, a well-known and primary trigger for launching a mental illness crisis.
But where hospitals and residential facilities treat the mental illness, the substance abuse issue is often ignored. In one of our earlier blog posts, Just Another Friday Night in Lockdown, (July 26, 2013) a mother describes her experience with Scott, her dually diagnosed son who had been checked into a well respected ER hospital that treats many mentally ill patients experiencing psychosis. Having advocated for Scott through the many years of his illness, this mother knew that doing everything she could to support his sobriety was an imperative to getting him well and keeping him well. When the attending physician ordered an addictive drug, a benzodiazepine, to calm his mania, this mother protested, explaining how a benzodiazepine could trigger her son’s addictive brain and undermine his hard fought year of sobriety. She knew the drug Haldol alone would be enough to settle Scott, who hadn’t slept well for weeks. And yet, the doctor on staff simply ignored this mother’s request.
… for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted.
For a person with dual diagnosis, illness management is challenging and treatments, when administered by medical professionals trained in one area of mental health but not both, which sadly, is often the case, becomes at odds. Because of these complexities, for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted. The person with a dual diagnosis often feels isolated from community, society, and feels failure for the inability to manage both facets of their illness. And like Maika, the parents live with constant worry, fear, and grief.
So, What Would Effective Treatment for Dual Diagnosis Look Like?
In over 20 years of research, Dr. Robert Drake of Dartmouth and his colleagues have devised evidence-based practices for this unique and treatment-complex population. Ideally, treatment is integrated community-based and delivered by well trained providers using positive motivation and counseling, peer group support, supported vocational and life skills training, and medication management. Families are also included in this equation and also receive valuable support and education.1
Recovery looks different for each person with a dual diagnosis and it can be a long jagged journey. Maika wants her son to stay on his medication. She wants him to live at home where he will be safe and well fed. He won’t stop drinking but she asks him to at least use ‘harm reduction’ – that is, cut back on his alcohol consumption and stay on a good sleep schedule. She is grateful for every sign of progress and hopes one day he will be able to return to college or a part time job.
In general, a person in recovery works with a treatment team and learns to manage symptoms. This includes good sleep hygiene, nutrition, exercise, and knowledge of one’s medications. The patient participates regularly in support groups and self help groups. Recovery may include independent or group living, or living with one’s family. He or she may be able to volunteer, work, or take college classes. She has sober friends and feels she belongs in her community.
Parent / contributors to Behind The Wall have learned that being supportive and understanding of their dually diagnosed child’s complex challenges offers their best chance for recovery. And, there is hope.
1 An abstract of Dr. Robert Drake’s important work can is posted on psychiatryonline.org: http://ps.psychiatryonline.org/article.aspx?articleID=85734
For further and more comprehensive reading on the subject of dual diagnoses treatments, we recommend starting with the following resources:
Drake, Robert E. and Kim T. Mueser. “Psychosocial Approaches to Dual Diagnosis.” Schizophrenia Bulletin, Vol. 26, No. 1, 2000.
Friman, PhD., A.B.PP, Patrick C. Dual Diagnosis: Adolescents With Co-Occurring Brain Disorders and Substance Abuse Disorders, Fact Sheet. National Alliance on Mental Illness (NAMI). http://www.nami.org/Content/ContentGroups/Illnesses/Dual_Diagnosis_Fact_Sheet.htm
Jackman, Tom. Dual Diagnosis: Substance Abuse and Mental Health. The Washington Post. Washington, DC, July 28, 2009. http://www.washingtonpost.com/wp-dyn/content/discussion/2009/07/28/DI2009072801297.html
Thesis, Evelyn. “Addicts Often Battle Mental Disorders.” Sun News, Cleveland, Ohio, September 14. 2012. http://www.cleveland.com/healthfit/index.ssf/2012/09/for_many_addicts_recovery_mean.html
Additional Sources for Dual Diagnosis Evidence-Based Practices:
Drake, Robert E., Kim T. Mueser, Mary F. Brunette, and Gregory J. McHugo.
“A Review of Treatments for People with Severe Mental Illnesses and Co-Occurring Substance Use Disorders.” Psychiatric Rehabilitation Journal, v27, n4, p360-374.
Drake, Robert E., Susan M. Essock, Andrew Shaner, Kate B. Carey, Kenneth Minkoff, Lenore Kola, David Lynde, Fred C. Osher, Robin E. Clark, and Lawrence Rickards. “Implementing Dual Diagnosis Services for Clients with Severe Mental Illness. Psychiatric Services, v52, April, p469-476. 2001.
Regier, D.A., M. E. Farmer, D.S. Rae, B.Z. Locke, S.J. Keith, L.L. Judd, and F. K. Goodwin. “Comorbidity of Mental Disorders with Alcohol and other Drug Abuse. Results from the Epidemiologic Catchment Area (ECA) Study.” Journal of the American Medical Association, v264, n19, p2511-2518. November,1990.
As always, your comments are welcome!
This is what you do in an emergency: take care of your primary needs so you can help others who aren’t as capable. Put your oxygen mask on before helping your child. The concept seems contrary to what we know as parents. For many, parenting can be defined as a willingness to sacrifice everything to benefit your offspring. Save the child first!
But rationally, how can you save your child if you’ve passed out?
Such is the advice from the most heroic parents I have ever encountered. These parents have children diagnosed with serious mental illness and provided the stories for our collection entitled, Behind The Wall: The True Story of Mental Illness as Told by Parents. The analogy to “save oneself first” gets much play, but hearing this advice from parents of high need children (nearing adulthood or young adults) who weather unpredictable events layers an authentic sheen to the concept. Their advice to take care of oneself so you can be present for your child is fundamental for all parents.
Parenting at its easiest is still a marathon not a sprint. A high-need child is like adding twelve miles of hills. The question becomes, “How does a parent take care of oneself when the child requires constant attention, and a crisis can erupt without notice at any time?”
Dan (no real names used), a father of a daughter who lives with schizophrenia, advises to avoid making your child’s needs (or illness) the sole focus of your life. Of course, when a child is in crisis and/or going through a complicated process toward finding effective treatment, a parent needs (and wants) to be all in. But when the crisis lifts, Dan enjoys a hobby, riding his motorcycle. Sometimes Dan must put aside his needs to address his daughter’s, but when possible, he’s riding. He insists his hobbies, in turn, benefit his daughter. Says Dan, “Because if the child starts feeling like everything is about them and what they’re going through and their problem, you end up with guilt and a sense of responsibility and that’s not positive.” If a parent doesn’t live his own life, it can send a message to their child that they are incompetent, that there is no hope, no expectation that they can function on their own. And they won’t. And this goes for all parent-child dynamics.
For parents of high-need children approaching adulthood, there are often difficult logistical decisions to be made, the result of which impacts the whole family. In our recent blog, Society’s Way or Best Way, we wrote about ignoring societal pressure to “launch” a child, or make him live on his own before he is ready. A person living with mental illness requires time for the brain to heal after a psychotic episode or while recovering from severe depression, for example. After publishing our post, one of our contributors astutely commented that there are times when having a person with mental illness live in your home is disruptive to family members—the marriage, other siblings—and in those cases group homes are a best option. Parents sometimes feel guilty about admitting that when their child is in a treatment facility—hospital or group home—that their own home is calm and other family members are happier. It may appear to outsiders that sending a family member “away” is cruel, or selfish. It is never an easy decision to send a child away though ometimes doing so best serves the family’s well being.
Aside from hobbies, other parents cited that getting away for a weekend when possible, yoga, or even going out with friends was rejuvenating. Dan’s wife, Rebecca, spends time with friends. Maika, whose son Riley lives with schizoaffective disorder, walks her dogs. Sometimes her son’s behaviors, like binge drinking or deciding to go off medication, make her furious so she screams into pillows. Our contributors often recommended seeking therapy to cope with a challenging parenting journey —simply having a person with whom they can talk without being judged.
Most all of our contributors suggested support groups through organizations such as AL-ANON (Alcoholics Anonymous, http://www.al-anon.org/) or NAMI (National Alliance on Mental Illness: http://www.nami.org/). NAMI reports studies that show sharing one’s story and hearing others tell of similar experiences helps one feel less isolated. Simply, knowing you are not alone with whatever challenges you face is psychologically beneficial. That is the magic of support groups, and perhaps that is why at the completion of nearly every one of our interviews contributors commented they felt better by sharing their whole story. We often heard, “Whew! That felt good,” to finally unload the long and courageous journey of parenting a child living with mental illness. The act of sharing, and, potentially helping others was healing. Meanwhile, there we sat, in awe.
Whatever your method, put your mask on first.
As always, we love to hear from our reader / followers.
Perhaps you’ve noticed the PSAs produced by Bring Change 2 Mind, the mental health advocacy organization founded by Glenn Close and her sister Jesse. The organization’s mission is about reducing the stigma around mental illness. The ads feature people in pairs. In one ad, each pairing wears plain white t-shirts with one’s mental illness diagnosis, “schizophrenia,” for example, printed plainly across their front while their partner’s label may say, “sister,” or “wife,” or “mother.” These many white-shirted pairings move through a crowded train station, the obvious message being that there are many among us who live with mental illness and they and their loved ones wish to break the mental illness stigma and spread the word that there is hope. Another interpretation might be that there are many among us who live with mental illness who need support of another.
There’s more to Glenn Close’s partnership with her sister for mental health advocacy than her celebrity. It’s that in order to have hope with mental illness, there really must be a partnership of some kind, whether it’s a sibling, spouse, or in many cases, a parent. A mentally ill person’s chances for recovery significantly improve when they have support. A person in a mental health crisis is often incapable of the self-awareness that he is unwell and only a trusted partner can convince an often unreasonable individual into treatment. And even that can be dicey.
A mother of a son who lives with a serious, persistent mental illness once said she thought the reason there wasn’t more advocacy around mental illness, more marches and money raising for research, was because the parents and family members are too exhausted and can never plan anything too far in advance. You just never know what’s going to happen from one day to the next. Another mother we interviewed admitted, “You never know when the other shoe is going to drop.”
The truth is, a mental illness significantly impacts the loved ones of the diagnosed. Of course, most serious illnesses impact loved ones. But particularly in the early stages, brain disorders are wildly unpredictable. The illness can change day-by-day, hour-by-hour. Symptoms of one’s mental illness are frequently identified after a series of harrowing events, self-harm and frightening behavior. The brain is both delicate and powerful. Dan, whose daughter, Stella, was later diagnosed with schizophrenia, was engaged in intelligent conversation when she began talking about a chip in her head, seemingly out of nowhere.
I once overheard an acquaintance complain that she was tired of her friend cancelling plans on her all the time. “She’s so selfish,” She said. My jaw dropped. Because the “friend” she was complaining about is the parent of a son who lives with a serious brain disorder. Parents of adult children with mental illness often say things like, “Today we are great. If you’d have asked me two months ago…”
And that’s the rub. The parent of a mentally ill child makes for a lousy friend. Yet who needs support more than a person who is constantly on guard, monitoring another’s needs? When a crisis can, and often is, a life or death drama? They are preoccupied. They cancel, don’t return calls, and their everyday concerns are about who will care for and what will happen to their child tomorrow, next year, and after they are gone. When the abnormal amount of time passes without hearing from my friend, the mother of a bipolar son, I don’t take it personally. I worry.
As a result, it is common for the parents of adult children with brain disorders to lead rather isolated lives. It’s difficult for those who don’t live with a mentally ill person to understand the daily challenges. And again, it’s difficult to make plans.
Parents frequently tell us about the physical, mental and emotional exhaustion from expending the energy required to stay on top of things—whether it’s keeping their child on their medication or simply the constant monitoring of moods. Not to mention the stressful decision-making required during hospitalizations, or for addressing treatment choices, or even worse… the insurance.
A single mother of a son diagnosed with schizophrenia told us that while she is often exhausted beyond belief, she does have the support of a male friend who visits her son when he is hospitalized and while she is working. Her son’s friends, a very special group of young men who remain loyal, make sure to spend more time with him when she needs to be out of town.
Our social protocols don’t outline what to do when a friend’s loved one is diagnosed with mental illness only because society seems to see “mental illness” as something different than other serious illnesses. There aren’t flowers, cards, and casseroles. But perhaps there should be. And as with other illnesses, after the initial shock of the diagnosis, there could be follow-up calls, and the simple gesture of listening.
Let’s join Glenn Close and her sister Jesse in spreading the word about breaking the stigma of mental illness. Go one step further and help others understand what mental illness really means to the diagnosed and their loved ones. Some day, it won’t be uncommon for the families of a person diagnosed with serious mental illness to hear, “What do you really need?”