The (other) kids are all right… Or are they?

Sharing joyful times in early childhood builds lasting sibling relationships.

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.

Elin and I are fortunate to have supportive sibling relationships.

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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Grief: The Path to Hope and Recovery

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.

Elin walking on path with sisters

Support from my sisters eased the grieving process.

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.


1 Up to 60% of people who have a mental illness, also have co-occurring substance use disorder. www.nami.org

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!


C’mon. Say it: mental illness.

word collage-1 What do we want to talk about?

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:

 


How Social Media Made Us Feel Media Awkward.

Social-MarketingSo, this is awkward.
My sister, Elin, and I set out to put a collection of stories together to help other parents and the extended family members learn to manage and advocate for a loved one who lives with serious mental illness. It was borne out of our own need; we wanted these stories for ourselves, to help us better support our loved one who had been recently diagnosed.

The editing process for our Behind the Wall collection was at times challenging. The gravity of the subject matter was palpable and honorably representing the stories and the storyteller, at times, daunting. These are difficult stories to tell and hear, and we felt it important not to sugarcoat. There were times one or both of us had to step away from the emotional intensity. We were confronted with our own relationship to the ideas and realities of mental illness, and how it affects our loved one, each other, and ourselves.

What kept us on task was thinking of the parents who told us after being interviewed that they considered the project important and earnestly hoped their story could help someone else—someone who was feeling isolated and scared as they’d once been. In the end, we received much more than we gave, much more than what we could ever have anticipated. We met inspiring parents who showed us how to be better, more compassionate human beings.

The Behind the Wall collection began five years ago from the time of this writing. As we rounded the corner and saw our collection taking the form of something we felt useful, we recognized that we had more to say—insights we had learned from parents but that didn’t quite fit the story collection format. That’s when we began writing our blog.

The blog turned out to be a good thing. It helped us to continue processing concepts for coping and living with having serious mental illness in the family. And, as luck would have it, when we talked to agents about our book they said, “You’ve got to have a platform! Social media! Blog!”

We thought, “Good for us! For once, we’re following the rules of the game!” Besides the blog, we had also begun using Facebook and Twitter to connect with others who are serious about talking about this important issue. Through social media we learned about many organizations doing good work to support individuals living with mental illness and their families. We learned that social media can be useful!

Our primary motivation for our story collection, blog, and social media has always been to share useful information we learn. We are doing whatever we can to spread the word about the importance of supporting those who live with serious mental illness, and supporting their caregiver/advocate and loved ones. We wanted to participate in spreading the word about the harmful effect of stigma and how it delays treatment, which in turn impacts recovery.

Because every individual’s mental illness manifests uniquely, and there is no “cure” for brain disorders, we never have, or ever will, advocate for a miracle treatment or standard “it’ll fix anything” treatment. While we may describe a particular evidence based treatment that has helped others, we do not advocate a particular medication or the decision to take NO medication.

So, imagine our surprise when we were accused of shilling/helping to promote a company via social media that advocates quitting doctor prescribed medications in place of vitamin supplements. Um. That was awkward.

We’re not saying that this protocol is recommended OR NOT recommended.


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. 


Our responses to those we follow on social media are responses to particular statements, or tweets, for example, not endorsements of said tweeter’s whole philosophical stance. Advice/comments we advance are those echoed by the many experienced parents we have interviewed. Our goal has always been to bring stories to the forefront because there is tremendous healing in knowing others are living similar stories.

We forward information that includes such things as new clinical studies or literature that may be interesting and useful to others but that are from reputable sources. Because we’ve been keeping pace with the current literature, we can vet it for those new to the journey of managing mental illness, or we may learn about a new study that advances the treatment of mental illness and we want to share it.

That said, while we will not offer advice on treatments, there are a few recommendations we always stand by. And here they are:

  1. Regular exercise is good for everyone.
  2. Everyone benefits from a healthy, nutritious diet.
  3. Treatment sought for mental illness and/ or substance use should be evidence-based, and this means by a reputable source.
  4. When diagnosed with any illness, one should learn as much as possible from reputable sources.
  5. Obtain second opinions. Preferably more.
  6. If a “cure” seems simple, or one that “is being kept from the public by some large entity”, beware. If something is too good to be true, it is not true.
  7. Trust your gut.
  8. If you have been diagnosed with a serious illness, enlist a trustworthy advocate who doesn’t tell you everything will be okay, but who is willing to follow evidence based guidelines for your care when you are unable to advocate for yourself. If you are the caregiver, don’t say everything will be okay, but instead do your homework and understand the illness as well as you can.

 There it is.

We welcome comments.


The countdown to 18

18-2

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.

ConversationBubbles2Plus, how to express genuine support.

 

“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:


What’s Different This Year?

Contemplating the year’s accomplishments.Happy_New_Year Clock

At the end of every year each member of my immediate family writes on paper what is important to him or her at that moment in time and what he or she wishes to accomplish in the coming year. We seal these declarations into an envelope and save for the same time next year. Then we open those we’d written the year before.

Younger children quickly see how friendships and desires can be fluid, that what they think is important may not be over time. And they see what is lasting in their lives. Most importantly, this ritual shows how much progress one makes in a year, in little things to the more obvious, from penmanship to passions over a particular movie, toy, or fictional character. One year my son had drawn a Star Wars inspired battle scene on his annual letter, a passion surpassed months later after playing on his first baseball team. A troublesome friendship my daughter desperately and heartbreakingly wished to save had all been forgotten and replaced by ones much healthier. Simply seeing how much better my son became at expressing himself from the previous year, with more accurate spelling and grammar was affirming, not to mention humorous, for him.

Change and growth requires an ability to relinquish one’s ideas about how life “should” go.

This annual exercise always reminds me of the myriad of ways we can grow over time, imperceptible until we step back and take inventory, but no less important than the shiny, sparkly accomplishments for which one can congratulate with a Hallmark Card. And we can continue to change, learn, and grow at any age. Just ask Phil, my ninety-six year old friend who recently joined a gym and hired a trainer to learn a few new moves. The prerequisite to growth, however, is a willingness to be open and willing to change or even just bend a little regarding one’s outlook. Change and growth requires an ability to relinquish one’s ideas about how life “should” go.

Celebrating what may seem like small accomplishments to many of us is how parents of children with serious mental illness (SMI) or disabilities learn to look at the course of a year. These parents learn very early that expecting offspring to adopt a parent’s dreams is never healthy and that setting realistic expectations is the best path to experiencing success. One parent tells her son who is diagnosed with schizophrenia, “Look how far you’ve come in three months, six months, a year!” He once wandered the streets and believed his girlfriend was the Messiah but now he chooses trusted family members to advocate for him and more recently worked a part-time delivery job. A young woman who once had severe depression and spent most of a year on her parent’s couch returned to school and works full-time helping others. A man who spent many years in and out of treatment facilities or living homeless, admits he has mental illness and complies with a bi-weekly shot of his meds.

The act of acknowledging one’s illness and staying on meds, or holding down a part-time job may seem like ridiculously small steps—even dangerously low expectations compared to graduating from high school or college, but not when you consider that living with SMI while symptoms are raging or in early stages of recovery is like the difference between running five miles versus running five miles through knee-deep molasses and barbells strapped to your thighs. Either way, the runner needs to be congratulated.

This time last year, I’d set a goal to bring to completion the first phase of the Behind The Wall project my sister, Elin Abercrombie, and I began. We’ve almost hit our goal. Admittedly, I was beginning to feel a little sorry for myself that I’d not accomplished what I’d set out to do in the timeframe we’d planned. But then I thought about all the intangibles I’d gained over the year through the work that we did complete. It’s an embarrassment of riches, really.

Elin and I have become acquainted with and inspired by some of the most heroic parents imaginable. From these quiet heroes we learned how to be better parents and humans. We heard stories of indefatigable patience and unbelievable strength. Parents we interviewed were once forced to explore the emotional limits of their souls and returned to tell us about it. I learned to hear these stories, and the experience of doing so changed my outlook on parenting, humanity, and life. All this came from a simple act of listening and hearing, a skill I only recently developed, and while there’s more work to do on our project, it has had remarkable personal impact. My sister and I have also developed new friendships, a community, and now understand deeply that no one should have to feel alone.

As the year winds down and we contemplate our ritual, the goal setting and annual review, I will be thinking about the big and little ways each of us has grown. Sometimes, it’s the little things that are most profound.

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As always, we welcome your comments.