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!
Recently a friend introduced me to his friend by saying to me, “You have to tell him what you’re writing.” People don’t always want to talk about what I’m writing. Because talking about mental illness at parties can kill the mood. Makes a person run for more coleslaw. And if mental illness is not in your family, it doesn’t affect you, right?
Mental illness really does affect a whole family. The man I met, let’s call him Justin, has a son who lives with serious and sometimes debilitating anxiety. As Justin and I talked, his friend, who was sitting beside him, nodded his head and seemed to know the whole story. He’s a good friend. Justin went on to describe his son’s challenges and that one of the most heartbreaking aspects of the illness is the way his son’s siblings, one of whom had been quite close, have distanced themselves from their brother. Justin’s son was getting healthier and learning to better manage the illness, but his siblings blamed him for his behaviors and thought he could control himself. They’d say he was “lazy” because he wasn’t always as functional as they thought he should be. They are angry with him and stay away from him. Imagine how Justin and his son must feel; more worrisome is that the one thing a person learning to manage mental illness really needs is support from loved ones.
But sadly, those who have a loved one living with mental illness—and who share living quarters—know that sometimes distance is required for their own survival.
It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger.
That’s what mental illness does to families. It’s disruptive. It changes relationship dynamics. When the illness becomes symptomatic, a sibling who may have once shared a close relationship with the ill person often grieves along with the parent, at the (temporary or permanent) loss of their loved one’s talents and abilities. There is also anger because their sibling may have a thought disorder and cannot control behaviors. It’s not fun hanging out with someone who starts talking nonsensically or is easily and unpredictably triggered to act out with extreme anger. Some family members also feel betrayal because the ill person in the house sucks all the attention and exhausts everyone.
This churning mix of chaos, grief, and anger swirling in Justin’s house is similar to what many families of returning veterans experience. In 2002/2003 an estimated 1.4 million male and female veterans were identified as living with serious mental illness. Approximately 365,000 of these individuals had co-occurring substance abuse disorders. These numbers have undoubtedly grown significantly in the ten war-years since the collection of this data. That’s a lot of families struggling to learn how to cope with grief and chaos while also supporting the recovery of their veteran-loved one.
Only many years after our Vietnam veterans returned were they given their due respect and many still don’t feel fully appreciated. But since that belated and collective mea culpa, we’ve all talked a lot about supporting our brave men and women who serve our country. We are only recently talking honestly about the serious brain injuries, mental illness, and substance use that our veterans come home burdened with as collateral damage from their service. And yet, it’s these injuries and illnesses that likely contribute to the appallingly high homeless rate amongst veterans (33% of all homeless males are veterans).
That there are more than 1.4 million military families in our society grieving, coping, and supporting a family member who lives with mental illness should rightly elevate the importance and awareness of mental health for us all. Not just those who have a loved one with mental illness, and not just military families, but all of us. Because with that many affected families, it becomes society’s issue. With numbers this high, failing to address mental health with genuine intent is a repeat of the dishonor our service men and women experienced returning from Vietnam. They performed their duties as asked and we didn’t give them their due.
It may not be a fun topic for the next neighborhood barbeque, but it’s certainly a subject to address with congressional leaders and in meaningful political discourse. On this Memorial Day, we can put all that talk about honor into real action and support military families by pushing for better mental health care and supporting the families who support the returning veteran.
So yeah, it does affect you. And me. And the more than 1.4 million families across the country who are trying to make sense of it all.
 National Alliance on Mental Illness (NAMI) provides statistics, information, and resources, and support for those seeking help in managing one’s own mental illness or that of a loved one.
 Source: http://www.veteransinc.org/about-us/statistics
Your comments are welcome:
A few days ago, I made a new friend who is a Vietnam veteran. He entered the grocery store with his service dog. Standing under fluorescent lights between a kiosk of wine bottles and neatly packaged red meat, we struck up a conversation—not about the weather, or the how well-behaved his dog is, though that did come up, but about mental illness. It does seem odd that a conversation with a stranger would go so personal, but this phenomenon has been happening to me with increasing frequency. And I feel honored.
For forty years, my friend, who I will call Mike to protect his privacy, lived with debilitating post-traumatic stress syndrome (PTSD). He’d had a few marriages that didn’t work out so well because his former spouses couldn’t understand what he was going through. He acknowledges, how could he expect another to ever really understand his nightmares? How can you translate the experience of witnessing a buddy, caring for another wounded buddy, fall over in an instant after a shot to the head?
Mike’s mental illness has impacted his ability to work and he has lived off disability and military pension. Life has been challenging. But on that afternoon a few days ago he showed little of the hard road he’s been on. My conversation with him was delightful, insightful, and warm.
What has helped him? When he finally got a diagnosis he was able to get more effective treatment. But like most individuals living with mental illness, it’s not a straight path. His doctor first demanded he quit using substances and then prescribed medications to address his PTSD and other symptoms. He tried several, but none of these worked. As Mike says, treatment for mental illness, “Is not a one-size-fits-all deal.” Mike later trained his own service dog, without whom, he says, he wouldn’t be able to have a conversation with another person in a grocery store. His vigilance and paranoia would be on overdrive. When he said this, I thought, what a shame this outgoing, friendly, kind soul would have been incapable of interacting with others, a person whose positive life force had, on that particular day, brought me hope for humanity.
Mike and I talked so long, and so honestly, that the grocery store workers joked about our reunion and such. On this Veteran’s Day, I will keep the blog relatively short and impart the lesson he had learned and seemed keen to share.
He emphasized how beneficial his dog, a constant companion, and his wife, who is a uniquely nurturing person, are to his recovery.
He told me that treatment for his PTSD was not going to reverse the illness because he’d lived too long without treatment. Treatment now enables him to continue learning coping skills. He emphasized how beneficial his dog, a constant companion, and his wife, who is a uniquely nurturing person, are to his recovery. His dog keeps him safe and in one case, kept him from getting chippy with a police officer out of concern over what would happen to the dog if he were cuffed and thrown into jail. Hey, I say, whatever it takes.
Mike is on the waiting list for a new PTSD program through the VA hospital but keeps getting bumped to make room for troops coming home from the war. “And that’s okay,” he says. “Because these guys have a better chance if they get treatment right away. I’m all for that. We know a lot more now than when I came home.”
And that’s a very good point, Mike. Let’s get the troops treatment as soon as possible to give them the best chance for recovery. That’s one way to honor our troops.
Thank you Mike, for your service.
A Note about the photo: While Ken Costich (shown in the above photograph) is not the man I met, he also lives with PTSD and is part of the US Army’s service dog program. You can read more about it at: http://www.army.mil/article/35297
As always, we welcome your comments: