Parenting an Adult Child With Mental Illness

Chaos sets the standard. In other words, it becomes the norm.

Posted Jul 21, 2020

Parents of an adult child with a severe mental illness face different challenges than parents of a minor. Miriam Feldman has experienced both. Her book, He Came In With It: A Portrait of Motherhood and Madness, is an intimate chronicle of raising her son, Nick, who has schizophrenia, and the parallel journey of parenting her daughters.

In He Came In With It, Miriam also tracks changes in her perspective of motherhood, mental illness and herself. She addresses the fantasies of motherhood and their stark contrast to the confusion and despair that she feels—that many parents feel—when a beloved child has mental illness. This, in part, is seen through the grueling cycle of hope and denial, one that will be familiar to many parents whose child suffers from mental illness. The little-to-no respite. The evolution of acute problems into chronic, long-term ones, but, somehow, with the same urgency. How that chaos eats away, not only at the person with mental illness, but at the parents and other family members, too.  I thought Miriam's story would resonate with many parents who suffer and struggle, often silently (but sometimes not), alongside their child. Miriam is an artist, writer, and mental health activist who serves on the advisory board of non-profit Bring Change 2 Mind and is active in leadership at NAMI Washington.
 

Meredith: Can you share with readers what changed for you (if anything) when your son entered adulthood, first 18, then 21. How did it compare to when he was a minor?

MIRIAM: The biggest roadblock to parenting an adult child with serious mental illness is the HIPAA privacy statute. Most often, the parents are the ones with the pertinent information about their offspring’s condition (symptoms, medication compliance, obstacles to care) and they are shut out of the process. It is important to remember that in the case of schizophrenia, the organ that is afflicted (the brain) is the organ that would allow them to understand and manage treatment.

One of the symptoms of schizophrenia is anosognosia which is lack of insight or awareness of the illness. When Nick turned eighteen, we had a couple of terrible years when he refused treatment and we were helpless. Early intervention is crucial to recovery. The only way to force him into treatment was involuntary hospitalization. The criteria for that is stringent. One must be of imminent danger to themselves or others or be gravely disabled. I would seize every opportunity to try and get him into the hospital, but most of the time they would only keep him for the requisite 72 hours and then release him. 

Photo courtesy of Turner Publishing
Source: Photo courtesy of Turner Publishing

When Nick was a minor, we had more control, but his disease was in the nascent stages and we were scrambling to figure out what was going on. Once we knew it was serious mental illness our hands were tied. We spent a few years helplessly watching his condition deteriorate, and then miraculously at age 21 he decided to sign the HIPAA release. Since then it has been easier in some ways, but as they mature into adulthood you have to reconfigure the paradigm of the parent-child relationship.

I don’t have the option of “letting him live his own life”, which is the transition most parents have to make. I have to calculate the formula for allowing him to be an independent person without opening up a path to calamity or decompensation. It isn’t easy.

Meredith: You write that, after a call to the police during a violent episode your son “managed to convince them that he was fine and agreed to leave.” Ultimately, your daughters give an ultimatum that either they would leave your home, or your son had to go. This must have been heartbreaking as well as overwhelming. That said, I was thinking it perfectly illustrated the struggle within yourself—two sides fighting against each other about what to do. Do you see it this way? If not, how do you see it?

MIRIAM: Yes, I absolutely see it that way. It is an untenable position to be in as a mother, having to choose between your children. I realized with some clarity that our home had to be a safe place for my daughters, who were still young. As much as we all loved Nick, the volatile nature of schizophrenia made it impossible to allow him to live there. I cannot calculate what it cost me to ban my own son from his home, it was excruciating. I had to make a lot of decisions like that. The most painful thing about those decisions is that they were rarely made based on what would be best, but rather what would be least terrible. 

At the time all I knew was that Nick was on fire and I had to put it out. This resulted in my neglecting my other children. It also was the root of a lot of dishonesty. In my misguided attempt to shield his siblings from trauma I found myself covering up a lot. I hid the evidence of violence and damage, I pretended I was fine when I wasn’t. My habit was to lock myself in the bathroom at night and cry with the shower running so no one would hear. It was ridiculous and now that they are all adults, they’ve told me that it only made it worse. They knew what was going on, and my pretending only made them feel like they were going crazy. I have a lot of regret about that.

In hindsight, I should have gotten psychological treatment for them as well. Siblings can become very marginalized in situations of grave medical emergency and that could be mitigated by therapy and extra attention. I was unable to be present the way I should have been. If I could do it over again, I would designate an “aunt”, a friend or relative, for each of them to pick up the slack of my absence. I do want to say here that my daughters are all doing well. They are lovely, compassionate women who have worked (and are still working) through the trauma of those years. They are fierce advocates for their brother and love him dearly. One of the biggest worries for the parent of a person with schizophrenia is what will happen when we are gone. I don’t even think about that I know they will take care of him.

Meredith: I felt sad when I read about your pretending nothing was wrong because, I think there is such collective pressure to act like we are okay and “successful” and “making it.” But for who? And why are we doing this in the service of others? I think it’s a common phenomenon. Can you offer perspective to other parents who might be in that space right now? 

MIRIAM: One of the only benefits of having serious mental illness in the family is that it gets your priorities in order! After a few years of pretending, I realized what a pointless waste of energy that was.  I couldn’t keep up the façade. I had to reshuffle my objectives and prioritize. The things that got tossed onto the trash heap first were pretending, hiding, being ashamed and trying to fix everything. 

The thing I’d like to convey to other parents is that this is a very freeing moment. It really was a gift to clearly see what was important and what was pointless. We have to let go of how we thought it was going to be, who we thought they were going to be.  Remember, they didn’t ask for this either. The real tragedy is for them. If, on top of that, they also have to shoulder our dashed dreams and disappointment it would be crushing. 

Meredith: Chaos seems to set the standard, so to speak—in other words, it can become the norm. What, for you, was the moment or series of moments that changed that, even a little? How did you begin to separate from the dynamic in order to have a relationship, not only with your son but with yourself? 

MIRIAM: I have a very clear memory of when I moved away from the chaos. There was a period, about five years in, when Nick had become stable on his meds, the girls were growing and off to college, and I felt like things had settled down. As the hurricane around me calmed I emerged as a shell of a person. I was completely depleted. I remember thinking, “okay, now if I can just tread water, keep things contained until I die, that will be success.” What a terrible succumbing that would have been. Would my misery help Nick? Would having a zombie mother be good for the girls? I had wrestled with the guilt and responsibility all mothers feel for so long, but [it soon became] crystal clear, this wasn’t my fault. I was allowed to have joy in my life. It wouldn’t hurt anyone, it would make things better. Since that time, I have actively sought the good. It’s not easy, but it is worth it. 

Meredith: You describe your son’s schizophrenia, but you also discuss the drug and alcohol use (that so often accompanies and exacerbates mental illness).  That said, the resolution of one does not mean the resolution of the other. Both share the aspect of affecting the family and the family dynamics. Did you see the roots of these dynamics early on, before the more outward expression of your son’s disease started to show?

MIRIAM: If you were to make the list of red flags for serious mental illness and the list of normal teenage behavior, you’d have virtually the same list! I mean, they are all mercurial, impulsive, irrational. At the time, Nick’s drug experimentation seemed no different than his peers. We dealt with it as though it was normal. As far as I knew at the time, he was only smoking marijuana. We did what we could to forbid it, but honestly, as a child of the sixties, I didn’t think it was that big a deal. Of course, I have learned since that not only is marijuana very detrimental to developing brains, but the pot of today is exponentially stronger than it was in my day.

As his drug use expanded, we started to address that as the problem. We sent him to rehab and to a therapist. We hoped it would be a teaching moment for his siblings. You see, I wasn’t considering the drugs in relation to mental illness because that wasn’t even in the equation then. Now, I see that he was absolutely self-medicating. I can even recall a conversation where he told me her was disturbed by his own thoughts, “the voices in his head.” I told him not to worry about his thoughts, what mattered were his actions. I said we all have weird thoughts, nothing to worry about. He was telling me he was hearing voices and I dismissed it. But how could I have known?

Meredith: You mentioned your son’s anosognosia, which you write is defined as the real or feigned ignorance of the presence of a disease. Since you write a lot about your own denial, (and seem to chastise yourself for it), can you talk about how you began to address this for yourself? Does it ever completely go away?

MIRIAM: My denial back then was founded in a misguided belief that I had to fit in, be exemplary, and that my kid’s problems would reflect badly on me. It sounds terrible to say that outright, but remember, I’m embarrassment-proof. I believe that by owning these less-than-wonderful sentiments I can move past them. And I have. I know, now, that no family is perfect. I know that virtually everyone has some connection to mental illness, they just don’t talk about it. I realize that I appear to chastise myself a lot about my behavior. I included it prominently in the book because I wanted to create a portal for other parents to acknowledge these sort of emotions, which I believe are universal. It is such a relief when you stop pretending.

Does it ever completely go away? I would say that, except for a rare moment in the middle of the night when I’m sure I am to blame on some genetic level, yes, it does. I try my damndest to live in the present, love like crazy, and appreciate what I have been given. 

Miriam Feldman's website: click here. 

References

[Note to readers: This post about the difference between "mental health" and "mental illness" is useful, particularly the first part. It provides a good reference for discerning the difference between the two as well as how they interrelate. Also, there is some discussion at the end of the post about recovery. I'd gently caution to not attach to that. Focus, instead, on what is happening today and how situations can evolve over a lifetime as awareness grows.]