The first time you take your child to the ER for a psychotic break, you’re a wreck. A living wreck. They ask you tons of questions. They ask him tons of questions. You can’t think. You see their faces, the grief and pity and apology mixed up into an almost unmanageable expression. Almost automatically, you answer their questions about his history: the meltdowns, the violence, the diagnosis, the medications, the daily life. Who else is at home? What’s the family history?
“There just aren’t enough psychiatric beds in North Carolina.”
You spend ten days in and out of that hospital, by his side, as he endures what you never wish to happen to anyone let alone your child: restraints, both chemical and physical, nurses who long ago forgot how to see children as children, the erosion of trust in a system that’s supposed to be there to help them. One nurse tells you that it’s all about boundaries, and clearly you’re doing a shit job as a parent.
You argue back when they assure you the haldol had nothing to do with the seizing you just saw, and insist that no, it wasn’t a panic attack. You’ve seen those. You’ve had those. That was a medical reaction. You still remember that look in his eyes, so helpless, as his body froze and the specks of sweat gathered on his cheeks. You rub his back and be there, physically as much as you can. But the minute you walk out to go home in the dark, the psychiatrist calls. Because of course.
When they finally find him a bed, it’s every inch a nightmare. The facility is like a jail. There are cockroaches. They take away everything he has, and you don’t get a proper goodbye. When he stops making sense on the phone a few days later, you decide it’s time to get him out. When you get him back — throwing up and sleeping and barely coherent — he’s got toxic levels of depakote in his system because they just sedated him and didn’t help him. You remember that discharge took five minutes and just confirmed his diagnosis. You get news coverage, you get interviewed; people are horrified.
But life returns to a simulacrum of normal. Normal as you know it.
The second time you take him to the ER, it’s because he took a knife out of the drawer and threatened to cut his arm. You don’t remember what happened. You don’t recall why he got upset. The social worker tells you that since he didn’t cut his skin, well… You push because once he’s started down this road, what’s next? How bad does it have to get? But after six days of screaming and meltdowns and misery, subjected to the sunless, rubber-padded walls of their behavioral emergency department rooms, you take him home and try again.
“There just aren’t enough psychiatric beds in North Carolina for kids like him.”
The third and fourth hospitalizations are a blur. Of course, there are no beds. But you know everyone now. The nurses know your son. The process is smoother now, in no small way because you really made a stink about the treatment last time. You know he was not being safe. But he wasn’t being unsafe enough to qualify for a medical emergency.
You remember they meet you and say, look, we’re not going to find him a bed for a while. You go home and hide the knives. You know that’s not enough. You work on medicine with the psychiatrist. You work at home to make a peaceful house. You try and use the resources that are out there, but you don’t have Medicaid, and your state didn’t expand Medicaid, and they all but ignore you. You’re on every waiting list known to man. But every day is a potential nightmare. It doesn’t matter that he went to the wilderness program, or the part-time residential program — for every problem you passed, it seems like a new one has taken its place.
When the pandemic comes, you would have taken him in at least three times to the ER, but you somehow managed to quell him. It’s not good for him, this isolation. And the fear that comes with it, it’s just a catalyst. Every day you walk on eggshells, you play the line between giving him what he wants and keeping everyone safe. Your floor is littered with broken glass, no matter how hard you clean it up after he smashes the plates. You walk across the bathroom, trailing red blood before you realize you’ve cut yourself again.
The fifth time he’s hospitalized it’s because… it’s because of so many things. He’s not safe. He’s not stable. He’s a mess. He’s crying. He’s abusive. He’s cut his hands. He’s threatening so much worse. And he’s so much bigger than you, now. You’re in an abusive relationship with his mental illness.
But you can’t help but see him, so small and perfect, in your arms, fourteen years ago. Those lashes, and that nose, and the perfect little fingers. When you kiss his forehead at night, you can’t help but know the contour in only the way a parent can. And when your husband drives him to the ER, at last, they say because of COVID only one adult can visit per stay. So you don’t see him. And don’t see him. And don’t see him.
This time it feels different. Most days he’s okay. You’re veterans at this, now. But you shouldn’t have to be. No one should. You hear horror stories from the parents you meet on the battlefield. You’re all so tired.
But there’s still not enough psychiatric beds in North Carolina. He didn’t hurt anyone but himself, but it doesn’t matter. Other kids go “upstairs” to the adolescent wing. They’re admitted. He isn’t. He’s complex. He’s big for his age. He’s whatever they need him to be to prevent him from getting are.
The social worker calls four days in and asks if you’ve “seen or talked to him” since you dropped him off. You want to rip the woman’s hair out over the phone. It shouldn’t make you so mad. Usually, you’re with him. You’ve taken so much vacation time just to be with him. But now you can’t be. And she should know that. When, with clenched teeth, you tell her that he’s going to age out of the system soon, she tells you there are good group homes for adults.
He deserves an independent life. He deserves more than a group home.
He waits. You wait. He calls, crying. You tell him he just needs to stick it out a little longer. He wants to be there this time, though. He doesn’t call begging to come home. “I want help,” he says. “I keep telling them I want help.”
But there aren’t any beds.
You’ve tried everything. You’ve called everyone. No one wants to help. No one wants this complex puzzle of a human being. No one wants to be responsible. You have given up hope that these organizations that promise help can offer you anything. You know what would work for him, but you just can’t afford it. You’ve already emptied the coffers more times than you can count…
But it isn’t about money. You know that. It’s about caring. About health care. About mental health care. And our culture, our society, has made that message loud and clear: they don’t care.
You fill out a form, for the umpteenth time, and it asks you, “What is preventing you from being his full-time caregiver?”
You stare at the form on your computer. You’ve told this story so many times, but breaking it down to the clinical parts almost feels like a lie. This is not your child. This is not the brilliant, talkative, thoughtful boy who loves animals and hikes when his mind isn’t breaking him down.
And you know this isn’t a story with a beginning, a middle, and an end. It’s a story thousands of families in your country, in your state, in your area, are living moment to moment. And there isn’t an answer.
So you wait. And you fill the spaces between with a little hope. And you run out of hope, you fill it with love.