Suffering from mental illness is devastating. Watching helplessly as your children suffer—without being able to get them immediate help—is its own exquisite pain. Last week, I talked to a local Jewish mom fighting that battle with her young kids. She asked to remain anonymous for privacy. Below is her personal story.
“My children have had serious psychiatric mental illness, which runs in our family on both sides, that started even before the pandemic. Once the pandemic came, it really tanked for a variety of reasons in a variety of ways. Cumulatively, I think we’re now going into 18 hospitalizations as a family over the last two, three years. We have a lot of experience. It’s one of these things that I’m really an expert in—an expert in a topic that I never wanted to know anything about, even though I have a degree in social work.
“We have had some support from the Jewish community, from individuals in various communities that we’re a part of—but, collectively, it’s been a different picture. Everything is designed to say: ‘Well, maybe it’s not that bad; maybe we need to see [kids] do a little worse first.’”
The bleak holding patterns in emergency rooms
“It’s atrocious, the waiting lists. We’ll be in a serious, dire situation, but then have to wait six to eight months for services to begin. Meanwhile, a kid could be really spiraling down. The way it is right now, there are different levels of hospitalizations. If your child needs real inpatient-level care, where they’re being tracked by doctors and they’re going to put them on medication or change medications, you need to go through an emergency room. You will end up boarding there for anywhere from a few days to a week; that’s speedy. I’ve heard of people waiting three, four, six weeks—just in the emergency room.
“You’re sitting there all day, every day, with no treatment, with people just kind of checking in once a day, but they’re not doing anything to help or to change the situation. It’s a holding zone. If you’re a parent who has a job, it’s really tricky, because you have no idea how long you’re going to be there. Some hospitals don’t let you have a computer or your cell phone in the room. You sit and wait until a bed opens up at whatever location they might end up in. A child could be there for 10 days, on the short side, to maybe two months or more.
“It’s hell, boarding in a hospital. Children are placed on adult wards in a bay with just curtains in between other patients hearing in detail scary situations about other people’s suicide attempts or detox. There’s a real variety in how civilized these places are. In some ERs, because you’re there for a mental health issue, you’re treated like a criminal: There’s a huge stigma, even within the hospital itself. Kids aren’t allowed outside their room. Often, there’s no natural light coming in. They’ve got a TV and maybe some little activities or coloring books—for weeks.”
The cost of care
“If you’re not fortunate enough to be able to drop tens of thousands of dollars on your kid’s treatments and you need insurance to cover it, that’s going to really limit your options. And that’s going to mean that you don’t necessarily have providers who are really dedicated to your kids. This isn’t to say that people who take insurance aren’t good at their jobs, but agencies are overworked. Our prescriber right now is available four hours a week. He works on Tuesday afternoons. If you have a crisis on Wednesday morning, you’re out of luck until the next Tuesday afternoon. They don’t even have an emergency on-call line.
“We’ve been on waiting lists for literally months to get in-home behavioral services or in-home therapy, with kids getting worse the whole time. We had one provider close out on us because my child was in the hospital. He said, ‘Well, if we can’t see him, we can’t keep your case open.’ So the kid who needs the most care is in a hospital, and he actually can’t get care because he’s in the hospital.”
The need for community support
“I think there’s a huge educational gap in what the experience is for families going through this and having that be something we talk about as a community. That’s part of what prompted me to be interested in speaking with you: We talk so openly about kids, God forbid, who have cancer or diabetes. But this is a hush-hush, secretive thing where people feel like they’re literally the only ones who are going through it.
“In the Jewish community, I see a lot of what I would call ‘mental health awareness lite’—‘We should talk about anxiety and the pressure that kids face.’ There’s a much deeper, really serious level for kids who are having daily panic attacks and hurting themselves. It’s scary. I think a lot of times in the Jewish community, fear overrides the human factor: This is a member of our community who is struggling.
“We’ve seen that in a real way with Jewish camps and Jewish day schools and synagogues, where it feels like, if your kid has a ‘little anxiety,’ that’s cool. It’s a real challenge. I think there’s a real opportunity for communication and support networks. What camp can my kid go to where they will be accepted? What can we actually do as a community to welcome and honor the experiences of these members?”
Where to find fellowship
“There’s an organization called Refa’enu, with two different support groups: One is for people with mood disorders and the other is for caregivers or family members of people with mood disorders. I’m in therapy myself. These days, there’s not a whole lot that I’m doing to take care of myself in any kind of proactive way. It’s pretty impossible to know what to expect and to make plans, and that can leave things just really uncertain. There’s also a “Mental Health in the Jewish Community” Facebook group. I’d like to invite people to join.”
What can we do?
“I think there needs to be a change on all levels to make the situation better. More people need to reach out to each other so that it can become more comfortable to hear the experience, to share the experience. I hate that it’s on the shoulders of the people who are most vulnerable to make change. I think there really needs to be a serious, top-down effort to say: ‘This is a crisis right now that our larger community is going through and it’s not getting better anytime soon’—and to put some dollars behind changing that in a much deeper way.
“I think there’s a lot of potential to do a large-scale study, for example, or other mapping to determine what supports people are accessing, what gaps might exist and then to look at the strengths of the community to figure out where to fill in. One hunch I have is that parents could be trained to understand resources and direct people to them, and that a solid network could be built up to make a difference in a lot of different ways. I hope my experience can help mobilize something.”