Portrait of families in turmoil

Portrait of families in turmoil

What it’s like to have a child with a mood disorder

May is Mental Health Awareness month. We offer this piece, with parents’ voices, to mark the month, and as a public service.

Some of the most courageous and unrelenting people I know are parents of children with mood disorders. Whether the child is 5 or 35, the level of perseverance that I have seen exhibited by these parents is astounding. They are loving, compassionate, and dedicated to finding the best care and support for their loved ones, as they navigate family, social situations, societal norms, and a mental health system that is, if not broken, then at least significantly cracked.

Mood disorders—that is, depression and bipolar disorder—have been slowly emerging from the shadows of both the Jewish community and general public, as more accurate information is shared and individuals come out about their own personal struggles. Yet, still, the majority of people with mood disorders in their families do not feel comfortable divulging their experiences publicly, in large part due to stigma that might affect how they are viewed and treated by others. Certainly, in the Jewish world, where it’s a tighter-knit, more insular community than in the world at large, news travels fast.

If people know that there is history of depression in my family, will it be more difficult for me to find my daughter a shidduch? Will it be harder to get my son into camp? Will I be able to make my kids playdates on Shabbos? Conversely, if my son or daughter falls into a serious depression, will the community rise to the occasion? Will they offer to watch my other kids while we’re in the hospital with our sick child? Will they pick up groceries if I can’t go out? Will there be a meal train? There’s a meal train for every other physical ailment. Is that what it takes for someone to bring me a quiche? Have it be a broken arm instead of a diseased brain?

It’s a Catch 22, really — wanting to promote understanding of real-life experiences so that there is less stigma, but being wary of promoting this understanding precisely because of said stigma. The desire for mental illness to be treated like other illnesses, but the hesitation to divulge personal information because of how it might be negatively perceived by others.

As a mental health advocate and director of Refa’enu, a nonprofit that offers mood disorder awareness and support in the Jewish community, I’ve had the opportunity to talk with people both in and out of our two weekly peer support groups — one for people with mood disorders and another for their families — and catch a glimpse of the struggles and triumphs that come with having a loved one with mental illness. What is it like to talk with someone who is depressed or manic? What kind of help is out there? What are barriers to treatment? What can we be doing better, both as individuals and as a society?

I had planned to paraphrase their words, but in light of the information I gathered — the raw, eye-opening, downright honest depiction of what it’s really like to have a child with depression or bipolar disorder — I decided that sharing these experiences from each person’s point of view, in the form of vignettes, would paint a vivid portrait of what such a life can be like. In so doing, it is my hope that others, whether they are part of that world or not, might identify and learn from these experiences.

Here they are.

The Chronic Uncertainty

There’s a chronic uncertainty of living with someone who has bipolar disorder. Who will she be today? Happy? TOO happy? Anxious? Irritable? Sad? How sad? Like, crisis sad? Go-to-the-ER sad? 

She’s coming downstairs. What should I do with my face? Should I greet her enthusiastically? Should I just stay quiet? Does she need attention or does she need to be left alone?

She asked me to make her favorite dinner. I was planning something else. Should I indulge her? Does she need extra comfort right now? Will she spiral if I say no to her request? What’s her mood been like today? 

I’m in a work meeting and she’s calling me. Obviously, I interrupt the meeting to answer the phone. I hear the tears immediately. “Could you come pick me up? I can’t stay in school today.” It’s an important meeting. Not as important as my daughter, but still. She hears my hesitation and her breathing accelerates. “Really, mom. It’s bad. I’m panicky and nauseous and I just can’t be here right now. Please?”

I’m in a work meeting and she’s calling me. Obviously, I interrupt the meeting to answer the phone. “Funniest thing! Ohmigod I just have to tell you. Ha! You’re going to love this one. I was in class, well, I was in class and also on my phone and I saw a meme that is so ME! You have to see it. Hang on I’m sending it to you right now. Take a look—right? Isn’t it exactly me?? Mom? Are you there? Laugh! It’s funny! Ok I just left class to call you I should probably go back. But hey later could we go do something? I think I want to start knitting. Could we go to Michael’s and get supplies? Mom? Ok whatever I’ll talk to you at home bye love you.”

I sometimes become aware of a tightness in my chest. And I realize I’ve been holding my breath. Literally. Not just when things are bad, but chronically. It’s just one of the physical manifestations of never knowing what’s about to happen or how my reaction will help or exacerbate the situation. She’s my kid and she’s precious. I love her and she is beautiful, amazing, smart, kind—and suffering. How I react really matters to both of us. So I can’t relax.

Navigating Treatment

When you have a child with a mental illness, there is nothing linear about it. There is no clear trajectory toward improvement, no timeline associated with improvement, and no clear answers about which treatments will or won’t work.

Insurance coverage for mental illness is abysmal, and yet, for two parents who work full-time in the Jewish community and who have two kids with mental illness, paying out-of-pocket is not even a remote possibility. While our son was violent and aggressive in our home throughout covid, we waited on a waiting list for eight months until in-home behavioral services were available. Then we waited another six months for an in-home family therapist. After meeting with her twice, our son had to go back into the hospital for the sixth time in 18 months. We were just informed that if a child is in the hospital for four weeks, their services will be terminated. So, the child who has the most severe needs will be left with nothing when he comes home from the hospital, only to be put on another waiting list for God knows how long. 

In order to hospitalize your child in an inpatient program (the highest level of care), you first need to “board” in the emergency room until a bed becomes available. Our first time doing this lasted 12 days. Our son, who has ADHD, was forced to stay in the same small room for 12 days, with a TV in the room and access to little else besides coloring, all in the name of “safety.” He passed the time watching videos of 9/11. This was in a children’s hospital.

It is not possible to just “do” whatever intervention might be on someone’s mind. Yes, a therapeutic school might be great. Same with wilderness therapy. Or residential treatment. Or going to see some great psychiatrist you know about. Between waiting lists, fees, approvals from schools, and so on, there are often mountains of hurdles to get over before accessing any of them.

This world is all encompassing. It is a full-time job, on top of the full-time paid jobs that we likely have. The world becomes a whole lot smaller when you parent a child with mental illness. Schools don’t understand and will expel a child because of their troubles. Camps won’t enroll these kids if they really know what’s going on with them. Co-workers and friends get scared off and stop asking how you’re doing. It can feel impossible to show up at any Jewish communal event knowing that your kid will probably have a meltdown when they show up. 

You will be joining a club you never asked to participate in. Despite all of this, though, there are others out there (many more than anyone has any idea about) who are traveling the same path, and who will be fierce partners and advocates to walk the path with you. They get it and will respect you because of — not in spite of—what you’re dealing with.

Outraged at the System

When this all started, I felt scared, bewildered, and furious. How could it be that I could see my choice of cardiologist, neurologist, gastroenterologist, or any other “ologist” and have it covered by our health insurance (for which I pay thousands in ever-rising premiums, by the way), but I’d have to pay out-of-pocket for my daughter to see a decent psychologist or therapist? Aren’t we past the days when mental illness wasn’t considered a real health problem? What the heck? 

The strength of my outrage could have powered a small village. I couldn’t believe it. We had eked out a measure of financial security and this illness was going to blow it to smithereens. I have an advanced education, and sorting through the treatment options and paperwork was utterly overwhelming. How could we take care of a sick child and also figure all of this out? And I wasn’t just outraged for myself. I had a measure of financial security and a background and network that made me uncommonly able to cope. And even if it was challenging, I could pay my daughter’s therapy bills and understand the explanations of providers. What about people with less? How can people be expected to do this? What’s wrong with our society?

My fury kept me going for a while. I felt righteously indignant, and that gave me power. I was on a rampage. I was going to write an article. I wrote to my congressperson. I was relentless with our insurance company. I became an advocate. I never went anywhere without my soapbox. 

Over time, the therapists’ bills expanded to include therapy for other members of the family who were struggling under the added strain. These were augmented by lawyers’ fees and education consultant fees as we tried to find and pay for an appropriate therapeutic program for my daughter. The number of bills were only eclipsed by the number of appointments. Social worker for therapy. Psychiatrist for meds. Family therapy. Gastroenterologist and allergist appointments because of chronic stomach pain and digestive issues (probably just anxiety). Attorney meetings. IEP meetings. Intake meetings. Evaluation meetings. Discharge meetings. 

I’ve burned through the fuel of my outrage. My soapbox has gotten heavier and heavier to carry around. Now you can usually find me sitting on it, closing my eyes. I’m tired. I stopped writing letters and almost never ask to speak to a manager at my insurance company. After a full day’s work, preparing dinner, carpool, dishes, laundry, homework, and “How was your day, honey?”, I’m too tired to advocate. I cuddle with my family and watch brainless reality TV. I scroll mindlessly on Twitter. I look at houses in exotic locations that I will never live in, and explore cool gadgets on Amazon that I will never buy. 

I mostly feel numb.

Emotional Denial

“Your daughter most likely has bipolar disorder.”

The words of the emergency doctor fell on my ears, but I felt numb as if I had been transported into a surreal reality. Just a few days before, we had dropped our daughter off at her dream college to begin freshman year. I honestly had never ever heard of the medical diagnosis and my husband and I thought that the psychotic episode was triggered by the use of weed. After a year of being on medication, my daughter decided that she wanted to get off the drugs under medical supervision and all was well for almost a year. Lo and behold, she had a second episode and it became clear that she was indeed bipolar.

What I wish I had known then was how to avoid the emotional denial we were in. I wish that we had been more open and accepting of her diagnosis. My advice to parents dealing with a new situation is to get help in dealing with your own emotional storm, become educated in all aspects of the disorder, and seek like-minded parents who can normalize the myriad of emotions you are dealing with.

I wish that mental health issues were socially acceptable and less stigmatized, as that would also help normalize the reality and help those of us going through it. I am often surprised to hear parents tell me that no one in their extended families knows of the struggles and the anguish that we go through as caregivers. On the flip side, I, too, protect my child as I believe it is not my story to tell — I try to respect her right to privacy. This silent secret is both the cause and effect of social isolation.

No Owner’s Manual

A child does not come with an owner’s manual. As a parent, you do the best you can to keep them safe, and you want them to be happy. Then one day you start noticing changes in mood and behaviors. Is it adolescence or something else? One day your child asks you to help them with an assignment. They read the assignment to you and you get a pit in your stomach hearing their words. Jumping off a building. Hearing voices. Is this their own thinking, or is it the book they were summarizing? Taking a deep breath, you start to ask these questions. Your child is sobbing. 

As a mother, you think, “I should have known this.” 

As a mental health professional, you think, “I should have seen this earlier.” 

I remember putting my helper hat on. The many calls you make to insurance companies, and then to the individual providers, often hearing, “Sorry we don’t take your insurance, we are filled, try this person…” and getting nowhere.

As a parent, no one prepares you for the mental health challenges. The sadness, the mood changes, the side effects from the medications, the weight gain, the slowed reflexes, and sometimes the obsessions. At times, when my child experienced suicidal thoughts or psychosis, it was scary for them and terrifying for my family. People would ask, “What is wrong with him?” with a condescending tone in their voice, rather than asking how they can help. 

There remains a stigma, that people with mental health problems are violent and crazy. I want others to know that my son should not be defined by his diagnosis. He is a person. He also has dreams and wants to be married one day. Is that too much to ask that someone will find him suitable or that he can be successful in his own way?

Lessons to be learned: Do not give up on your child. Learn to educate others on diagnosis. Break the stigma. Find support for your child—no matter your child’s age. Find support for yourself. It’s scary, but you do not have to be alone. And neither do they.

What We Need from Society

People with mental illness compose a large percentage of our society and can lead productive lives when their illness is under control. Here are a few things that can help:

• Our society needs to devote more resources to mental health care to make services more affordable and easier to access. The system of psychiatric hospitals needs to be improved.

• Health insurance policies should increase reimbursements to providers of mental health services. Also, health insurance companies should not have so much control over the length of stay in psychiatric hospitals.

• More education is needed to reduce stigma about mental illness, as it is hard for people to be empathetic and compassionate if they are uneducated about the causes and symptoms of mental illness (for example, the misconception that people with mental illness tend to be violent).

What We Need from You

Please don’t tell me it’ll be okay, because it might not. In fact, it probably won’t. At the moment okay seems like a wild fantasy. 

Please don’t tell me how sorry you are for what we’re all going through, or sigh meaningfully with your hand over your heart. I know you mean well, but pity is like sand in my eye. 

For the love of God, please don’t tell me about the gluten-free diet or the new mezuzah or the guided meditation that cured your cousin Sally.

Invite me for coffee. Let me talk about the latest episode of “Ted Lasso.” Tell me about the great book you’re reading. If I have to cancel coffee five minutes before we’re supposed to meet, just say okay. Then invite me for coffee again. If I want to talk about my daughter’s health, you’ll have created a space for me to do that. If I don’t, you’ll have created a space (too, too rare and precious) where her health isn’t the only topic.

Practical Advice for Parents

• If you sense something is wrong, it probably is.

• Monitor the situation.

• Find an excellent doctor—this is where the “saving your money for a rainy day” comes in.

• Ditto for therapist.

• Trust your gut when choosing a doctor and therapist, and don’t be afraid to switch.

• Don’t be afraid to reach out to community members. This is extremely difficult but will absolutely change your mindset about the disease. It may change how you look at your entire life.

• Research the internet and library for resources ( the National Alliance on Mental Illness; BP magazine, for people with bipolar disorder; medical studies; information on what medications work best). One or several may hold the key to help.

• Remember that this is a disease that your child was born with. It has nothing to do with your parenting skills, but it will change your outlook on parenting and life forever.

• Keep the immediate family informed.

• The following may be difficult to obtain in many situations, so use your powers of persuasion when the person is somewhat healthy to:
Get a power of attorney.
Have your child—if over 18—sign a health directive giving you/family members permission to override their decisions when in a manic/depressive episode.
Have your child—if over 18—sign a HIPAA release.

• Get support for yourself — therapist, support group. It will definitely lighten the load.

• Take care of your own mental health every single day.

• Don’t be embarrassed. You will become a stronger person and a better parent.

• This illness is not curable yet, but it is treatable. There is hope in every day.

• Praise your child for accomplishments and praise yourself at the same time.

Labor of Love

As a parent to two sons (one in college; one recently graduated) who have bipolar 1 and bipolar 2, it’s what I call a “labor of love.” My relationship with my boys is often shaped by their unstable moods. 

For example, if my younger son is depressed, he’s clingy — I’m his best friend and he shuts out the world and wants to be only with me, where he feels safe. I enjoy our special bond but realize a “normal” 22-year-old shouldn’t want to hang with his mom so much. My older son, when he’s on the low/depressive side of his illness, wants nothing to do with me and keeps his distance. My greatest fear is that he will hurt himself; I often feel helpless, especially when he’s off his meds. 

The flip side is also a mental rollercoaster for me as a parent. When my older son is hypomanic, he adores me. He posts tributes to me on social media, buys me expensive gifts he can ill (no pun intended) afford, and calls and sees me often. A part of me loves the mother/son bond, as we have made some great memories, albeit when he’s not in good mental health. However, when my younger son is hypomanic, he’s (I stopped myself from saying “awful”) really difficult to be around. He blows through money, makes poor and sometimes dangerous choices, and also stops taking his meds. 

Of course, having bipolar sons isn’t about their relationship with me — it’s being on the sidelines while I watch them either thrive when they’re stable, descend into depression, or ascend into hypomania or mania. Sometimes, I just never know when the rug will get pulled out from under me and the calm will morph into (literal) madness. 

Is it hard? Beyond. I am constantly assessing my sons — wondering if they are jumpy, sad, manic, suicidal, etc. — and often forget what their baseline state even looks like. But through it all, they are my sons and I love them every single minute — even when it’s really hard at times to like them when they are unwell. I know it’s not their fault. I can’t blame them for having a chemical imbalance in their brains that renders their moods as unpredictable as the weather forecast. 

I worry a LOT about what their future will look like. Marriage, career, children…how being bipolar will impact their ability to lead a full and productive life. For now, I go week to week. Is my one son going to return to college next semester? Is my other son going to get a job?

In between the incessant worry is so much love. I am truly blessed to have my boys. I thank God for them every single day. I also pray for their health — with an emphasis on their mental health. How often people forget that praying for health also means mental health and well-being.

A Journey of Firsts

Since my daughter began struggling with her mental health, we’ve been on a journey of firsts:

First time she called me from school, crying and desperate during a panic attack. First time refusing to get out of bed for a meal. First appointment with a therapist. First therapist my daughter rejected. First therapist that rejected my daughter. First time using psychopharmacology. First disturbing side effects. First time I discovered her self-harming behavior. First time I had to buy a lockbox for sharps and meds. First trip to the ER and first in-patient admission. First sleepless night on suicide watch. First residential program, partial-hospitalization program, intensive outpatient program. First time we discussed taking a loan to support mental health services. First time saying “bipolar disorder” out loud. The first time someone told me I probably shouldn’t discuss it in public because “not everyone in our community understands.” First time I brought up my daughter’s diagnosis at a Shabbat table. First time realizing that all of these firsts wouldn’t be “onlies,” but would become a part of the fabric of our lives.

A lot of the firsts have been hard. But there are other moments. The first time I brought up my daughter’s diagnosis at a Shabbat table and was greeted with curiosity and affirmation. The first time I was talking about my daughter and someone said, “My daughter, too,” because mental illness is much more prevalent in our community than is readily visible. The first time her Jewish day school administration said, “Whatever you need.” These firsts also weren’t “onlies.”

Hopefully, you have uncovered the truths in these vignettes that some people live with every single day. The incessant need to keep on their toes, to stay on high alert, to anticipate anything and everything that they might encounter. The constant effort to find the best mental health care for their children. The importance of taking care not only of their loved ones, but also of themselves.

These are your neighbors, your colleagues, maybe even your friends, but you don’t know it. You say hello when you see them at shul. You wave to them on the carpool line. You say goodbye as you hang up the phone. Or maybe it’s you. Maybe it’s you looking at yourself in the mirror at the end of a long, challenging day, wondering what comes next. You may not know what comes next. And even so, know this: 

You are not alone.

Dena Croog is a writer and editor in Teaneck and the founder of Refa’enu, a nonprofit organization dedicated to mood disorder awareness and support. Learn about the organization and its support groups at www.refaenu.org, or email dena@refaenu.org with questions or comments.

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