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Parents of Mentally Ill Children Have a Long and Difficult Journey

 

Being the parent of a mentally ill child is painfully tough. Can you ever come to terms with your child's mental illness, the expenses, and facing the stigma?

I’ve long been a fan of the Rudyard Kipling poem, “If.”

If you can keep your head when all about you
are losing theirs and blaming it on you…

I can relate to this verse. I’m sure all parents of mentally ill children can. Often the greatest challenge we face is not going stark raving mad ourselves.
If you can trust yourself when all men doubt you…
If you can wait and not be tired by waiting…
Or being hated, don’t give way to hating…

Being the parent of a bipolar child has not made me popular. My child has been passed over for parties and had his own invitations declined. Other parents who only know my child by the stories they hear from their own kids are quick to label him as a bad seed. And if he’s a bad seed, surely he must come from bad parents.

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim,
If you can meet with Triumph and Disaster
And treat those two impostors just the same…

We all have high hopes for our kids. When your child is diagnosed with a mental illness, it’s hard to come to terms with the impact of the diagnosis on those hopes. Should you continue to worry about paying for college, or just focus on getting him through high school?

If you can …watch the things you gave your life to, broken,
And stoop and build’em up with worn-out tools…

Undoubtedly, the hardest part of parenting any child is the hurt we suffer when they suffer. Our children tend to suffer more, and there are few (if any) rewards to soothe their suffering.

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings,
And never breathe a word about your loss…

I try not to think of all the prescriptions I’ve filled in the past five years. Particularly the ones I refill—at full market price—only to have the psychiatrist a day later agree they are not working and here, try this instead, and no, it’s not available as a generic. And it may not work either. But let’s hope for the best.

If neither foes nor loving friends can hurt you…

People fear what they don’t understand. Many people don’t understand mental illness. Some of them are closer than you think—friends and family members you never expected to do or say hurtful things.

helpingKipling’s words paint a disheartening portrait of the world—not unlike the world we face daily as parents. But at the end, he offers this as inspiration—if you can survive all this adversity,

Yours is the Earth and everything that’s in it

Which perfectly describes those moments when we are proud of our kids…when we feel like we’re doing right by them…when we haven’t lost our temper or cried in front of them…you know, the good days.

I wish all of us more of those.

192 thoughts on “Parents of Mentally Ill Children Have a Long and Difficult Journey”

  1. Thanks for sharing ur expirience let me tell u mine a book can be written about my life i fall and rise three times i was mentally ill when i was 18 just weeks before entering a prestigous university in the country addis ababa university in electrical engineering i joined weeks after dropped out i start medication it was painful it was difficult to accept i couldn’t beleive it was real i stayed home for five years without work or education full of painful moments all friends left me my father and mother are not able to educate me in a private college i come from a poor family i waited until my elder brother graduated and get a good job then i started education and managed to graduate with good GPA it’s not easy to graduate strugling with pain i felt it was a sucess quickly i started work but the work was not situable for me it was stressful i quit then i told my self what is my future if i am not able to work i gave up then i decided to commit suicide just seconds before i prayed to God then i survived again i stayed home for two years i’m an orthodox christian i usually go to church and pray one day God helped me made the impossible possible i got a work which is not stressful and co-workers who understand my situation i ‘m still working

  2. Hi all. Thank you all for sharing your real thoughts and stories. I have a 12 year old with GAD, learning issues, possibly ADHD (finding out today), sensory issues, etc. My 17 year old struggles with depression and anxiety as well. I have been on anxiety meds for about 10 years now as well. I blame myself that the girls got this from me. I am also sad and discouraged that this will continue with my youngest especially for a long time, possibly her lifetime. I too have felt I wish it was all over..exhausted. Both girls are on medication and see therapists. 12 year old is started to “embellish or lie”..had DCF called this weekend saying we hit her (which is a lie). So hard because we love them so much. They get so much love and attention from us. I know a counselor will help me too. It’s just so heavy sometimes. Thank you that I’m not alone. God has a reason for all this.

  3. this is a reply to Anne in the very first comment. I can’t thank you enough for your honesty. You are a titan. Never forget that. I love you and pray for you. My son is 27, in a very bad place right now. We could likely be tomorrow’s Google News, my worst nightmare. He’s been hospitalized 9 times, committed for 30 days 3 times this year. They always send him home after about a week, fully psychotic. It’s up to me to keep him from utter mayhem. My husband flies the coop as a coping mechanism. I’m active in NAMI but even that has no real answers. The system is rigged so that families have no real help, but when the worst happens, we are left accountable. My son never asked for this illness, but there are many times I wish he was simply GONE. I was an older mom, 34 with my son, and I completely reveled in motherhood. Such a happy time for me, and an idyllic childhood for him — extended family, tremendous nurturing, home-cooked meals, etc. That made no difference. Schizophrenia got him. My daughter, only 18 months younger, is A-OK, or neurologically healthy, which has been a great reassurance that I didn’t cause this. But maybe I did! Who knows, maybe I had a viral infection? He was born in February, and winter births have a prevalence of mental illness. Whatever. At this point, ten years into it, I’m losing my own mind. Drinking too much wine, falling apart, isolating… it’s a shameful and lonely path to tread. I’m grateful and humbled by the other posts here, and despite my drinking too much wine, I’m a believer and have hope through the Holy Spirit and the Word of God. Thanks for listening! And God bless all of you out there who feel there’s no answer. Someday we will see why it all happened.

    1. “Feb. births have a prevalance of mental illness”? Really? Where did you get this inaccurate info from? And 34 is not an “older mom”. I had mine at 40 and 42. Just saying.

      1. Look it up on psych central, or just google it. I learned this in NAMI’s Family to Family course. And by “older mother”, I just mean that I wasn’t in my 20s as many women are with their first child. I’m sorry if I offended you, I was just pouring out my woes in one of my worst years with my son’s illness. I regret saying so much and wish everyone on this site the very best. My heart goes out to all of you.

        1. Carol, you shouldn’t regret coming to a place to vent and hopefully get some support and encouragemeny. I am praying for your son and you and your family. Behavioral health is tricky, but with determination, faith and time progress can be made.

  4. I started going to Al-Anon last week and have made a commitment to go every week for at least 6 weeks. I want to have a better life and take care of myself and set clear boundaries with my children. I cannot do that alone. Love to all and thank you for sharing your heart-wrenching but not hopeless stories. There is always hope. We did not cause the problem, we cannot cure it, and we cannot control the outcomes. But we can learn how to take care of ourselves. I believe that, absolutely.

  5. I have a 27 year old son who’s never been properly diagnosed in the 9 years since his first psychotic break at 19. To the best of my knowledge, he has schizoaffective disorder, both a thought disorder (thinks the government is spying on him, thinks our cat is human and can read his mind, etc.) and a mood disorder, ranging from mania which he LOVES to extreme, suicidal depression. He’s addicted to pot and Adderall and has threatened suicide if he doesn’t get Adderall, so my husband and I foolishly allowed him to find a doctor that prescribes it. Actually, he’s on his third doctor who prescribes it, having the ability to appear normal and fool these docs that he has ADHD. We shut down the two previous docs, but now he’s found another. Both my husband and I enable our son to get Adderall because we are desperate for peace, and our son says that Adderall is the only thing that makes him feel “normal” and allows him to interact socially. I relate to so many of the comments here, about wanting your child to have SOME happiness in their lives, when so much of their existence is sheer hell. But after 9 hospitalizations, terribly bizarre and destructive behavior (he’s smashed windows, threw cinderblocks through our car windshield & window, burned himself with cigarettes, does backflips off our air conditioner unit in an effort to “prove” his courage, threatened to kill his dad, disappeared for days at a time, etc.) and after a metric ton of meds, outpatient programs, hospitalizations, therapists, constant supervision, help from extended family, prayer — literally constant prayer — I’m at a loss. I got involved with NAMI early on, and jumped in to volunteer too early on. I became a trained NAMI facilitator, and have helped lead six “Family to Family” classes, have done some public speaking, have been a “Family Presenter” for the Sheriff’s Academy Crisis Intervention Training course, have been on Jail Diversion Committees, a local advocacy committee, have read endless online articles, researched nutritional supplements and tried to use them (he eventually refused even vitamins, and has consistently refused prescribed meds), participated & raised money in the NAMI Walk, know a lot of other families, etc. — the bottom line is, I’m basically out of ideas and the system’s response is, well, you’re shit out of luck. I WAS able to get SSI for him, and then Medicaid, but it’s still not enough. Most people don’t get SSI on the first try, but I did, and I consider it an answer to prayer. I’m from a very prayerful family, but most family members have dropped out of sight — not for me, but for my son. No one talks to him, because he’s so impossible to know or spend time with. I don’t fault my son’s cousins, with whom he was very close, because they don’t know what to say or do. It’s a very lonely experience to have an adult child with severe mental illness. At this point in time, I lead a very “split” life — on the one hand, I’m a capable, caring Family to Family instructor, sending loads of helpful emails to all the families I’ve come into contact with. But in my real life, I sit in my garage, praying that my son won’t wake up, or if he’s gone, that he won’t get arrested, and I drink, chain smoke, and do crossword puzzles to escape the reality of this hell. My neighbors for the most part are wonderful — we’ve been neighbors for decades, and they have their own pain which makes them sympathetic and empathetic. Two of my immediate neighbors have lost adult sons to suicide, and a younger family across the street has a daughter (and wife) with bipolar disorder. But we also have newer neighbors with young children who are afraid of us. My son, in the eerie way that mental illness ALWAYS finds your most vulnerable area to attack, has developed an obsession for the young mother next door. She recently called the police on my son, which was probably the apex of my humiliation and defeat. I think the next step is a restraining order… my son put a note in her mailbox, which definitely spooked her. I’m 61, and was raised a Lutheran (all that sternness!) and my mother (who herself dealt with depression and an abusive childhood) made “appearances” the absolute #1 priority — NEVER do anything that would cause scandal or negative attention! She used to gossip about the neighbors on our street growing up — thinking back, there was a lot of mental illness right on our street, a very upper-middle-class neighborhood in Northern Virginia, back in the 70s… we had neighbors with psychotic kids, suicides, a pedophile next door… but all was kept “under wraps.” Yet when anything would happen with these troubled families, my mom, who was the absolute pillar of her church and a model Christian, would talk and talk. Consequently, I am so mortified by the fact that my own neighbor now has called the police about MY SON. I realize this is NOT the issue… my son lives in utter hell, and yet the shame I feel over his behavior has made me lash out at him in terrible ways. My husband’s coping mechanism is to run away. He’s a very successful guy, who made a lot of money by working hard, and now he flees to his boat and leaves for weeks at a time. I don’t blame him, but it leaves me holding the bag. My three wonderful sisters have been so supportive, but after nine years of constant, almost Jerry Springer-like crisis in my life, have lost the zeal to support me. Again, I don’t blame them. I sometimes think that if a terrible regime were in place, like Hitler’s Germany, my son would be killed. I almost get jealous of all the people (and there have been six families I’ve known in the past two years) who’s adult children with mental illness have killed themselves. Then, at least, the crisis would be over. My daughter, only 18 months younger than my son, is terrific — a teacher, a great girl, beautiful, funny, sane, calm, and kind — so I know that my flawed parenting isn’t completely responsible for my son’s problems. I’m grateful to have my daughter, because if it weren’t for her, I know I would entirely blame myself for my son. When my kids were little, I had a lot of fights with my husband, who also has a mood disorder and a narcissistic personality. I used to thank God that my kids were okay, because I knew that if anything went wrong with them, my husband would blame me. I often think of those words from Job, “the thing I have feared has come upon me.” I sometimes worried that if anything went wrong with my kids, my whole world would collapse. Well, my son is severely mentally ill and my world is reduced to a very weird existence. I love to entertain and frankly, being a “do-gooder’ is hard-wired in me and two of my three sisters. This was how my mother coped with all her past horrors, and it was ingrained upon us girls to always help others. I don’t want to sound like a jackass, but I will say this: mental illness strips away your ability to do nice things for other people, because you’re so consumed with your own freaking mess that you can’t even remember birthdays. I’ve now become quite the drinker, and I look like a hag most days. I’m so fortunate that I don’t work… I read these blogs and can’t imagine having to go to work after being up all night, with all the drama that goes on. I DO pray like a nun, constantly… it’s almost a form of mental illness, the way I pray. Constantly. And I sometimes think, well, maybe if I became someone who’s a complete ZEALOT for the Lord, my son would be healed! But my logical brain says that’s only magical thinking. I often long for my son to be dead, which would free him from his misery and allow me to live the rest of my life in some form of peace. Of course the guilt would kill me. The system is designed to fuck us all over… if you’re lucky enough that your relative takes their meds, sees their therapist, and hasn’t been too brain-damaged by inept doctors and hospitalizations (they’ve done more harm than good), get on your knees and thank God! Anyways, I love this post and will send it to my various groups. Nobody’s pain is worse than anyone else’s — pain is pain — but I must say, I’m humbled by so many of the posts here, and what people have endured. The same is true for the families I’ve met in my NAMI classes and support groups. Go to a NAMI support group, if you can. Sometimes, you just feel too numb to even talk to anyone. I love all of you and I can only pray that someday the truth of all this suffering will be revealed. Thanks for letting me rant in this post with no paragraph breaks! Sorry about that. Love to all.

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