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Schizophrenia and Parenting: Step In or Let Go?

A message comes to me via social media, along with an invitation to connect. It simply says, “My 27 year old child has schizophrenia, but will not get treatment.”  Oh boy, can I relate to that. Unfortunately, this is a major dilemma facing all of us who deal with mental illness in our families.

Parenting is always about the precarious balance between stepping in to help, and letting go to allow learning from experience. From a child’s first steps to his or her first relationship, car,  job, apartment…when to give advice? When to help? When to step back and watch them sink or swim?

For the parents of a child without a physical or mental illness, this process is difficult enough; for those who are dealing with illness in our children, it’s that much harder. The consequences of stepping aside, of letting go, could be disastrous: poverty, hospitalization, an arrest, flight, or even – tragically – suicide.

Schizophrenia and Freedom Can Be A Scary Combination

Back when a hug was all it took...

Back when a hug was all it took...

My own son, Ben, 29, has just moved from seven years in a group home (24 hour staffing) to his own apartment. There is some support – a caseworker, medication supervision – but also a new lack of structure. No required group meetings. No chores scheduled. No one – except the roaches – to know if he washed the dishes or not.

Am I excited for him? Of course. Am I concerned? You bet I am. Is there much I can do? Only some things. He could crash, he could cheek his meds, he could oversleep and miss an appointment, he could become lonely and isolated. But if I call to see how he is, he sees right through me. “Mom, I’m fine. I’ll get to work on time. Of course I’ m taking my meds. I’m fine in the apartment all alone on my day off. Yes, I”ll unpack  soon.”

So I let him live. Alone. And I watch from the wings, ready to alert his caseworkers if I see any warning signs. Three days ago I saw the unmistakable (to me) signs that Ben had missed a day of meds – so I sounded the alarm to all new staff members who donot know his tricks yet. And now he’s okay again – so far.

Now I only see him on family occasions, or  on rainy days when he can’t take his bike to work. Could he wind up in the hospital again if I am not there to witness symptoms? Yes, of course. And I hate that. But we have only so much control.

My Adult Son with Schizophrenia: We Hope for the Best

As always, we do what we can and then hope for the best. Keep an eye out for trouble, and our hearts in a place of faith in Ben and his ability to make the adjustments to this new life.  Scary? Oh yes. We do the best we can for our loved ones -secretly or openly – and then sometimes all that’s left is to take care of ourselves and the rest of our family.

My mantra at these times? “Whatever happens, we will handle it somehow.”

I don’t always know how, but I know that we’ve managed before, and will again. And I ask for help when I need it.

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230 Responses to Schizophrenia and Parenting: Step In or Let Go?

  1. Shannon Stowell says:

    my son began exhibiting signs when he was 22. i heard stories of how a satanic group took his soul-and followed him everywhere-through the telephone and media lines- cable and tv. he also has full blown aids-because he wasn’t lucid when they offered the medicine. he thought they were trying to poison him-and he was an adult! what a nightmare-i could do nothing. i had to bend rules and make friends just to keep him alive. now he resents me-im overprotective-i dont even recognize him as the child i raised-its like watching your loved one die. he sees a psyche and is on meds-but not the right combination. any input i try to give is not acceptable-hes an adult. meanwhile i have to pick up all the pieces when things go wrong- and he tells me to stay the **** out of his business. i dont know how to tell him life is worthwhile. now he has colon cancer and hepatitis c. his days are numbered. lately i just drink-because i know i will bury him- and i remember when he was so sharp and full of life-ready to take the world by its tail. i have two other boys and-honestly this has taken away from them what i couldve given. i feel like nothing i do will be right…and its very hard to keep plugging-every day. every hour. every minute. im so glad i found you guys. its such a relief to know im not alone. thank you so very much.

  2. Shannon Stowell says:

    my son was 22 when he began exhibiting signs of schizophrenia. he was far from home- and i heard tales of some kind of cult that stole his soul and follow him everywhere. he beleives this to this day and his doctors say he may just live with it and do the best he can. even with his meds he will sometimes be very afraid of the computor or cable receiver. in addition after he spent two months in the state hospital-he came down with spinal meningitus-and was found to have full blown aids. in addition he has colon cancer-w 3 surgeries scheduled- and hepatitis c. hes very young and was excited about taking the world by the tail. now-hes given up- and i dont know what to tell him. he takes his anger out on me in the most hurtful ways. i cant completely talk to his doctors-they have to break a few rules just so i can keep a schedule. im so very grateful to have found this site. its good to know im not alone.its good to know WE’RE not alone. let’s keep talking.

  3. Shannon,
    Do you have anyone to talk to about this? Have you looked for a support group in your area? You are not all alone, and there are groups all over that are there to support family members struggling the way you are. You need support. No one can do this on their own. Try NAMI, Fresh Hope, and Mental Health Grace Alliance to see if there is a group in your area. I’m so sorry for all you, your son, and your family have been through.

    Blessings,
    Taylor

  4. Cathy says:

    I want help live in eastern pa by scranton. My Son has had skitsofrenic long time. Started when he was 13 niw37 all have deserted him my ex his father and family. All he has is me and my new husband of 4 months never felt with mental illness.NAMI WANTED MONEY. MY HEART ACHES FOR HIM. HE JUST WANTS TO KILL HIMSELF. MY MOM HAD ScizOFRENIA ALSO I DID NOT KNOW THEM AT 10 now I am in my 60 it is a horrible mental illness.

  5. Marilyn says:

    My sixteen years old has aspergers but also at 14 showed signs of scitzophrenia thinking he had a microphone on his head. He only mentioned that once. Medication has helped but it seems his disordered thinking is hindering him to be able to do his homework.
    How much are you supposed to push him. He is so smart. Now he is 16 and I worry about his future. Do they hide what they are thinking because they worry about us thinking they are crazy? Not sure how to help him.

  6. Marilyn,

    Have you read the “The Center Cannot Hold” by Ellyn Saks? She has schizophrenia and has been very successful. Every person is different, but many people with severe mental illnesses are finding a way in the world. Randy at benbehindthevoices.com can help you more. She has written a book on her experiences with her son.

    Good luck to you.
    Blessings,
    Taylor

  7. carol says:

    Shannon stowell, I’m praying for you! This message probably won’t get posted, I don’t know why but everything I try to do gets thwarted. My heart goes out to you, and I’m also drinking lot because I know I’ll bury my son… and the worst thing is, I almost want to. I’m so tired of the mayhem and nightmare of worrying and trying to keep things from spiraling out of control. As it is, when the police come to our house, I know them by name. I’m actually glad my sweet parents died in 2008 and 2009, because they don’t have to know about this. I love all the families of the mentally ill, because we’re in this struggle together, as corny as that sounds. God bless you. Read the Psalms, they do help. And I fervently believe that beyond this life, we’ll see our kids again and they won’t be mentally ill.

  8. Debbie Pietro says:

    My son has paranoia and mental health issues extremely bad time and fights every day to stay alive he lives on the streets or anywhere he can stay he cannot focus on one thing he has been trying We need help and not sure where to go he has been toCMHA and they place him in places he cannot stay due to his paranoia he has a worker who helps people on sthe streets but he does not keep in touch due to his illness and misses all kinds of apts what can I do Mom desperately seeking help for my son ..

  9. Donald Pena says:

    Have you tried MHMR services with in your county.

  10. Eileen says:

    My son has schizophrenia ,I am so tired of no answers I have done everything I can I finally got a restraining order and he was on the streets ,homeless shelters,lived in the woods also,I felt bad and let him back home…sometimes he is ok then other times he will do bizarre things calls me terrible names won’t take meds put rat poison in the dog dish,I can’t have friends over because of the way he acts, he had bottles of gasoline in his room and said he was making his own medication,do I sacrifice my life so he can live here or put him out he is 30..What is the answer

  11. Randye Kaye says:

    Oh, Eileen. My heart goes out to you. Our son still lives with us, and it’s no picnic, but we can see the results of our support in that he now can work, and also has some friends. This is because we stay up every single night to supervise his medication, which he takes with great reluctance and a fleeting look of what looks like hatred (for a moment) in his eyes. But our mutually uncomfortable moment buys us another 24 hours of his having much of his life back.

    We live on that tightrope, with danger always visible below us. But since Ben is in treatment, our current fears are nowhere near what yours are. Our sacrifices right now are smaller. You are living in fear, for your son and for yourself.

    This is no life.

    Unfortunately, we all know how unsupportive the system is. Still, you must reach out and get help for yourself. There are some excellent suggestions in comments above, as well as in my book, Ben Behind His Voices. But right now I suggest you get to a NAMI family to family class, and learn about your son’s illness and also self-care. This is an investment in time, so take the course while also asking around about alternative living arrangements for your son. The best time to get help is if he is in the hospital. In my book I describe how I had to declare Ben homeless to get him a bed somewhere else. The guilt ate at me but it was the best thing for all concerned.

  12. J says:

    My son has suffered with this since 12 years old, now 25. He is so extremely angry half the time & takes it out on me. (He believes I “injected” him with it.) I have no doubt he could kill me or someone else one day. At 25, I feel I need to let go & step away. I love him so much, but he just drinks, refuses treatment, & lashes out. This is the first post I’ve done on this. Any advice?

  13. Asta Sitkauskas says:

    I am looking for help hot my 24 year old son.He has schizoprenia since his 16.His very first symptoms was fatigue and depression and isolation.He was put on zyprexa and was doing very good in school also he was on natural treatments at Pfaiffer Center in Illinois.I don’t know what happened but me son from very fatigue became agressive,his mood from very happy loving kind person can change in a min ,he would attack us with no reason.I can’t stay with him alone ,I have to have my husband around all the time so he can protect me.My heart brakes I love my son with all my heart and I can’t be around him.He used to be so bright smart kid always with the big smile on his face.A weak ago he attacked his father at home,he say he wanted to kill his father we took him to the hospital .His psychiatrist changed all his meds .Now he is on clozaril and tegretol.He takes his meds always makes sure he won’t miss a dose but the meds are not helping him ,he wants to be normal he wants to live with us.what I should do in this situation he try his best to get help but violance never goes away.We are so afraid what will happen to us and our son.Please any advice we need helo.

  14. Janette says:

    I know how difficult it is to have a loved one who’s mentally ill.i have one my self. He’s in d hospital right now so i’l be looking for place for him to get treated.but the constant torture of worry and fear is eating us inside out…please take time to take care of yourself.
    u have to be well to take care of your love one.and Please find peace in the great promises in the bible.”Call upon Me and I will answer you” says our Lord almighty. Psalms
    cast ALL your cares uponMe and I will deliver thee…we r ask to call and trust in Him fully.Give Him thanks for He already answered r prayers…He’l see us through in all these trials…so glad to have this support.

  15. Jscared says:

    20 year old daughter diagnosed one year ago but we didn’t understand the seriousness of illness she stopped talking meds 1 month after first eppisode and seemed to be doing fine she moved from california to chicago to go to school and things were great for 9 months but we recently had to go to chicago to bring her out of a mental hospital were she spent 10 days.we were told only reason they released her cause we were bringing her back to cali and now with her back home we are trying to figure out our next steps have been taking her to doctor appointment but ordeal has tajen its toll on wife and i and beleive we need to ser someone aswell

  16. Hopeless says:

    My son is 33. He was always a smart child, he even was put in the gifted program in third grade. He was in sports, and has always been an attractive, healthy, happy son with lots of friends. 3years ago, he was at my sister’s house an came home and said she said really mean things to him an called him names, he only said hello. I have never known my sister to act this way, but had also never heard my son tell lie to anyone. A year later he was complaining that he could hear his younger brother talking on phone every night running him down, they used to be close and inseparable. Today he hears everyone saying bad things, everywhere he goes. At stores, in checkout lines, just driving down the road, if someone’s outside he claims they screamed at him. He doesn’t sleep nights, just sits up listening to myself and his brother running him down even tho we are sound asleep. He went to sleep at his dad’s, and claimed he was doing it to. So he went to sleep in his truck in the woods, and heard people in the woods yelling at him to get out of there. I took him to get help, but he told them none of it was true, that I made it all up. Now he just sits in his room starring at tv that’s turned down the whole way. He abuses the drug benadryl, claims he can’t sleep at all without it.. usually 5 to 8 50mlgrm a day. Someone please tell me what to do. He has no place else to go. The only mentally illness in the two families is dementia on his father’s side. He has tried to commit suicide, when it first started, but I found him on time. I just want my son back, and it’s killing me that the kindest person I have ever known would be dealt this horrible thing.

  17. Lisa says:

    My 7 yr old stepdaughter was just diagnosed schizophrenic with several other disorders. We went to more than one psychiatrist to be sure. She is so sweet when she decides to be, very much in control of her symptoms. But when she decides to act out on her impulses it’s so strange and scary and there’s really no help. No guidance. I found her outside naked eating trash at 6am, it was 37 degrees and she was in a trance. I knew something was terribly wrong very early, like 4-5 because she could manipulate and lie, she could act one way then later with none around just be totally hysterle and combative. She will say terribly strange things and get people in trouble if they don’t do as she wants.

    We are a large busy family and we are now experiencing child protective services getting calls from people stating this child is very strange acting and there must be a reason why? We are shattered at the dioagnosis and at the shaming people have put on our family for the diagnosis. I had no idea people actually went through this. Honestly it’s so heartbreaking for us to see her become symptomatic. The things she’s missing and trying to sort of compensate or create alternative experiences for her. It’s very isolating and very overwhelming. My heart to you all after reading and identifying with you.

    One thing is consistent, there’s no help that really helps. We have to either hang on or let go and that is the truth!

  18. Iris says:

    My son is 19 years old and just last year I learned he was diagnosed with schizophrenia. The ending of last year he was admitted to a hospital this was his 3rd time where in the beginning of his 3rd week there he had decided he was going to take medication since he did not want to be there. It was the first time he started to take medication since his diagnosis. What has helped me to cope in this difficult time are the NAMI support groups. There is this one book that I recommend to all parents, relatives or friends of a person they know with a mental illness. It is called “I Am Not Sick I Don’t Need Help! by Xavier Amador, Ph.D. Never lose hope where there is a will there is a way. My heart goes out to that are dealing with this situation. It is not easy but we cannot lose hope.

  19. Lily says:

    I have a 27 year old son , he has paranoia. He tells me, him and I are in trouble, but he can’t disclose why. He says I have to trust him. I am living at my sister’s for a few months, we share a room , he claims there is a camera in the room and were being listen too or someone is watching us. We can’t talk on our cell phones because we’re being heard. He claims it’s the FBI. I have begged and cried to doctors about what I been seeing and hearing from my son and yet he is not being treated properly , last night my son asked me to get my stuff ready because we were leaving, someone was picking us up and taking us to safety. It was about 10pm and here I was outside with him so he would be safe. He is being prescribed Seroquel for his paranoia but it does not work. He was put on Zyprexa but he had very bad side affects, so he went off the Zyprexa. He was hospitalized but was not treated for the paranoia. I am so frustrated that I tell these doctors what I see happening and I am not being heard. He take other medications for depression and anxiety. He is not aggressive but I get nervous if he feels someone is out to get him , I am afraid he will become aggressive at some point. We tend to argue because he doesn’t want to admit he has paranoia. He is in complete denial. I don’t know what to do when my voice is not being heard. I think my son has a chance in life but time is clicking and I have no idea how to get him the proper help. I am so sad that he has to go through this and I am sad I have to struggle with him to anything. I just don’t know where to turn too.

  20. My name is denise I have a son who is 27 and has paranoid schizophrenia. He has suffered with this debilitating disease for over 7 yeArs now. He has delusions and hallucinations. Hears demons in his head he says. Tried to overcompensate by praising Jesus. He is hyper religious. He is paranoid and often goes into rages. I have had to call the police on him several times. They never help. He needs to be forced to get help. I need the help. I really could use some sign of hope for him. He is a great kid smart and nice looking young man. He broke down into tears today because he said demons in his head were bothering him. I feel so sad for him. He won’t seek out help. He refuses meds.
    He lives on the streets and comes home for short periods at a time. It is a terrible life for him. He serves better. The system is not set up to help him.

  21. Becky Dozet says:

    I grieve with many of your stories. I wish I was alone in our story and that you do not have to watch your loved ones go through the shadowed journey of mental illness. It is heart wrenching.
    Our story for our son is very much like all of yours.
    We are at a loss. The system has tried to help from Idaho to California but he is again on the streets homeless and does not recognize his illness and will not accept any help or treatment. We can not have him in our home again unless he is undergoing treatment of some kind, but we are compelled to try once more to find him and get him into housing. We thought he would be finishing medical school at this point in his life. We love him and miss the person he was. If we did not have a deep faith we would not be okay. There has to be a way to help all these we love. LORD give us insight and understanding and resources to help them and others. GOD keep us all in every way. Thank you for protecting and watching over them wherever they are.

  22. Alisha Green says:

    Hi My name is Alisha. I have a 23yr old son who has paranoid schizophrenia now for about 2yrs. I did not know he was suffering from this illness. I just thought he was going through a depression stage. My son was smart, happy healthy. He enjoyed basketball, life and being with family & friends loved to dress fresh for the ladies. Everything went down hill at the age of 20. He started to hang with the wrong crowed smoking weed. Couldn’t keep a decent job. 2015 my husband and I would talk to him about working & teach him about being an adult and responsibilities. My son did not want to work.anymore, take a shower, he did not care how he looked anymore, wore the same clothes for days. He would always say someone took his money or he feels things on his body. Never wanted to leave home. He stayed up all night and would sleep during the day. Until one day we came home from work he wasn’t there. My son was always home. It was friday we figured he went out for a walk. My son comes home my husband feel asleep on the couch watching TV. My son come in the house about 12midnight he eat took a shower. Came in my room to talk to me, he waited a while. I guess he thought i feel asleep. He turns all the lights of in the house. I could see him because my tv was still on and my bedroom faces the living rm. I here noises I jump up turn the lights on in my room. My son was beating my husband with a bat in his head. I yell at my son what are you doing. I grabbed the bat he stops and runs out the house. My husband is laid out on the floor faced down. I thought he was dead. My husband had surgery on his eye, 11 staples on his head and 10 stitches over his eye. My son went to jail never thought this illness could be so dangerous. He was there for one yr. He went through mental hospital for evaluation never once was I told he was suffering from. Schizophrenia. My husband was hurt but did not want to press charges. We wanted him To get help he needs in a program. We figured we let him stay there for a while to learn a lesson, not realizing we are making his situation worst After a yr. I bailed him out my son wanted to stay with my grandmother. Who raised me since I was 1yr old. He was afraid my husband would want to hurt him. My son told me he gets paranoid sometimes and thinks someone is after him. He did not trust me I had to keep telling him. I love you and I would never do anything to hurt you. Our family was there for him, but he did not want anyone’s help.
    My son was bailed out Aug 2016. He wasnt the same. My son killed my grandmother Sept 2016 and tried to kill me my son tied me up. I was able to free myself after playing dead for half hour so he will stop beating me.

  23. Antoinette says:

    I’m the mother of a 16 yr old son, same issues as all of you. Many hospitalizations, residential care, etc. I’m afraid to be alone in the house with him. He sees a psychiatrist and a therapist once a week, has a therapist come to the house, takes meds (tenuously), but nothing has helped. He’s still aggressive, abusive, isolated, paranoid, delusional, and irrational. He’s threatened us verbally and brandished a knife on several occasions. I love him so much and I’m incredibly sad for him. He talks about suicide almost daily. He is just suffering, always fearful, always sad and miserable. I’m curious how this works in Western European countries, where there are no mentally ill people on the streets. How are they being treated, despite the challenge that most schizophrenics lack insight and do not want to be treated/take meds? Best of luck to all of you..

  24. Diana Lozano says:

    I pray that I willk see my real grandson in heaven one day and hell be laughing with me and happy again.

  25. Carol says:

    My daughter is 34 and have been diagnosed with schizo-affective disorder 8 years ago. At that time her daughter was 3 years old. Today at 11 my grand daughter has been adopted . I was unable to adopt her after having cared for her the first 8 years of her young life due to the fact that I had to take care of my own daughter. This illness is heartbreaking and exhausting to say the least..my daughter’s violent behavior at times is so disturbing. Like so many others she won’t stay on her meds which causes everyday to be unpredictable. Caseworkes always find her extremely difficult to deal which makes it hard to get any help. I found the previous comments to be helpful at a time when i am feeling less and less hopeful. Living with her is to the point where i feel I can’t take it anymore…

  26. Someone from Minnesota, USA says:

    Hello all,

    Wow, my mind and my heart are racing. I just experienced an “episode” of my brother’s schizophrenia. I don’t know if it’s correct for me to say that and I don’t want to offend anyone but man do I feel scared. “What just happened?” I thought to myself afterwards. Let me take the time to say that I know a lot of what I write might not make sense and I don’t really want to go into detail. I’m just writing because it helps me feel better and it helps me organize my thoughts. Basically, my brother was watching a movie and in that movie there was a phrase that had to do with religion. And he started speaking about being afraid of Muslims and his wording was full of hate, fear, terrorism, and ignorance. He then mentioned that his feelings were only for “radical Muslims.” I told him I was tha I loved him but I was disappointed in him because of the ignorance in his words. I knew after he made a colorful gesture that I wasn’t really talking to my brother anymore. That’s the thing though. Was it his scizophrenia? He was diagnosed as a teenager, I think, but for so long I refused to treat him differently because I didn’t want him to be treated as an outcast by society. I wanted him to know that he could have a brother that would love him regardless of his condition. That’s what I would want too. Years passed and now I just finished Googling “how to deal with an older brother with schizophrenia”… I read something about cutting ties eventually for the sake of my own mental health. I also read about putting him in 24/7 care group homes but what if he doesn’t want that? I don’t know what to do. Do I even have an older brother? Does that make sense? When am I speaking to my brother? When am I speaking to the schizophrenia. I’m an undergraduate junior that loves school and enjoys applying the knowledge I learn. I looked into (very minimally) the cause for schizophrenia and found virtually nothing. At this point I feel a little more relaxed after writing all this out. Again, I apologize if my writing doesn’t seem complete. It’s just that I’m still in shock about the encounter I had with my brother. Thank you whoever you are for reading this. I hope whatever it is that brings you to my post isn’t as concerning as my situation.

  27. Joni says:

    My daughter was finally diagnosed at age 19. She was an extremely difficult child, defiant, angry & focused her rage at me. To make things worse, she is very low IQ, so there is no way to reason with her and she repeats dangerous behavior because she can’t learn from past behavior consequences.

    She has been through many mental health programs since her diagnosis. She is now 36 years old. She does not cooperate with program rules or comply with meds on a consistent basis. NAMI is a farce. They are absolutely no help.

    She has been arrested many times when she goes off her meds & becomes violent. A social worker told me they tend to kill their mothers. The last time she was arrested she was committed to the state hospital. She calls me non stop to rant and rave.

    At this point, I’m ready to just give up on her. The stress in ruining my health and after all these years I’ve realized I simply cannot help her.

    Our mental health system seems to rely mainly on the jails. The frustration and heartbreak are unbearable.

  28. Kate says:

    Anyone know of any good help in Iowa? I recently read there are supplements that can added to medication for schizophrenia but the trick is keeping our son on the medication as anyone who has dealt with this knows.

  29. Shirley says:

    Which country is this website in please as I seem to be on American websites most of the time ??

  30. Hi Shirley,

    This is a US-based website, but we have bloggers from all over the place.

    Taylor Arthur

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