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

  1. brianna says:

    My uncle and his son are schizophrenic. My uncle and father were abused as children. When my little cousin was five years old he watched his dad shoot his mother in her leg. My uncle spent 14 years in prison and when he came home he lived with my grandmother. My uncle scared me all the time talking about building aircrafts to get away when the government attacks and living in the woods and only eating fruits and veggies because it’s “perverted” to eat an animal or drink milk from an animal. Almost two years after he came home he shot my grandmother in the head while she was sleeping. This was the most devastating day of my life. He doesn’t believe he did it he says “they” set him up. Now his son is currently incarcerated for chasing down a biker who cut him off while driving and attempting to slit his throat. The man lived thank god. Now I’m concerned because my dad believes my uncle was set up and he’s been talking crazy about my mom saying she’s cheating when she’s at work and tells us all he sees the devil in us. My dad has always been abusive to my mother and was abusive to me as a teenager. I can hardly understand anything he says, nothing makes sense. I’m really worried he’s going to try to hurt my mom or someone else in the family. But nobody will try to get him admitted because without him we can’t afford our house. I’m lost and scared and don’t know what to do.

  2. Karen Powell says:

    I cannot do this any more. My older sister, in her early 60′s, has been in 1 terrible group home after another. She is schizophrenic and for some reason, I am the 1 she is angriest at and least likely to listen to. I am her younger sister and she hallucinates quite frequently that I am dead. After DECADES of hospitalizations, arguing with her to switch psychiatrists, begging the psychiatrists to try something new, begging her to let me move her to a new group home, unsuccessfully having her live with me a few times and getting evicted because of her, I now sit here and I cannot do this anymore. No family will help with her. My daughter used to help, but now is mad at me and blocking my phone calls, so she is not even calling my sister. We finally thought a few years ago that we had found a decent group home. Then my sister started losing weight several months ago. She is a heavy smoker and I thought she might have lung cancer. Then she fell at that place hitting her head and e_m_s was called because she was unresponsive. Her lungs looked okay at the hospital. 10 days later, she fell again breaking her left hip. The woman who owns the place put my sister in a wheelchair and waited almost 3 hours to get her to the hospital in a car. Then she informed me by text my sister was “hurt” and she left my sister alone at the emergency room. After surgery, my sister was transferred to rehab today. This will only be for 1 week. I am trying to find another place to move my sister to and only have a few days to do this. In the meantime, I have reported this place to adult protective services. And my sister has been calling this place and telling the owner she is coming back there after rehab. When I brought up the subject of finding another place, of course my sister rejected the idea. She cannot go back there. In the middle of all this I am dealing with my own health issues. I have stage 4 liver disease and have now developed heart issues, which is stopping the doctor from treating the liver problems. That’s my new doctor. I switched doctors because my old doctors were doing nothing for me. The last few days, I find myself counting pills. I have many. Portal hypertension, varices, depression and anxiety. I have pills for them all. I could never do it, take them, for who would take care of my sister? I pray to God and tell Him it is all in His hands. But I am holding on by a thread.

    Karen

  3. Randye Kaye says:

    Karen, I’m so sorry for your pain. The emotional (and decision-making) burden on siblings is so often overlooked. I worry about the responsibilities that may lay ahead for my daughter Ali and her husband when we are gone….tho of course no one wants to think about that. I urge you to get some help for yourself, as you try to get support for your sister. Have you attended any support groups for yourself? Taken Family-to-Family? Hanging by a thread s even worse when you feel that you are all alone. Please hang there.
    randye

  4. errantskye says:

    I have read all of the posts and I am sorry for all of your pain. It is not your fault your child has a brain chemistry problem. Once your child is an adult in my opinion it is not totally your responsibility to fix it. Myself, my brother, nephew and daughter have schizoaffective disorder. The best thing my loved ones did for me is let me fail.Yes I have been homeless and addicted, I suffered and I am sure it was painful to watch but boy pain is the best teacher.My loved ones did not make me homeless, I did. They did not force me to get high I did that. Now I am good but the rest of my family that is mentally ill are doing bad. I mean I am not cured. I see things and hear things that nobody else sees and I talk to the people In my head all the time but I do not add to the problem. I pay my rent and take my meds and someday I hope to work. If my loved ones had rescued me I don’t believe I would be where I m at today. So I hope this helps. If you don’t put yourself first there is no way to help anyone else

  5. Lee Smith says:

    So sorry for your difficult life. But you care, and you have not abandoned your loved one. I worked for years in a social work position dealing with people with mental illness and their families. Most were bewildered and so concerned, not knowing what to do. Some just divorced themselves from the situation, going about their business as though the ill person did not exist. You people love and care, so I have so much respect for you all who keep trying.

  6. Diana says:

    Hi Randye, I am in the process of reading your book. Excellent! When I read it it so parelels my own life I can’t believe it!! I am finding it very helpful. I have 4 kids, a single mom as well. Over the past 1 1/2 my 23 yr old has been diagnosed with undifferentiated schizophrenia, psychosis & mood disorder. My home is a HCBS lisenced home. My oldest daughter, 37, is disabled with Autism, anxiety, PTSD and functions at a preschool level. I am her primary caregivers. My son can not live at my home because of the lisence, until he gets a DPS fingerprint clearance card and passes a criminal history check. He just got released from the psychiatric hospital and is now in a BHRF ( behavioral health residential facility). He keeps calling me every day, severalntime and wants to come home. He refuses to sign the applications for SSD or other for “fear” ghat the government has some conspiracy that affects him. I feel so sad for him! This is not the son I have known for 20+ yrs. I need some advise from some one. About if I should let him come back and live at home or if its better for him to stay. I just need to hear what others might think. Thank you….

  7. Amy Henry says:

    Hello,
    My 15 year old daughter has been diagnosed 1st with anxiety, depression, bipolar, and now, come to find out she’s likely schizophrenic. She’s been hospitalized twice, attacked family members several times, and has a pending court case, has attempted suicide, shaved her head, regularly self-mutulates, her bedroom is beyond gross, failing everything in school, often refuses to go to school, has no respect for authority. Refuses to take meds, or pretends to take them. Stays up for day’s, has an eating disorder. Just stated the other day that she has had audable hallucinations for year’s and talks yo a lady in a nightgown regularly, that she knows isn’t really there. I don’t know what to do anymore. I have no real support. Her father, my husband, doesn’t like to get involved. I’m truly scared of my own kid. She smashed all sorts of dishes the other night because I said no to going to Cumberlands at 9pm on a school night. She didn’t come home last night until 10:15pm and then demands that I allow her to sleep out, again, a school night, and states that I’m unreasonable. What are the best treatments? When is it time to find a residential school?!?

  8. Alice Fuso says:

    Brianna, lass… it is almost a year since you wrote about your father here. I doubt you will see this reply. I hope you do – I feel compelled to urge you to protect yourself and to try to talk your Mon into doing the same. No house is worth losing your life over. The things he is saying are very frightening to me…I am so very worried for you! It does sound like he can be a very grave danger to you…

  9. Helen says:

    One of the hardest thoughts to face is losing a child! My son is 29 years old and was diagnosed with this illness 2 years ago with medication and treatment it seemed to have gone away, recently he had another episode and is being treated inpatient. One of the things I’ve learned about this illness is to get educated and talk to other families that are living through the same illness! With hope and support we can get through this!

  10. Amy says:

    Desperate to find a group home. We can’t find any and have no help. My 22 year old son is now on 10 hospital stay in two years. He can’t come home and I am afraid it will be the streets when he is released. When at home is it frightening and disruptive and he gets even worse. We are trying to apply for Medicaid and disability,but he doesn’t want disability. Where can we get help or encourage him to live Ina a group home if there even exists one. Amy. Desperate for over 3 years now. It seems like schizphrenia or schizoaffective disorder or delusions. Pick one , too many doctors and no one helps. One even said nothing was wrong and took him off meds. He has the most stabile 9 months ever, until he used pot again. Then psychosis =Hosp= home= hosp = home= psychosis etc. Throw in drugs and you see the problems. Breaks my heart but we can’t function when he is at home. Everyone is scared.

  11. Broken says:

    Just over a year ago my beautiful 30 year old daughter became full blown paranoid schizophrenic and turned against all of her brothers and sisters and myself. She perceives me as her worst enemy and fears me. I am unable to help her in any way and she refuses to believe anything is wrong with her. She was misdiagnosed as “bipolar” as was her twin father and uncle, both of whom were prescribed prozac and both of whom committed suicide. I am desperate to help her but do not know how. I pray every day it is all I can do.

  12. Jean says:

    My ex-partner was a paranoid schizophrenic, I think. Certainly he was paranoid and had delusions and I think hallucinations. He seemed fine at some times, very paranoid and delusional at others. And prone to “minor” violence.

    He lives with his parents. He has left home from time to time, but always gone back. Piecing it together now, I think he kept trying to forge a life outside the family home (as with me) but this would trigger his paranoia and he’d always go back. And they always took him back.

    I used to sense this awful atmosphere in their home but I could never put my finger on it. Now I think I see – they were waiting for our relationship to crash, like all his others, and for how it would trigger him.

    I don’t know what will happen to him after they pass on.

    He got dangerous towards the end. So I can’t have him in my life – not that he wants to be! I do wonder what would happen if he called and said he needed help. I don’t think I’d be able to say No, so I hope he doesn’t. Because it’d be hell and wreck me like last time. And he can’t help it and he can’t change and there’s no use pretending he can.

  13. Donna says:

    Most people who are trying to care for a loved one with mental illness are desperate for help. We are all in a ‘damned if you do, damned if you don’t’ world. We can’t take it anymore, but we can’t give up because we can’t bear the thought of our loved one suffering more than he/she is already. We see ourselves as the only ones who care, because for many of us, we are the only ones who care. Our lives are not our own..
    We are either trying to help our loved one with the illness, or we are trying to appease the other people in our lives (who, oftentimes, resent the one with the illness) so we can continue to help the ill one. It’s great that there is a caseworker that some of us can call if we think our love one is regressing, but most of us don’t have that , and are a long way from ever having someone to call.

  14. Rita says:

    Our son got mentally sick at 17 , hearing voices, paranoid etc. He used meth to hold the voices back. He is 35 now. Joe has been in and out of hospital, jails, and group homes, he has lived on the streets for weeks at a time. Sometimes taking his meds. doesn’t even help that much the side effects are hard on him seems he still can’t think clearly and sleeps all the time. The worst part is what is going to happen to him when we are gone? The program he is in now is pretty good compared to other group homes. He has a case worker and I alert her also to any changes I might observe but Joe has learned how to mask. There is nothing for these people to do, no where for them to go, they need to be able to keep busy. I have also seen through the years that having some spirituality helps to stop some of the pain these poor souls feel. The bottom line is a person has to want to feel better, has to want to take their meds regularly, has to want to help themselves.. How do you make a person want what you want for them? This last episode Joe was on the streets for a month our family was beside itself not knowing if he was alive or dead. I reported him as a missing person ( he can be a harm to himself or others) was just about to flyers around town, when his brother saw him. Joe wouldn’t go with him so we called the police they picked him up and Joe is in the hospital. I am sure they will release him within 2 weeks, hopefully his case worker will have a place for him. Yet I know it will happen again. I do think it is time we think of our own health , but I want someone to tell me how? Never have written on-line. Thanks for listening our stories are so much the same, I will keep all of you in my prayers.

  15. Randye Kaye says:

    Thank you so much for your comments here, and the courage to tell your stories. Yes, indeed, we know the struggles well – and the sadness, the loss, the heartbreak, the desperate need for help and hope.

    In the four years since I wrote this post (soon after my book was published), I am happy to report that our son Ben has had improvement in his life. This was, frankly, beyond my wildest (tho realistic) expectations – and is still precarious. Two days without treatment and much would be lost. Still, I want you to know that with treatment (and structure, purpose and love/community), our loved ones can do more than just stay out of the hospital. It takes time, too, and patience – but Ben has a job, a car, friends and even aq credit card. It is possible – but someone had to give him a chance exactly when he was ready to take it. We are grateful for every good day, believe me…but also worry about the future. If we are not here to supervise medication, etc., what will happen?

    Families need support and a way to plan…and so much more. This is so hard – but there is hope. We want to work to help people see possibility in those with schizophrenia. But the balance is hard to maintain. Ben lives with us now, and cooperates with the house rules. What will tomorrow bring? who knows? Parents are left, still, with the bulk of caregiving. And so we fight for the right to a future for those we love.

  16. Carrie says:

    Hello,
    My brother Johnathan is 24 years old and had officially been diagnosed with schitzophorenia about a year ago. My parents divorced when I was three (Johnathan was 8). Our father had gotten custody of us, which was a good thing because our mother was not “fit”. They had both been victims of addiction, my father cleaned up, my mother is still having trouble today. Anyways we lived with my father and my grandparents. I think the first time my brothers(Johnathan, and Thomas our oldest brother) got in legal trouble they were In first grade, they got caught steeling. No legal punishment just put in cop car until they got picked up. By junior high school my brothers were smoking pot and dabbling with other things. It was their 7th and 8th year they were caught steeling cough syrup from the store. They were gonna “Robo fry” which is when you take a bunch of cough syrup and get high. They were both put on probabtion, Thomas stopped his pot smoking and other misbehaviors, long enough to get off probation anyways. Johnathan only got worse, always failing UA’s, getting in more trouble, doing cocaine, extasy, stealing my grandparents pills, eventually developed a huffing problem when he was trying to stop smoking to get off probation, he would huff gas paint thinner, anything he thought would get him high it seemed like. It seemed like nothing could stop him. No matter how much my father tried to get him going down the right path, it never worked. My father ended up taking Johnathan out of school because it seemed that he was getting into more trouble there, that was his 10th grade (something my dad regrets to this day). Johnathan had no desires to do anything but hangout with friends, and have the kind of fun that only gets you in trouble. My brother Thomas was right there with him though, he just stayed out of trouble some how, so that didn’t help Johnathan at all. It was a constant struggle. My 8th grade year,my grandparents died, which wrecked my father. We ended up losing the house, my father had been injured in his job was unable to work anymore. We moved in with a friend of Johnathans with no other option, but In a year or so that went bad. Me and my dad went to live with family friend, but my brothers were not aloud there because they had burnt some bridges. They were couch serfing for awhile on the streets…it was heart breaking. Everything felt so hopeless. My grandmother on my mom’s side took them In. She lived in hot springs Montana, a very small town. It felt good to know they weren’t on the streets but that little town would be the last straw. My grandmother supply my brothers with her methadone ( she also had a pill problem she still doesn’t admit to because the doctors gives them to her). It was bad news…eventually my brothers would get involved with meth that ran rampant in that bored little town. Johnathan snapped though, got some bad dope. Next thing I know I am getting a phone call from Johnathan that the house is surrounded by police and that they are gonna fry him. Ever since that phone call, my brother was no longer the same brother I grew up with. He never talked much anymore, when we would be sitting there just watching tv, he would be starring at you with a disgusted look on his face, and when you’d ask him what’s up he just looked at you. Not a word. And when he did talk, some of the most terrifying things I’ve heard. My grandma’s had my brother for a year now. My brother thomas went to work for my uncle, and is doing good. My dad is still living with family friends, working around the house for them, and has Been trying to get on social security for sometime now. I live with my boyfriend and we have a apartment. Johnathan is worse than he has ever been. My grandma has been trying but can’t do it anymore. He denies his condition, doesn’t want to take meds. Every time my grandma had taken him in to get diagnosed, he would be normal, he would tell them that he didn’t want my grandma back there with him and they would, he would tell them he is fine and they would just release him. My brothers not stupid, he is very smart especially when it came to the legal system,because he’d been in it so long. Right now he is still with my grandma, he is supposed to be in Idaho for probation but he has nowhere to live there. It’s soo hard anymore. He has burned all of his bridges. I love my brother to pieces, I feel so hopeless…the guilt of not helping is eating at me. I feel trapped. I want him to come stay with me but I know I would be biting off more than I can chew. Let alone since he isn’t in Idaho doing his probation he is surely wanted right now. I need help, I’m only 19 years old and I don’t know what to do anymore. My family is so broken up, I’m scarred he will never get the help he needs. My dad doesn’t even know what to do anymore. My grandmother is barely hanging on, and I’m stuck in between feeling like I need to focus on my future, and the need to help my brother before he hurts himself or someone else…I just don’t know how. SORRY about the novel, just needed to let it out… it sucks so much to suffer as you have to sit and watch your brother suffer…Im on the edge.

  17. Randye Kaye says:

    Hi Carrie –
    I am so sorry to hear about all you are going through. At 19 years old, this “should” be a time for you to focus on yourself, and your own future. My daughter went thought many of the same feelings regarding her brother. We, fortunately, are in a good place today, as Ben is in treatment and his life is stable and purposeful for now. It is very hard to “force” someone into treatment. You must try to look out for yourself however you can; the truth is (however harsh) there is only so much you can do for your brother – and without support, it’s so hard to know what to do at all. Have you reached out to your local NAMI chapter to see if there is a support group near you? That could be of help. You are not alone. All your challenges – and feelings – are normal, and shared by many others.

    Your entire family could also benefit from taking NAMI’s Family-to-Family Course. This information saved our family in so many ways. I hope some of this helps
    Randye

  18. Joe says:

    My father has had problems for three years now. He has all the signs of a schizophrenic just like his cousin larry but was only diagnosed for depression and bi polar. He takes two pills in the morning and seroquil to sleep at night. He just recently chased my mother away with his violent threats and now im stuck with him. He thinks that the voices he hears in his head are religious figures and he believes himself to be a psychic.

    I have no idea what to do. If he cant get coffee or cigars he gets violent and starts throwing things around and yelling. When i tell him im not gonna deal with that behavior he askes me where am I gonna go then, knowing that I have been unemployed since his first diagnosis. I am 34 years old and would like to finish my courses since I only need 1 credit to graduate but I have to spend my time doing everything for him. Even when he was mentally healthy he left everything up tp my mom now he is doing it with me. I miss my mother but she says she will never return. I almost feel like killing myself as a way out. That way my mom would get some insurance money and be okay for a while. I am taking a hatred to my father a serious one and if he gets in my face again I might do something like stab him up. Im gonna try to dump him off on his mother since we cant pay the bills fully here without my mother. Im completely screwed and sorry to say but suicide is looking better everyday. I really hate this situation I am in.

  19. Saphia Mark says:

    My brother has been crazy his whole life and mine. My mom and dad fought the system and got him the best meds and the best help they could. He’s made my life a living hell because he thought and still thinks that demons speak to him. His Schizophrenia is the worse because it fell on religion. So it goes that all his mind is consumed with is the devil. I understand now why he has the illness he had a birth defect that cause his brain not to sit level in his head. So it cause the mix up signals. Because of all this stress from my brother who pretty much ruin my life and my younger brother life growing up. Because he was hell want to fight all the time just mean and would do noway. Would not listen would not try just cause complete hell day in and day out. My dad died at age 62 and I have been looking after my mom and brother ever since. I just feel robbed of my life. I can’t begin to explain the feeling I have right now about all of this. I’m one strong person I can take a lot. Recently my mother decide to go take a walk outside naked. She is old and yes there is a hint of dementia. But the real truth is she is also a Schizophrenic. I just found out and I am so upset over this. I am doubting my life and how I think and all my decisions because my family has this disease so bad in the family. I only had one child because I was so scared they would have this disease. And she is okay I guess she has her dad’s genes. But no way in hell would I have had a child knowing my mom had this illness to. My life has been nothing but drama. I have taken care of them and fought the hospitals when they would not put my brother in because he was not taking his meds. I finally got the state to help me and they gave him a guardian and he lives in a nursing home. I’m just full of emotions right now I just can’t believe my mom has this to. And it all makes sense now she never was happy and always upset about something and she was not a mother to me. I raised myself and my 2 brothers. Now who has a chance in hell of having a happy life when you grow up in mess like that. Well I think me surviving this is a miracle. But let me tell you something when it’s your mom, your child your husband or your brothers or sisters. There is noway you can turn your back on them. They will end up on the streets either dead or have killed some one else. I wish there were more help for the mentally ill I have lived and I would not wish this no one. I’m trying to figure out now if I’m okay or am I 20 shades of bad shit crazy. any advise is much appreciated

    Sophia

  20. Randye Kaye says:

    Sophia – wow, you have had so much to deal with. I am so sorry. I highly encourage you to connect with others who share this experience – and there are many more than you might think. Have you contacted you local NAMI affiliate? Please keep reaching out for help and support, and never feel guilty about taking care of yourself and your family. Anyone else on this thread with words of advice, please chime in.
    Randye

  21. Carol says:

    My husband and I have been married three years, known each other for five. He has two grown sons, 29 and 31. They both lived in the house with him when I met and married him. The ‘boys’ mother passed away in 2006. The youngest snapped in 2010, attacking the brother and father. No charges were filed, and the father did not let the youngest stay in a state facility. So, in 2013 both boys were in their own apartments, the youngest we watched closely, but how close can you when you aren’t there? He eventually stopped taking his meds and stopped going to his counselor, the only way we know this…this past Christmas we got a call that he was in the ER. I was scared FOR HIM, not of him. I thought the worst, he had been attacked, or someone hit him on his bike, etc. Assuming that HE was the victim. Not the case, thank God NO ONE was injured. We live in a military town, so a couple days before Christmas he drove to the base, parked his truck, went to the gate guards and told them that “Jesus, has sent him to get his friend.” The gate guards called the local police, and they took him to the local hospital.
    My world never knew that kind of pain, that someone you love could be taken away. Like I said, I did not know the circumstances, only what my mind would allow. When I got to the emergency room, they let me in, I was looking frantically, trying to peek behind curtains, they said, “No mam, he’s in the back.” In the back???? I had no idea there was a back. Through double doors, and now no rooms around, a glass door with a buzzer, a camera they look to see if they let you in or not, we go in and he was strapped to a bed, no sheets, it was sad, my heart breaks now just thinking about it. He wasn’t hurting anyone, yet they strapped him down. He wasn’t even cussing. He was scared. I saw a teen in his eyes, not a grown man. He was sent to a local county mental hospital, and stayed for a week. Ever since he has been back in the house, some days he acts like it was an act, some days he acts like he has no idea what happened. He has been diagnosed schizophrenic, and I’m at a loss what to think. Some days he takes his meds, some days he doesn’t. Yes, he lives in the house, so I check up on him, I open his med bottle and sink so low as to count the pills, then he gets mad when his father and I tell him, he needs to take his meds. If we ask anything physical of him, he says,” I’m sick” But he can run around with his friend 8 -14 hours a day. He will come home at 9 and want to eat. I don’t think this is “ill” but I have no idea. I question him a lot, and so now he has his father and his friend as the only ones allowed to speak to his health provider. Like I said, I have reasons to believe he can be pulling our legs, and then again, my husband thinks his son is perfect, minus his illness.

  22. Randye Kaye says:

    Carol, so much of what you say sounds familiar. So sorry for all you are going through. Please do yourself the favor of getting some education and support – NAMI has a great program called Family-to-Family, mentioned in my book Ben Behind His Voices, which helped us so much when going through all you are experiencing. You are not alone – though you must feel alone. Take care of you, and learn all you can. There is hope!

  23. beatriz says:

    It’s been 5 years since my son was diagnosed with Sz or Sz affective. He was stable for about 3.5 years, going to college/holding a part time job but he got tired of feeling like a “vegetable”. He decided to change medications (and we – mostly myself because my husband is too busy working/traveling for work ??) have always been there –supporting my son. These past 5 months and up to date , no medication tried seems to be right for him. He has been prescribed several but all of them have a side effect that he hates or cannot tolerate. He is still in this very delusional cycle that never ends! and the doctor thinks that he’s making up some or all of these side effects ……I’m not sure what to think at this point. Emotionally I go from wanting to help him to being extremely angry, very angry because he is not complying with the medication…..but then who can reason with someone who refuses to go to a hospital……..or complying with a medication after 3 or 4 days of taking it. The first 2 years he went to the hospital by force at least 7 times. One time it was voluntary but I feel desperate and I have to work fulltime. I’m so stressed out, He lives with us. I feel like sending him out to the streets but then, is that helping? I’m not sure if I could deal with the guilt or the fact that he will be wondering and getting heavily involved with drugs…….

  24. Ian says:

    I lost my best friend to what I believe was Schizophrenia. I had known him since first grade, he had a rough upbringing so I always tried my best to help him out. He is one of the smartest people I know and I could always count on him to figure out the math problems that I couldn’t. :) We moved out together when we were 19 and worked together for a number of years. When he was 23 I noticed he was withdrawing a bit, but he was always somewhat shy and liked his private space so I didn’t think too much of it. Until we were having a graduation party and he was supposed to be there. He never showed up and went missing for a few days. He ended up calling us and we picked him up, he was wearing brand new clothes that looked almost like a costume. Something that he would never wear but for some reason was. He ended up telling us that he tried to commit suicide… There were parts of his story that didn’t quite make sense so I decided to ask him about those parts. He ended up telling me that he thought we might be poisoning his food, spying on him with the CIA, and working against him for some reason unknown. I decided it may be best to call the police to see if they would 51 50 him since he did just try to commit suicide a few days before. Unfortunately, the cops showed up and informed my roommate, girlfriend, and I that he didn’t have the authority to take my roommate to get help because as of that day he was not a threat to himself or others. But the cop ended up suggesting that he goes to the hospital with us and to my surprise he went. To make a long story short the hospital 51 50′d him and suggested he takes medications. Which he didn’t take and now his view of us working against him was complete… I tried my best to keep touch with him but it was mentally draining and I was not at a point in my life where I could really support him. However, I feel extreme guilt for letting a friend down and wish I could do something to help. My plan is to make enough money to some how help him in the future, but by then it may be too late. He is now homeless and i’m afraid he is too far gone. I’ve seen him walking the streets mumbling to himself and it hurts to think that maybe I didn’t do enough.

    So I guess I suggest trying your best to help whoever it is as quickly as possible. Or you may lose your chance to help them at all. But I know how stressful the situation can be and understand if you decide to let them go. But my decision to let my best friend go haunts me to this day. It’s been about 6 years since this all happened and I still wonder if I made the right choice. Maybe I could have helped him, or maybe the stress of taking care of him would have hurt me or my family in the long run. Maybe all of that stress would have been for nothing and it wouldn’t have helped him at all.

    It truly is a horrible disease and I hope in the future there are more resources for families and friends dealing with this pain.

    Sorry for the rant, it just felt nice telling a part of the story.

    Ian

  25. Randye Kaye says:

    Oh, Ian, thanks so much for sharing your story. It sounds heartbreakingly familiar, and people who haven’t gone through this may be unaware of how mental illness affects friends as well as family. You did your best, and please know there is probably not much else you could have done.

    One of the most difficult symptoms of schizophrenia is called anosognosia. According to NAMI, “When we talk about anosognosia in mental illness, we mean that someone is unaware of their own mental health condition or that they can’t perceive their condition accurately.” We who love those with mental illness know how hard it is to use reason – and how ineffective it is when the inner world of our loved ones has a very different reality.

    Thank you for sharing. All you can do is be there for your friend should he ever realize he’d like some help. You can also advocate for the right to call others in to help, and for a much better system of mental health care.

    In hope always,
    Randye

  26. Holly says:

    I’ve been through all of this over the past 20 yrs. My son was first diagnosed at 17 when was in architecture school at the University of Miami. We made arrangements for him as outpatient program at a nearby hospital after bringing him back home. At that point, he moved into a group home and then his own apartment. I’m fortunate, we have a family law practice and he worked several years doing very well. Every three years he would go off his meds and and start drinking. This always ended very badly and he would be back where he started. At one point while living in a group home he started going back to college and finished a five year degree in architecture. That was in 2006, when the economy tanked. All the architecture firms were laying off people. He had lots of wonderful interviews but no one was hiring. That led to more drinking, going off meds and two hospitizations. This is the way it goes. He has to be brought in by the police, usually for doing something violent . This last time he bashed my head into the microwave. He is angry at himself and somehow ends up blaming me. He was hospilized for two weeks and this time his doctor and my husband outlined a very detailed self improvement plan. He was willing to do anything this time to improve his life. We were resistant to allowing him to come back to the apartment we had provided him. He has been back fo five days and has complied and is reengaging with his treatment plan. It’s an ongoing challenge to keep moving forward. The goal is to establish clear boundaries and expectations. Establish a relationship with a good psychiatrist with admitting privileges to a psychiatric hospital. If you can keep insurance coverage,or work at getting SSI or SSDI and Medicare or Medicaid. Connect yourself and loved ones to NAMI or Thresholds if you live in Chicago. It’s so hard and so labor intensive, but it can lead to stability of the family unit. Sometimes I do feel as though I would like to wash my hand of the whole thing because the stress is overwhelming. I do know that would lead to homelessness in most cases and it would be even more difficult to get them back to stability. I have decided to keep moving forward to help my son live a stable life. You can find solutions but it really take knocking on a lot of doors until one opens…. My heart goes out to all of you. Take a deep breath and I just want to encourage you to try to make a plan and stick to it. If you work the plan in a calm manner, things will improve. God Bless

  27. JULES says:

    My sister came back from Iraq, after hotel was bombed while she was asleep. This was 10 years ago. She suffers PTSD and is delusional now, thinks I work for FBI and two months ago left my mothers home. We found out after 2 months she is now in New York, we live in Dallas. Someone called us saying they found her on the stairs of a church. They wanted us to pick her up, we said she won’t get in car with us, she thinks we are after her. The system is broken, we can’t do anything for her, she was a Dallas police officer for 12 years. Are family is drained, we pay for hotels, extended stays because she moves every 2 months.

  28. DORIS says:

    My son had early onset Schizophrenia diagnosed by 14, he is now 49 years old. I feel like I tormented myself for years, with is there a better treatment, if only if only. He is in a state nursing home for mentally ill. I am only now getting to a point that I can say this is how it is, I am thankful he has a place to stay and medication. It changes your life and your family’s life. The only people who come close to understanding are members of NAMI support group.

  29. Mia says:

    I feel for everyone. My son is like so many at 17 he tryed crack. That was the begining of it all. He was hospitalized in out of jail ect, then Progress . Made it through college, he beagan to party with his fraternity. Not good…fast forward he had a hard time finding a job after college. He stayed with us, trying to help him not to become depressed. At first it was so nice we set ground rules..we had a son we enjoyed back. Well short lived he decided to self medicate he said for sleep. He is 31 by the way the youngest of our four. He got a job and a apartment after a stress full time in our home. We have no idea the trigger now I am sure drugs, daily life. He has threaten to kill me and then his father he states we took everything from him, his wife, kids, nice house etc None of such things he has ever had. He now is ranting on social media crazy things also stating soon he will destroy anthing we care about then us. Many of you have seen a paranoid schizophrenic on drugs in full rage mode, its amazing how strong they are and nothing nor can any one reason with them. My son is over 6’2 fit and studied marshal arts.. we never have been a target . I can not get anyone to intervention I called all the police in our county. No help. People say from his post he is not sleeing or really eating but smoking and drinking isolated. We belive the threat, we feel like sitting ducks.. what can we do. I am so lost I feel, I lost a son, I hurt seeing him suffer, but then terrified. I do not see how this can end good. Ideas any one. The police said they can not act on text or social media rants. They said it will do no good to get a restrating oder. We are so lost what do we do.?

  30. Melissa says:

    ErrantSkye- Thank you so much for your honesty. It’s very helpful to me since I’m currently dealing with my 28 year old son who refuses help. I’ve had to crush his pills and make him drink them, just to make sure he takes his medication. When he doesn’t, he goes off the deep end and is destructive and aggressive.
    He’s been arrested several times due to vandalism and intoxication in public. He often self-medicates with drugs, alcohol, cough medicine, or anything he can get his hands on. We let him move back home about 7 months ago and it’s getting worse everyday.
    He’s emotionally and mentally abusive to me, not to anyone else. I believed for so long that since I’m his mother he felt that my love would continue, in spite of his abuse. And, he’s right, I will always love him. But, at this point, I think it’s best for my safety and for him if he leaves.
    I worry about him because he has nowhere else to go. The rest of the family has tired of helping him and have basically abandoned him. I worry that, as a homeless person, he will be hurt or killed. I don’t know how to reconcile that in my mind. I don’t know how to let him go and live with myself if something happens to him. At the same time, I’m worried I won’t live much longer if he stays. He started threatening my life and threatening me with bodily harm. There has not been a situation yet in which he’s harmed me, but he breaks my things, punches my car, cuts my clothes, etc.
    After reading about your struggle and how your family made you do it on your own, gives me some comfort in knowing that I’m not a crappy mother for making my son responsible for himself.
    Thanks again for sharing with us. You have no idea what that means to me. I have no reference w/this illness, I’m so lost.
    Best wishes- Melissa

  31. Ryan McFadden says:

    I am 28 and started becoming “schizophrenic” near the end of 2012. I was diagnosed with ADHD as a child, then depression, then anxiety, on multiple medications, which all stopped at 18 when I started smoking marijuana and nothing else. I have used hallucinogens, acid, mushrooms. I tried heroin and meth once. Curiosity, nothing more. I smoke pot daily as my means of medication, no other drugs, very little use of alcohol. My issue is, I think schizophrenia is misunderstood, maybe it even exists on a spectrum, as does autism. The voices I hear in my head sound like they are thoughts of me coming from other people. Mostly negative, sometimes positive … I live with my dog in a tent…Schizophrenia is misdiagnosed. All wounds of the spirit and mind can be healed with love and understanding. Walk up to your afflicted and tell them you love them and together you will beat whatever is hurting them. Send them good thoughts and emotions, hug them with your mind. You would be amazed.

  32. Subird says:

    Hi Michelle,

    I don’t know if you will get this 2 years later. Please have your son tested for Lyme’s just to be sure. It can attack the brain, joints, heart, anything. There are also co-infections such as Erlichia. A kid this young seems to me at least the possiblity of infection should be considered. I had good luck with Cowden’s Protocol, a group of rain forest remedies. It shoud be overseen by a praticioner. Lyme’s is well-understood on the East coast but elsewhere in the country doctors seem to discount it

  33. TR says:

    I have a 21 year old son who was diagnosed 1 year ago with schizophrenia and bipolar. The journey has not been an easy one, watching him go through manic episodes and calling the medical screeners and police to calm him down. Eventually he just ends up in the hospital for 2 weeks and comes home to repeat the behavior. He has been admitted to group homes, only to be kicked out and also shelters which he bass left on his own a d walked back home. The dark circles under my eyes from crying and lack of sleep are proof of how tormenting this is.

    The last outburst or episode my son had was the worst in which he began yelling at the neighbors and walking around town paranoid that someone was after him. He told the screeners that 100 people were in his room and wouldn’t leave. The 1st time he referred to three imaginary people!e who were not so nice and dominating his life………….horrific.

    The medications didn’t seem to be working, but I think there may finally be a light at the end of the tunnel. He is now receiving the injection Invega Sustana and taking resperidone and lithium. Unbelievable difference and now I can talk to him like nothing is wrong. hallucinations are gone, still some paranoia but not as severe, anger is gone and he spends less time baracaded in his room. I truly hope these meds are the answer to helping him in his long journey to coping with his disorder.

  34. Randye Kaye says:

    The right medication and treatment can most certainly make a difference! I’m so glad you seem to have found the right combination.
    Randye

  35. Eileen says:

    My son is 30 years old he was always very active in over the top kid when he was around 17 I started seeing differences so I guess maybe I was in denial in high school we started getting in trouble and drinking and using drugs started getting arrested it going to juvenile detention center he was stealing he want of going to prison at the age of 18 he was very defiant they kept them in isolation most of the time they would not let me visit him when he came out he was a totally different person he was in there for 3 years he was in there for punching a boy in the nose. I was a single mom and didn’t have a lot of money to hire a lawyer we really got railroaded it is been very very hard as you all know have done everything I possibly can he has terrorized my home and my daughter I got to the point where I was terrified of him and even me having him home he wouldn’t take his meds or he would take his meds and abuses meds are abused drugs she did end up getting on disability so it gets a small amount of money every month even when he lived at home he just would regret I would try to get him to get involved in things Boley is a program here in my area for the mentally ill I had them set up in an apartment and he didn’t want to go he would smoke cigarettes and drink sodas all day isolate sometimes not eat stay up all night scream scream at the neighbors scream at people on the streets he also ran out into cars when he first came home from prison I tried to talk to the Mental Health math straight to having committed I’ve done so many different things I’ve called mommy I don’t have a lot of money and they wanted money for bridges stration and different things most of the meetings and things don’t coincide with my schedule as I work I have a support system for a minute 12 step recovery group I also went to Al Anon meetings which helped but after all these years and seeing the struggle that me and my daughter has been through I feel it’s time to save our lives I got a restraining order against him because it became unbearable because of my couch and throw my things away I was afraid he would get physical with me or my daughter my dog who is a 90 pound chocolate lab is terrified of him I know it’s not really him because his true self is a beautiful soul he always was and always will be but in this life he has this illness but I had to let him go and he is now taking a bus somewhere he does have a cell phone any calls me that can’t let him back in my house not after all the opportunities he’s had to go into housing and different things and he refused I know how terrible this can be but I do believe you have to take care of yourself first I will not feel guilty because I didn’t cause this I can’t cure it and I can’t control it but I can live my life I can pray for him it’s hard to let go but today me and my daughter have peace in our life we know that he is in Gods hands and whatever happens is way out of our control I guess having faith has helped a whole lot it is too bad our country doesn’t have more help for the mentally ill it is really deplorable my prayers to all of you and know that you’re not alone but I do believe that you need to take care of yourself if everyone suffering then if you don’t have to suffer what is the best what’s the best for the overall good I had to get to that point I’m so sad this disease has happened to my son but I know that he would want me to live a peaceful and happy life his true self thank you

  36. Elleen,

    I am so sorry for your troubles. It sounds like this has been a long and excruciating process with your son. You are so right: you need to protect yourself and your daughter! You cannot help your son at all if you allow him to harm you or ruin your life. I can’t imagine how difficult it must have been to get a restraining order, but setting a boundary like that to protect your family is sometimes the only solution. I am glad you have found some modicum of peace. Again, I am so sorry.

    Take care of yourself.

    Blessings,

    Taylor

  37. tuya says:

    hi,TR.
    my name is Tuya. i have son who is diagnosed schizophrenia a year ago. My son was best son I ever have,but now he can’t concentrate for anything,he changed all . i am glad your son find right medicine, my son is now 7-th medicine. i am not sure it’s right for him. he is talking ziprexa 10 mile grade.I wish is there any hope that makes ky son back. i am so emotional today, sorry, thank you for listening to me.

  38. Dennis Wilkinson says:

    My adult stepson (28yo) was diagnosed schizo-affective, bipolar along with a couple of other things 7 years ago. He has been hospitalized three times over that time span the most recent about two months ago. My wife and I have a difficult time with him taking meds as he is non compliant and is in denial about his condition. He sometimes gets verbally abusive towards my wife and I . It unnerves my wife and I tell him that his behavior won’t be tolerated but there is no negotiating with someone who isn’t all there. It has made our lives hellish. I have and do go through a wide range of emotions and pray that my wife and I do not fall victim to my stepson behavior. I have spoken to my wife numerous times about group homes for him but she is resistant. I understand this is her flesh and blood and I have been in his life since he was 6 yo. I am not dismissive of my stepson because of his illness but the older he gets the harder it gets dealing with him.

  39. Christine says:

    Dear Randye,
    Thank you for your article. Your son must be 34 or 35 by now, as you wrote in 2011. I hope he is still doing well.

    Thank you for giving some practical advice and a place to write our story. It is a relief to be reminded that NAMI is a support group. I’ll add that in my area (Northern Virginia), they also have information meetings. Reading about other people’s comments helps me feel less alone, too.

    My ex-husband was abusive to the kids and me, so we separated and were divorced by 2011. My son stopped attending school just after my ex coerced me into signing a document that my son be required to attend counseling with his father (my son completely refused to attend visitation with his father on weekends or Wednesday nights). I should have gone to court and faced charges that I “was not supplying our son for visitation”. Would a judge have really expected me to pick up my 14-year old boy and somehow drag him to my car and drop him off at his fathers’ apartment? The social worker told my son he was a jerk and that he should behave and attend visits with his Dad. My son shut down. I took him to a child psychologist whose reputation for really helping kids preceded him. My son was diagnosed with early onset Schizoaffective Disorder or Schizophrenia at age 14, in 2012.

    My son was having trouble coping with life. He began staying up all night and skipping school to stay home and sleep. If I took his computer, he’d complain he couldn’t do homework. When I gave it back, he didn’t do homework. When I took his computer, he’d find other electronics to amuse himself. I’d take those when I discovered, but he still stayed up, then home the next day. Finally, after meetings with school officials, a truancy officer, lots of therapy, refusal of suggested medication, diagnosis by a child psychologist and a child psychiatrist of Schizoaffective Disorder or Schizophrenia, hundreds (thousands) of dollars later, and a visible decrease in overall functioning, I took my son to a mental hospital. We (his father and I) were told he had an undifferentiated mental illness after a week of inpatient and several months of daily outpatient treatment. My son was given some reprieve from contact with his father and the psychiatrist prescribed Abilify. My son took it very reluctantly for three days. During the three days, my son lost his sarcasm, wasn’t out of control angry or breaking things or hurting anyone physically, wasn’t talking to himself or pacing non-stop. He even slept at a decent hour and was able to attend school. He refused to take more medication, saying his stomach hurt and saying, “I’ve been besmirched by having to take these” and eventually his psychologist said my son stopped talking altogether after months of grandiosity, sarcasm, obvuscation and denial that there was anything wrong with him.

    I could find no other reasons for my sons’ behavior. I found no drugs ever and there were no visible signs. My son was eating everything. I chalked it up to being a teenager. I sought and got an IEP (Individual education plan) for school. It severely reduced his classes difficulty. His classes were team taught in the special ed department. My brilliant son highly resented his father and my intrusion into his education plan. He finished his freshman year in high school. A school psychologist also tested and diagnosed him with schizophrenia shortly after his hospital release. I had my son tested apart from the school and the child psychologist and psychiatrist who diagnosed him through cognitive interaction. Both the school psychologist and a separate psychologist evaluated him by a series of tests, both resulting in a diagnosis of Schizoaffective Disorder or Schizophrenia.

    My son successfully completed his freshman, sophomore and junior year. His father and I signed off on his IEP, allowing my son to take whatever classes he likes. My son convinced us to let him take 4 advanced placement and three honors classes. He explained that each year he’d had to take lower level classes, he felt cheated of a good education. He is extremely intelligent, so he was really resentful and frustrated. We said yes. He got 5 A’s and 2 B pluses first quarter. He worked so hard. He got little sleep. I tried to convince him to drop back some of his levels, but he kept refused. A week or so into November, he stopped attending school. I went to Senior Parent meeting and looked for scholarships he could apply to. I encouraged him, suggested he talk to his school counselor, the college/career counselor, or someone else. He kept skipping. Soon there were school meetings, accusations and emails to All about my not getting him to school, calls to the local emergency mobile crisis unit, truancy threats, meetings with his counselor, the school social worker, the vice principal, meetings at my apartment with the mobile crisis unit, a coouple meetings with a probation officer, and now a probation counselor, letters and emails, follow-up calls from to to all outside mental health help I could find. I was turned away repeatedly after describing his symptoms. CR2: “We don’t take teens with schizophrenia. We deal with truancy, anxiety, depression, really serious issues. Call Mobile Crisis.” “We can’t take him because he is not a danger to himself or others. Try First Response” “We can’t enter him into our program because his first onset was longer than 2 years ago. The grant limits the study to 2 years. You need to try CR2. Have you taken him to the hospital to be evaluated?” “We don’t think he has schizophrenia. We don’t like labels. Be very careful of labels. They follow you your whole life. We think he had bipolar with psychotic features. Call us if he becomes dangerous to himself or others. We can take him then.”

    My son is mostly non-communicative, angry, rude, arrogant, delusional (he’s skipped all of second quarter and half of third quarter and insists “It was a conscience decision. I already told you.” And he maintains that, “I’ve never been worried about graduating!” and, “I can catch up if I choose to!”) His classes are reduced to the two he absolutely needs for graduation and two more that he insists on keeping to “Make it worth my time.” (to attend school). He refuses to attend most days and has done no work in or out of school since 1st quarter. The vice principal wrote to All, suggesting he drop back further to just the English and History class he needs for a general diploma and forgo the Advanced diploma requirement of the one elective (my son insisted instead on Advanced Calculus and Advanced Physics to replace the one required elective for the advanced diploma.)

    My son won’t attend. His father is now blanket emailing ‘All’ that the school counselor talks with my son about community college classes to encourage him that he can transition to a 4 year college. I have already done this many times. Many questions, lectures, walks, drives, silent waiting (hours of listeningand waiting), encouraging words, stories of his wonderfulness to him…and my extended family has included him and treated him like normal, trying to love, guide, urge, hope for, support him towards movement, forward motion….

    My son won’t attend. He has Schizophrenia. He paces. He’s 6’4″ and handsome. He eats everything. He cares about no one, but the guinea pig I bought to hopefully draw him out of his room. He isolates. He talks to himself in his room and in the shower. He showers until the hot water is gone, and only when he smells badly. He does not help in any way around the house. While he rarely physically scares or hurts his younger sisters or me anymore, he is rude, abrasive, arrogant, insulting, selfish, stays up all night, sleeps most of the day, only leaves the house to visit his grandparents or older sister with me, refuses access to the truancy officer or probation officer to our home, leaves dishes in his room or in the sink, dirty clothes on his floor, refuses to take out trash or recycling, refuses to talk about his plans, commit to attending school, refuses to drop down to the two required classes to graduate, insists he won’t attend community college, insists he will attend a 4-year colleg next year, won’t attend any visitation (I can’t blame him for that one as his older sister refuses all contact with her father) though his younger sisters go. There’s more. His thoughts and arguments are circular or non-sensual altogether. Several of his teachers emailed me regarding their concerns. They said he asked many long questions that made it clear he did not understand his Calculus AP BC class or that he was a great contributor in class to discussions, but that they missed him. Many offered extra help, tutoring, to disregard old work, making up only essentials. Others said the class required all work be done, as in math or language.

    We are way part that. I’m a single mom of a 20 year old community college student coming home to live in 2 months, and attend a nearby 4-year college to finish her degree in 2 years. My son is stuck in limbo. My younger girls have their own issues that include scoliosis, asthma, anxiety, depression, warts, the need for braces. In spite of my sons’ issues seeming to supercede their needs, they keep working hard and getting As and Bs in school. I know I’m really blessed with great resilient kids. While I balance a full-time low income job, little child support, applications for medicaid, bill paying, house chores, my son’s 18th birthday arrives in less than one month.

    After reading your article and the comments, I know I need to go back to NAMI for support. I need to seek SSD for my son. I need to insist on family rules. I’m exhausted most days. Lately feeling defeated. I can’t quit because they need me. I promised myself and God years ago I’d not give up by committing suicide, so that’s not an option. I’d use humor in this, but it’s just too serious. I include it in life, listen to great music, notice things like the smell of the air after the rain and the changing sky and seasons. I see the beauty in my children and feel appreciation, gratitude and deep love for them, other family and friends. But this: Schizophrenia. This convoluted, irrational, illogical, mean, destructive destroyer of my wonderful son’s life…I can’t wrap my head around it. After watching him from birth to now: seeing his lifetime of eccentric, creative, behavior, knowing this man-boy is the one who picked one of every flower and carried them all home for me (bouquet held in his teeth at age 10) while riding around our neighborhood on his bike, the bullying he took because he was different, the hundreds of walks he and I took alone after dinner so he could talk and talk, the poem about fishing he recited and acted out and the poem for me that he wrote and recited before his class and their mothers, the time he taught me chess and all the matches I’ve watched him win, the time he surprised the entire school (and us) with the most amazing and dynamic surprise performance of Ray Charles at the 6th grade end of the year talent show, the painting he did of himself standing alone in the snow that I have framed and hanging in my dining room, the many times I watched him play gently with animals, his extreme kindness to younger children, his volunteer tutoring kids in STEM summer school, his respectful intelligent conversations with people a generation or two older than he…is reduced to someone who prefers wearing shorts and a holy tee-shirt in winter, who stops mid-sentence searching for a simple word, and seems fragile in mind and heart. I see him curling in on himself, false braggadocia, or does he really believe he is ok and that, “There is nothing wrong with me. I’ll let you know when I need something.”?

    Will he come back from this psychotic break again, as he did eventually with the first? I’ve researched Schizophrenia. He needs meds, cognitive behavioral therapy, structure, care, reinforced rules, positive people. He isn’t acceptin help. I feel like a helpless victim of this mental illness. It is continuing. There is no reversal of the brain damage done already by this progressive illness. I know that the twin studies in the UK showed success with medication, and the loving and supportive co-habitation of the twin. But, the illness frequently has anosognosia in 50% of those with schizophrenia (or bipolar) with psychotic features. I know so much, and so very little.

    I want my son back.

    How do loved ones keep going? Really?

    Christine

  40. Randye Kaye says:

    Hi Christine,
    yes , Ben is almost 34 now. We are lucky – is a good phase right now. After years of baby steps, our Ben is employed, on his meds (reluctantly, but we supervise) and is getting his life back. This did not seem possible to me years ago. It still can all go away in 2 days if treatment stops. This is why we work so hard to advocate for our rights as family members.

    My hear goes out to you. I have been where you are -and know we might be again, if Ben decides to stop treatment. We live life with fingers crossed. This is why I wrote our book ,”Ben Behind His Voices” — to show what the family goes through, and how to find support and education…and hope, against all odds. Have you taken NAMI’s family-to-family course? it was so helpful to us….
    i know it is so hard.
    Randye

  41. Rika says:

    Hi Randye, I am really speechless, while reading everyone’s sad stories, I think you are the bravest people I know. I’m 40, never thought that this illness were this bad, I started dating a man for over a year now, his son is 28 and still living with him. He asked me and my daughter to move in with him, which we did, I really like this man, his son is everything you mentioned but I was told that he only have depression because of his mother’s passing, but the last 6 months became unbearable to live in the same house as he is. He attacked his dad the other day just for nothing, his dad were shouting for me to help, and when I got there he was busy strangling his dad, if I weren’t at home it could be worse, I lost my cool and for the first time I shouted at him because I could not believe that a child can even swear at his own parents, what about strangling them, so ever since his ” true colours” is showing 10 times a day, He don’t want to work, watching tv, and having druggies over and partying during the night and during the day he sleeps, one morning we got up, and 2 of our tv’s were missing, my daughter’s room windows can look onto the street and she saw him and someone else carrying the tv’s, but thought its his own tv and went back to sleep, it wasn’t, he pond the tv’s for drug money and cut all our other tv’s courts, I couldn’t believe it and when his dad confronted him he just denying stealing it, he also took a lot of other stuff during that week. I don’t want to live like this, he hates me and my daughter and he lives like a pig, he is calling us horrible swear words 3 -5 times a day, just without any reason, it doesn’t help if his dad tell him not to speak like that, I have to clean after him, I have to hide my laptop and take all my expensive gadgets to bed with me at night, my daughter has to lock her door every night and in the afternoons when she got home from school. He told my daughter 17, that she is clever to lock her door otherwise he would’ve been killed her long ago.. can you believe, we all walking with pepperspray in our hands in the house, just for incase. My daughters matric exam is starting soon, and I’m so worried. Although me and his dad love each other and get along so well, I don’t think I can put up with this, don’t think he will ever accept us, or know how too? Do you think he will ever get his own place? His dad told him he will get him a flat but he refuse to go, and to make matters worse he asked a stripper married girl with a 4 year old boy to move in with him in his room, she is living here for 3 weeks already, not working. We told her that she can’t stay here but she just ignoring us, we are too scared to force her to leave, he will probably kill us. What would you suggest I do? We do? This is really not the life I want, I don’t like conflict even. This is abusement. We told him once that we going to send him to rehab, he got beserk, throwing stuff, breaking stuff etc. Can’t even describe everything he did. Please I need advice, oh and he also on meds but only when he wants, don’t listen to anyone, and drinking alkohol and using drugs, talking to himself and also telling my daughter that his late mother is in the house and the devil is his friend and is also in the house etc. Help pls. Maybe me and my daughter should rather move out. But what if he strangle his dad again? So scared….

  42. Kristin Boyce says:

    My 25 year old son with schizophrenia passed away 20 days ago. We have been through pretty much everything you all have mentioned. At the end he lost his life to what I believe, he digested meth. He had been clean but slipped every 5-6 months. This time apparent he googled digesting meth. I was a helicopter Mom, doing everything in my power to keep him safe while running a company. I am 49 years old and had to go to rehab for alcohol due to the stress. I now have 28 months sober which I’m proud of. He developed spasms the last 8 weeks of his life to what they told me was mylocolumus. He was in so much pain and I think he self medicated. Kaiser blew me off so many times saying it was withdrawl from depakote. Kept saying it was a mental issue and we kept telling him it was a physical issue. Due to his chart every time the evaluated him for a hold. They never even looked at his spasms. 2 weeks before he passed I took him to ER. He said he felt like his insides were dropping and had no impulse control. I begged them to admit him saying I couldn’t keep him safe. They refused and told me to call his GP on Monday. He was so upset as I was. They scheduled him for an MRI two weeks later and he died 5 hours before the MRI. I’m not sure until we get toxicology report what happened but I think he seemed relief. They gave him flexeril and klonopin for the pain. This went on me calling, begging etc for 8 weeks.
    Now my beautiful son is in a box next to my TV room in his bedroom. I never got answers on anything. Never could find who his case worker was. He was on SSI which meant he had state healthcare. I finally decided to pay 400 per month plus I added him to my Atena at work. Everywhere we had to fight just for help. They over medicated him and he was so sweet he would just do what they said as far as meds. I believe the meds may have caused him MS. His spasms came on fast and from what I read Zyprexa and depakote can cause it. I’m devastated but wonder my God how much more could we handle if they tell us he has MS. He went from a popular handsome straight A student to a sad, depressed, no friends young man trying to find his way in this world. We never gave up. All I can say is mental health laws or help needs to change for young bright men and women. If I do when a settlement for his case, which I’m pursuing, I’m going to set up a foundation called Shiloh’s Foundation that will bring help to families and young adults help under one roof.
    Don’t give up, We never did but God had his own plan

  43. Linda Imhof says:

    Randye I am so happy I found this website. I have a 37 yr old son who was diagnosed with bipolar in 8th grade and has struggled most of his adult life but managed to finish college with honors and worked in pharmacutical but has had set backs and episodes in between. My 30 yr old on the other hand was diagnosed around the same age with major depression, (which his father has) but started getting bought a of psycosis at age 16 and struggled to finish school dropped out of college 2twice and has gotten progressively worse over the years with drugs that have made h worse and has been in and out of hospitals With a diagnosis of schizoeffective or schizophrenia ir major depression with psychosis depending on what doctor he is seeing at the time. Last year after being on countless meds that gave him horrific side affects and did not work a dr started him on a new Ned called fanapt. Despite some nasty side affects within a few months I felt I had my beautiful son back! With the help of a local organization he has been living in his own apartment for over a year, but of course with mental illness nothing lasts and he stopped meds due to gaining a lot of weight, causing high blood pressure as well as other physical problems and now he has been in and out of short term facilities, in and out of psycosis and was recently put I. A state hospital for refusing meds and saying there is nothing wrong with him. Life for my family and myself has been like an up and down roller coaster and has taken a toll on all of us! I did go to a nami family to family last year in my area which was helpful and met parents going thru the same things as me and my family and I still keep in touch with 3 gals from the group unfortunately there is still no relief from such a devastating illness

  44. Kristin,
    I am so very sorry for your loss. You sound like you are a wonderful mother who did all she could. I am so very, very sorry.

    Blessings, peace, and prayers,
    Taylor

  45. Melanie says:

    I have been studying the subject for 10 years now. My mum was diagnosed at age 55 but must have suffered symptoms for years before that (depression and being a bit weird). From that moment on my life has changed since I can not stop thinking about her. My personal life and my mental health is deeply compromised by that. I really struggle to enjoy my life in any way while she is suffering….I feel I have to do somehting but can not do anything. How can you get that thought out of your mind? She is now living in a psychiatric ward – after the last 20 years have been like a movie/nightmare…..but you all here can relate to that. People there are total Zombies, the meds are just Killing them slowly. I got my mum off all meds – but it is just a matter of time when she will worsen again and be forced to take the meds again. And that transforms her into a Zombie in 4 weeks – we had gone through all of that twice now already.
    My research for the last years has brought about one fact: IT IS THE FOOD!!!! Many people got better on raw food or at least on a diet that is vegan and gluten-free. No animal products and – so so so crucially important – no grains of any kind. No grains. Not even so-called-gluten-free-grains as NO grain on earth is actually really gluten-free. The gluten-substances in other grains have just different names. Research THE GLUTEN FREE LIE. Also please please research Dr. Peter Osborne of the GLUTENFREESOCIETY and also Dr. Kelly Brogan a N.Y. based Psychiatrist who gets people immediately off all Meds (because they are deadly) and then gets people immediately off all DAIRY and GRAINS. The successes of those people are overwhelming. I have no control over my mums eating in that ward of course and I have no money to get her out of there and let her live with us – so I can not do anything about that. BUT if any of you can change the diet of your loved one suffering from Schizophrenia then please do it now. People report incredible miraculous changes in the matter of 2 days! Google Victoria Everett and Google Schizophrenia on 30BananasADay. I know – it seems crazy . but in fact IT IS THE TRUTH. Change the food and the illness will disappear. Many have experienced it. Again: Dr. Kelly Brogan and Dr. Peter Osborne. There is hope!!

  46. Sherry says:

    Hi Christine,
    I am right there with you and most of the people on this blog. I am a Registered Nurse with 25 yrs of ER experience, so I am well versed in mental illness. Although, it is a totally different thing when your own child has it!
    My daughter, now almost 28, was diagnosed with Borderline Personality at age 17, after running away at age 16, then overdosing on Risperdal at age 17. Another very bright student. She went to private schools all of her life. She began cutting at age 16, hence the BPD diagnosis. When she turned 18, she refused to go to Italy with us, got tattoos, and started working in a strip dance joint. All of the things we wouldn’t allow her to do. Plus smoking, which I believe started earlier. At age 19, she ran off to Las Vegas to marry a guy she met in the strip joint! I found out by the certificate that came in the mail. Since then, she has lived in many places, growing ‘medicinal’ pot, getting arrested in TX at age 21. She has been estranged from her husband for almost 5 yrs because he couldn’t deal with her anymore. I blame him for getting her into the pot world because it’s been an even worse nightmare for me to get her out of it.
    She has been going downhill since their split up. I recall on Father’s Day in 2011, getting a phone call from him saying that she had a gun in her mouth and he was afraid that it might go off accidentally. They were 500 miles away, so nothing we could do but worry.
    She has lived with me off and on, and has couch surfed since then. She has been arrested for DUI, driving without a DL or car registration, and has never gone to court. She believes she has presidential pardons. When she had money a few years ago, she went to Egypt! It only lasted 3 days. She said she needed to read their hieroglyphics for them. We talked to the US and egyptian consulates, who kept an eye on her. Prior to this trip, I called to have her passport reported as stolen, but she was able to go anyway. The next year, she went to Israel, to fix their borders! She went on the same passport that I reported as stolen!! She was also able to take her dog as a service dog, without any service papers! She is quite cunning. She has been to Canada and Mexico to fix their borders also. She has been kicked out of Federal buildings for trying to talk to someone in charge. I wish she could’ve been arrested; what a sad thing to wish for your beautiful daughter.
    I have had her committed twice to no avail. She is cunning and lies her way out in short order, without treatment. This last commitment lasted a week and she allowed my husband, her step father, to get info from the doctor, who told him that she is schizophrenic. We were not surprised and happy that she finally got a diagnosis, although she may have had it before and we were just not privy to that info. The psychiatrist wanted her to receive treatment because she was so delusional, but the laws allowed her to get out! Now, 6 wks later, she does not have contact with me because she doesn’t trust me anymore. She is somewhere in Northern Calif. without a home, car, or job. We tried to tell them that she is ‘gravely disabled’ which is one of the criteria for keeping her committed, but she conned them again. She has lost almost 15% of her weight this year, and she was thin to begin with. She is very pale.
    I am so angry with our system for me losing my daughter!!! I cry every day, and am trying hard not to drink alcohol, because it only worsens my mental anguish. I have, and am, going to NAMI support groups and have an appt with a psychologist next week.
    All of this, and I also have a husband (24 yrs now) who is bipolar and has been on meds for over 10 yrs because I threatened to leave him (he was losing jobs every 2-3 months!) His meds don’t seem to be working and he has been yelling at me and everyone else lately. Really, a person can only handle so much! He does have an appt next week also, to get his meds checked (I made the appt), so we’ll see how that helps. He has had this job for over 6 yrs and I don’t think I could handle him losing it. I am usually the rock that holds everything together in this family, but I don’t feel so strong anymore. I put on a good face to all who know me, but inside, I am dying!
    My question to this group is: Can I get my daughter on disability now that she has a diagnosis? I want to set up some sort of way for her to have a weekly allowance so I won’t be so worried about her not getting food and shelter. I even thought of paying for a motel 6 for her to live in. She suffers from anosognosia, as do most people with schizo or bipolar, so she wouldn’t dare want to apply. Thank you!

    PS, Kristin, I am so sorry for your loss! My prayers are with you and all in this mental illness merry-go-round!

  47. mandy says:

    My daughter has this terrible disease also she hides it from the family we had no clue until she landed in the monash physciatric ward we were so devastated we didnt know what to do shes clever she told them she had ice and they released her ten days later..she has my 7 yr old grandson fools them all then at night I get all night on the phone you whore u crack whore Im 65 shes 41 yrs old there are things in my wall stop doing this to me hacm,king my phone net ect it is so tiring we do not know what to do as she is 41 she has banned us from her medical records ect we help with grandson driving to school groceries anything we can what can we do her dr wont help us she has him conned as well cheers

  48. Rae says:

    When my son was 12 I had to send him away to live with his Dad because he was physically and verbally abusing my youngest son. He also thought that I was trying to poison him and became very paranoid of most everything. When he started living with his Dad he started doing the same thing to the brother there. We admitted him and he was diagnosed with paranoid schizophrenia. He did pretty well being on the meds and getting therapy. He lived with his Dad for 4 years and our home was peaceful. Last year he stopped taking his meds and began to be very disruptive, so they kicked him out and flew him back home to us. For the last year my youngest son and I have lived in hell. I finally got him to start taking his meds under my supervision, but he is still very paranoid, hateful, verbally abusive etc… My question is how do you discipline him when he acts this way? It seems that he doesn’t remember things he does, and therefore it wouldn’t do any good. Any advice would be greatly appreciated.

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