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Schizophrenia and Parenting: Step In or Let Go?

May 31, 2011 Randye Kaye

I have an adult child with schizophrenia. Parenting is about the precarious balance between stepping in to help - especially where mental illness is concerned.

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 Without Parents

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.

Parenting My Adult Son with Schizophrenia

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.

APA Reference
Kaye, R. (2011, May 31). Schizophrenia and Parenting: Step In or Let Go?, HealthyPlace. Retrieved on 2022, November 29 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go



Author: Randye Kaye

Carrie
September, 2 2015 at 7:40 am

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.

Randye Kaye
August, 31 2015 at 10:11 am

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.

Rita
August, 29 2015 at 6:07 pm

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.

Donna
August, 13 2015 at 11:48 am

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.

Jean
August, 2 2015 at 11:56 am

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.

Broken
August, 1 2015 at 5:22 am

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.

Amy
July, 26 2015 at 7:31 pm

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.

Helen
July, 14 2015 at 11:46 am

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!

Alice Fuso
May, 28 2015 at 8:56 am

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...

Amy Henry
May, 1 2015 at 2:28 am

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?!?

Diana
November, 20 2014 at 4:02 pm

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....

Lee Smith
November, 2 2014 at 11:49 am

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.

errantskye
September, 28 2014 at 9:43 am

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

In reply to by Anonymous (not verified)

FOG
June, 19 2020 at 11:36 am

Errantskye, I hope you are doing well. Your post did help me. I've tried everything to help my Sz sister. She blames me for her decisions. I have to walk away and let her make mistakes. It fills me with terror and guilt, but I am not helping, and this vicious circle of chaos and abuse has to stop. I am the child and sister of sufferers, and I try to keep in mind that the illness makes them like this, but there has to be some responsibilities for ones actions. Otherwise how can it change? She will probably succeed in killing herself and I will hate myself forever. There is no winning. I am just sorry for all of us. You sound like you have reached a level of stability through consistent, hard won routine. I know how hard that is, and I just wanted to let you know that you have my respect whatever happens. Good luck and love to you. Emma

Karen Powell
July, 25 2014 at 8:49 pm

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

In reply to by Anonymous (not verified)

Randye Kaye
August, 1 2014 at 3:45 am

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

brianna
July, 18 2014 at 6:51 pm

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.

Joan
July, 9 2014 at 1:33 am

My son is 32 with paranoid schizophrenia. He has been in and out of hospitals 10x in a year. The Clozapine was wonderful for 10 years and he was independent with my help. Then after getting too low on the dosage he was never able to control the symptoms. Now the doctors have him on 3 meds. He believes he's dying even though doctors say he is fine. He has alienated his father and brother who really don't want to see him anymore. I brought him back from the institution and have him at a group home but he can only be there a couple more months. I figure he should have a guardian but wonder if I should be the guardian or an agency. He isn't violent or aggressive lately and longs for me to take him back in. He wants to be in an apartment on his own but I fear I would have to be his full time caretaker and he would become negative and nasty again. He's lost his Section 8 and I really don't think he can handle being on his own. Has anyone tried to hire personal care staff like the staff at his group home to work with him on buying groceries, cooking, making sure he would get to medical appts, etc.? I would like to see support in the community for our adult family members with mental illness that goes beyond group home living and independent living to bridge the gap between them. I think there should be a way to do this using Medicaid home and community based support money. Can I find some cheer leaders to support this notion?

Mona Roberts
July, 8 2014 at 6:23 am

My son was diagnosed with paranoid schizophrenia five years ago after a nightmare of strange and unbearable behavior including threats against me. At one point I had him arrested and Baker Acted him into a facility but they let him go after two days claiming he was fine and my problems with him were simply domestic. In other words it was my fault and I was reaping the problems of an adult child that was raised poorly. I got a restraining order against him because I was afraid of him and he went to live with his grandmother. During his time there he treated her okay but got into trouble arguing with some woman and threw a cup at her. Eventually he was jailed for that because he missed the court date. I simply left him in there before he got into worse trouble on the street. During that jail time the staff noticed he wasn't "normal". He got into fights with other inmates on purpose because he LOVED solitary confinement. Eventually the state, public defender and judge agreed he needed to be hospitalized. Finally he got the meds he needed but it was a long road to get people to listen to me. He is still living at his grandmother's house. I see him every day and he seems to be doing better but he will never live a normal life. He has no friends...doesn't like to socialize and spends most of his day drinking beer and talking to himself but he stopped being violent. People...(family and friends) have stopped being close to me and stopped calling me because the illness is so misunderstood they feel I did something to cause this. They pretend to "understand" when I talk to them about it and then they pull away. I view the world and people so differently now. I don't miss not having friends. People suck. They live in their little lala land world and they sicken me when I hear them speak with their "myths" about life. Some are glad this happened to my son so they can put themselves and their parenting above me.

In reply to by Anonymous (not verified)

Deborah Myhand
June, 15 2018 at 7:50 am

My son has bipolar schrophrizia and probably some they missed.He is the sweetest person you could meet Ive backetactered him so many times I cant count them all.He is Bakeracted right now after the 2nd month in a row to the couryhouse.He has been on ABILIFY for 2 months to no avail itsike it speeds him uo he has add oh and he is 26years old Im so stressed out I wouldnt wish this on.anyone.I believe he dreams and believes them to be true.Im not svared of him .He has this eposide every year he used to take seraquel then I noticed he was really changing Id ask.if he was taking his meds he would become irrate and thats when I knew he wasnt.I called law enforcement which is a joke when it comes to this type of situation.They have told me its my.fault because I keep letting him come home.Well he receives ssi and Im his payee if he were in charf
charge of it people would take advatantage og him.1 time I let him use the card.Im fiabled too but my is anxiety and physical problems.Well I wanted to see if I could trust him big mistake he spent all of his and $200 of mine.I llobe my.son witj all my spul.I dont.know how to place him somewhere to get his mind stable because 2days at the psych ward doesnt stablize him.He has lived with his grandmother my.mom but when he started getting sick she made him.leave.Same thing.with my father.If anyone has any.ideas Im despetate and as to. the person before me shame on yout family this ids not ypur fault or his and this is when you need people who reallyove and care around you.We need to find out if theres a support group for this because like I told my kids when nobody else is there your mom will be.I have 3 kids and he is the only 1with this problem.AND AMETICA HAVE SOME RESPECT WHEN YOU CALL INDIVIDUALS WITH.MENTAL PROBLEMS CRAZY BECAUSE IT HURTS I USE THE TERM SICK. I referfer to him.ad being sick which sounds much better.Thank you any info would be helpful May God Bless you in this situation.

william Geibel
June, 28 2014 at 8:37 am

Look for supportive housing. Good luck, it is soooooooo difficult.

Maria
June, 24 2014 at 7:02 am

Im so glad to read about situations, such as the ones I read today - can relate, my son Chris has schizophrenia and also refuses meds and medical help.He's 29, diagnosed when he was 16, tears me apart to see him so isolated and has no ambition,not to mention his grooming. when he was younger he dressed nice, now thinks clothes have chemicals,etc. also food,cooks own weird food -once he broke down and asked me why this happened to him,and all I could do was console him, and he had a meltdown- I have faith in God and pray everyday for him - has taken over our upstairs rooms, but figure he's safe here not out there in the world. I really wish he could find a simple job he likes and a girlfriend, plus self medicates with beer, but used to do a lot of drugs when younger

Janet Meyer
June, 19 2014 at 4:58 am

My beautiful 23 year old daughter was told in Jan 2014 she has schizophrenia, I didn't quite believe it but she was unable to take care of her 2, 3 and 5 year old children. DSS took them and I cared for them four months while working full-time, it was hard but I love them. Meanwhile, my daughter has not done one thing to 'get better,' and may lose her children. They are in foster care now with a wonderful husband and wife and I see them often. I need to complete an IVC to try to get her help. When she was committed in Jan. she refused medication and they sent her home in five days. It has just gotten worse. Her paternal grandmother had bipolar and her paternal uncle has schitzophrenia and is forced to take a monthly shot. She suffered a severe concussion last Fall and her behavior got worse after that so in ways I want to believe her problem is the roll-over accident not MH issues. Prayer is getting me through. I'm glad to read others who are searching for answers too.

Michelle
June, 12 2014 at 10:35 am

Even though I know I shouldnt promise that but there has got to be some light at the end of this tunnel.Family members have made comments telling me I just need to spank him when he has melt downs or asks the same questions repetitiously.Everyone has the answer to how to discipline him.Especially those without kids.I pray that all our children young and old are able to find peace day to day. I hold and love him on his good days and his bad days.Seems like now because he is young, mom is his safe place. I know that will change one day but am trying to be here to help him get thru his days and nights one day at a time.

In reply to by Anonymous (not verified)

Randye Kaye
June, 12 2014 at 11:09 am

Michelle -
Please keep seeking help - for your son, and for yourself and your family. Childhood schizophrenia, if that's what your son has, must be addressed. My book may be of help ("Ben Behind His Voices")- and also look at "January First" .
Keep learning, keep reaching out for the right diagnosis. It can get better.
Randye

Michelle
June, 12 2014 at 10:19 am

I guess the most frustrating thing is as parents we know when something is wrong and we take them to see numerous people for help.Trying to get some kind of diagnosis is hard. I have heard from different professionals that it looks like ASD, ADHD.Where as other professionals say this is not ADHD.Waiting to see a Pediatric Neurologist.Now with the most recent hallucinations,Im concerned this may be schizophrenia as his dad was diagnosed with that before he was born.The past months have been hell and seemed like a light switch just turned off for him. At the end of the day, I tell him that tomorrow will be better

Michelle
June, 12 2014 at 10:04 am

I am the mother of an 8 year old boy.He was fine until last October when he punched himself in the face leaving a bruise.He started taking meds which then caused OCD and odd behaviors.He was hospitalized for cutting his skin and for grabbing the steering wheel trying to make me crash my car.Changes made to his meds,difficulty in school,slowly getting worse. After complete meltdowns in Dr's offices;he was given Risperdal. Although, i see improvements,he is now periodically hallucinating about a worm that speaks to him and tries to get into his arms.He also advised that it was the same black worm that caused him to cut his skin the day he was hospitalized.They diagnosed him as ADHD with depression.I think this diagnosis is incorrect.My heart aches every day for him as he struggles to have a life like every other child around him.

LeeAnn
June, 9 2014 at 12:32 pm

My intelligent, talented son had a somewhat mild psychotic episode about 8 months ago. His live-in girlfriend called me (they live in another state) and I caught a plane to visit them the same day. There is no mental illness in our family, and my son has always been calm and rational. He has a college education. When I arrived, he seemed happy to see me. He hugged me and was welcoming. He was rather fixated on topics of space and time, however, he was still calm and peaceful. He could be redirected to talk about other things for awhile, although he continued to circle the conversation back to the spce/time topic. When we (his girlfriend and I) told him we felt worried about his mental well being because he was behaving in a way not usual for him, he responded he didn't want us to feel worried and agreed to see a counselor. We went with him to a few sessions, his personality seemed to return to usual, and the counselor believed he was fine and perhaps we had overreacted. Then about two months ago, his girlfriend called to report that he was "delusional" again. I again travelled to their home this time to find my son pacing, and ranting incoherently. He was not happy to see me, didn't seem to recognize I was his mother, and shouted for me to leave. He was becoming angry and agitated, so I left. His girlfriend (they have been together for about 12 years) felt very worried. We contacted the counselor he saw at the first episode, who referred us to a mental health crisis team. They sent police to the house but they were unable to do anything to help. So we consulted a judge. I had to give a statement about my son's behavior. Ultimately, he agreed to check himself into a mental health facility, but once there, they had another hearing with a judge and then sent him to a state mental hospital. While he was in the state hospital, he called me everyday. During those calls, he was calm, rational, and pleading with me to help him get out of the faciltiy. He was only in the state hospital for a week and they released him. Once he was home again, he relapsed into the agitated and delusional state again. This time, his girlfriend just tried to stay calming, encouraged him to eat, and waited. It took about 4 weeks before he regained his usual personality. She is encouraging him to seek treatment, however, this time he is resistant. He doesn't trust the doctors because of the state hospital commitment episode. He will not talk to me now, convinced, I exaggerated his behavior to have him committed. I am so sad and worried about him. He is so bright, talented, and capable. I realize how fortunate he is to have a girlfriend who loves him and is patient and will help him try to get through this. But as his mother, my heart just hurts from worry. I pray he can recover and move forward and even that one day he will let me back into his life. Until then...I wait for and cherish the updates from his girlfriend.

C. Demers
June, 6 2014 at 4:26 am

I have a friend who's 23year old son his ill. He does not want to get help in fear that they will give him medications. My friend is at the end of his rope, the authorities are not helping "until something tragic occurs. He helped his son get his head straight and get a job, which he can never keep because he always falls back in paranoia. What to do to help as a friend?

In reply to by Anonymous (not verified)

Randye Kaye
June, 6 2014 at 5:03 am

Hi - and it's wonderful that you are trying to help. First of all, read back along this thread of comments for some great suggestions. Suggest to your friend that he get in touch with the local affiliate of NAMI for support, suggestions and education.
Find out if any of the local police officers are CIT (Crisis Intervention Training) certified - because he will need that someday. Generally, without medication, his son will keep losing jobs to paranoia. As they say in NAMI "nothing seems to stick" because the illness is interfering with logic that otherwise could work. My book, Ben Behind His Voices, has some great sidebars of suggestions as well as lists of other resources, like the book I am Not Sick I Don't Need Help.
Tell your friend to get all the support and information he can. This is not something we can do alone. The system is of very little help unless we take charge as best we can.
thanks,
Randye

Loni
May, 28 2014 at 10:46 am

I've ever written in anything like this, but maybe I'll get advice I could use. My 23 year old daughter has had high anxiety since elementary school. We noticed it was actually a problem in middle school. Family dr. put her on Fluoxetine and clonazepam, but I think she's self medicating with morphine? Others? Dr. referred her to a psych who diagnosed ADHD and said these scary thoughts of torturing people were normal. Said, "you're not DOING these things are you? Then you're perfectly normal". I don't agree with that or ADHD diagnosis. My concern is what if it's schizophrenia or bipolar. Mental illnesses are so hard to diagnose. What if it's just something she's eating, like processed foods for example? Her hands shake when she gets panic attacks or even nervous about something. She's afraid of people. Can only be with one friend at a time. Panic attacks when she's in groups. Now she's sad all the time. Her dad and I wonder if the sadness is because she doesn't know when her "street fix" for self medicating will come? I don't know what to do any more. I don't even know how to be a mom to this 23 year old any more. She still lives at home. Can't keep a job because of her fear of people so doesn't have a car. She's finally taking her Fluoxetine like she should, but always wants more clonazepam. She also asks her Dad for morphine a lot. Of course he doesn't give it to her (I dole them out cuz he's on a lot for chronic knee pain). I don't know what to do any more.

In reply to by Anonymous (not verified)

Randye Kaye
May, 28 2014 at 2:23 pm

Hi Loni,
wow - it's so hard to handle symptoms like this without professional help - and it sounds to me like the professional help you're getting isn't really addressing the issues. Please know that I am a Mom like you, not a healthcare professional, so the best I can do is encourage you to LEARN, LEARN, LEARN. That's what helped us the most. Have you contacted your local NAMI chapter? The national website, www.nami.org, has lots of info on panic disorders, etc -- and info on what a good psychiatrist is, and when to "fire" one who isn't helping. The Family-to-Family course is a wonderful way to get info and support you need in a constructive, structured setting.
Hang in there, learn all you can, take care of yourself, set limits in your home and have clear (but safe) consequences if not followed.
Reach out. It's too hard to do this alone...I know.
Randye

Vicki Woodward
May, 25 2014 at 2:13 pm

I don't know how to help my son. He is currently sectioned under the Mental Health Act (UK) - he was given 4 days leave but taken back in after less than 24 hours- he has his own flat but says he can't cope without his friend ( who also schizophrenic). His friend was with him for the first 24 hours drinking and smoking weed- against my advice. My son suffers from a delusion that he has tapeworm cysts in his brain and is dying. He has been referred for yet another MRI scan and says he will believe the results but has already had numerous stool tests and a CT scan which showed nothing abnormal. He cannot talk about anything else than dying. He is on risperidone injections but they have made no difference. I despair for his future and he doesn't understand why I don't accept that he is dying. I am at the end of my tether and am trying to function as a "normal" person but it is really getting to me .....

Kari Rice
May, 3 2014 at 11:44 am

I can hardly get through reading all the comments, my heart goes out to all who have their pride and joy they've invested so much love and time with be diagnosed with schizophrenia. My son was 17 when he only started out controlling what he was eating, thinking he was eating more healthy, but it spun out of control and he refused to eat things that did not line up to religious rules. I took him to a Dr who had him do a blood and stool testing, with the stool testing sent to a top notch lab out of state. It returned saying he had 3 parasites, which the AMA said 2 were non-pathogenic. I did research like a crazy mom and found many who said certain drugs together would blast out the 2 remaining parasites, but the Dr. would not go forward with the treatment. Parasites are a root cause of all kinds of problems and it was not until my son was in the ER 2 times, and a psych evaluation hospital that they were finally treated. My son also did not want to take drugs, and it has been a long journey BUT, his traumatic situation (misdiagnosed as schizophrenia), has forced me to see that I also need to change.
Now, years later there is more research and findings on a thing called Methylation also genetic. I'm posting just in case someone else has run out of hope and needs a new lead. Interestingly in my son's case the reason why his genetic code is not healthy is because of pesticide residue in my husband's system. He was an applicator and farmed with pesticides from youth until his 40's. Last year my husband had some tests run using bio-testing scans and guess what, it said there were pesticides in his body over 20 years old. Now my son is avoiding the foods that his body can't process because of under methylation, and his symptoms have gotten so much better. There are supplements that are pre-methylated for this particular problem. http://www.enzymestuff.com/methylation.htm

Tanya Severin
May, 2 2014 at 7:45 pm

I too live in Georgia,my son who turned 18 is schizophrenic and refuses too take his meds. He is on invega sustenna shot ,20 mg of ziprexa twice a day and depacoc 2 pills twice a day well he only want to take it once a day. I hope shot once a month helps but im worried he was in two different hospitals this month and I been praying for him every day. He is starting to show signs of paranoia again and he laughs at the voices. I talked to his therapist he wants me to put his med in his food. I am thinking about it since he doesnt want to take his right dose. Im watching him everyday to see how he does everyday. He went from taking ten mg to 40 a day of ziprexa. Im nervous csuse he not takung enough of his meds.

Michelle Miller
April, 19 2014 at 9:45 am

Hello I wrote last July on here about my.son Jake well he was on the invega shots for8 months then one shot of Abilify.then Jake didn't go anymore so for Sept, Oct,Nov, and Dec was good then relapse started then to the Dr.s again a different one she said bi polor put him on effexor didn't work then low dose Geodon he had to go back in hospital for two weeks put I Cymbalta,klonipin2mg and two 80 mg geodon then I took him to the first Dr that really knew him he upped the Geodon so it worked a little but for about a month now he is relapsing I called to see Iin case he needs to go back to hospital of s bed was available it's a roller coaster we are drained as his parent s we want a miracle as well as for everyone else going through this .you hear and read that antipsychotics are good or bad what is the truth do they really help them ? My son has voices he sees shadows the voice at times it's satan draws demonic pics a heart with horns coming out I of it ? Don't get me wrong he is smart to then the smiling thing odd his thought s are mixed to .so much we go through it hurts how.I wish this wasn't going on when I do look at my son I see him briefly then it's like I lose him then you for letting me.explain a little now just have to find the right drug he has tried Latuda,Serquell, invega,abilify,geodon haldol is terrible allergic to that makes him twitch .oh and N.A.M.I has been good .

tammy
April, 8 2014 at 4:56 am

I am 42 years old. My mother has been a mental patient for about 30+ years. This illness drains our family. I can share so many stories but I will stick to the current situation. My mother is now what I call in her "other world". I feel like it is the result of half taking her medication and drug addiction. I have called so many agencies including her current Psychiatrist for help. No one is helping. The law is preventing us from getting my mother help. Everyone is telling me that she has to voluntariy go for treatment. The only way crisis can take her is if she is harming herself or others. Stupid. We are trying to prevent that from happening. All she needs is a place to rest and get her medication back in her system. This will never happen because she doesn't feel like she needs help. We are her enemy if we dare to mention the hospital. I'm trying to act normal, the emotional stress is overwhelming. Does anybody truly care about mental patients?

In reply to by Anonymous (not verified)

Randye Kaye
April, 8 2014 at 12:04 pm

Hi Tammy,
unfortunately, your story is all too familiar. " Does anybody truly care about mental patients?" I think the answer is yes, but the people who care are the ones overworked, underpaid, and stuck with an antiquated legal system that doesn't allow family members to help. Have you reached out to your local NAMI affiliate? There are ways to "work" the system, and often you can hear some helpful suggestions here at healthyplace.com or at support and speaker meetings for NAMI.
I am so expert, at least not in the academic credentials sense of the word, but I'd say your priority is to get some help for your mother, not to get her to agree with you. Excellent resources I talk about in my book are books like Defying Mental Illness, I'm Not Sick I Don't Need Help, When Someone You Love Has a Mental Illness.
I know how the illness can drain a family. Are you taking care of you??? This is a must, though it seems like a risk. Please know you are not alone. I'm glad you wrote. Anyone else have suggestions for Tammy?
Randye

Kay Hecker
March, 19 2014 at 3:48 pm

My daughter who is now 29, was diagnosed with paranoid schizophrenia about 4 years ago and I can relate to these stories only too well. We both live in Texas, which is the worst funded state for the mentally ill. She has never been compliant with taking medication. Once she was court ordered to take the injection, Risperdal Consta every 2 weeks for 3 months, which helped her greatly and when I tried to get that court ordered medication for a year, I was unsuccessful because her psychiatrist would not sign the paperwork and it fell through. The judge here told me "if your daughter commits a felony, it would be much easier to get that years medication order from the court. Our jails and prisons are filling up with people with mental illness, though, at this point it is much cheaper to put them in jail than to get medical help for them. I have come to hate the term "immediate danger to self or others, which is what they, the mentally ill, must display before they are hospitalized. The sad thing is, that at that point of being an immediate danger, it is often too late for the patient and/or the victims of their breakdown. I have had 29 years with my daughter. How many years did the parents have with their children that were murdered at Newtown, Conneticut? Mental illness not only affects the mentally ill and their families but it affects so many others.

In reply to by Anonymous (not verified)

Randye Kaye
March, 19 2014 at 4:41 pm

Kay, your comment sums up what is so wrong with so much of our system. Linda, thanks for your comments in response to others. My hope is that by telling our stories we may continue to open minds to the real "lunacy": our flawed mental health system. Thank you for writing.
Randye

Linda
March, 10 2014 at 3:06 am

My heart goes out to everyone who has commented. Our children have had the rug pulled from under their feet in many cases just when they were about to become independent of us. This throws up a lot of resentment as we worry about the possibility of having to look after them for the rest of their life.I must say though I would give my life tomorrow if it could be taken away from him.In the case of the one girl whose mother is schizophrenic I also feel for her as my own mother was ill. I let her down by leaving home at 19 so the I say to you that you have the right now to want your own life and I hope you get some support to do that. I have just had my 24 year old son sectioned under the UK Mental Health Act. He now resents me and sees me as one of the enemy in his delusions of persecution. He is taking meds but after one month there is still no change in his mental state. My belief in God has gone. I was never religious but had my own views about spirituality and life's ultimate purpose but this had taken it all away and I am struggling to find any purpose as my sons mind shrinks into an abyss of fear and paranoia.

Graeme Rose
March, 1 2014 at 9:06 pm

Hi Everyone here, I have read all these posts and am feeling so much sympathy for you all, and also for your children and parent. This is a very damaging disease to have and to live with, so destructive of lives and families. You all know it intimately and have so much good understanding of the day to day difficulties involved. As a M.H. counsellor, I can only offer my deep admiration for your strength and loving dedication to your relatives, and I know that what we want to achieve and what we actually can achieve are very different, so I will wish you more strength, and more love and more of God`s good help in your endeavours to find happiness within the dark clouds that are around you all. G.

T.Edwards
February, 19 2014 at 7:25 pm

Hello All,
Everyone here seems to have a child with schizophrenia, my situation is different its my mother. I have been the adult my whole life. I never got the chance to be the kid. I am 40 now and I am tired. I want my life; I am tired of worrying about her. I want to have a normal life; I want to be free. I know this sounds selfish, but I have bailed her out and set her up her life too many times. She is the most selfish person I know. All I want is for her to take her meds, and be happy. I have prayed and asked God to heal her. I have been a good daughter I'm not rich so I can't afford to place her some place nice. Group homes are awful, but no one can take living with her. I am at the end of my rope and I am about to give up. I know it sounds awful, but I can't keep going through this, I can't keep giving her my life its not fair and all of my family have distanced themselves away from me and her.

In reply to by Anonymous (not verified)

Randye Kaye
February, 20 2014 at 4:49 am

Hi T -
I'm so glad you took the time to comment . Yes, so many "ACOMI" - Adult Children of those with Mental Illness"- have similar stories and concerns. As a teacher and trainer for NAMI's Familt-to-Family program, I hear many stories like yours. (By the way, I just made "ACOMI" up, so you won't find anything on google about it - at least not yet! - but I do think it will be my next blogpost here. You deserve a voice.)
We parents often talk about "the child we lost" - the one we knew before the illness - but ACOMIs have responded to that by saying"How can I miss a parent I never knew? I did not know my mother/father before the illness. It's all I know."
The burden, objective and subjective, on the children is, indeed, great. Have you found any support in your local NAMI affiliate? And may I share your comment in my next blogpost ?
thanks,
Randye

ELSIE
February, 10 2014 at 12:16 pm

Reading this website helped me not feel so alone. My 21 year old son is schizophrenic and I do not know what to do. He has recently gone off his meds and I can not talk him into taking them. It is hard not knowing what to do. It is a wait and see what happens illness due to there is no guessing what they will do next. I just don't know any more.

tanya
February, 4 2014 at 4:27 am

oh my god just reading this website a relative of mine seems to me to be experiencing similar symtons
two months ago he was such a bright passive positive intelligent young man then suddenly progressed in to someone I hardly know ....I am in shock after reading comments I am more shocked and I know it is a terrible thing to think but wonder if they would be better off dead than having to live such a painful life with doctors who are over
worked unstaffed and have no cure....it must be hell on earth for them and it is hell on earth to withness the decline of a loved one who assumes we are the enemy I have beaten cancer twice trying to keep my strength up but my life will never be the same after what I had to witness watch my loved decline into this state god love us all my life now is just tears and fears and my loved is missing for the last six days and do not know if they are dead or alive and wondering which one would be best for them in this condition

pinetrail
February, 2 2014 at 5:59 pm

My oldest son (now 25) is schizophrenic and for 20 years it was the most heartbreaking situation as it was childhood onset now i am faced with the youngest son (21) in the military with onset symptoms of schizophrenia - i sent him off to the world to be free and live his own life without the escalated home life. I am simply at loss with the knowledge that the storm followed him. I am now 60 - exhausted, despondent and alone.

Page
January, 14 2014 at 9:00 pm

HELLO MY NAME IS PAGE. I have a son 24, WHO has been diagnosed with Schizophrenia FOR 5 YRS NOW.
I FEEL EACH AND EVERY ONES PAIN AND THE STRUGGLES THAT THEY ARE GOING THROUGH
I'M THERE AS WELL I'M LOST I DON'T KNOW WHAT TO DO.
I want to get my son the best of care but that takes money so I'm lost as to what to do...as we all are.
MY SON NEVER REFUSEs TO TAKE HIS MEDS BUT IT SEEM AS THE MEDS ARE NOT DOING ANYTHING FOR HIM.
HE WAS TAKING INVEGA SHOTS BUT HE REFUSE THEM NOW BECAUSE HE DON'T LIKE THE WAY IT MAKES HIM FEEL>
SO I NEVER WOULD HAVE KNOWN WHETHER IT WAS RIGHT FOR HIM
I HAVE READ SO MANY STORIES AND EDUCATED MYSELF ON HIS ILLNESS SO MUCH THAT MY HEART REALlY GOES OUT TO SO MANY FAMILIES STRUGGLING AND THE PAIN THAT THEY FEEL
I HAVE BEEN SEARCHING FOR A REALLY GOOD DOCTOR BUT NEED SOMEONE'S HELP PLEASE IM CRYING OUT FOR THAT SUPPORT MY SON BEEN IN AND OUT OF JAIL.
HE SMOKES CIGARETTES AND MARIJUANA HEAVILY
I DON'T KNOW WHAT TO DO ANYMORE MY HEART IS SO HEAVY NOT JUST FOR MYSELF BUT FOR A LOT OF PARENTS OUT THERE THAT ARE GOING THROUGH THE SAME THING PLEASE SOMEONE REPLY TOE AND GIVE ME SOME SUPPORT AS TO WHAT TO DO PLEASE!!!

In reply to by Anonymous (not verified)

Randye Kaye
January, 16 2014 at 4:27 pm

Page, I wish I has easy answers for you. We all know how difficult this is - and the fact is sometimes there is not much we can do without help. You need to find a better doctor for your son, and insist on help for him. Have you reached out to your local NAMI chapter for support? Have you tried calling 211 for information as to agencies that could help?
These solutions are a place to start. They helped us a lot. Hang in there.
Randye

Ewilson
January, 12 2014 at 11:29 pm

@Tsol...I too am in Ga and I feel your desperation. At present my son(24 dx: Schizo) is in the hospital here in Ga on a 72 hour hold taken in on a 1013 by police. I'm finding it is a viscous cycle and in Ga the system is design to protect the consumer and not the family. But, I am trusting God by leaning on his directions and loving my son despite and continuing to get education, help from DR's and social services. NAMI DeKalb Ga has been a great support.

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