Mental Health Blogs

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

  1. GARVEY says:

    For 15 years I watched my husband struggle with depression, suicide attempts & paranoia. His diagnosis changed so many times…..bipolar, schizoaffective, etc. He’s always been med compliant & it took a long time to find the right combo of meds.
    We have four beautiful children together. He has his own business. He is extremely talented & intelligent. He has beat schizophrenia for now.
    BUT our 8 year old son was just diagnosed with schizophrenia…..it was like being a death sentence. Wed taken him to the psychiatrist to be tested for ADD & excessive anxiety. We walked away with SCHIZOPHRENIA. Knowing its heredity, knowing his father mother aunt uncle ALL have this diagnosis STILL did not ever make me think that this would be his fate.
    I wonder about my other kids….will they hallucinate, will they too long to end their tiny lives. Feeling overwhelmed & so depressed. We lost our possessions during hurricance sandy then lost our home a month later. We are staying with friends & technically homeless. They said his “break” occurred during the loss. He is hostile, threatens to kill his 5 & 6 year old brothers, says hurtful things to us & his older sister. Its like he’s crawling out of his own skin….literally scratching it open.
    Hate feeling that he feels so HOPELESS. Hate that my husband feels at fault. My HEART feels broken & my family feels like its falling apart. Idk what to do. Need stable housing…..LOST.

  2. Lori says:

    My son,almost 26 ,last month suffered a psychotic episode and was arrested walking in tennis court near family condo. He always has had social problems mostly attributed to Asperger’ s Syndrome , or high functioning autism. His father was a young man I had a brief relationship with while in Israel years ago. We lost touch. I am older single parent of 3 and I have many people I know but no one to help. But this week I applied for SSA and Medicaid with 2 women who went out of their way to,do the paperwork with me in one visit. Most of the medical people have been so nice, except the clinic doctor who upset Mike with accusing voice” So how long have you have schizophrenia?” I answered “one month.” Reading this helps much.

  3. SUE says:

    I have 4 sons and my youngest 26 yrs old son has been recently diagnosed as having Paranoid Schizophrenia, possibly caused by the death of his father when he was 18 years old. To cope with this fact, he took so many dangerous drugs and also two overdoses which I believe contributed to this illness today. Usually always a quiet boy he began to develop an obsessive personality disorder and became very violent and aggressive towards me in the family home, possibly from all the drugs he was taking. I became very ill myself and whilst he was in prison I was moved into a small safe flat after suffering a breakdown. The rest of my children had already moved out to be with there partners.
    Since this time, he has been in a mental unit on two occasions and I have always been there to love and support him alongside his brothers. He is still under the care of the mental health team and has been put onto an anti- pyscotic medication to help ease his distressing symptoms. The truth is that I had to stop having contact with him because he began to drink alcohol and take drugs again and I felt afraid but his brothers continued keeping an eye on things, Since that time I once again have been quiet ill from worrying about him all the time. The mental health team are trying to find him somewhere else to live, but I feel such a failure as a mother and wonder if I should ask them to find a place for us both to live together again so that I can look after him. The truth is that he’s began to take Heroine and I am just worried sick that I will loose him forever if I don’t do something. We are all concerned, but the other boys have children at home and so can’t take him in. Please can someone offer me some advice as to what I can do please. Thank you

  4. siennarose says:

    I found this website in desperation looking for some support and advice and i’m so glad that I did. I am so heartbroken that my beautiful youngest 26 yrs old son has been diagnosed with Paranoid Schizophrenia. My other 3 sons live normal, healthy and happy lives, and it breaks my heart to know that this is happening. His father died when he was 18, which is when this illness began to take shape. Normally a quiet loving boy, he began to take drugs to cope with the pain of loosing his dad and took 2 massive overdoses. He developed an Obsessive Compulsive Disorder and eventually was put into prison for committing crimes. When he returned to live with me, all the other boys had moved out to be with partners. I began to feel very afraid of him especially with the paranoia that seemed to take him over. I had to move into a small flat whilst he was once again in prison, because I became very ill after he tried to hurt me, but this was only because he was ill. I have always stood by him and he was in a mental hospital twice quiet recently, but then he began to drink alcohol and so I wouldn’t go near him because I was afraid. His brothers have been keeping an eye on things and the mental health team go to see him every week. He’s finally taking the medication regularly, but he isn’t a happy boy and neither am I. I feel as a mother that I have failed him and should be there to look after him. I am so distressed because he has recently been dabbling with Heroine. I am thinking about asking the Mental Health Team who are currently looking for him somewhere else more suitable to live to see if they can find somewhere for both of us. But the constant talking he does to someone or no-one is awful and drives me to feel that I just can’t take it, but I don’t want to loose him or fail him. Please can someone give me some advice. Thank you…

  5. michelle says:

    We have a 18 yr old with paranoid Schizophrenia diagnosed at 17 turning 18 .i always new something was different but the Dr’s said it nothing or ADHD well i wish it was that and a dream to it has been going on 10 months it was hell should we believe the Dr ? but after seeing what we went through the voices ,paranoid stuff delusions it was sad it still is what parent wants there son to have this .he is on Invega for the last 5 months doing much better was on Seraquell stopped that not good up all night .takes valium but i must say i see my son doing better it ‘s ONE DAY AT A TIME ! because at any given moment it can change or just hoping being of age he doesn’t want to stop his shot which has happened already .he trusts me be supportive and treasure everyday i also keep a journal everyday on him in case something goes wrong the DR s can read it .support groups are good N.A.M.I is good .we have a long road ahead of us lot s of prayers .oh don’t forget for you to enjoy life as well get out and do something to it will take a toll on all who is involed .

  6. Ina Jones says:

    I can relate to all of you very well. I too have a son and a daughter with schizophrenia. My brother had it and it was a nightmare for my parents, younger sister and I. This was back in the eighty and the medication was not as good as the ones they have today so my brother never got a chance to recover with meds. Out of 4 siblings, and 9 grandchildren both my children were diagnosed with schizophrenia. They were in the hospital every year at the same time. My son got hooked on all kinds of drugs and was in jail several times for petty larceny. It began with ADHD and it escalated to schizophrenia. He was living with a girlfriend and she overdosed. Sadly his father passed 1 year after his girlfriend. I had already met my new husband and moved in to my new apartment one year before his father passed. I knew my son was living with friends but I didn’t know he was using drugs and drinking himself to death until it was almost too late. I pleaded with my new spouse to let him in the house until he got his life back and he finally agreed. I spent countless nights on my knees and then one friend recommended I take him to a deliverance church. He refused to go so I went and I let them pray for me and my family. One day the minister who is an evangelistic bishop of a church told me God could heal my son through me. I was there for both my children. My daughter came with me but she had to fight her way to church. She was paranoid and heard voices telling her ugly things about her and she had bad anxiety. I just told her to force herself to go and one day the bishop called her to the front for prayer and told her “no more” God is going to heal you. Well if you don’t believe in miracles, you should because she has been improving and I thank God so much. My son is also improving and slowly coming out of his addictions. He has truly come a long way. They are still improving and I am still praying for they total recovery. The dose on their medications has dropped tremendously. My daughter could not be in crowds and now she has no problem taking the bus or subway. She feels safe in huge crowds and she rarely hears voices. I hope this helps. I was able to handle my life with them very well. I’m not saying that I didn’t feel stress but I kept myself busy by attending college again and praying a lot. There is hope if you seek the help of God. The social workers and psychiatrist are also a great help but the problem with this diagnosis is that the diagnosis of paranoia makes it difficult for them to trust those professionals trying to help them.

  7. Randye Kaye says:

    I am glad this has been helpful for you and your family. Each family, and each person living with mental illness, finds the combination of treatment options that works best for them. Thanks for your story!
    Randye

  8. robin Pickett stone says:

    I need help with my son, he is in jail , he has been getting in and out of jail, but he really is a good son , and here in alabama they don’t care!! Please I need help

  9. Randye Kaye says:

    Anybody know where Robin can get some good advice in Alabama?

  10. Joyce says:

    My daughter has had all of the follwoing diagnoses: Schizoaffective DO, Schizophrenia, Asperger Syndrome, Bipolar disorder. I am a Registered Nurse. Until my daughter became mentally ill, I practiced in the med-surg/tele area. Now I do psyc. nursing.

    The doctors do not know what is wrong with my daughter (now 20 years old)! Her symptoms started in 2006, a few months after her biological father died very quickly from stomach cancer (2005). Of course, the symptoms worsened after got married to a retired army veteran, who suffers from PTSD himself.

    I believe that antidepressants pushed her into her first psychotic break.

    Does any one have a success story to share? My daugher has always been a very bright, intelligent girl. She is in college right now. This is her first ‘on-campus’ college experience and it has not gone very well so far. I want to help her succeed.

    I need to hear a different kind of story–SUCCESS!

    Joyce

  11. Joyce says:

    My daughter has had all of the follwoing diagnoses: Schizoaffective DO, Schizophrenia, Asperger Syndrome, Bipolar disorder. I am a Registered Nurse. Until my daughter became mentally ill, I practiced in the med-surg/tele area. Now I do psyc. nursing.

    The doctors do not know what is wrong with my daughter (now 20 years old)! Her symptoms started in 2006, a few months after her biological father died very quickly from stomach cancer (2005). Of course, the symptoms worsened after got married to a retired army veteran, who suffers from PTSD himself.

    I believe that antidepressants pushed her into her first psychotic break.

    Does any one have a success story to share? My daugher has always been a very bright, intelligent girl. She is in college right now. This is her first ‘on-campus’ college experience and it has not gone very well so far. I want to help her succeed.

  12. Randye Kaye says:

    Hi Joyce,
    I can’t respond to any medical issues such as the result of antidepressants on your daughter’s condition – as a psych nurse, I assume you have more medical knowledge than I do. Still, from what I know, it does sound quite possible that your husband’s death and any subsequent changes served as “second hits” of stress that could have helped to trigger what may have been lurking. I am so sorry for your family’s pain, and so relate to your strong desire to help your daughter succeed. In our case, it was most helpful to allow my son to progress at a slower pace than before the illness hit. He takes 6 credits at a time, and this is what he can handle best. But he had many overly ambitious starts before that. Success can happen, with structure, support, community, treatment, and reality checks. One of the reasons I wrote Ben behind His Voices was to share how our son has been able to succeed with schizophrenia….but part of that has been our changing our expectations to more accurately reflect what he can accomplish as things progress.

    Best to you. I know it isn’t easy, by far.
    Randye

  13. Teri says:

    I can relate to all of these postings. We have a 24 yr old son with schizophrenia, and our hearts break every day. My husband had to quit his job to stay home with him. He was arrested last year and now with probation and restrictions and his illness, he needs someone around all the time. I can hardly get through each day. I am so glad to see this site, but so sad that there are so many of us. I wish we could get together – It is so lonely when you have no one who understands your struggles. If anyone is in the Milwaukee area, please let me know. I’ll check the site often. I hope every day that my son will meet someone who can be a friend but it never happens. WE barely get through each day emotionally. And I worry so much about the future and his fate. He takes his meds, but that’s only because of the arrest and probation, which unfortunately has been the only thing that helped us since the laws are so outdated and work against you and not in the patient’s well being. I could write a book with all we’ve been through. Thank you for this site again!

  14. Randye Kaye says:

    Teri – yes, how I know…we each could write a book. I tried to speak for so many of us by writing ours, and hope you can find some comfort there in “Ben Behind His Voices.”
    Have you reached out to your local NAMI chapter? This saved our emotional lives, especially Family-to-Family.

    It has taken my son almost ten years of slowly progressing through recovery – but he, at last, has friends. Doj’t lose heart, but do try to be patient…I know it’s hard. Recovery has its own timetable. And remember to take care of yourself too!
    Randye

  15. Rich J says:

    @Randye – read your book, Ben Behind the Voices (well audio) and hard to keep from tearing up most times listening to it as I could relate more than you know.. many times on the plane listening to it. I am actually a fairly successful person (executive for fortune 500 company) who has 3 boys the youngest of which has diagnosed with Disorganized Sz… we have no history in our family and had no clue about the devastation of this disease. Our son had spinal menangitis as a baby and had a terrible TBI accident when he was 13, which I am convinced caused the Sz. It has taken such a toll on our family, our marriage and our life. I have turned to advocacy for MI as we need too as a society invest in finding a cure or better treatments for so many who suffer!!! I just found this page surfing the web tonight and just want to thank you for writing your book – it touched me. I hope and pray that Ben finds his peace and path in life as well as my son Chris.

    God Bless all the parents of children impacted by mental illness… we are the tired, strong, fearless warriors who soldier on despite the challenges, thoughts of despair, and fear — we continue to find hope in the midst of chaos and uncertainty… and we will never, ever give up or lose hope for the one’s we love!

  16. Randye Kaye says:

    Hi rich
    Wow thanks so much for your comments and insights. Yes we are warriors indeed ! I wish you and yours healing, support and so much more
    Best,
    Randye

  17. tsol says:

    21 yr old son is in jail with immigration hold for being violent with me. Everybody expects me to get him out and take him home with me but my husband and I can’t live with him. His brother is schizophrenic as well but taking meds. Tends to refuse meds though if the brother in jail tells him to stop. Son in jail is a bad influence on the stable son. I’m in Georgia and have repeatedly asked for long term medical help and nobody will help us. I contacted the probate judge about a 1013. Georgia has a 72 hr hold and they let patients go if they refuse meds. Checked on getting guardianship. If I did that I still couldn’t legally force meds. He’s been violent with us and still the court will not order mandatory shots. The politicians of this state need to change this. Or maybe they are medication refusing mentally ill too that think this is right. I’m so frustrated. There’s nothing else I can do. I’ve lost my son. I think I have to just let him go and think about the son I have left and the daughter he’s leaving behind. I’ve cried so much. My heart is broken. I can’t sleep well at night. I have to constantly stay busy to not think about it so much. I’m exhausted, depressed, I feel guilty, scared, worried. I love him but don’t know what to do. The mental health system of this country is non-existent. Maybe the government wants as many people possible to be insane…if not it sure looks that way. Because they aren’t doing anything to fix people.

  18. Randye Kaye says:

    Oh, I am so sorry to hear your story…for the heartbreak you are experiencing, and also because it exemplifies the plight of oh so many families in this country. Your love is strong, your knowledge is there, yet the system leaves you powerless to help. Thank you for writing this, and adding to the honesty that we hope will someday reduce the stigma and legal complexities and get families the help we so desperately need.
    Randye

  19. Ewilson says:

    @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.

  20. Page says:

    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!!!

  21. Randye Kaye says:

    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

  22. pinetrail says:

    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.

  23. tanya says:

    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

  24. ELSIE says:

    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.

  25. T.Edwards says:

    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.

  26. Randye Kaye says:

    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

  27. Graeme Rose says:

    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.

  28. Linda says:

    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.

  29. Kay Hecker says:

    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.

  30. Randye Kaye says:

    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

  31. tammy says:

    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?

  32. Randye Kaye says:

    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

  33. Michelle Miller says:

    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 .

  34. Tanya Severin says:

    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.

  35. Kari Rice says:

    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

  36. Vicki Woodward says:

    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 …..

  37. Loni says:

    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.

  38. Randye Kaye says:

    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, http://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

  39. C. Demers says:

    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?

  40. Randye Kaye says:

    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

  41. LeeAnn says:

    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.

  42. Michelle says:

    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.

  43. Michelle says:

    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

  44. Michelle says:

    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.

  45. Randye Kaye says:

    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

  46. Janet Meyer says:

    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.

  47. Maria says:

    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

  48. william Geibel says:

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

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