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Schizophrenia and Parenting: Step In or Let Go?

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.

213 thoughts on “Schizophrenia and Parenting: Step In or Let Go?”

  1. Dear Randye: I want to thank you for your book “Ben Behind the Voices” and for this wonderful website. My son is currently hospitalized (for the 4th time) and was recently transferred to the state hospital. He went in the day before Thanksgiving and was there through the Christmas holidays and is still there. It tears me up inside that he has to go through all of this. As I was reading your book I was glad to hear that my family and I were not alone. Ben reminds me of my own son in some ways. Some of the stories parallelled what we have been going through. My son is still so young – 22 years old. My son has a past history of heavy marajuana use. In his late teens I thought that it was the pot smoking that was causing all of his “issues”. Come to find out it was something that was more serious – a serious mental illness. I sometimes think that the diagnosis (schizophrenia) may be incorrect or maybe he has just a touch of it. I’m still in that haze of disbelief but I’m doing everything I can to educate myself and my other family members. I’ve recommended your “Ben” book to my family and others and have attended some local family support groups. I like your analogy of the journey as my son is just beginning his journey and I want to do everything in my power to prevent him from having to suffer needlessly. He too doesn’t feel that he is sick, which seems to be a common and difficult part of the illness. I have recently had to make a hard decision regarding his care, as you did, I told him he cannot come home to live with me or his grandparents. It still hurts to say that but you have given me the courage and the hope that something positive will become of making this very tough decision. When we talk on the phone he asks if he can just stay with me until he gets on his feet. I heartbreakingly have to decline and tell him that he has to move on. I feel it’s the only way for him to move forward with his life. He spent two years living with me and two years living with his grandparents not able to really function in the world. He’s had a difficult time staying in school or finding/keeping a job due to lack of motivation. In and out of hospitals, IOP’s (Intensive Outpatient Programs), not adhering to taking his meds. Ups and downs, good days and bad days, somewhat normal to bizzare and strange but I have come to accept these things as the new normal for my life. I’m hoping that the state can provide the programs that he desperately needs. I am advocating for his care and have been in touch with his social workers and ICMS worker. I am not giving up before the miracle!! Do you have any specific advice going forward? Thank you again and I sincerely appreciate the work you have put into forwarding our cause.

    1. Hi Delai. You are most welcome. I’m thrilled that the book has been of some help to you, as is is SO difficult to go through what your family is struggling against. Your story is our story, and the story of countless families in this country who must fight so hard against stigma, reduced or non-existent services, and the pain of our loved ones’ illnesses. I hope that our story, the resources in the book, the Healthy Place website, and NAMI can all be of some comfort and help. keep up the fight!

  2. I don’t have anybody around to whom i may tell the truth about my 22 y.o.son. But after i read all of this stories i know – i’m not alone. It’s probably does not make my life easier, just my feelings. We all saying the same, no different. It’s a sharp pain inside. Why does it happen with my child? What to do? How to survive myself?

    I also have 3.5yo boys, and their father doesn’t want his kids around my oldest son. And he has the right to have a peace in his own life. I’m balancing between. Love all of them, and slowly going down. Can’t make a choice. Who can?

    I know my oldest will not to be able live on his own. No money, no ability to keep the job, no education, always alone in our new place, new country (we have been living in usa for 7 years). We tried for a year to find the psychologist with no success. Hospital released him with no doctor and prescription for Abilify for 2 weeks, and again we are waiting for psychologist ( i can write a lot about this problem). It’s a really big problem in this country. Something not connect and going on wrong. I will reading about NAMI tonight. Maybe this resource will more helpful.

    1. Aleksasha, thank you for sharing your story. It is never easy on a parent of a child with severe mental illness. In addition, as you mentioned in your comment, trying to figure out and navigate the mental health system here can only add to the stress.

      I do want to encourage you to seek out a NAMI chapter in your community. Here is a link for that: http://www.nami.org/template.cfm?section=Your_Local_Nami

      NAMI groups are composed of other parents who have been through just what you are dealing with and can provide support as well as very helpful information.

      Take care,
      Randye

  3. What are the signs on schizprenic. I know my son is depressed. He will not take meds. He has no friends, is afraid to get a job. He is in community college and is very lonely. He has six classes left unti he receives his associates degree. He will not return next semester becuase he need to get help. Where do I get help. I live in massachusetts.

  4. At the begining of my son’s mental illness I did not understand what was going on in his life. He was hitting the walls, he was closing all the windows, he always was wearing sun glasses, and so many different others things. I was working and when I came back home he was very sad. He was 26 six years old now he is 29. He started taking 1mg respidore, he started felling better. He stop taking meds. When he had a strange episode I called 911, they took him to the hospital, until he had to stay at the hospital for one week. He did not like to be there “with crazy people” and he promised to me and to the doctor to re-start his treatment. I take him to the clinic twice a month for his injection and at bedtime I give to him a pill of the same med. He has been very relaxed, but he doesn’t want to go out alone. I take him out. But this is my problem how can I tell him that he has a brain disease call schizophrenia? Please help me..

    1. Hi Margot. I know how difficult it is, especially when someone you love is just not ready for the help you want to give. In my experience – shared by many others – it is seldom effective when we try to “convince” our loved ones that they have a mental illness. We can, however, set limits in our homes, take care of ourselves, and enlist the support and services of others – like NAMI (go to NAMI.org, search for your state, and find a support group in your area). This is not something we can handle all alone, nor can our loved ones. Educate yourself as best you can, and reach out to find services in your area for your son.

      You have made a great first step by reading the material here on Healthy Place. You are not alone.
      Randye

  5. I just want to thank you for this site – this post, your blog or your web page. I feel at home. My son, 26, just moved into a shared apartment with another person – my son has a diagnosis of schizophrenia. Letting go (last June 2012) when he moved was, after reading your post, exactly as you describe, although I did not realize it.
    I just want to say – I cannot wait to read more of your story – of my story – it puts words where my heart is. Thank you

    1. Louise, you are most welcome – and thank you for taking the time to write! You are the reason I write…and I hope the book (Ben Behind His Voices, where, I suspect, you’ll continue to see similarities…) is helpful to you as well. Hope you, your son, and family are well and enjoy your holidays!
      best, and always with hope, Randye

  6. FORE none of us stand alone sorry too all that have a child with mental illness . I need help knowing what to do MY 28 year old son has been battling this for over 7 years in and out of the state hospitals. the thing is that we his family mom two sisters and a much younger brother seem to be only hanging on by a thine line. he has and can be threatening ans dangerous. two him self and others often we love him deeply but i think it has came to that sad place where we need to let go and try to go on with our lives trying to put our self’s back together HOW bad this sounds for us to due such a thing to some one we love and is ill please help me to start to know what to due

  7. its difficult and hard to have a son with this sickness. ive been battling with him for the past 12 years or more. HE is on alanzapine but i feel that he is relapsing because today he doesnt want to see his nephnew which he adores.

  8. my son.28 year old.he is lonely.stopped taking meds year ago.up down up down left right left right…..i love him dearly.i want happiness for him.girlfriend.friends………bipolar/schizo?

  9. I also have a 30 year old that seems to hate me and her sister. And threatens me. To move out each time she gets upset. She thinks we dont care. An says mean things to us all. She can be normal in front of people. But when we get home. Im am walking on eggshells. Praying she doesnt explode. I work. And my days off are difficult. She has tooken over it seems like. I need to take classes to give me better coping skills. We have been going through this for about seven years. She attends church with me. Things have gotten alot better. She no longer cuts . herself . Thank GOD! Ive just gotten alittle run down by all this. And would like to know of there is somewhere we could both go to get counseling? Its a battle that i will never give up on. She is my daughter and i love her to life!

    1. oh, Alice — there are many reading your comment who know exactly how you feel. I don’t know if your daughter wants to go for help with you, but in any event you can certainly get help and support for yourself in the meantime. In face, it’s essential that you take care of yourself, so that you can continue to “love your daughter to life”!
      Try your local NAMI affiliate for lists of nearly therapists, support groups, and (highly recommended) Family-to-Family classes. It’s important that you not feel so alone, and get the facts about your daughter’s illness and what you can/cannot do. There is a lot of great info on the Healthy Place pages, and in books, but interacting with other real live people is vital – at least it was for me!
      MY book, though primarily a memoir about our experience with mental illness in my son, also contains some valuable resources for reaching out.
      Hang in there, and take care of you,
      Randye

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