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Schizophrenia and Parenting: Step In or Let Go?

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

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

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

Schizophrenia and Freedom Can Be A Scary Combination

Back when a hug was all it took...

Back when a hug was all it took...

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

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

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

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

My Adult Son with Schizophrenia: We Hope for the Best

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

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

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

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

  1. brianna says:

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

  2. Karen Powell says:

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

    Karen

  3. Randye Kaye says:

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

  4. errantskye says:

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

  5. Lee Smith says:

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

  6. Diana says:

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

  7. Amy Henry says:

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

  8. Alice Fuso says:

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

  9. Helen says:

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

  10. Amy says:

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

  11. Broken says:

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

  12. Jean says:

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

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

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

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

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

  13. Donna says:

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

  14. Rita says:

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

  15. Randye Kaye says:

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

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

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

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