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 Without Parents
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 2024, November 7 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go
Author: Randye Kaye
Hi
These posts nave been so helpful.Thank you.My son 38 after 10 yrs of being relatively well on injections has relapsed very badly.
i warned jis case coordinators for lver 2 mths that this was happening.Fimally too late they put out a warrant to compulsorily put him in hospital but hes gone missing and has been for a week now..The police phone me every day to update me but I actually cant take any more.Ive done everything I can.Ive got to let go for my own sanity and health.
Following this blog. I am in a tough spot. My boyfriend of 8 years has a 23 year old adopted son who has lived on the streets, been incarcerated, and recently overdosed. His near death experience has brought him into my boyfriends life full time. Since, we have tried to assist him with getting a job, getting him housing, and finding him treatment. He too believes the government is after him and believes that their are people searching for him. He abuses his meds, self medicates (using meth), and refuses to go to counseling. I have been trying to be a supportive girlfriend, but it is becoming unbearable and affecting my own health (ulcers, stress, anxiety). I sincerely felt like I had finally found the man of my dreams, and now I have learned that he comes with a very disruptive son, and an ex-wife that my boyfriend feels he must "parent his child with". After 6 months of trying to provide this 23 year old housing, he has lost his job, can't function in society and won't get mental health help. His parents have said to him, "you have two weeks to get yourself a job, start earning an income, and go to mental health counseling". My question is: Can you ask a schizophrenic, bi-polar, severely depressed 23 year old to do any of these things? And does anyone know if individuals living with these diagnosis even understand the concept of time?
If he's still delusional especially, you can't ask him to get a job. It sounds to me like he needs to be hospitalized, especially if he won't get help. I have schizoaffective disorder, and I'm on meds and I understand the concept of time. But I've been compliant with my doctors for decades.
Great job that you understand and take your meds and your compliant with your doctors. There are many individuals out there like my son that has schizophrenia that is are in
denial. He he has anything. He is like many others who refuses to take meds. He does go and see a psychiatrist that gives him a prescription for medication. He is 37 years old he refuses to take it. He becomes very violent aggressive, has severe paranoia and has been diagnosed with PTSD. My point is congratulations to you that you know what you need to do to help yourself. Individuals like my son are very difficult it's devastating , scary and upsets me because he can't live alone the last house he had he destroyed. Sadly that in the state of New Mexico there is no mental health programs that will help if he refuses to get help.. I've tried to get guardianship and that failed so each time he acts out he goes to jail and that's not the solution.
I FEEL LIKE I CANT TAKE IT ANY LONGER AND FEEL GUILTY! my daughter is 20 and has schizophrenia. diagnosed at age of 13. She tears apart the house, always asks for $ and ride, needs to talk about her religion for hours trying to keep her mind occupied and distracted from the voices and hallucinations. She is totally dependant on us and I worry for her future. Is it best to put her in a residential home to become independant or suck it up and apreciate what baby steps she makes along the way. What is best for her? She takes her meds and counseling once a week.
I want to help you, but I don't feel qualified to answer these questions because I don't know you or your daughter. I think you should ask her doctors these questions, or join a support group and ask the people there. Sorry I can't be of more help!
Yes, Donna, isn't that the $64,000 question? My girls are 23 and 26 and both suffer from bipolar disorder (the oldest also has Asperger's syndrome and pervasive developmental disorder.) Your daughter sounds very much like mine (especially a couple of years ago.) Their dad and I are constantly asking ourselves what the future holds for our girls. I lay awake nights worrying about their ability to live independent lives. I really feel for you and the struggles you're going through. I wish I had a magic answer for you (or me) to know what is best for your child. For me, I'm waiting for an answer to settle into my heart and let me know the correct course. I'm afraid that is the best I can hope for you, too. But know, Donna, that you aren't alone. My thoughts are with you.
Hi, my son has been diagnosed with schizophrenia a year ago, since then it’s been a roller coaster ride. He takes his medication most of the time because I’m always reminding him, if I don’t he will forget. He is always saying he’s an adult and he can do what he wants and that he doesn’t need help. I feel so stressed out, to tell you the truth I’m scared that he will have a phycotic break and kill us all, I’ve read quite a few news stories about schizophrenics killing their moms or when have an episode. He has no where to go and I feel bad enough for feeling like this but sometimes I just want him to go away so I don’t have to deal with it. But I love my son and I can’t let him go and suffer by himself. I don’t know what to do. Where we live (Oshawa, Canada) there is so very little help for people with schizophrenia much less support for families. I just need to get this off my chest. Any advice is much appreciated. Thank you.
Hi Priscilla,
What a terrible position you are in. I feel for you and what you are going through. You are not alone--there was a time I had very similar feelings about my severely bipolar daughter. Being here in the States, I don't know what resources you have available, but I would suggest that you call ConnexOntario at 1-866-531-2600 and start there. It is a hotline for services for mental illness, addiction and other difficulties and seems to have a wide networks of services. Even if your support is only over the Internet or through a help line, you need some support to get you through this time. Please reach out; I believe help is out there. Secondly, here is a link to an article about schizophrenia and violence https://www.living with schizophreniauk.org/schizophrenia-and-dangerous-behaviour. While it was written in the UK (rather than Canada) I think it has a lot of good hard facts for you to hang on to so that you don't frighten yourself too much with some of the horror stories one can find on the Internet. Finally, is your son in therapy? Can you coordinate with the therapist to provide your son with help? Here, privacy laws mean that providers cannot talk to the parents of adults with mental illness without written consent, but we get around that law by having one-way conversations whereby the parent talks to the therapist but the therapist doesn't talk back. My point is, adult or not, it is possible to actively participate in your son's healing with a little creativity. I know you feel overwhelmed now, but if you can help your son take little baby steps toward wellness, those steps eventually add up to some real gains. Six years ago, I was living in a similar hell with my daughter, but with meds, therapy and lots of little baby steps, we are now in a much better place. That you and your son can find a place of wellness is my wish for you.
Susan, I appreciate your encouragement with baby steps for Priscilla. I am going to go to sleep now and know that baby steps do add up. One day at a time. Pray, do my best and know that if I can help my son get his life back, all the effort is worth it. You are a very sweet lady and much appreciated. You are the calm in the storm. Thank you Cynthia
My 33 year old son is schizophrenic and ruining my marriage (his father died when my son was 11), my other 3 children reject him and ignore him. He refuses help because he is a “targeted individual” and the government is torturing him. The websites for targeted individuals instruct them to never go to a psychiatrist, and tell them the government is ruining their lives and their families will eventually reject them. I feel so sorry for him, because he is genuinely afraid 100% of the time. He has out triple locks on every door in our home, spotlights on the side of our house and in general is disruptive. Our family doctor prescribed some anti-psychotics for him, but he looked the side effects up on the internet and refused to take them (impotence, kidney issues etc). He self medicates with marijuana and who knows what else. 2 DUI so cannot drink. I’m at the end of my rope. I did just read a study about schizophrenics having infections in their brain, and the effect of doxycycline treatment. Taking him tomorrow to MD. If this doesn’t help, I will have to remove him from my home. He thinks I should buy him a house! Ugh. Thanks for the vent....
Hi Debbie,
I can only imagine how hard this must be for your family.
I highly, highly recommend you get your hands on this book before doing anything drastic: https://www.amazon.com/Someone-Mental-Illness-Treatment-Anniversary/dp/0967718937/ref=sr_…
(I have no affiliation with the book and nor does HealthyPlace.)
Your son is not alone and neither are you.
- Natasha Tracy
- Blog Manager
- Author of "Breaking Bipolar" blog
Hi Debbie,
I am so sorry for all the troubles you are having. That has got to feel overwhelming. I'm glad Natasha offered you some reading material that might be helpful in making your decisions. I would like to add that I really feel NAMI (National Alliance for Mental Illness) is a wonderful resource for support for you and your kids. Not only can you meet other parents who are experiencing similar issues, but they also have groups for siblings so that your children can feel like they are also getting the support they might need. Additionally, NAMI can put you in touch with local resources and give you a place to vent. (We all need to do that.) HealthyPlace.com has contact information for NAMI on their "Resources" page. I wish you, your son, and the rest of your family only the best as you navigate through this difficult journey.
Im sorry for what youre going through with your son hearing voices, tormenting him. It must be difficult for you because you dont know what to do to help. Please try to understand that your son is telling he truth and he is being tortured. Will you email me so we can talk? patrickross9@tutanota.com
I came to this site looking for support but found none . So sad
Hi Jennifer, We have similar problems with a relative. He took medications for 5 years and developed a bad case of suicidal ideation, irritability, sound sensitivity and head hitting as side effects from antipsychotics. Due to these problems his medications were reduced about 8 months ago and we are experiencing some out-of-control behavior. I was wondering if your daughter took medications in the past. Withdrawal brings about some severe problems.
I too have a 32 year old daughter that has been diagnosed, our therapist is telling us NOT to tell Sarah (our daughter) of the diagnosis in "hopes" that Sarah will come to find this on her own...in the meantime, Sarah has stopped going to therapy, what do you suggest, as a mother, do I tell my daughter she has a mental disorder?
Hi Jessica Jane Forst,
As the mother of two mentally ill adult daughters, I couldn't disagree with your therapist more. (Mind you, I'm strictly speaking for my own experience.) Would you withhold a diabetes diagnosis? Would you withhold a cancer diagnosis? This is another serious illness that needs to be addressed. When your daughter finds out that she has a mental illness and you knew and didn't tell her, she'll feel betrayed. Instead, I would research your daughter's diagnosis, find out celebrities or other famous people who share your daughter's disorder and are thriving in their lives, see if you can find info on successful new treatments, then sit down with her and discuss how her behaviors are linked to the diagnosis but here are the things we can provide as tools to overcome your challenges. Chances are she'll have a personal "ah-ha" moment when she realizes the diagnosis makes things make sense. Empower your daughter with hope that, now that she understands what's happening to her, she can use the tools available through medication and counseling, to achieve her highest potential. It won't be easy, a mental illness diagnosis can feel devastating, but by empowering your daughter with knowledge, you can allow her to take control of her life and her disease. Check out NAMI (National Alliance for Mental Illness) for both of you. You can find the number of your local chapter on the Resources page of the HealthyPlace.com website. They have group meetings for your daughter and family-to-family support groups for you. Good luck to both of you.
Also, she lacks the insight of her illness, therefore she doesn't seek help nor is she on anti-psychotic meds. She really needs. Eds, treatment and therapy. She had refused all - due to a government conspiracy and she also claims shes psychic, has special abilities and is an empath. This enables her to be able to talk to dead people, and other people who aren't even in the same vicinity as her. She loathes her grandmother (my mom), because apparently my mom tried to poison and kill her. Its just one thing after another. I am told nothing can be done, unless she's brandishing a weapon znd threatening to use it on herself or someone else. So i sit idly and "wait" for something terrifying to happen in order for her to "possibly" get the help she needs. All the while living in a oppressive and unstable environment as my health goes down the tubes. God please help us all.
Oh Jennifer,
I wish I could tell you that everything will be okay, or offer some sage advice that will fix the problem. But, you and I both know there's no magic bullet out there that will fix this. All of your choices are "bad." And, I'm so sorry. You are right, however, in doing all you can to take care of yourself. You need to do this for yourself, and for your daughter in case there comes a time when she wants help. Do you have friends or family that you can turn to? Or, even just someone to go out and have coffee with to fill your own soul? In the meantime, it sounds like you've done all you can and have really stepped forth to be a good mom. That's all you can do. Take care of yourself.
Those thoughts are coming from the illness that's what it does to her. You need to take her to a physiatrist who knows the medication and [moderated] My son has this for 7 years now. He would not take the medicine so i had to tell him either take the medicine or live in a hospital. Also he was cheeking the medicine so i crush it up in the kitchen in a little juice and he take it while i am in the kitchen and he doesn't have to go to the hospital. This illness is so hard to cope with because they think nothing is wrong. There thoughts are not real. Don't pay attention to those bad things she says its the illness. She still is the lovely girl you knew. There brain is not functioning right and they know it. I have to tell my son relax your safe at home Because his thoughts are not clear. I tell its okay and find something he likes to do listen to music, play games, take pictures with his camera. Or just rest because they cant control these thoughts of things that are not real. I tried everything school, work, groups the last thing my son wants is to talk about the illness he just wants his life back. So the only thing you can do is help him take care of himself with everyday guidance. making sure he has food and care. You have to work on one thing at time. The medical community will tell you they have to take charge of there illness but my son is not there yet and i have to do it for him to live.
I'm going through same sort of stuff as you all. My daughter has schitoaffective disorder. She lives with me and is 26 yrs old. She continues to digress and theres no help. Shes been in state hospital and arested 4 times. She became violent with me and I put her out of my home. She was on the streets and I took her back in. Im doubting my judgment to allow her to live with me again. There's always some chaos going on in my home. ALWAYS!!!! Never a dull moment. Ive exhausted all means to get her help, even took nami's family to family course. It's affecting my health and well being. Ive ended up in urgent care twice in a month from severe stress induced hives. I am now having anxiety and depression issues. I basically live in my room, because she's explosive and tells me I'm trying to kill her, ive ruined her life, im an f---ing b--ch! She's extremely mean and disrespectful to me and damages my house. I have to repeatedly tell myself shes has an illness and its taken over. My body is done, but my heart is breaking. Is it time to let go??? Praying for everyone here and for their ill loved one. So much grief and pain and cant get the help she so desperately needs.
Jennifer Cakus, I'm so sorry about you daughter and what you're going through. I've been there done that. My son 33 lives in a locked skilled nursing facility. It is beyond heart breaking. He asked me today if he could come back and live with me. I wish I could say yes. I know it won't work. We've tried it many times. And so I feel horrible not letting him and he feels rejected and abandoned. It's an unbearable situation. And I wrong? Do we try it again? And when it doesn't work then what?! I know he had an illness, but I can't fix it. I've tried. I've helped and been his best advocate. I'm his guardian and he resents me and blames me. But it is his life, choices, anger, behavior. ..his path. I can't carry him through it. He will have to find his way. Am I crazy? wrong?so so so sad.
This is such a tough situation, and it's hard to judge from an outside perspective! As an outsider (and as someone who often works with people with schizophrenia who need intensive supportive housing, like your son), I can say that it really does sound like you made the best decision for your family, but I'm not a part of your family, so that's truly up to you all to decide ultimately. You have to weigh the pros and cons of whether being at home is better for him or not. Would he potentially stop taking meds, engage in dangerous behavior etc., if he went home? Would that be better or worse than his seeming resentment? Over time, will some of his feelings change, and he might be able to understand why you made the choice you did? Would it perhaps be helpful to find an independent professional to do the guardianship so that he doesn't associate these decisions with you? That's a tough decision to make, and you'll have many questions to ask yourself. Are there step-down options for him? Could he move to a supported group home type environment or an apartment with intensive community supports in place? I don't know a lot about the state/county you live in, but perhaps reaching out to social services for help and engaging more people in the decision making process to that you don't feel so alone. I really hope it turns out for the best! Good luck to you both.
I have a son who has schizophrenia 24 years old. i found out that caffeine is a major problem. My son was breaking everything in my house and i noticed it was when he drank caffeine. He loved those energy drinks but the caffeine rises the dopamine in his brain. Now he is 100 percent not violent. He is more controlled when he is angry. When your daughter gets violent bring her into the kitchen and crush up a clodopin medicine in a little juice in glass and walk away to let the medicine work. This will in minutes and stop the violent behavior. When my son drinks a Redbull i need 2 clodpins. He wants his caffeine and i will not give him money because he cant have the caffeine. You will be able to live with her again. What i try to help my son with is just basic living. Eating right and sleeping good and finding things to do. Once this illness hits they stay doing the same things they did before the illness. I do not put stress on him because he cant handle it. It is not normal for us to not do anything all day but for this illness there still in stress.
They talk about gone control but no word of mental coverage or treatment programs. My child is treated as a criminal. As if the menntal illness doesn't exist. It's disgusting and we are living in a third world country. I wish all parents would get on the same page and start making phone calls and holding Marches. You call the police they see what is apparent nothing happens....social services might as well take up the profession of writing obituaries. There is blood on so many hands on the upper level. Exhausted but refuse to give up.
Totally agree with you. If we could just mobilize and do marches like they did with the Parkland shooting.
My 42 year old son is diagnosed as paranoid schizophrenic. He is homeless and lives in the Newark, NJ train station apparently. Recently I called around and got him into a wonderful treatment program and got a case manager assigned to him. She got him him ID, SSDI, Medicaid, etc. He dresses bizarrely, covering his mouth, wearing tons of clothes, sunglasses, wool hats, or bandanna. We finally got him to see a shrink for "talk therapy" which I think he is still doing but refuses to get on meds. He had a family, son, a place to live, and a job. This is just a summary of his problems. Just when I thought we were having a breakthrough, the program he was in kicked him out because he refused to do anything to help himself. He was offered multiple housing vouchers and refused them. His father and I are divorced but united in his care, however, how can you help someone who refuses to help himself. He is rapidly deteriorating and I fear for his life. I pray and pray every day. Before this program, we were sending him money and that is when I found this amazing program. Now if he wants to ever reenter the program, he will be at the bottom of the list. It is a continuous nightmare. We fought to get permission to even speak to his case manager because of HIPAA. He is well aware that he needs to sign a release form. We have had sporadic updates due to me bribing him with money and it worked, but now he is out there again and I do not know what he is doing until I hear from him.
This can be the toughest part of some mental illnesses! That lack of understand one’s own illness is pretty common with schizophrenia, and it can make it hard for someone to accept help offered to them. As an adult, your son can make these choices, and you unfortunately can’t force him to do otherwise. I’d suggest speaking with your local NAMI chapter (national alliance on mental illness) about resources are available to you in NJ. Interventions range from calling 911 if needed to guardianship or civil commitment, and those all vary based on states and counties. Ultimately, the only thing you have full control over is your own health and well-being I hope you can find support groups through NAMI or elsewhere. They exist for parents of children with schizophrenia and may help you cope with this super tough situation.
I am dealing with something very similar with a 28 y/o son. He's home but he won't go to treatment or take psych meds and he's not on SSI because he doesn't think he has a problem so as a single mother I am not able to pay my taxes due to having to support him. It's wearing on me big time. Right now he's in a semi-manic state as he's coming in and out of his room with delusional ideas that I set out to ruin his life and am using him for some sort of financial gain. He's not even supposed to be living here with me. I'm about to call 911 and lie to them and say that he said that he's going to kill himself. They won't admit him if he's just completely psycho and they see him here with mom. And a friend who works at a psych hospital said that the process of conservatorship starts with a 5150 or several 5150s. Once they are in the system you can start the process. Problem is, getting him in the system. Now he's asking me to just give him a ride back to Santa Cruz where he'll end up back on drugs. He takes suboxon and he's been clean almost six months but at a high price on both of us. I'd say to you that maybe call 911 and have him admitted and stabilized for a few days and then start the process of conservatorship so that you can have more control but I also hear it's not an easy process.
After seven years our son33 lied about taking his meds physically harmed himself to be put in hospital few times plus mental wards has a Depot needle now last two months aggro listless and scary
I am so happy I found this site. I have been reading so much about schiz issues and none ever mentioned violence. I too have a son that we have been dealing with for 7 years now. Only in the last 3 years hes gotten progressively worse. He is sensitive to sounds such as Cars driving by with broken mufflers, trash pick up trucks, motorcycles ect...He literally runs outside to start a war and chases these vehicles on foot or by car. I fear for him as he may stop the wrong car and get shot or similar. He has been lately yelling the "F" word in our house and slamming doors to the point of shaking the house. I am terrified of him I was at the brink of suicide because I didn't want to live with it anymore. We rent and didn't want to get the landlord involved in evicting him but my husband saw that I was barely living anymore and talked the to our landlord to get him evicted. That night the police showed up and had him pink slipped to Psych hospital which only kept him 8 days and released him while there we moved everything in to storage and told him he was evicted. He is now on the streets living in his car, of course now I am worried about him getting himself killed as he approaches anyone. Of course as soon as he got released he refused to take his meds. I don't know what to do anymore. I no longer want him here at our house and it has been tough for me thinking about him out on the streets. I sometimes want to give in but when I talk to him and try to encourage him to take the meds he just refuses and says hell take care of it naturally with god. He thinks everyone is out to get him and everyone does not deserve to live on this earth. It's crazy he was verbally abusing us and we were literally walking on pins and needles in our home as every sound he heard triggered him. I can't talk to him at all about meds. He has been in a psych ward 3 times now. Untill he admits he will not heal. The other issue is he has read all about the side effects of the drug and refuses them because of that.
Hi Lei, my 26 year old daughter suffers with the same symptoms. I'm trying to hang in there but it's tough. Can't have a life with her constant disruptions. I hope we both can find some answers. God bless.
My 11 year old daughter just got diagnosed from everything I have read this is rare for it to present this young. Her father and myself are not together and he has just re-entered her life last year. He refuses to believe and says that the test are wrong. He does not want me putting her on any kind of medication and is now saying he feels it best she come live with him. I want to help my daughter and see her get better yet feel so lost and confused especially with her so young.
Hi Stephanie,
This is Susan Traugh, another author at HealthyPlace.com. I'm so sorry to hear that you are having such problems, but am excited for you that your daughter's condition was found so soon and that you can begin getting her the help that can vastly improve her life. It is understandable that both your ex is dealing with denial--this can feel like a devastating diagnosis. But research shows that the sooner you start addressing your daughter's problems, the better the outcome. Start by educating yourself as much as you can, and passing that information on to your ex so that he can do the same. A good introductory article on HealthyPlace.com is https://www.healthyplace.com/thought-disorders/schizophrenia-children/schizophrenia-in-ch…. Also, check out the "Resources" page on this site. HealthyPlace has compiled a professional and reliable set of resources that can really be a jumping board into understanding your daughter's illness. Next, I recommend that you contact your local NAMI branch. (National Association for Mental Illness.) They have many programs for families to help educate and support them in this journey. Their "Family-to-Family" program is a 12-week program to teach families about their child's mental illness and tools to work with their loved ones and find professional help. It is well worth your time. Finally, if he can, I would suggest that you invite your husband to meet with your daughter's psychiatrist with you and learn more about why he came to the diagnosis that he did. Stephanie, there is support out there for you. Not knowing what comes next is probably the scariest part of this journey. But, once you educate yourself and find a support system, it does get easier and less overwhelming. I wish you the best on your journey and feel free to check in when you need to.
Sorry to hear about that. Eleven years old IS a rare age to be diagnosed, so it can hard for anyone to grapple with. Hopefully she has a support system around her that can also support you. If she doesn’t have them already, a family therapist may be helpful to manage her illness but also help you as parents figure it out. Regardless of her diagnosis, if she’s having behaviors at school, the social worker can provide assistance. I imagine she has an IEP, too, and that can help both you and her dad measure what’s going on and what helps her when she’s having difficulties at school. Her father can certainly get a second opinion. There’s nothing wrong with healthy skepticism, and a second opinion may help him better come to terms with it if those tests still indicate schizophrenia. Meanwhile, try your local NAMI chapter (National Alliance on Mental Illness). Their whole purpose is to support families and provide education and resources. Best wishes to you and your family.
My heart goes out to all family members trying to help the adult paranoid schizophrenic. My 38 yr. old son was diagnosed about 12 years ago, received SSI and subsidized housing, and managed alright living by himself while he was taking his anti-psychotic medications. But as typically happens, he stopped taking them when he decided that he had been mis-diagnosed; he was not schizophrenic - he was psychic. He has hurt himself physically at least four times, permanently disabling his left hand, broken his leg while police pulled him to safety on a roof, and was found with no discernible pulse after slitting his wrists and swallowing all his anti-anxiety meds. His paranoia became progressively worse and in the last few years he gradually "fired" everyone involved in his treatment or supervision. He felt he could trust no one and was in danger in his own county, so began taking one-way trips, running through his money and getting himself stranded away from his home state (Calif.). We live in another state, but received hundreds of calls and messages a month from him in the last year. We have wanted desperately to get a conservatorship hearing initiated so that he could be forced to take his medications, but learned that family members (the ones who care the most) are not allowed to initiate the process (at least in California.) Calling his past mental health care workers with our concerns, we found plenty of sympathy and understanding, along with explanations of how difficult it was to accomplish a conservatorship if the patient is able to articulate intelligently to any degree. Everyone seemed to be waiting for things to get "bad" enough for someone else to be motivated to do the work necessary to make it happen. Finally, my son found his own solution to his problems. After his most recent impulsive excursion across the country just before this last Christmas, we tried to help him make his way back home and got him as far as Las Vegas two weeks ago. Then and there, he and his voices apparently decided it was enough, and he jumped 102 ft. from the top floor of an airport parking garage to his death. Though my heart is breaking, I realize this is just one more of the many tragic stories which demonstrate the state's concern with mentally ill patient "rights" over their needs - to such an extreme that family cannot even initiate legal intervention in their behalf.
I am so sorry for your loss and all of the suffering associated with mental illness. My son also is affected
God help them and us through this walk on earth. God is merciful and full of kindness for those who are lost.
I really feel for you Terri. It is the cruelest illness for everyone who lives with it. My thoughts are with you.
I'm so sorry to hear about your son. I think you should publish this story to make awareness that the parents are the experts on their own children and should be taken seriously. Unfortunately, California advocates so much for the rights of individuals that they do not see those who are clearly gravely disabled. I have an issue with my 28 y/o son who's recently decompensated. I was about to kick him out again as I'm drowning here. Now, after reading these tragic stories, I'm having second thoughts.
I have just read this and it is exactly the situation I am in. I am so sorry that your son killed himself. Mine is 'psychic', now taking hard drugs and likely to end it all soon. He has cut off all contact right now. Noone has not gone through this has any idea of the horror and how powerless we, the parents are.
Terry Jensen,...what can i possibly say to you. I'm so so sorry. I can not fathom. My son now lives in a locked skilled nursing facility. He is 33 and his diagnosis is schizoaffective. He lives independently for almost 10 years, off and on. I am his guardian, since 2008 and he resents me for it. I have tried all I know to help. But regardless in the end it is still their life, choices, path even illness. It is the worse thing on the planet. It is an evil curse that takes your child or loved one and steals their life, dreams. I can't imagine your pain dear lady. God bless you and your family and I pray you have healing and peace
Hi Terri,
I just came across this site and and felt sooo sad to hear about your son and so many other heartbreaking stories. I also live in CA and I just lost my 30 yrs old son to suicide on May 28th, two months ago. My heart is broken and still going through different phases of grieving. He was never properly diagnosed since he refused to take meds and saw doctors and after he passed, I researched all possible info and thought he might have some system for Schizophrenia ( he said he heard voices sometimes and saw shadows and believed he was an empath who had special power to feel other's emotions etc and God told him to cut off with his mother etc ) He only admitted he had depression and went to see doctors couple of times but he would self-diagnose and told the doctor what he had and what med he needed. He took the meds but usually just for a couple of weeks the most, then got off due to unbearable side effects. He was brilliant he managed to live independently on his own ( I supported him 100% financially ). He would not come back to CA and said he was afraid of the earthquake ; he would not come back to live with me since he said God told him to cut off with me ( his only support in every way ) and I was his spiritual burden that hindered his ability to be independent; he would change phone numbers frequently in the last a few years and I paid for everything and sent him money for everything; he would announce it was the last time we talked and cut off and I had no way to contact him unless he contacted me. When he lived in Seattle ( he chose to live them since 2018 after graduated from UC with computer science degree), I had to so-sign the lease for him all the time since he had no income no job, at least I know where he was and by looked at the credit cards expenses, it was my way to know what he did sadly ... etc. since he would not answer call nor emails lot of times.
Since last May during the pandemic, he told me he needed to drive to Portland, Maine and only there he could find peace.... I had no control and he just left and drove. He stayed in hotels and for the last year, he droved over 26,000 miles across the country .... Twice. I finally got him to apply for jobs and he got one in a week. I was so excited and happy for him. He drove through the storm to GA and made it to the irritation and I was hoping this will help him to get better. He lost it in 2 months after training since he refused to lie about his resume. We encouraged him to start again and he sounded confident but would not settle into any lease/ apartment but hopping hotels instead from GA to MA and back to GA. Without any warnings, he decided to end the pain ( I guessed ) by taking his own life. I know I have done everything possibly to help him but felt so helpless when he refused to get help.
If you want, maybe we can talk or email each other.? thanks !
My Son is 25 and has been homeless for 8 months slowly we have been making steps towards treatment. He told me he was ready to see a doctor take meds or whatever he needed to do. We signed up for ssi he agreed to an evaluation was honest about his symptoms and now he refuses the meds. I live out of state and have been financially physically drained putting him up in hotels because finding housing is difficult with his behaviors he was kicked out of his last place after attacking a neighbor. I feel like I have brought him to the water but can't make him drink. No matter how much I do and progress we make, i feel like I should be doing more. We have offered him to live with us if he gets on meds which has to be a caveat due to his aggression and other behaviors. When do we let go?
Oh, Lisa, isn't that the million dollar question? I'm so sorry to hear how difficult things are with your son right now. I went through a period where my daughter, too, was homeless, violent and resistant to therapy/meds. It is every parent's nightmare. While we, as parents, always want to do more and want to believe we can "fix" whatever is wrong in our children's lives, it sounds to me like you are doing all you can. Unfortunately, we can't get our kids the help they need until they are willing to step up and accept it. I think that may be the hardest part of this--knowing you're standing there with a life-preserver while you child thrashes around in the water and refuses to reach for it. Have you considered contacting NAMI (National Alliance for Mental Illness) to see if they have family meetings or a support group? It might help to be able to talk to other parents sharing your difficult journey. HealthyPlace.com has links to NAMI on the Resource page. For me, I needed to change my words when my daughter was most at risk. Instead of saying I "let go" (because do we ever really?) I told myself I was "stepping back" so I could be strong and ready when she came home. I consistently offered the help but also insisted she take her meds so she wasn't violent to other family members. But, I came to realize that I could not force her to want to get well...only wait, and hope, and pray that she would find her way. You are doing all you can do. You are doing everything right. I hope you can find solace and strength in that knowledge. And I wish you the best for your son, and your family.