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.
Kaye, R. (2011, May 31). Schizophrenia and Parenting: Step In or Let Go?, HealthyPlace. Retrieved on 2023, September 22 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go
Author: Randye Kaye
Wendy, I"m going to recommend a great resource for you. It's called Defying Mental Illness, and has detailed info about "the system" and lots of legalities. My book (Ben Behind His Voices) is more about emotional steps, though I do list resources as the story unfolds. It sounds like you need some really practical advice. This is NOT hopeless, though it certaily is challenging. You cannot totally solve this, alas, but there are steps you can take to help. Also read, if you haven't already, I am Not Sick I Don't Need Help - and see if your local NAMI chapter has resources, education and info.
It's great that your son is finally getting treatment. It's a start.
I have a 26 year old schizoprenic.I can not get help from anyone. I have asked the Marchman Center, SS, family, and his father.I am disabled and have a hard time just taking care of myself. The biggest problem is that he is noncomplient and says nothing is wrong with him and becomes very angry if I try to talk to him at all.He requires constant checking after because he leaves the stove on, water running or the doors open. He will not pick up after himself.I try but he refuses to talk to me at all. He is verbally abusive. I am trying to support both of us on my disability. Do you have any suggestions?
Hi Sandi -
have you called your local NAMI affiliate? They often have some suggestions as to local services that may help. I agree it is a very long wait until our loved ones are "sick enough" to get help - it was for us. While sometimes letting go is the only ultimate options, most of us fight like tigers until we get to that point - and it is a fluid conclusion (we fluctuate daily sometimes between knowing we must "let go and let God" and stepping in to help.
Have you read the book Defying Mental Illness? While I have lots of resources in my book, this one was released after mine and so is not yet on the list. There are lots of practical suggestions for navigating the system.
One sad thing to realize is that we cannot "force" our loved ones to take their medications. My son takes his, but he still doesn't think he has to. Have you read I am Not Sick I Don't Need Help? This and other helpful reads are pinned on my Great Reads about Mental Illness Board.
Also, Healthy Place has some terrific articles on these topics...and so does NAMI. Family-to-Family taught me so much - is there a way you can get to one of these classes? I learned here how to set limits on my son's behavior and take care of myself - but none of that made any sense to me until I understood his illness. I highly recommend it.
I hope some of this helps. So many of us are in this boat, and feel like no one will help. that's why I wrote my book after my son finally got into a recovery phase - to give some realistic hope as well as share the frustrations.
My heart goes out to you. It is so difficult, I know. Hang in there, and ask for help. FYI, at one point I had to make my son homeless. It was not easy, but it helped him grow up - and forced the "system" to get him a bed elsewhere. But it is a risk - as letting go always is.
I am so glad I found you maybe I as the parent of a 22 year old son who in the past 2 years was dianogised a paronoid schoizophrenic iam realizing after reading so manyother stories that maybe my son is doing pretty good in spite of the fact most days i feel his not
Hi gill im new to this but ive been reading other mothers blogs and i feel sad every time i open my eyes in the morning as all i do is worry how my 25 yr old son is dealing with his day . He also has schoizophrenia but i feel the same is he coping better than i think ? Ive had 8 yrs of seeing him hospitalized
My son is 28 and was diagnosed with schizophrenia at 18, he has spent the last 10 years of his life in hospital, at first he was not sectioned and used to come and go which iterupted his treatment, he was finally sectioned when he was about 20. About two years ago i was told he was treatment resistant, he responded best when on Chlozapine, but has had two bad reactions so can no longer have this treatment. During all this my son maintains he is not ill and that myself and the hospital staff are pltting against him to keep him in hospital. I see him about once a month (60 mile round trip) and speak to him on the phone. At first I used to see him more often and speak to him most days, this has become very difficult to to his increasing frustration and the fact that he blames me for him being in hospital. I cannot give him my home phone number or he would ring constantly throughout the day and night, he has my mobile number and rings me usually about 20 to 30 times a day (I have to manage his calls so have to have my phone on silent during work hours) this breaks my heart, but keeping him at arms length is the only way I can be of any use to him at all, he has little or no support from his fathers side of the family (we have been divorced since my son was 8). I am his only regular contact with family and I feel constantly under a huge amount of pressure because of this. I love my son but feel helpless and unable to support him. I know he feels lonely and lost in hospital and he has said things over the years that make me worry that his care is "questionable". He has had several consultants over the years, many named nurses, and seen other patients come and go, his most recent consultant has come to a point in his treatment where there is no more treatment that can be offered which hasn't been tried on him before, she has suggested that she would now like to try referring him to an ABI (aquired brain injury) consultant for a second opinion (in case there is any alternative treatment which could be given which isn't currently available with in a secure mental health environment). I have no idea where this will lead and what my son's long term prospects are, i just cannot see a future for him and although he is fortunate to have the NHS to fall back on his quality of life is still very poor. I have a visit booked with him tomorrw which I am dreading as I know that it will (as always) break my heart, he will be loving and happy to see me for the first five minutes, then he will get frustrated and angry that he can't come home with me so will start to shout and swear at me and then tell me to go, I'll drive home with tears in my eyes and curse a god whom I do not beleive in for allowing this to happen to my son and others like him, and year after year this continues in the same way, I would rather my son be physically handicapped, I'd happily push him around for the rest of his life in a wheelchair and deal with everything this would bring, at least he would be able to live at home and people wouldn't judge him.
Oh my - I can truly understand so many of your feelings. I know that our situations are different because psychiatric care is so different in the UK from the US, but a mother's heart is a mother's heart. I speak about the same raw, honest and painful feelings in "Ben Behind His Voices" - and how I worked through them -and I think if you read it it might make you feel a little less alone in your emotions. Also "Henry's Demons" is a good read from the UK point of view. Thank you for the courage to share your story here.
I read this and my heart breaks for you. My son has been diagnosed with paranoid schizophrenia and for over a year and a half it has been total chaos. He has been in and out of hospitals and is currently in one. He refuses to believe he is sick and nothing seems to be working. I too, would rather he be handicap and not feel the judgement and lack of support that I have felt so far. Lots of people act like he is some type of criminal because of his illness. I would love to be able to support each other.
This sounds so much like my son who was diagnosed at 18 now he is 20 but said he wants to kill me I was forced to make him homeless because of it. Absolutely heartbroken and can't do anything about it
My name is Jackie. I deal with a different look on life. Ever since I was little, I could here voices in my head, get highly paranoid, agitated, and violent. I just got diagnosed 3 months ago with schizophrenia and about 8 months ago I had my first children, a beautiful set of twin girls. Now more than ever my paranoia is getting worse. I face the daily struggles of fear against myself with my children. I am so scared that I will get angry and hurt them. I know I won't but it still worries me. I take medicine for it and the medicine may make my feelings of agitation and the violence go away, but it doesn't stop the voices or the paranoia go away.
I am sorry that you go through what you go through, but even though people think we have a choice on the way we act or behave, but we really don't. Think about it from his point a view. Try to find what triggers his behavior and try to avoid those triggers.
Hi Jackie. Thanks so much for taking the time to share your story, and your point of view. It does help to try and see it from your perspective. Many tell me that the meds do help them manage the impact of the voices they hear, but that they are still there. This must be so difficult to live with. I can only admire your insight and your courage, and hope (along with you, I imagine), that research continues so that there are better treatments until you get the peace, and respect, you deserve. Congrats on those beautiful babies! Randye
As I was reading the article about the mother with the schizophrenic son, I thought about my own illness and l live with my mother. I am more depressive than manic. My mother says nothing's wrong with me, yet she says I act like a zombie. I've suffered from bipolar disorder since I was 14 years old and I receive no support from my family. I had to suffer through this whole ordeal alone. Often I suffer from panic attacks and illusions even though I'm getting better. My two sisters ailenate me and treat me unfairly.
When I think of families with mental illness I also think of my father's family. I have several cousins who suffer from depression and schizophrenia. One of my cousin is suffering with bipolar disorder with me now. His sister says his symptoms are worse than mine. He screams and hollers at people. Last year, I was so filled with anxiety so bad I used to walk through the house at night, not sleeping or having the ability to sit down. I'm 58 years old. It's embarassing having to live with your mother and having her take care of you. My Case Manager, after a suicide attempt, told my mother to control my meds. She wouldn't give them to me. She said I should wean myself off of them. When I told my Case Manager what was going on, she let me take my own meds.
My mother and sisters treat me like I suffer from Leprosy. They go places and never invite me, like they're ashamed of me. The only supportive relative I have is my father's first cousin's wife, who I stayed with when I was 18 years old. At 18 I went to stay with my father's first cousin, who was a classic case of manic depression that there ever was. I often wondered why his wife, who is so supportive of me, never attempted to get treatment for her husband. He died of cancer at 56.
I often feel guilty having to stay with my mother and having her watch me but frankly she doesn't give a damn. I decided not to have children or get married. Sometimes I blank out and exhibit outrageous behavior. If I get upset enough I might attempt murder. One of my sister's likes to start arguments with me and the first thing I thought of was stabbing her with a kniife. I told her, "You know I could kill you and not go to jail because I'm mentally ill". Daily my mother leaves me alone and never aks how I feel. She still won't admit something's wrong with me even though my father committed suicide 10 years ago, September 12.
I’m sorry to hear about your situation and learn that your family cannot be more supportive in the way you would like them to be. Everyone wants to be loved, understood and accepted for who they are. It is also difficult for parents and other family members who must deal with their own issues when confronting mental illness in the family. NAMI has a wonderful “Family to Family” program in many communities around the country to help family members with education and support. Here is a link to more information on that: http://nami.org/Template.cfm?Section=Family-to-Family&lstid=605. At some point, maybe your family members would consider taking the course. Besides the mental health forums and chat here on HealthyPlace, there are also NAMI face-to-face support groups for people with mental illness. Hopefully there is one near where you live - http://www.nami.org/Template.cfm?Section=Your_Local_NAMI&Template=/CustomSource/Affiliate… .
in the meantime, NAMI also has peer-to-peer programs that may be of help to you - or is there a clubhouse in your area? If your family can't support you the way you would like, there is support you can get elsewhere
I hope this helps.
Well the last couple of days he has been a little better although I don't know how long that will last I had a talk with him last night again about housing, and disability, and he didn't blow up I was amazed ,I figure if I take babysteps with him first get him living close to us but not in our home that will help us all. I will definitely check out NAMI Thank you so much :)
Your story is heartbreaking! Have you read Web results
I Am Not Sick I Don't Need Help: How to Help Someone with Mental Illness ... It is a really good tool In learning how to speak to and get buy in from your son to get help. My son has schizophrenia as well. Fortunately I was able to get him help and housing but it took him being homeless for a year+ after his last break. I am fearful everyday he will lose it because he is not consistent with his meds and is now hearing voices again. I live out of state and visit once a month and contact his case manager whenever I see trouble the only problem is if he refuses to be compliant there is really nothing I or they can do. I enjoy him when I can and endure when I have to it's a rollercoaster sometimes I wish I could just jump off.
My 31 year old son was born with learning disabilities and he is Bi-polar He has always had a very violent nature even as a child Once he was banging his head I think he was 10 I literally had to sit on him until he calmed down We had many episodes like that. When he was 14 I asked him to take out the trash everything was calm and he got up walked to the kitchen and began choking me My daughter his twin sister just happen to come in the house She screamed your killing her, she's turning purple She began pulling on his shirt I remember his eyes they were a Whitish color All of a sudden he snapped back to reality. I have always been afraid of my son. As a child I made sure he received all the help I could give him Even institutions
Now recently 2 years ago he became paranoid schizophrenia He is scarier than ever My other children want let him stay with them for the same reason he is violent, he bosses you in your own home he lords over you When he is not yelling and throwing a fit he sits quietly and gives everyone evil looks He is very controlling
I also have a mentally challenged son who does live with me but he is just the opposite of my other son He is like a big teddy bear.
My son with the schizophrenia has no where to go no money etc I have had him set up several times to get housing, food stamps and disability he will not do it He tells me I am just trying to control him
I want to help him, but he will not listen to anyone and I can't talk to him or he goes off I have already called the police several times in the last two weeks.
I want to help him so bad, but he want do anything he refuses and tells us we just don't want to help him He wants us to get him a lawyer for his hallucinations that he believes are real. I think he has lost all sight of any reality I told him he couldn't stay here any longer if he doesn't try to help himself He said give me some gas money and I will go back to Ft Worth
He has lost all of his friends there is no one in Ft Worth to help him he has ran everyone off I am a single mom and I have to protect myself and my other son I don't even go to sleep until he does and he stays up all night He was in my face screaming and I saw those white eyes again it scared me to death. They actually change color when he goes into a certain frame of mind. I so want to help him but I am afraid ,I have to let him go I don't know what to do. I was going to get guardianship over him but my daughter said if you do that Mom he will come after you the first chance he gets and no telling what he would do to you. I know she is right.
Oh, I know I am ranting but my heart is breaking.
Oh, Dusty, what a heartbreaking story. I am so sorry that you are going through all of this. Are you getting any help and guidance? NAMI? The police? It must be so frightening to think that if you take an action things may get so much worse - and yet I'm not sure that by not taking that same action you are guaranteed that nothing will happen. There is so little control when symptoms are as active as those in your son. I am not a professional - just a mom, like you, trying her best to understand, advocate, educate, and take care of the whole family. Please seek some expert advice - and if it's not good advice, look again. Start with NAMI and/or your local helpline. My heart goes out to you.
So sorry for what you are going through ?. Have you tried going to a judge and asking for involuntary commitment? He will be picked up and taken to the psychiatric hospital. I have a son that is 28, he was diagnosed with schizophrenia when he was 14. It is an every day battle that sucks the life out of you. There is no easy answers when dealing with mental illness. I hope that you can find the help that your son needs. One of the biggest problems we face is that there is really no where to turn. The funding for mental illness is almost none existent
The dilemma to care or to let go the child with schizophrenia presents, for disturbed parent, a Big Question in any case. By me, as professional worker in Mental Health Service, the best way to manage this serious illness is to be a kind of parent like they with mentally health children. This mean, that as parent should be a partner with your illness child in long-time treatment of its mental disorder, without any surplus careful undertaking. There are some specific demands for parent in fruitful treatment of child with schizophrenia:regular medication, instantly psychiatric intervention in aggravation of illness, and mostly important is psych-education on nature of this disease. As we know, every child has got its characteristic abilities, desires and habits that request an individual approaching of parenting. Why this statement should be exclusion for child with Schizophrenia?
Dear Dr. Ferati -
I couldn't agree more. Will you be my son's psychiatrist, please? :)
In the meantime, may I quote you on this when I speak to providers or write articles about mental illness? It is so well put!
When your child threatens you....take it very seriously....my son at threatened my husband and I didnt think it was possible that he would really do anything and guess what he stabbed him in the head with a knife and almost stabbed me too....he ended up in a long term psych hospital for 3 yrs now and they tell me he may never get out....what amazes me is I knew he was diagnosed with schizophrenia but I never believed he would do such a thing ....ever.....he is smart, he graduated college, got a stock broker license, but the voices in his head were telling him to do terrible things and finally couldnt fight them anymore...he has been on every medication there is and still has the paranoia and delusions....this is a terrible disease and I keep blaming myself, why didnt I see it earlier, why didnt I see this coming.....but what could I have done even if i did....if they arent violent, than there is nothing you can do .....it has to happen.
Oh, Rita - I am so sorry. This illness....so awful. You could not have seen it earlier. Show me the "Baby book" that tells us what signs to look for in case your child develops a mental illness later in life...yeah. I know, It doesn't exist. As NAMI taught me, "You can't know what no one has told you." This is not your fault. But that's what we parents do -- look for what else we could have done. Part of what helps me is - eventually - letting go when I must, and letting my son's journey unfold by itself. But - I must admit - not without one hell of a fight first!
Dear Mominga, What Randye said, is so true. You have to learn not to take this disease personal, my 24 yr old son has schizoaffective & I know how incredibly hard this is & it's never ending, round the clock worry & staying on them but it's so worth it. I have met so many mentally Ill with no family support & I can understand why it happens but can't comprehend how it does, if that makes sense??? They need us & it's not their faults, this is such a debilating devasting disease that affects their brains, the very thing you need to live a productive decent life & people do say oh they need a good kick in the ass & I say would you tell a diabetic, a cancer patient, someone on dialysis that? Don't give up & hang in there if at all possible.
Thanks Sherry! True words...
Oh this is so true. I get the same response from people. "why do you put up with it? kick him out" "give him to me for a month or 2, I will sort him out" "i would just have him put in an institution" . Regarding this last comment - here in South Africa, even getting the right kind of treatment is difficult, never mind putting him in an institution. We are about to move out of the city, to a country area, and the closest hospital is 2 hours away. I have made the decision to move into the country because that is what I have always dreamed of, that is my place I want to be. I plan to farm on a small scale with lavender, for the production of essential oil. I feel that working this farm may help my child. BUT the psychiatrist has now informed me that they will not be able to have him attend their outpatients or see her, because we are moving "out of the catchment area" I now feel like I am back at square one. pretty hopeless. and I was feeling so upbeat and positive about this move. thinking I could take him through once a month for the necessary session with the doctor and update meds.
My name is Jessica my son is 20 was diagnosed with schizophrenia right after his high school graduation. I have tried many times to help him. He has said before he wanted to kill me and I have 2 younger children so I was forced to put him out of my home. However I have had him involuntary committed and set up arrangements for him at a shelter and he left and came back to my house. I had to turn him away because of fear of what he may do. But I can't stand the thought of not knowing if he is ok. I don't know what to do feel so lost. Heartbroken
My son 25 and about to be released from his ninth hospitalization in 4 years. He admitted himself because of fear of hurting himself. Once he got there and was stabilized he stopped taking the medicine and they released him. this was the first time he made a verbal threat to me while in the hospital and they still did not mandate that he take the medicine because (it was only over the phone) and he did not threaten anyone else. I am only one left who will deal with him in the family. I feel hopeless.
"Hopeless." I know the feeling. Your story rings true for so many, unfortunately. This I have learned: to do what I can (and I fight like a tiger) to help my son, then let go of what I must. Sometimes there is nothing more I can do for Ben, and roads he must go down alone while I watch from afar; what I can do when this happens is take care of myself and the rest of my family. That balance is so difficult; but, we must set personal limits to protect our own sanity. My next post (coming soon) is about the debate between those who think medication is somewhat of a scam, and those of us who know that without it we might lose our loved ones to permanent institutional life.
Your son's threat to you can from his illness, not from the boy you raised and obviously love. That doesn't mean it shouldn't be heeded, however. Odd as it seems, it probably wasn't personal. Your son is still there, underneath the symptoms we hate so much.
I can relate if you have MY son is a veteran with some of this issues and am the only one he has.
this rings many bells for us especailly the last paragraph .thank you
You are most welcome. Sometimes it just helps to know we're not the only ones...
My son doesn't have schizophrenia but he does have adhd and severe anxiety. I know it's not the same but I worry so much about him. He wouldn't go on a school trip today because of his anxiety and it was a really nice trip to NYC. I'm scared of what he is missing out on. I'm also scared because his adhd makes him have these horrible rages (only at home) but they are so bad he will start throwing stuff around, flipping couches and hitting my husband and now me. Not hard but still. I worry so much.
Hi Michele - Parental worry is universal, I think...and with ADHD, anxiety disorder, schizophrenia, etc. there seems to be so much more to worry about, so many losses we feel for your children. I hope you and your husband are getting some support and education about how to process all this. I know it helped us tremendously - still does. Thanks for writing, and I think HealthyPlace is a great place to start for info if you need it. Learning communication techniques saved our family dynamic in many ways. My son still has his illness, but at least we have learned how to react in a way that doesn't escalate an already tough situation. So hard. I know.
Is there anything else going on with your son? Maybe bullying or something he won't talk about? It just sounds very familiar.