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Schizophrenia and Parenting: Step In or Let Go?

May 31, 2011 Randye Kaye

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.

APA Reference
Kaye, R. (2011, May 31). Schizophrenia and Parenting: Step In or Let Go?, HealthyPlace. Retrieved on 2024, June 19 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go



Author: Randye Kaye

RoseLilly
June, 6 2023 at 7:21 pm

Heres our situation; I'm a 52 yr old mother of 3. My youngest 25 yr old son, has been Dx over 3 yrs ago with paranoid schizophrenia. 4 long hospitalizations, a day hospital one month, and many therapy sessions, and calls and visits to the director of the place we go for his treatment in our county. The last two hospitalizations were involuntary. He was a high achiever in school. Right after graduating high school, he worked, paid his way through two associates degrees in media arts. Has won half a dozen awards for his work (one national 1st place award, the rest state level).
Fast forward to the latest hospitalization. He was delusional and back on the "government entity after him", various delusions about fbi after him or whatever the delusional flavor of the day is, he became mixed catatonic. Everyone around him notices. He was working at a casino (#4 job he was fired from before but people keep giving him 2nd/3rd chances-bless him as people do truly like him and he's a sweet guy when hes on meds) his boss called me and said something was up bc he wasn't showing up for work. So, i went to his apt and he would not answer the door, his landlord said "hes back to acting strange" so did his neighbor say this. These people also really like him. Hes very likeable, Except when off meds.
After a week or so of no answering the door I called in a wellness check. This went on for another week, cops going over and knocking and him not answering. I then went to the court and filed a petition for him to go into the hospital again. This is where now it gets sticky...this took another over a week to get the police to go into his home and take him in (with another amended court order and a landlord with the key to let them in).
At the hospital he punched a security after he was put in a gown with nothing under it. He took off running out of the hospital and ended up in the parking lot totally naked. His gown fell off during the fighting off the security guard. This hospital KNOWS he escapes. He's never gotten physical though. ughhh. But come on, I've warned them relentlessly that we need to put safeguards in place and it falls on deaf ears UNTIL, you know something happens.
He was sent to a hospital two hours away where he spent close to a month and was stabilized on HEAVY meds (Haldol, Clozari-for the delusions/hallucinationsl, Valium also for a bit bc of the catatonia).
Today marks the two month mark since that episode and yesterday we go a notice for him to appear in court. He's been charged with assault, indecent exposure for running out into the parking lot naked, and disturbing the peace.
In my mind, I'm thinking "whew" this couldve been worse. Thank GOD it wasn't worse. Because you see, I live with family secrets....there are others in the family that have this evil disease and the outcome has ranged from suicide to prison for murder. I am SO sick of this disease. My son doesn't know about the worst family members who have had this....fortunately i've been able to keep those out of the equation here, but in our case there's something vastly messed up in the gene pool. I have been dealing with it since my first memory at 6 yrs old (Mommy Dearest with her photographic memory, Munchausens, S, and High IQ-smart as a whip and got so good at hiding her dirty deeds, she was able to severely hurt people and never be held accountable even after countless State Hospital stays). I'm now 52 and I'm wondering how I was dealt such a nightmarish hand. Never thought my youngest son would get this horrific disease.
I have the utmost empathy for anyone dealing with this. IT IS A NIGHTMARE I AM TIRED OF LIVING TO SEE. It drove me right down into the ground with alcohol BC NO ONE WOULD EVER HELP. At least now, with him there is much better help than with my mother or other fam members I've long since walked away from. I do feel blessed simply bc I myself have been sober for years and got away from the ones I could no longer take abuse from. I could not begin to imagine what it would be like trying to help my son while still using alcohol. Yes, being around it growing up I learned quite young, wrongfully so, that alcohol could ease the pain, unaware that it would make things worse in the end.
Right now I'm just praying these misdemeanors will be all that happens, but yah right....there will be more hospitalizations, more issues with son along the way, I'm just praying all it will be is hospitalizations and helping him through whatever he goes through, mild issues, you know? Sad when mild for me is misdemeanors, court appearances, help with bills, emotional support, daily stuff, making him shower, get outside, yada. The never ending days of missed work....long ago I learned to deal I'd have to be self employed, my own boss so I could be super flexible to deal with whatever is dealt.
Now I'm seeing signs with a gdaughter. UGH. How long can I keep dealing....
Tonight I sent him back to his own apartment. He lives 5 miles from me and is allowed to drive and has his own vehicle. He was over going down the rabbit hole on his misdemeanors. Probably by tomorrow it'll be a full on melt down equipped with many delusions on how the FBI is setting him up, ughhhghghgh. I told him go home, I'm not taking that trip with him.
At some point I have to focus on keeping my life moving in a healthy direction. If I'm not healthy I am of no value to him. Period. Today, I set boundaries with fam. I don't mind helping, but not at the cost of my own financial, mental, emotional health.
For now bc he has been court ordered to take his meds and his shot every month (Haldol and Clozaril), he's somewhat coherent and orderly even if he's on a rabbit hole dive at the moment. I'm hopeful and have faith that on his own, at his own place he will work it out (or not). I am going to relax tonight....at least for one night. I've learned that yes I can be there, but I need breaks. And I'm not afraid to send them packing for a few until I recharge.
Good luck everyone. We aren't perfect, we also need rest, and we can only do what we can do.

Cassie
April, 20 2023 at 9:07 pm

Our stepson we helped raise was diagnosed with S recently, we knew for a few years he had something wrong, from the Russians being after him to him laughing at inappropriate times and things, the sleep issues, the dilutions, you name it. He is on meds now ( when he remembers to take them) and now thinks new things will make him feel better, such as a car, but we don't agree. He is working, but can barely manage part time..... full time is out of the question. He is a very sweet kid, but not very bright. He did not do well in school, and has really no friends to speak of. I feel bad for him, but really don't want to deal with him either. I know this is life long and am hoping at some point he will get his stuff together, but I guess only time will tell. The stories on here are heartbreaking, and I do hope he does better in time, but I'm just not so sure how optimistic I am knowing how he was before the DX. Frustrated in Seattle. Cassie

W
February, 27 2023 at 3:00 pm

My friend is paying for an Asian bride to come from overseas for her adult (late 30s) schozophrenic son who was involuntarily commited last year, now released, and was violent in hospital. It is hard for me to hold my tongue about the risks to this young woman being brought from overseas to placate the fellow, who refuses to stay on medication, spends all night on the computer, is incapable of doing any work, becomes fixated making conversation difficult and has been wholly supported by his mother since he was a teenager. Should I just stop talking about it with her? As a mother, she feels there is nothing else she can do.

Mike
December, 14 2022 at 7:21 am

Our daughter is 34 and about 1 year ago, something triggered her schizophrenia. She has withdrawn from everyone in her family and most of the world. She has blocked anyone on her phone that she thinks is a threat. Now; not paying her rent or bills and has shut out the landlord who is a friend and wants to help but with no luck. Now they have no choice put to evict her.
Where do we go from here? Most of the family thinks just to let her hit bottom and then if she reaches out to help any we can. Some want to just keep paying her bills and just let her sit in the house with no responsibilities. Never been on medication and impossible to get to her when she refuses to talk to ANYONE.
Help.

Lee Trevino
April, 3 2022 at 3:47 pm

I have heard so many of these stories and have lived them too. Our mental health care system is broken and our leadership only creates more bandaids.
Then there are those that believe that Jesus, God and prayers will make it all better.

GEllis
July, 12 2022 at 11:15 pm

I have lived this experience for the last ten years. I am exhausted.

Cassie in Seattle
April, 20 2023 at 9:17 pm

So this is what we have to look forward to? Years of misery and fighting to get help? Because it all exhausting already. Our step son was DX with S about 6 months ago, but we knew a year ago he was sick. The delusional thinking, hearing voices, and on and on. He's not a smart kid, and never did well in school, has no friends to speak of, barely works part time, doesn't always remember to take his meds, and thinks new things can make him feel better, such as a bike or something else. I love him, but I don't want to deal with this.... it stinks!! And I've already had to deal with another child with a brain disorder.... I'm burnt!

Christine Cooley
February, 28 2022 at 2:10 pm

Please help me. My 27year old youngest daughter violently attacked me whilst having a psychotic episode. She wanted me dead. My sons came and took me to where they live so I'd be safe. I don't know what to do My daughter was arrested then sectioned. I am so worried about her she seriously hurt me broken ribs and wrist. Large bruises everywhere on my body. I don't think she aware of what shes done

Hilary
March, 28 2024 at 7:28 am

Hi,
So sorry to hear this Christine.
You are welcome to email me. Anytime.
I am sorry you are struggling in such a hard situation. It's not an easy thing to go through when you love someone and they are your adult or young child. as well. I
Its v hard to talk about too.
I hope you and yr daughter are setting some boundaries that suit your situation (safety wise ) soon ...you would or are doing the right thing to set boundaries. together in writing, maybe even legally would be good.
Enforced living arrangements by a real estate agent or court is sometimes best in the end if all else fails, even though its v hard- or a group home while you think on what to do might be good -easier said than done...
All the best to you, yr daughter and yr family

Joan
January, 18 2022 at 12:08 pm

My Adult son has 'simple schitzophrenia' Diagnosed 5 years ago and hospitalized (voluntarily) after phsychotic episode. Discontinued medication after 2 years. Increasingly deteriorating. Now Can't work,sleep, watch tv. computer, use phone read,play music (amazing natural musician). Can't communicate other than voices in his head. Can't travel . Just walks in and out of house and along the village where we live. GP useless. He/I desperately need help!!!

Teri
July, 22 2021 at 11:08 am

I feel for each and every one of you who are going through this heartbreaking nightmare roller coaster. I have been dealing with this for 5 years with my son who is 26. The judicial and mental health system are broken on so many levels. Each state has different mental health laws, some much better than others. For example, I live in Georgia. It is very difficult to get mental help and resources here, and our homeless population is ridiculous, because people with mental illnesses can just roam the streets unmedicated and live in tents with no accountablility or structure which usually ends in disaster. People like my son and your loved ones need accountability, boundaries, and structure. Otherwise, unmedicated they can act like wild animals which is not safe for anyone. New York is one of the best states with some of the best mental health laws. They even have a Hygiene law there for sanitary and health reasons. People with mental illnesses there are made to be accountable and to comply with medication or treatment, or they are picked up and taken to a psyche facility involuntarily to be stabalized. In turn, homeless population is much lower there. I believe people should have rights, but when they are obviously unstable, they need medical and psychiatric intervention against their will for the health and safety for themselves as well as others. It's up to the lawmakers and state to change and improve laws for the better. It should not be this difficult to advocate for what is best for our loved ones. Something should have been changed years ago

Sara Marie B.
November, 1 2020 at 5:51 pm

We are willing to relocate just about anywhere to find good supported living options for our 26 y.o. son with SchizzoAffective Disorder. He is the youngest of 4, we are both in our 60's and we are exhausted. Josh was the most challenging of the four children, and currently, as much as we love and adore him, he is more work now than when he was a toddler. We realize that the older he gets the more dependant he is on us. We feel we are disabling him further and he will not grow and develop independence as long as he is home with mom and dad. However, we know he needs some level of supported living. A good group home or supported living apartments. We can supplement about $2000/month in addition to his SSI. Most of the good places we have found are tens of thousands per month!!! Who can afford that? I'd love to hear from anyone who is aware of good supported living programs out there. You can email me at jbengry@aol.com.
Thank you kindly, Sara Marie B.

Barbara
December, 12 2023 at 2:22 pm

My Sister works in Mental Health field and told me that Connecticut sets the Gold standard for mental health care and group homes that work. I'm in my late 60s, and feel awful I can't help my adult child or control her behavior. I wish I lived in Ct, but financially can't afford to. Connecticut State Medicaid pays for this so it won't cost you anything.. I'm hoping that helps you.

Marybeth
November, 7 2019 at 4:17 am

Hi after reading many on this board I too have a son that is a paranoid schizophrenic n 25 yrs old! He won’t see a specialist or take meds n blames me for manipulating him into see our dr. He says he can’t go into stores cause the people talk about him (delusions)! His paranoid schizophrenia started well he called it (IT) started he said to me age 17.5! I would love to get involved more with mental health to change for better mental health! My son was stopped by police back n may for no signal usage n he has never been n jail n this bought on his phsicosis worse again! We had to hire a attorney for him! Yes I’m scared to be alone n my home with him alone he had knives but they disappeared plus our kitchen knives I put away!! We need. To advocate for better mental health! Most mentally ill end up n prison, on the streets medicating themselves with all sorts of drugs n this can not go on! Nami is ok but we need to help ourselves for better mental health for the ones we need help for! We have voices n we need heard!!

Tiffiny Williams
November, 11 2019 at 2:12 pm

I totally agree! I too have a son who is schizophrenic and he refuses to take his medication or utilize mental heath services. It is so painful for me to watch my so deteriorate and not be able to do anything about it because he is an adult. I strongly feel that the laws need to change where individuals with serious mental illness such as schizophrenia should be mandated to take their medication. My future plans is to advocate for mandatory laws for those who have mental illness.

helen anzelmo
January, 14 2020 at 11:30 pm

My son is 19 he is my only child . He attended special education in the 11th grade he was smoking pot this was the beginning of what has turned into a nightmare. He changed no longer did he speak of his dreams to be in the military no longer did he want to bathe, no longer did he want to go to school . I totaled my brand new car trying to get him on the school bus. Then he got into trouble realizing it was more mental than criminal he was put on probation . 3 am he is agitated and he jumps on top of me screaming we have to meet god its time to go with god I tried to calm him down and ened up taking him to ER they admitted him for observation and discharged him the next day. I sold our house and thought a change would be good joe continued to only get worse he stopped talking and became catatonic he would not respond to me stayed in his room at night he would cry and scream I called nami I calledhis old therapist I called police I called mental hospitals they all told me the same thing until he hurts himself or someone else theres
nothing we can do finally the crisis team picked him up after he threw a vase at me called me a bitch and cussed out the crisis unit4 or 5 more times after that in a period of 6 months then he slit his throat right in front of me every time he got released he refused meds once agian 3 days later without balancing him on meds he left the house gave me a kiss and now he is in prison for attempted murder he hasn't stood trial because of a incompetency hearing that has had him in limbo with no meds and treatment for over a year. He is facing a life sentence he looks at me in court like help me mom one time he was in court and asked me to hug him and I couldn't the first time he went to court they pulled him in screaming. He thinks he is married and has children this is killing me and its so unfair the mental health system failed him mental illness is not a life choice somebody please help me inside I am in agony with gut wrenching pain .
once there was joy that filled the air
my beautiful boy with blond curly hair
he held the world in the palm of his hands
with all of his dreams and all of his plans
he now builds castles in a world of his own
a illness has taken him far from his home.

Sara Marie B.
November, 1 2020 at 5:55 pm

Hazel,
so sorry to hear what you and your son are going through. this is heartwrenching. Do they not have a process for mental health court in your area? Hope he gets the help he needs.

Cindy holloway
November, 25 2020 at 6:45 am

I so feel for you.. l have lived in this system and it stinks .. my son is 27 and l have seen him catatonic 4 times .. he has been in state hospitals for 3 years of his life ..1.5 million has been spent so far on his illness..it’s been such a tough road and very little support from family at all.

Zen
November, 29 2020 at 1:41 pm

I met a man online and he seemed so perfect and wonderful. He has masters degrees and bachelors degrees and said that he just couldn't find work in NY.
I offered him my spare bedroom to start over in a growing city with much opportunity.
9 months of every dream coming true for me ended suddenly and abruptly when his mental health quickly declined and he assaulted my son then, kept me hostage for 2 days...after which, he turned on me because I couldn't tell him what was in his head...he ran for the kitchen knives, but i already had the forethought to hide them. This is when i was able to run for the door and escape.
He's finally back home with his parent's and ive since learned that this has been a lifetime problem that has gone untreated.
I finally stopped receiving his texts which usually made no sense. On bad days he accused me and everyone else of trying to kill him, on good days, he almost takes responsibility.
I felt bad for abandoning him, but i had to let go for my own mental health. I had no authority to help him anyway. I just wanted to be there in case the man i loved came back.
I will say, ive since done extensive research on the subject and though he didn't drink alcohol or do other street drugs, he did smoke A LOT of weed when he came to live with me and I found out that TCH triggers psychosis in schizophrenic patients!

Stephen
September, 11 2020 at 2:37 am

I totally disagree!
I have schizophrenia and refuse medication.
1st how about u try the meds before you think they should be mandatory. The side effects are awful. Could u deal with Tardive dyskinesia? They cause weight gain, rot teeth, can mess with liver or kidneys and the list goes on.
Meds may be good whilst in crisis but should be slowly stopped over time with psychology.
I’d rather have a healthy body than a healthy mind.
How would u deal with life being medicated and feeling flat whilst everyone else around u is having fun.
Medication further isolates you. And causes more problems.
Stop thinking about yourself and put yourself in the ones sufferings shoes.
Psychiatrists are all about meds.
Psychology is all about working on the issues.

S.Ewood
March, 3 2021 at 12:02 pm

This is also a nightmare for family that has to watch and experience this daily for years,so trust me,it isnt being selfish.It is a nightmare for EVERYONE involved.I'm not sure what the answer is,I struggle with this with my son daily.I hope and pray that you and your family has peace.I also pray for help for all who needs it in any way they see fit.

Lisa
July, 2 2021 at 4:43 pm

How are you doing today Stephen? I came across your very well written comments today... while looking for answers as to what I can do to help my 25yr old daughter who was diagnosed with schizophrenia (in August of 2020). I agree with your end comments of psychiatrists and psychologists... absolutely. I can only speak for myself when saying that... , I don't feel I'm being selfish when I'm trying to get my daughter back. She already had asperger's to begin with, n had never moved out .. or experienced even a little bit of normal teen or adult life. I guess your a high functioning schizophrenic? I only have my own experience, and it's painful 💔
N getting worse.
I stopped giving her meds within 2weeks....
One after the other, .. because of side effects. She's in a totally different world ... 98% of the time. Without medication. I'm jealous that you have the ability to be so eloquent in writing your opinion in the first place. My daughter can barely form a sentence. 😣

Jani
February, 7 2023 at 4:08 pm

Asperger’s usually isn’t a disorder that would be severe enough to prevent your daughter from taking part in teenage milestones or moving out. I was a therapist in a psych ward for many years. I no longer work in that area because family members/the courts/mental health practitioners are abusing these people. You need to try to have some empathy, it’s true the “treatment” is worst than the disease itself and none of the medications have independent studies confirming their effectiveness in treating the symptoms that much out weigh placebos. You need to think of it as having cancer, painful and then your mother forcing you to endure barbaric treatments that have zero efficacy and deem you incompetent because you do not want to needlessly suffer. Sounds messed up right? That’s exactly what you are trying to do to your kid. Oh you say she is better on the drugs… unfortunately you as the mother have rode colored glasses, you will see what you want to believe. Oh the doctors say she is responding to medications… sorry to drop some knowledge on you but a lot of times we as professionals want to believe what we are doing is helping even if it’s not. Besides it’s job security, money in our pocket, and an opportunity to write research which equals notoriety and fame. Really the only one who could ironically offer some insight is your daughter.. but no one cares about what she wants you are good with controlling all of her rights and dignity and agency of being a human and forcing your will on her.

margaret chevalier
December, 2 2021 at 3:11 pm

My daughter has schizophrenia and the only thing that saved her was her meds. Otherwise she was psychotic and mean and getting in legal trouble. The side effects are not awful if you are on the right meds. She has not gained any weight, she works, she works out at the gym, her teeth are white and she has better hygiene than the rest of us. If you tweek your meds right, you can get it right. She is not isolated and belongs to a nice church group. She is not so thinking of her self as mentally ill are prone to do, but thinks about others also.

diane
March, 22 2022 at 9:26 am

what meds is she on

Rob
March, 11 2022 at 9:03 am

My 19 year old son is unmedicated, he is genius level intelligence and has been searching for the proverbial city of gold, that is self treatment with diet and supplements. Since he began his quest he has significantly improved without drugs. However he will never be able to live on his own. He is driving a wedge tween my wife and I but I love him too much. Blood for blood he is mine! We will swim or sink together!

Danielle Tinsley
August, 5 2022 at 11:09 am

Rob
I would love to talk to you about ehat your son is doing to improve. My 24 year old son has tried multiple meds with horrible side affect. He wants to be off meds. I'd like to support him, but safely.

Mari
September, 27 2022 at 5:03 am

hello Rob
If interested, check out Dr. Ken Berry and Dr. Eric Berg on youtube. They accidentally found out a Keto diet helped their schizophrenia patients. Good luck.

Egel simekus
March, 31 2024 at 7:54 am

Kudos to you
Stay strong !
Why would anyone choose to be a vegetable
On antipsychotic meds
And yes the real issue is the end organ damage with these meds
Therapy may help -please consider

William
March, 6 2020 at 5:53 pm

Marybeth been there done all of that and finally had to get a Protective Order to remove my son from home and keep him from returning after several attempts to do harm to myself and his mother. NAMI is just a front to gain money for their own operation and do nothing in assisting the many suffers of the serious mental illness. You are correct that we as the family members who are their only support need to have but are limited because of their rights as an adult. It is sad when your son has to become homeless in order to receive any help if they want it, my son chooses not to get the help he needs and remains among those on the street. We can only pray that he changes his present situation.

marilyn rowe
October, 16 2019 at 11:37 am

hello and thank you for this site....I am about to lose my own mind here. My son is 33 y.o. and has been diagnosed with schizophrenia since 18. At the age of 18 a middle aged man preyed on my son, got him into the gay life style ( he was not gay ) and has taken every dime of his ssi since then..My son contracted hiv while living with this man. 4 years ago my son came back home but still gives this man every penny he gets...the man bouught a house with the money and leads my son in to believing it is his house..makes my son pay utilities, insurance, and taxes. no one lives in it....my eldest son is attempting to purchase the house from this man so his brother can always have a place to live in life but the man is dragging his feet...won't evey give my son the 60,000 he owes him. I am too old to deal with this anymore and I need to let go, I just don't know how....it's killing me...I support my ill son in every way, house, food, transportation, clothing, etc...everything.....i am going to die before him...oh jesus

RILLA NATHAN
March, 25 2019 at 1:05 pm

I'm so thankful to run across this...I have a 27 year old son with schitzoafective.. and have gone through it all.. I hate that our country has no help and especially my state of Illinois. I think all of us mothers need to start a movement and make some changes. Our children don't deserve this...

Val
July, 19 2019 at 1:18 pm

My son is 33, diagnosed 2 weeks before his 24th birthday with schizophrenia. He has his own apartment, is on SSD, has medicare, supplemental insurance paid through the state and he has EBT. He lives in St. Louis, MO. I fought for everything he has... he also gets an injection of Invega Trinza 4 times a year... he won't take pills so no anxiety or depression meds. He drives, buys his groceries, smokes like a chimney, hardly showers or brushes his teeth, sleeps in his clothes and shoes during the day because he paces at night. It's been rough, but we are making it with family support. It's hard to believe that there is so little help out there... thankfully Missouri is a pretty good state for him to live in.

Linda Pierson
September, 1 2019 at 11:31 am

Totally agree with you Rilla! We have started a Non-Profit Pierson Painting 4 Peace to spread awareness about SMI and to build Forever Homes for The Challenged. Love to have you and all involved! Truly, Linda Pierson El Centro/Julian CA

Audrey Klein
February, 5 2020 at 4:14 pm

My son started showing signs that something wasn't right, around the age of 26. It began with paranoia, and then anxiety. This went on for about a year and a half. Then he started saying he was Facebook famous, and that celebrities were writing songs and memes about him. He says he's a police officer and in the army ( none of which are true) The only emotion he shows is anger, unless listening to a video or something and then he will constantly laugh. Here lately he has had it in for my
Husband, saying that he has been stalking him for 20 years. The other day he said that he was going to slaughter my husband. They ended up coming and getting my son on Sunday, and admitted him to the psych ward on Monday. I have no idea what tests have been done, or if they have even diagnosed him. I live in Maryland and want to know how to go about getting this law changed. We as caregivers need to be in the know to be able to better care for our children. My son's reading and writing abilities are limited lol so he probably doesn't understand what he would be signing or giving consent to. I miss my son terribly, mental illness is so cruel

Cindy hollowau
November, 25 2020 at 6:49 am

I totally agree..l wrote president trump which assured me 10 billion would go back into mental health..it was Reagan that pulled all the money from this cause ..my son has schitzoeffective disorder and is 27

Rose
February, 22 2019 at 2:05 pm

I have a 30 year old granddaughter who has recently been diagnosed with schizophrenia and she is a “cutter” and is addicted to meth and heroin. She lives 2,500 miles from me so I don’t deal with her on a one on one basis, but only through phone calls and texts. The phone calls and texts are like being on a runaway roller coaster. She asks something and then when she gets what she asks for she becomes angry. She is not committed to taking her Zyprexa, choosing to skip it when she wants to “party”. It frustrates and stresses me to even talk to her because she becomes insulted if I don’t agree that it is okay for her to skip medicine, etc. she wants to visit me for a week and I honestly don’t think I can deal with it! But afraid that if I say no it will have even more of a negative effect on her. I am 71 and my husband is 75 and we are both fighting cancer. I have always been close with this granddaughter and feel guilty and selfish wanting to distance myself from her. If the voices told her to harm herself or her 3 children I would always wonder if my “rejection” of her was the reason. Her husband loves her very much and deals with his off-the- wall, stubborn, unfaithful and verbally abusive (to him) wife as best he can. He is a hard worker who doesn’t do any drugs and does all the housework, cooking, etc. after he works all day.

Joyce
December, 20 2018 at 2:26 am

I have a 29yr old son that has schizophrenia, he is not on any medications, has been inpatient on several occasions. Lives at home with me and I feel stuck, trapped, and have not had any success trying to be him help. There is very limited assistance in my area. I am overwhelmed not being able to properly help him. Any suggestions

P. Theobald
August, 31 2018 at 7:36 am

My son is 45 he has just lost his job he has a partner whom he does not live wth at least he did tell me he has been given notice I did say Ivwas sorry to hear that his partner has never tried to get medical help for him which I find very difficult to understand where do I go for now

Shelley Camoin
August, 25 2018 at 9:41 pm

What kind of place did your son stay in? I'm looking for a place for my daughter. She's 28, has always lives at home, and will not take her meds, is still hearing voices. Where can I go for help?

Keisha Vance
August, 6 2018 at 8:55 pm

I have a 23yr old son who was diagnosed 4 years ago with paranoid schizophrenia. I am so exhausted I work full time and have two other children. I spend most of my time tending to my older son. He sometimes forgets to take his meds and cannot leave the house without having panic attacks. I am a single mom however I have been getting some help from my mom and Grandfather getting him to appointment and weekly labs while I’m at work. Despite several med changes and recalabrating dosing he still hears voices. My issue with him is that despite several attempts to get him into life skill programs he refuse to do the work. Lately several people on his dads side seem to have all the answers they want him to get a job and go back to school. I’m so frustrated because I have several conversations a day with my son about this he is fixated on it. I would love it if this was in his future. However right now for a person who can not leave the house or when he does has major anxiety. I am so exhausted and I really don’t know what to do. How do you tell people who have no idea what your child goes through or myself is going through to mind their business. I have to deal with his anxiety once they get him all excited about all the suggestions they make that he will never be able to do unless he gets over his anxiety and paranoia.

Kristy Tinsley
July, 15 2018 at 4:00 am

My son is 48 and didnt have any mental issues until he was 40. He had significant trauma that took him into this darkness. He never would have gotten help but because he lives with my husband and I he had no choice. He saw a psyciatrist who gave him many meds with meds on top of those to handle the side effects. He was suppose to get therapy but slipped through the cracks seeing her only 5 times in a four yr period. He continued getting worse. He diagnosed him with bipolar. This doctor just wasnt helping. Then while he was on vacation he saw a new doctor. He was god sent. He.friendly open and caring with great personality. He said you had no symptoms of any mental issues until 40 yrs old. My son said no. He said you had lots of bad trauma. He said yes again. The doctor said u have ptsd. Thats what i thought also. My son said about 20 yrs prio four guys broke into his house all had boots on and kicked him in the head very badly. Said also severe brain injury. We decided to follow this doctor. Took few months. No treatment and my son was getting manic and yelling and beat my husband badly. Was placed in mental hospital and wasvthere three and half weeks. Now more new meds. He stopped talking to us and never showered or kept his clothes or room clean. I found mildew iin glasses of milk and mold on his dishes. His room stunk. His grooming was none.We see the same doctor but cant seem to get the meds correct. He never sleeps and still rarely. He talks to voices and yells at voices and my husband and I now are 66 and we have our own issues. He has gained fifty plus pounds. Hes loud. He leaves doors open and our dog could get out. He never remembers anything. He smokes and almost burned our house down several times. We cant leave him alone for any lenght of time. I follow behind him constantly to clean up his room, dishes, etc. Never remembers. Used to help with chores. No more. Hes been hospitalized.several times and never helps. Hes in a guarded state now says last hospital and now schophrenic with psychotic features and auidtory hallucinations. It has killed our marriage. My husband not his biological dad. I even have to give him his meds. My doctors say its too much stress on my heath issues and now my husbands heart. We have to find him a place to go. My heart rips out just typing this. We cant hrlp him anymore we arent experts or doctors. We just love him so much that this isnt working and its time to get him serious help. I hope its possible. I so want him to be able to care for himself before i leave this world. He has no one. No brothers or sisters and no friends at all.I pray rach day for a miracle or help from some or somewhere. He used to own two homes. Had two beautiful kifs. My grandkids that we arent able to see because my son is sick. He was a people person who was a general sales mgr at a car dealership. No hes locked in his room afraid to even be in a social setting even with family He is someone we are afraid of and dont even know him. He needs help now. The Mental health association is really not able to help us at this stage though he gets his meds there monthly.

Hilary
March, 28 2024 at 6:53 am

I understand and I am so sorry for your and your son's pain. I get it totally but not many do ... if you need to chat do write back to me . Keep going in the meantime by taking one day at a time and looking after you too x

Christine
May, 15 2018 at 12:18 pm

Hi,
I lost my immediate family to suicides (husband of 32 years, ten mths later my older son, then 22, in his delusions, shot, four strangers, murdering two.
Fout years ago, my remaining son had a psychotic break, and was diagnosed with schizophrenia paranoia. His delusions held me responsible for the suicides, and as a fallen archangel, revengee must be undertaken against me, with a silver bullet he was trying the cast himself.
Fast forward through 3 years of (unmedicated) hell. At last was able to persuade him to take meds, and he became ‘normal’!!!
I even convinced myself this past year, that yhey must have misdiagnosed him...
I am alone - as in - my son is the sole family that I have (my father, from Germany, had been my only family that I had , he passed in ‘81.
Not a single inlaw, from my late husband’s family will become involved.
I do have several friends who support me emotionally, but that’s it.
In Alaska, mental health care is vastly underfunded. My son lives in a waterless cabin, and I cannot handle him living with me - it doesn’t feel safe.
Not sure I can handle this second round of his illness- I became almost a wreck the last time.
He’s been off meds now for over 6 mths, and refuses to resume them - after all, he is not ill..
I want to move out of this harsch environment i have lived in all these years - I am over 60 now. And I am afraid if I sell my house and move, my son’s chances of healing drop to nill.
I don’t know how one can move a mentally ill person to another state and receive mental health care and housing assistance there.
Help

Rita
July, 4 2018 at 10:21 pm

It can be done... every state has help, although the help is not uniform across the states, which is stupid in my opinion. I believe Massachusetts and New York have the best mental health systems in the USA. … which isn't saying much as the USA rated a "D" (below average) on the MHA website (mental health of America organization?)… I can't remember exact name... I was reading as many books as I could on the subject and attending seminars and classes to try to help my son. Now I'm a total burn out on it. NAMI and SARDAA are great resources though. SARDAA has a phone conference every Tuesday night at 7 pm Eastern Standard Time... it's open to anyone anywhere. Good luck... I myself am trying to get guardianship and then to get my son out of my home and into a group situation where maybe they can help him. It's too much for one person (me) to handle anymore... I am almost 60 and I'd like to have a life too. I got him an apartment but so far he won't move into it. If this doesn't work.. I may have to do a restraining order. I'd rather see him get help and get support from a community but like many said, he thinks he is not sick. He is very paranoid but too dependent on me and our relationship is not healthy for him or me. He has no real life either.

Carolyn
November, 21 2019 at 2:22 pm

November 21, 2019
Your post broke my heart. I feel your confusion and sadness. You have done so very much to help/understand your situation. Is your son difficult to live with? I see you mentioned the restraining order so, I’m just wondering. I’m not familiar with the “guardianship” but if that’s something that you believe will change the relationship for the better do it and....you can let go.......knowing he is going to be ok. You have done the very best that you could for him. I hope you are doing well.

Sara Marie B.
November, 1 2020 at 5:43 pm

Hello Rita,
We are in Northern California, but would consider relocating just about anywhere to find good services for our 26 y.o. son with Schizzo-Affective. Wondering why you think New York and Massachusets are the best states. Ideally, we'd like to be in an area with a broad range of supported living options as well as good residential with transition and step-down services that are affordable. There seem to be several back east according to ARTUSA but many are $20, 000 and up per month. We can supplement his SSI by about $2000/month. How is your son doing now. I see your post is older, so do you still feel the same about New York and Massachusets? Please email me if you can at jbengry@aol.com. thank you much, Sara

Lizz Friend
September, 6 2019 at 6:05 pm

My son too is in Alaska and your words literally could be my own. .. I’m in Alabama and my struggle is heart wrenching.. I can’t even discuss my son with my husband and That adds to my turmoil... I could go on and on but I wanted to reach out to you because I sincerely feel your pain.

jackie millmam
May, 12 2018 at 7:01 am

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.

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