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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, December 20 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go



Author: Randye Kaye

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.

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

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

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. ?

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.

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.

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.

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

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!!!

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

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.

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.

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