advertisement

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 2022, August 14 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go



Author: Randye Kaye

Delia
December, 27 2012 at 2:33 pm

Dear Randye: I want to thank you for your book "Ben Behind the Voices" and for this wonderful website. My son is currently hospitalized (for the 4th time) and was recently transferred to the state hospital. He went in the day before Thanksgiving and was there through the Christmas holidays and is still there. It tears me up inside that he has to go through all of this. As I was reading your book I was glad to hear that my family and I were not alone. Ben reminds me of my own son in some ways. Some of the stories parallelled what we have been going through. My son is still so young - 22 years old. My son has a past history of heavy marajuana use. In his late teens I thought that it was the pot smoking that was causing all of his "issues". Come to find out it was something that was more serious - a serious mental illness. I sometimes think that the diagnosis (schizophrenia) may be incorrect or maybe he has just a touch of it. I'm still in that haze of disbelief but I'm doing everything I can to educate myself and my other family members. I've recommended your "Ben" book to my family and others and have attended some local family support groups. I like your analogy of the journey as my son is just beginning his journey and I want to do everything in my power to prevent him from having to suffer needlessly. He too doesn't feel that he is sick, which seems to be a common and difficult part of the illness. I have recently had to make a hard decision regarding his care, as you did, I told him he cannot come home to live with me or his grandparents. It still hurts to say that but you have given me the courage and the hope that something positive will become of making this very tough decision. When we talk on the phone he asks if he can just stay with me until he gets on his feet. I heartbreakingly have to decline and tell him that he has to move on. I feel it's the only way for him to move forward with his life. He spent two years living with me and two years living with his grandparents not able to really function in the world. He's had a difficult time staying in school or finding/keeping a job due to lack of motivation. In and out of hospitals, IOP's (Intensive Outpatient Programs), not adhering to taking his meds. Ups and downs, good days and bad days, somewhat normal to bizzare and strange but I have come to accept these things as the new normal for my life. I'm hoping that the state can provide the programs that he desperately needs. I am advocating for his care and have been in touch with his social workers and ICMS worker. I am not giving up before the miracle!! Do you have any specific advice going forward? Thank you again and I sincerely appreciate the work you have put into forwarding our cause.

In reply to by Anonymous (not verified)

Randye Kaye
December, 28 2012 at 10:56 pm

Hi Delai. You are most welcome. I'm thrilled that the book has been of some help to you, as is is SO difficult to go through what your family is struggling against. Your story is our story, and the story of countless families in this country who must fight so hard against stigma, reduced or non-existent services, and the pain of our loved ones' illnesses. I hope that our story, the resources in the book, the Healthy Place website, and NAMI can all be of some comfort and help. keep up the fight!

Aleksasha
December, 26 2012 at 11:50 am

I don't have anybody around to whom i may tell the truth about my 22 y.o.son. But after i read all of this stories i know - i'm not alone. It's probably does not make my life easier, just my feelings. We all saying the same, no different. It's a sharp pain inside. Why does it happen with my child? What to do? How to survive myself?
I also have 3.5yo boys, and their father doesn't want his kids around my oldest son. And he has the right to have a peace in his own life. I'm balancing between. Love all of them, and slowly going down. Can't make a choice. Who can?
I know my oldest will not to be able live on his own. No money, no ability to keep the job, no education, always alone in our new place, new country (we have been living in usa for 7 years). We tried for a year to find the psychologist with no success. Hospital released him with no doctor and prescription for Abilify for 2 weeks, and again we are waiting for psychologist ( i can write a lot about this problem). It's a really big problem in this country. Something not connect and going on wrong. I will reading about NAMI tonight. Maybe this resource will more helpful.

In reply to by Anonymous (not verified)

Randye Kaye
December, 26 2012 at 12:59 pm

Aleksasha, thank you for sharing your story. It is never easy on a parent of a child with severe mental illness. In addition, as you mentioned in your comment, trying to figure out and navigate the mental health system here can only add to the stress.
I do want to encourage you to seek out a NAMI chapter in your community. Here is a link for that: http://www.nami.org/template.cfm?section=Your_Local_Nami
NAMI groups are composed of other parents who have been through just what you are dealing with and can provide support as well as very helpful information.
Take care,
Randye

patty
December, 14 2012 at 3:28 pm

What are the signs on schizprenic. I know my son is depressed. He will not take meds. He has no friends, is afraid to get a job. He is in community college and is very lonely. He has six classes left unti he receives his associates degree. He will not return next semester becuase he need to get help. Where do I get help. I live in massachusetts.

In reply to by Anonymous (not verified)

Randye Kaye
December, 14 2012 at 5:03 pm

Patty - thanks for asking...that's the first step.
Healthy Place has some excellent information on schizophrenia and also depression. Read all you can - and also find your local NAMI affiliate and get to a support group, call the phone number, take Family-to-Family if you can. You are not alone, tho you may feel that you are.

Margot
December, 13 2012 at 9:21 pm

At the begining of my son's mental illness I did not understand what was going on in his life. He was hitting the walls, he was closing all the windows, he always was wearing sun glasses, and so many different others things. I was working and when I came back home he was very sad. He was 26 six years old now he is 29. He started taking 1mg respidore, he started felling better. He stop taking meds. When he had a strange episode I called 911, they took him to the hospital, until he had to stay at the hospital for one week. He did not like to be there "with crazy people" and he promised to me and to the doctor to re-start his treatment. I take him to the clinic twice a month for his injection and at bedtime I give to him a pill of the same med. He has been very relaxed, but he doesn't want to go out alone. I take him out. But this is my problem how can I tell him that he has a brain disease call schizophrenia? Please help me..

In reply to by Anonymous (not verified)

Randye Kaye
December, 14 2012 at 4:34 am

Hi Margot. I know how difficult it is, especially when someone you love is just not ready for the help you want to give. In my experience - shared by many others - it is seldom effective when we try to "convince" our loved ones that they have a mental illness. We can, however, set limits in our homes, take care of ourselves, and enlist the support and services of others - like NAMI (go to NAMI.org, search for your state, and find a support group in your area). This is not something we can handle all alone, nor can our loved ones. Educate yourself as best you can, and reach out to find services in your area for your son.
You have made a great first step by reading the material here on Healthy Place. You are not alone.
Randye

Louise Boulter
December, 13 2012 at 2:13 pm

I just want to thank you for this site - this post, your blog or your web page. I feel at home. My son, 26, just moved into a shared apartment with another person - my son has a diagnosis of schizophrenia. Letting go (last June 2012) when he moved was, after reading your post, exactly as you describe, although I did not realize it.
I just want to say - I cannot wait to read more of your story - of my story - it puts words where my heart is. Thank you

In reply to by Anonymous (not verified)

Randye Kaye
December, 13 2012 at 2:34 pm

Louise, you are most welcome - and thank you for taking the time to write! You are the reason I write...and I hope the book (Ben Behind His Voices, where, I suspect, you'll continue to see similarities...) is helpful to you as well. Hope you, your son, and family are well and enjoy your holidays!
best, and always with hope, Randye

RB
November, 25 2012 at 6:27 am

Schizophrenia ruined my family. I think about it everyday.

In reply to by Anonymous (not verified)

Randye Kaye
November, 25 2012 at 6:31 am

I'm so sorry. It is devastating, and I hope you can find some support. Sometimes that's all we can do.

bobbie
October, 31 2012 at 10:49 am

FORE none of us stand alone sorry too all that have a child with mental illness . I need help knowing what to do MY 28 year old son has been battling this for over 7 years in and out of the state hospitals. the thing is that we his family mom two sisters and a much younger brother seem to be only hanging on by a thine line. he has and can be threatening ans dangerous. two him self and others often we love him deeply but i think it has came to that sad place where we need to let go and try to go on with our lives trying to put our self's back together HOW bad this sounds for us to due such a thing to some one we love and is ill please help me to start to know what to due

mrella
October, 22 2012 at 11:07 pm

its difficult and hard to have a son with this sickness. ive been battling with him for the past 12 years or more. HE is on alanzapine but i feel that he is relapsing because today he doesnt want to see his nephnew which he adores.

bruce lewis
September, 11 2012 at 5:18 pm

my son.28 year old.he is lonely.stopped taking meds year ago.up down up down left right left right.....i love him dearly.i want happiness for him.girlfriend.friends.........bipolar/schizo?

In reply to by Anonymous (not verified)

Randye Kaye
September, 12 2012 at 11:46 am

so difficult...

alice
September, 8 2012 at 6:39 pm

I also have a 30 year old that seems to hate me and her sister. And threatens me. To move out each time she gets upset. She thinks we dont care. An says mean things to us all. She can be normal in front of people. But when we get home. Im am walking on eggshells. Praying she doesnt explode. I work. And my days off are difficult. She has tooken over it seems like. I need to take classes to give me better coping skills. We have been going through this for about seven years. She attends church with me. Things have gotten alot better. She no longer cuts . herself . Thank GOD! Ive just gotten alittle run down by all this. And would like to know of there is somewhere we could both go to get counseling? Its a battle that i will never give up on. She is my daughter and i love her to life!

In reply to by Anonymous (not verified)

Randye Kaye
September, 9 2012 at 3:15 am

oh, Alice -- there are many reading your comment who know exactly how you feel. I don't know if your daughter wants to go for help with you, but in any event you can certainly get help and support for yourself in the meantime. In face, it's essential that you take care of yourself, so that you can continue to "love your daughter to life"!
Try your local NAMI affiliate for lists of nearly therapists, support groups, and (highly recommended) Family-to-Family classes. It's important that you not feel so alone, and get the facts about your daughter's illness and what you can/cannot do. There is a lot of great info on the Healthy Place pages, and in books, but interacting with other real live people is vital - at least it was for me!
MY book, though primarily a memoir about our experience with mental illness in my son, also contains some valuable resources for reaching out.
Hang in there, and take care of you,
Randye

alice
September, 8 2012 at 6:33 pm

I also have a 30 year old that seems to hate me and her sister. And threatens me. To move out each time she gets upset. She thinks we dont care. An says mean things to us all. She can be normal in front of people. But when we get home. Im am walking on eggshells. Praying she doesnt explode. I work. And my days off are difficult. She has tooken over it seems like. I need to take classes to give me better coping skills. We have been going through this for about seven years. She attends church with me. Things have gotten alot better. She no longer cuts . herself

marj anderson
August, 20 2012 at 4:33 am

I am pleased to find this blog.Every day my heart aches for my son who is age 29.I became his guardian last summer when he signed papers while in the hospital.In over 5 yrs.,he's been hospitalized over 15 times.They say he is high functioning but he clearly has anosognosia.The book I Am Not Sick.I don't Need Help has been a great help. He has tried every thing he knows to persuade me to allow him to discharge from Birch Tree Communities which is the best support in Arkansas for MI.Right now therapist there are asking me to distance myself from him.While sometimes it is a relief and allows me to attend to my own life,it is very tough because he has needed so much help.The change is tough.He was a triathlete before he got sick & sixth in the nation in his age group prior to his big break.Was also an excellent swim instructor.Over a yr. ago he was able to complete 1 semester & 1 summer session but had to withdraw from the 2nd session.This summer for the 1st time he moved into apt. by himself.He had apt. with a roommate. Birch also has group homes so he has been in that setting several times.We never know what to expect.But one thing is certain & that is change. I am currently a local NAMI group facilitator.NAMI is a God send!

In reply to by Anonymous (not verified)

Randye Kaye
August, 20 2012 at 9:23 am

hi Marj - since you are a NAMI group leader, I am sure there is very little I can offer here that you don't already "know" - but still I feel for you and your family, and hope that if there is no solution right now, that there will be at least support - and hope. You are in my heart and thoughts today,
Randye

Denise
August, 18 2012 at 1:45 pm

Too tired to write a lot but I just wanted to say how much I can relate to all your situations... My son is back in hospital again but i'm really not happy with the care he is receiving, really feel low about everything that's going on right now - it's all just never ending & I feel like i'm going around in circles.

In reply to by Anonymous (not verified)

Randye Kaye
August, 18 2012 at 5:49 pm

Thanks, Denise - I'm so sorry that you are going through all this, tho. I hope the book and these posts can, at least, provide you some comfort in that you're not alone - and give you some ideas to get you and your son to a better situation if at all possible -
hang in there,
Randye

Marjie
August, 14 2012 at 9:29 am

Thank you Randye and Bonnieleckie,
I have contacted a few people trying to find out if there are any options open to me to help my daughter. I have ordered the books you suggested Randye and I have talked to a very helpful and concerned lady at NAMI. I am going to my first support group meeting this evening.
My daughter has gotten progressively worse and will not get showered or go outside but just lies on the sofa. She only answers me occasionally when I talk to her and spends most of the day either solemnly examining her hands or laughing out loud. I feel like crying (as I have done so many times in the past) but I know that I have to find some kind of solution that works this time to help my daughter. I have been told the only way to have a say in getting my daughter to get help is to get power of attorney but a friend told me she is concerned that then I will be liable for all my daughters financial responsibilities.

Marjie
August, 14 2012 at 9:22 am

Thank you Randye and Bonnieleckie,
I have contacted a few people trying to find out if there are any options open to me to help my daughter. I have ordered the books you suggested Randye and I have talked to a very helpful and concerned lady at NAMI. I am going to my first support group meeting this evening.
My daughter has gotten progressively worse and will not get showered or go outside but just lies on the sofa. She only answers me occasionally when I talk to her and spends most of the day either solemnly examining her hands or laughing out loud. I feel like crying (as I have done so many times in the past) but I feel as though I have to change

Bonnieleckie
August, 12 2012 at 4:07 pm

The hospital kept her for five days only to find out in the morning of day six our daughter checked herself out. If only we could keep our daughter in the hospital for longer than 5 days to get the proper treatment. She won't accept her diagnosis. How can we get her committed, being 31 years old, hippa laws and she refuses to sign s release to us? Thats why we had to let her go. We pray she comes for help before something bad happens, she is a danger to herself as she makes poor decisions. How can the hospital release her when she overdosed her medication? It's very hard as a parent with an older child.

Bonnieleckie
August, 12 2012 at 4:03 pm

Marjie,
We are going through the same thing. NAMI is really resourceful. We had to do the tough love. I highly recommend the movie A BEAUTIFUL MIND. It's a very powerful movie about schizophrenia, made a lot of sense to us, showing the mind and how they live day to day, what goes through their minds. I cried during most of the movie but it opened up my eyes. I pray for my daughter each and every day and feel very helpless not being able to help someone that doesn't want the help or feel they need it, but someday, somehow, she winds ip getting by and she will call upon us again when she feels she is in trouble.
Sad thing is our daughter took too much of her haldol and wound p swelling,

Marjie
August, 2 2012 at 2:04 pm

Thank you Randye,
I did buy the book I am not sick I don't need help and am reading through it.
I have heard other people refer to group homes and it sounds like a wonderful idea. My daughter behaves very differently when other people are involved, I think she has too much emotional control over us (especially me). I don't know if group homes are a possibility (we live in California) but I have just contacted NAMI by e-mail and the lady who replied suggested I call and ask for information about the family to family.

Marjie
August, 2 2012 at 8:54 am

I have a 23year old daughter who sounds similar in some ways to wanting to help's daughter. She also alternates between being positive - exercising, going to classes etc., and deep depression. It breaks my heart because she has no friends at all. She seems to make friends but she has always had problems socially plus she will go into her own little world and start laughing to herself. Her room is a disaster - there is no room to walk in it and she hasn't slept in her bedroom for years. Years ago, she told me she had claustrophobia and said could she just sleep on the sofa for a short time (she has been sleeping there ever since). She has been in hospital three times over the years and was diagnosed with paranoid schizophrenia and bi-polar disorder but she says there is nothing wrong with her and she won't take medication. The Dr. at the last hospital told her if she didn't take her medication that I would eventually have no alternative but to make her leave the house. The threat worked for a time but she knows I wouldn't be able to do that to her.
I first thought her behavior was because I had spoiled her - she has always been very strong-willed and I gave in to her to avoid her throwing a temper tantrum (because that in turn would also mean my husband would throw an even bigger tantrum). As her temper fits became worse I also thought that it might just be just a hormone imbalance. When she began talking to herself and hitting herself I was devastated and had to call 911 because I couldn't get her to stop. Now it is five years later and life with my daughter is like a roller-coaster. There are times when she can be thoughtful and sweet but mostly she is verbally abusive to myself and her brothers and I just don't know what to do - I know that she will never get herself better without medication.
Over the last few weeks she has been getting worse again and also panicking that she has everything wrong with her, from having a seizure/heart attack/head tumor/ worm inside her to severe allergy to something. She has been refusing to eat or drink properly and called 911 twice. The first time the paramedics said they thought it was an anxiety attack and we took her to the emergency room to have her checked as well(the Dr. there said the same thing). She began asking me every day to take her to the emergency room so I made her an appointment with her GP and he said it was anxiety and to visit her psychiatrist. Then she called 911 when i went to the grocery store and i came back to find they had taken her in the ambulance to the hospital. When i got there the Dr. was quite firm with her and said she needed to be responsible and also to visit her psychiatrist. Last night she went in for a shower at 7:00p.m. and we eventually managed to turn off the water at the main at midnight. She wouldn't come out and when I tried to talk to her through the door she just shouted abuse back. It is noon of the next day and she is still in the bathroom laughing to herself. I dread the thought that I'm going to end up having to call for emergency services again but i don't know what else to do.

In reply to by Anonymous (not verified)

Randye Kaye
August, 2 2012 at 9:09 am

oh, my Marjie -
I guess we could each write a book of our own! My heart goes out to you as well. I have been where you are, and the hardest (and, ultimately, best for all) thing I had to do was to declare my son Ben "homeless" so that he would qualify for a bed in a group home. I found that his living with us was not only helping his recovery - it was actually hurting us all. Ben lived in a group home for eight years, while gaining some independence - for himself, and especially from me. We had to, with safeties in place, give him his life back. Not easy, and not without risk. But I think it was a very important part of his recovery process, to have a different family structure for those years.
I refer you to the resources I suggested in my last reply, and hope with all my heart that they may be of some help.
best,
Randye

Bonnieleckie
August, 1 2012 at 8:25 am

I have a daughter thstnis 31 years old. Has struggled for the last six years. Because of the hippa laws and laws to protect patient rights our family is up in arms. Our daughter has been in and out of hospitals, she has doctor shopped and hopped to get the meds she wants, this last time she overdosed on haldol and wound up hack g a reaction thet she said "allergic reaction" but tomus an allergic reaction is taking the prescribed dose. Not more than the bottle says. She was admitted and was in the psych ward, once again as she has had 7 other hospitalizations, only to work her magic to be discharged on her own accord. It'd frustrating to us that she won't take a y medication before she googles it and denies she has schitzophrenia, has turned our family upset down with worry. We are doing the tough love now and are fearful of get g the call that we need to make Fu wrap arrangements with you. We know we can't help someone that refuses help or think they need help. Our daughter will get a job in a different state and works long enough to get fired and collect I employment. she's very bright and manipulative. She hears voices, thinks car aentenas are taping her, thinks everyone will take her money, everyone is against her and everyone has a conspiracy. twice she went to the police that her father and I were taping her in the shower only to have the police see that she thought the shower head was a video camera. She thinks it's all of us and she doesn't have any problem.how do we get our daughter committed long enough to get to the root of the problem?? We are so sad and frustrated. any suggestions? A parent that will go though hoops and loops for her child.

In reply to by Anonymous (not verified)

Randye Kaye
August, 2 2012 at 9:03 am

I know - it is so heartbreaking, and so difficult. How I wish I had magical answers for you. Have you reached out to your local NAMI affiliate for support? Again, no magical answers, but you may not feel so alone. There have been times, honestly, when I simply have done all I can, then know I must step back and take care of the rest of my family (including myself).
How to know what steps you can take? And how to let go when you need to? Taking NAMI's Family-to Family is a great step - so are books like Defying Mental illness, I am Not Sick Don't Need Help, When Someone You Love Has a Mentall Illness, and Ben Behind His Voices. All are on Amazon and in bookstores.
I hope that some of these suggestions may help. We all do our best and it just feel like enough. Hang in there and best of luck to you all -
Randye

wantingtohelp
July, 24 2012 at 5:49 am

I reached out to my daughter's therapy team becuase I can see all the red flags popping up...my daughter does not go to work (not sure if she still has a job) and I was informed that she has missed numerous therapy sessions and her last appointment for her shot (resperdol). She told her therapist that she has been going to work everyday and has NOT told them she is smoking weed everyday. I want to talk to her, but am afraid it will push her father away. yet it freightens me that she will end up back in the hospital (she has no insurance and the hopsital is for indigent patients) I am praying the serenty prayer and believe I cannot just sit by and wait.

FML
July, 18 2012 at 6:57 am

dear wantingtohelp, i relate to you oh so well. i have a sister 27 as well, schizophrenic. The amt of torture she she has put me(her younger sister) and my mom & dad thru cannot be described. From calling the police to yelling vulgarities to us and strangers to throwing eggs outside the windows to getting tattoos to trying to stab me and my mom. She lost all her jobs and demands my parents to supply her the money. I just dont know where to begin.
We went to see a psychiatrist n she is now on meds. The doc says she gotta take it for the rest of her life. My family is broken. happiness has been lost. The meds side effects are another worry.
I just feel like committing suicide every now and then.

In reply to by Anonymous (not verified)

Randye Kaye
July, 18 2012 at 11:32 am

dear FML, I am so sorry for your pain. I hope that by reading some of the blogs and comments here, you are reminded that you are not alone in your pain. Sometimes the only thing you can do is take care of yourself. If there is nothing you can do for your sister right now (and there may not be, at the moment), what can you do for yourself? I hope that you wil reach out to NAMI and other support groups to get through this difficult time. You can get through this, tho the pain of losing the sibling you knew and still love is so hard, I know. Please talk to someone about how you are feeling, and know this: you are not alone!
best,
Randye Kaye

wantingtohelp
July, 16 2012 at 9:42 am

Thank you for your resonse Randye. Today has been pretty rough...my daughter promised to go to work, but this morning decided to go "hang out" with her friends..which means smoke weed. Sometimes I feel like she's just not putting up much of a fight against this illness...like she's bought into it so she doesn't have to do the hard work. I told her I am tired of the broken promises and now I feel terrible because she won't answer my calls or texts...this is such a rollercoaster ride and I grieve for her..I miss her so much.

Scott
July, 13 2012 at 12:34 am

My son (35) has it . There is no life for him and no help for us. Just we are sorry.. I have spent all I have trying to help . It's a never ending fight .you can,t win.l

In reply to by Anonymous (not verified)

Randye Kaye
July, 13 2012 at 4:09 am

Dear Scott and "wanting to help",
I am so sorry for the pain you are going through. I know it all too well, and I don't pretend for one minute that this isn't a horrible, heartbreaking, life-stealing illness. One of the reasons I am so grateful for Ben's current life is that I know how fragile it is.
There have been times in the past (and, though I hope not, there may be times in the future), when I feared I had lost Ben forever. At those times, my only solace was the knowledge that I had done everything I could and that somehow, someday, Ben's soul might meet mine in some other place, and he would would acknowledge my love and that he knew I had tried my best. Sad but true - and of some comfort at that time.
At other times, when things looked really bleak, there always came a point when I knew I had done everything in my power for the moment, and that there were things I had no control over - and it was then that I had to let go of that dream of control, what I've heard described as "let go and let God" (whatever that means to each of us). At those times, the only decision left to me was to take care of myself and the rest of my family, and to try to find happiness as best we could.
Self-care is not easy, especially when it feels like we are "abandoning" someone we love for a time - but sometimes it is the only choice that can comfort us. When a child with mental illness is living in our home, that can translate to setting realistic limits (even when Ben was off meds, he knew the rules like "no smoking in the house") for the good of the whole family. Realistic is the key word here, and education helped me to realize what was realistic. (recommended books, NAMI, Family-to-Family, informative online communities and websites).
And, always, there is letting go of old dreams. As I write in my book, my hopes and plans for Ben's life have had to change. I remain so grateful that he is working - but if I were to compare it to the hopes I'd had for him ten years ago, his minimum-wage job might have looked like failure. I choose to see it as success - and it took eight long years to get there, during which time his main structure was doing his chores in his group home, attending AA meetings, and occasionally spending a day in a Clubhouse. Learning to see those steps as successes did help.
Thank you for writing. My heart is with you. NAMI does not always provide answers at support groups, but it can provide community and also lead you to other ideas for solutions. I hope the blogs here at Healthy Place are of some help as well, and the stories that others share. That is why I wrote my book Ben Behind His Voices, and why I continue to blog here. Hang in there, and remember the Serenity Prayer for some comfort...
"God grant me the serenity to accept the things I cannot change; courage to change the things I can; and wisdom to know the difference."
Though I sure do wish I had a magic wand for us all.
best,
Randye

In reply to by Anonymous (not verified)

pam
May, 18 2018 at 3:20 pm

I agree. My son is 30. He is homeless, delusional, and angry. I cannot fight to help him anymore. We have still not gotten a diagnosis due to HIPA. One nurse told me the file said schizophrenia.

wantingtohelp
July, 12 2012 at 10:15 am

Our 27 year old daughter has been diagnosed with schizoeffecta disorder. She has been hospitalized three times but is taking her meds by injection from the community services board every two weeks, so she is not psychotic. She barely goes to work, her room is a wreck, clothes, shoes, mail, money thrown about the room and she is smoking weed every day. She has gained about 25 pounds and sleeps most days, then goes out to smoke every night until late and comes home around 2-3 a.m. Usually when she is home she is sleep or texting on her phone. She rarely talks with us and does not really have a relationship with our 24 year old daughter (her sister). I go to NAMI meetings, but don't feel like they really give me any concrete approaches to take. She will have times when she says she will make an attempt to get healthy, i.e., exercise, go to work on time, interact with us and her extended family. But she does not follow up. I want to ask her to move out because it is so painful and stressful for me to see her just give up, but I am afraid of what she may do on her own. She was a loving, extremely intelligent (full scholarships to college and law school..she quit lawschool after two years)focused young person and now she is someone totally opposite. I just don't know what's best to do.

Dan
July, 1 2012 at 10:56 pm

I am mentally ill with bipolar 1 and Anxiety disorder. Everyone in my family has some sort of personality disorder but they all make me out to be the only person with a mental illness and the black sheep because they all have jobs and are secure. Everyone imposes some kind of rule on me and if I break the rule they all feel justified by instantly hurting me as much as possible. My sister screams at me violently and throws me out of the house. My brother will attack with his fists if I offend him or his friends. My mom calls the cops on me and the cops hurt me (broke my wrist, threatened to kick my teeth out, locked me in a cold cell for two days alone for nothing) and my dad abandons me in bad neighborhoods or kicks me out of the house onto the street. People robbed me when I was all alone, people tried to kill me three different times but I escaped on foot, and there were many, many nights I was homeless and vulnerable to being attacked or worse on the streets. In the hospitals I had people try to rape me in my sleep and I was assaulted six times and each time either strapped down for a day, moved to a violent part of the hospital, or kicked out onto the street when I never hurt anyone when I was attacked. I had a doctor lie to the police about me screaming at him and I was jailed for a month for a crime I didn't commit. I had a nurse in an ER touch me inappropriately. I had landlords rip me off and take all my stuff to the dumps three different times. People do whatever they want to me and nobody cares because I'm "mental" and you all wonder, all you distressed caregivers and parents, why people with mental illness want to commit suicide every waking moment? Life is a horrible nightmare to some degree but I'm a fighter and recognize my illness. I got an education and am learning how to be successful besides all the horrible things that have happened to me. It was not my fault that I have a disorder, a disease, I didn't choose it but many people punished me for being this way. I have no love for life, it's hard to wake-up everyday, it's hard to smile anymore. I just get through it all hoping for the best atleast I know what to expect. I'm going to move away far away from people that hurt and abandon me and hopefully have a good life or not, who really knows.

In reply to by Anonymous (not verified)

Randye Kaye
July, 2 2012 at 4:20 am

Hello Dan. I’m sorry to hear you’ve had such a tough time and that your family has been so unsupportive. Still, amazingly, I sense that you are trying to do the best you can for yourself. You are absolutely right that having a mental illness is not your fault. From your note, I imagine financial resources are tight. You might try calling your county social services, county mental health agency and local United Way to see if they can assist with diagnosis, treatment or support services or lead you in the right direction. Take care, Randye.

Wendy McGhee
June, 9 2012 at 5:23 am

I have a 22 year old son who was diagnosed with Schizophrenia 2 years ago. He was sent to prison for 22 months for a drunk diving accident. He went off his meds and hears voices all the time. He is being treated at a hospital facility, finally. He will be released from prison in two months. How do I help him with his illness and the getting out of prison thing. Everyone sounds so hopeless.

In reply to by Anonymous (not verified)

Randye Kaye
June, 9 2012 at 5:28 am

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.
best,
Randye

Sandi
May, 14 2012 at 2:34 am

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?

In reply to by Anonymous (not verified)

Randye Kaye
May, 14 2012 at 2:52 am

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.

jill
March, 25 2012 at 9:28 am

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

In reply to by Anonymous (not verified)

Angela
May, 26 2018 at 1:13 pm

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

Lynne Oakes
December, 9 2011 at 9:26 am

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.

In reply to by Anonymous (not verified)

Randye Kaye
December, 9 2011 at 10:37 am

Lynne,
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.
Randye

Leave a reply