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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, May 24 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/05/schizophrenia-and-parenting-step-in-or-let-go



Author: Randye Kaye

Linda
March, 10 2014 at 3:06 am

My heart goes out to everyone who has commented. Our children have had the rug pulled from under their feet in many cases just when they were about to become independent of us. This throws up a lot of resentment as we worry about the possibility of having to look after them for the rest of their life.I must say though I would give my life tomorrow if it could be taken away from him.In the case of the one girl whose mother is schizophrenic I also feel for her as my own mother was ill. I let her down by leaving home at 19 so the I say to you that you have the right now to want your own life and I hope you get some support to do that. I have just had my 24 year old son sectioned under the UK Mental Health Act. He now resents me and sees me as one of the enemy in his delusions of persecution. He is taking meds but after one month there is still no change in his mental state. My belief in God has gone. I was never religious but had my own views about spirituality and life's ultimate purpose but this had taken it all away and I am struggling to find any purpose as my sons mind shrinks into an abyss of fear and paranoia.

Graeme Rose
March, 1 2014 at 9:06 pm

Hi Everyone here, I have read all these posts and am feeling so much sympathy for you all, and also for your children and parent. This is a very damaging disease to have and to live with, so destructive of lives and families. You all know it intimately and have so much good understanding of the day to day difficulties involved. As a M.H. counsellor, I can only offer my deep admiration for your strength and loving dedication to your relatives, and I know that what we want to achieve and what we actually can achieve are very different, so I will wish you more strength, and more love and more of God`s good help in your endeavours to find happiness within the dark clouds that are around you all. G.

T.Edwards
February, 19 2014 at 7:25 pm

Hello All,
Everyone here seems to have a child with schizophrenia, my situation is different its my mother. I have been the adult my whole life. I never got the chance to be the kid. I am 40 now and I am tired. I want my life; I am tired of worrying about her. I want to have a normal life; I want to be free. I know this sounds selfish, but I have bailed her out and set her up her life too many times. She is the most selfish person I know. All I want is for her to take her meds, and be happy. I have prayed and asked God to heal her. I have been a good daughter I'm not rich so I can't afford to place her some place nice. Group homes are awful, but no one can take living with her. I am at the end of my rope and I am about to give up. I know it sounds awful, but I can't keep going through this, I can't keep giving her my life its not fair and all of my family have distanced themselves away from me and her.

In reply to by Anonymous (not verified)

Randye Kaye
February, 20 2014 at 4:49 am

Hi T -
I'm so glad you took the time to comment . Yes, so many "ACOMI" - Adult Children of those with Mental Illness"- have similar stories and concerns. As a teacher and trainer for NAMI's Familt-to-Family program, I hear many stories like yours. (By the way, I just made "ACOMI" up, so you won't find anything on google about it - at least not yet! - but I do think it will be my next blogpost here. You deserve a voice.)
We parents often talk about "the child we lost" - the one we knew before the illness - but ACOMIs have responded to that by saying"How can I miss a parent I never knew? I did not know my mother/father before the illness. It's all I know."
The burden, objective and subjective, on the children is, indeed, great. Have you found any support in your local NAMI affiliate? And may I share your comment in my next blogpost ?
thanks,
Randye

ELSIE
February, 10 2014 at 12:16 pm

Reading this website helped me not feel so alone. My 21 year old son is schizophrenic and I do not know what to do. He has recently gone off his meds and I can not talk him into taking them. It is hard not knowing what to do. It is a wait and see what happens illness due to there is no guessing what they will do next. I just don't know any more.

tanya
February, 4 2014 at 4:27 am

oh my god just reading this website a relative of mine seems to me to be experiencing similar symtons
two months ago he was such a bright passive positive intelligent young man then suddenly progressed in to someone I hardly know ....I am in shock after reading comments I am more shocked and I know it is a terrible thing to think but wonder if they would be better off dead than having to live such a painful life with doctors who are over
worked unstaffed and have no cure....it must be hell on earth for them and it is hell on earth to withness the decline of a loved one who assumes we are the enemy I have beaten cancer twice trying to keep my strength up but my life will never be the same after what I had to witness watch my loved decline into this state god love us all my life now is just tears and fears and my loved is missing for the last six days and do not know if they are dead or alive and wondering which one would be best for them in this condition

pinetrail
February, 2 2014 at 5:59 pm

My oldest son (now 25) is schizophrenic and for 20 years it was the most heartbreaking situation as it was childhood onset now i am faced with the youngest son (21) in the military with onset symptoms of schizophrenia - i sent him off to the world to be free and live his own life without the escalated home life. I am simply at loss with the knowledge that the storm followed him. I am now 60 - exhausted, despondent and alone.

Page
January, 14 2014 at 9:00 pm

HELLO MY NAME IS PAGE. I have a son 24, WHO has been diagnosed with Schizophrenia FOR 5 YRS NOW.
I FEEL EACH AND EVERY ONES PAIN AND THE STRUGGLES THAT THEY ARE GOING THROUGH
I'M THERE AS WELL I'M LOST I DON'T KNOW WHAT TO DO.
I want to get my son the best of care but that takes money so I'm lost as to what to do...as we all are.
MY SON NEVER REFUSEs TO TAKE HIS MEDS BUT IT SEEM AS THE MEDS ARE NOT DOING ANYTHING FOR HIM.
HE WAS TAKING INVEGA SHOTS BUT HE REFUSE THEM NOW BECAUSE HE DON'T LIKE THE WAY IT MAKES HIM FEEL>
SO I NEVER WOULD HAVE KNOWN WHETHER IT WAS RIGHT FOR HIM
I HAVE READ SO MANY STORIES AND EDUCATED MYSELF ON HIS ILLNESS SO MUCH THAT MY HEART REALlY GOES OUT TO SO MANY FAMILIES STRUGGLING AND THE PAIN THAT THEY FEEL
I HAVE BEEN SEARCHING FOR A REALLY GOOD DOCTOR BUT NEED SOMEONE'S HELP PLEASE IM CRYING OUT FOR THAT SUPPORT MY SON BEEN IN AND OUT OF JAIL.
HE SMOKES CIGARETTES AND MARIJUANA HEAVILY
I DON'T KNOW WHAT TO DO ANYMORE MY HEART IS SO HEAVY NOT JUST FOR MYSELF BUT FOR A LOT OF PARENTS OUT THERE THAT ARE GOING THROUGH THE SAME THING PLEASE SOMEONE REPLY TOE AND GIVE ME SOME SUPPORT AS TO WHAT TO DO PLEASE!!!

In reply to by Anonymous (not verified)

Randye Kaye
January, 16 2014 at 4:27 pm

Page, I wish I has easy answers for you. We all know how difficult this is - and the fact is sometimes there is not much we can do without help. You need to find a better doctor for your son, and insist on help for him. Have you reached out to your local NAMI chapter for support? Have you tried calling 211 for information as to agencies that could help?
These solutions are a place to start. They helped us a lot. Hang in there.
Randye

Ewilson
January, 12 2014 at 11:29 pm

@Tsol...I too am in Ga and I feel your desperation. At present my son(24 dx: Schizo) is in the hospital here in Ga on a 72 hour hold taken in on a 1013 by police. I'm finding it is a viscous cycle and in Ga the system is design to protect the consumer and not the family. But, I am trusting God by leaning on his directions and loving my son despite and continuing to get education, help from DR's and social services. NAMI DeKalb Ga has been a great support.

tsol
December, 10 2013 at 5:31 pm

21 yr old son is in jail with immigration hold for being violent with me. Everybody expects me to get him out and take him home with me but my husband and I can't live with him. His brother is schizophrenic as well but taking meds. Tends to refuse meds though if the brother in jail tells him to stop. Son in jail is a bad influence on the stable son. I'm in Georgia and have repeatedly asked for long term medical help and nobody will help us. I contacted the probate judge about a 1013. Georgia has a 72 hr hold and they let patients go if they refuse meds. Checked on getting guardianship. If I did that I still couldn't legally force meds. He's been violent with us and still the court will not order mandatory shots. The politicians of this state need to change this. Or maybe they are medication refusing mentally ill too that think this is right. I'm so frustrated. There's nothing else I can do. I've lost my son. I think I have to just let him go and think about the son I have left and the daughter he's leaving behind. I've cried so much. My heart is broken. I can't sleep well at night. I have to constantly stay busy to not think about it so much. I'm exhausted, depressed, I feel guilty, scared, worried. I love him but don't know what to do. The mental health system of this country is non-existent. Maybe the government wants as many people possible to be insane...if not it sure looks that way. Because they aren't doing anything to fix people.

In reply to by Anonymous (not verified)

Randye Kaye
December, 11 2013 at 1:53 am

Oh, I am so sorry to hear your story...for the heartbreak you are experiencing, and also because it exemplifies the plight of oh so many families in this country. Your love is strong, your knowledge is there, yet the system leaves you powerless to help. Thank you for writing this, and adding to the honesty that we hope will someday reduce the stigma and legal complexities and get families the help we so desperately need.
Randye

Rich J
October, 4 2013 at 3:33 pm

@Randye - read your book, Ben Behind the Voices (well audio) and hard to keep from tearing up most times listening to it as I could relate more than you know.. many times on the plane listening to it. I am actually a fairly successful person (executive for fortune 500 company) who has 3 boys the youngest of which has diagnosed with Disorganized Sz... we have no history in our family and had no clue about the devastation of this disease. Our son had spinal menangitis as a baby and had a terrible TBI accident when he was 13, which I am convinced caused the Sz. It has taken such a toll on our family, our marriage and our life. I have turned to advocacy for MI as we need too as a society invest in finding a cure or better treatments for so many who suffer!!! I just found this page surfing the web tonight and just want to thank you for writing your book - it touched me. I hope and pray that Ben finds his peace and path in life as well as my son Chris.
God Bless all the parents of children impacted by mental illness... we are the tired, strong, fearless warriors who soldier on despite the challenges, thoughts of despair, and fear --- we continue to find hope in the midst of chaos and uncertainty... and we will never, ever give up or lose hope for the one's we love!

In reply to by Anonymous (not verified)

Randye Kaye
October, 5 2013 at 5:08 pm

Hi rich
Wow thanks so much for your comments and insights. Yes we are warriors indeed ! I wish you and yours healing, support and so much more
Best,
Randye

Teri
September, 21 2013 at 5:47 am

I can relate to all of these postings. We have a 24 yr old son with schizophrenia, and our hearts break every day. My husband had to quit his job to stay home with him. He was arrested last year and now with probation and restrictions and his illness, he needs someone around all the time. I can hardly get through each day. I am so glad to see this site, but so sad that there are so many of us. I wish we could get together - It is so lonely when you have no one who understands your struggles. If anyone is in the Milwaukee area, please let me know. I'll check the site often. I hope every day that my son will meet someone who can be a friend but it never happens. WE barely get through each day emotionally. And I worry so much about the future and his fate. He takes his meds, but that's only because of the arrest and probation, which unfortunately has been the only thing that helped us since the laws are so outdated and work against you and not in the patient's well being. I could write a book with all we've been through. Thank you for this site again!

In reply to by Anonymous (not verified)

Randye Kaye
September, 21 2013 at 6:20 am

Teri - yes, how I know...we each could write a book. I tried to speak for so many of us by writing ours, and hope you can find some comfort there in "Ben Behind His Voices."
Have you reached out to your local NAMI chapter? This saved our emotional lives, especially Family-to-Family.
It has taken my son almost ten years of slowly progressing through recovery - but he, at last, has friends. Doj't lose heart, but do try to be patient...I know it's hard. Recovery has its own timetable. And remember to take care of yourself too!
Randye

Joyce
August, 21 2013 at 1:21 pm

My daughter has had all of the follwoing diagnoses: Schizoaffective DO, Schizophrenia, Asperger Syndrome, Bipolar disorder. I am a Registered Nurse. Until my daughter became mentally ill, I practiced in the med-surg/tele area. Now I do psyc. nursing.
The doctors do not know what is wrong with my daughter (now 20 years old)! Her symptoms started in 2006, a few months after her biological father died very quickly from stomach cancer (2005). Of course, the symptoms worsened after got married to a retired army veteran, who suffers from PTSD himself.
I believe that antidepressants pushed her into her first psychotic break.
Does any one have a success story to share? My daugher has always been a very bright, intelligent girl. She is in college right now. This is her first 'on-campus' college experience and it has not gone very well so far. I want to help her succeed.

In reply to by Anonymous (not verified)

Randye Kaye
August, 21 2013 at 9:51 pm

Hi Joyce,
I can't respond to any medical issues such as the result of antidepressants on your daughter's condition - as a psych nurse, I assume you have more medical knowledge than I do. Still, from what I know, it does sound quite possible that your husband's death and any subsequent changes served as "second hits" of stress that could have helped to trigger what may have been lurking. I am so sorry for your family's pain, and so relate to your strong desire to help your daughter succeed. In our case, it was most helpful to allow my son to progress at a slower pace than before the illness hit. He takes 6 credits at a time, and this is what he can handle best. But he had many overly ambitious starts before that. Success can happen, with structure, support, community, treatment, and reality checks. One of the reasons I wrote Ben behind His Voices was to share how our son has been able to succeed with schizophrenia....but part of that has been our changing our expectations to more accurately reflect what he can accomplish as things progress.
Best to you. I know it isn't easy, by far.
Randye

Joyce
August, 21 2013 at 1:20 pm

My daughter has had all of the follwoing diagnoses: Schizoaffective DO, Schizophrenia, Asperger Syndrome, Bipolar disorder. I am a Registered Nurse. Until my daughter became mentally ill, I practiced in the med-surg/tele area. Now I do psyc. nursing.
The doctors do not know what is wrong with my daughter (now 20 years old)! Her symptoms started in 2006, a few months after her biological father died very quickly from stomach cancer (2005). Of course, the symptoms worsened after got married to a retired army veteran, who suffers from PTSD himself.
I believe that antidepressants pushed her into her first psychotic break.
Does any one have a success story to share? My daugher has always been a very bright, intelligent girl. She is in college right now. This is her first 'on-campus' college experience and it has not gone very well so far. I want to help her succeed.
I need to hear a different kind of story--SUCCESS!
Joyce

robin Pickett stone
August, 6 2013 at 9:47 am

I need help with my son, he is in jail , he has been getting in and out of jail, but he really is a good son , and here in alabama they don't care!! Please I need help

In reply to by Anonymous (not verified)

Randye Kaye
August, 6 2013 at 12:19 pm

Anybody know where Robin can get some good advice in Alabama?

Ina Jones
July, 8 2013 at 10:10 am

I can relate to all of you very well. I too have a son and a daughter with schizophrenia. My brother had it and it was a nightmare for my parents, younger sister and I. This was back in the eighty and the medication was not as good as the ones they have today so my brother never got a chance to recover with meds. Out of 4 siblings, and 9 grandchildren both my children were diagnosed with schizophrenia. They were in the hospital every year at the same time. My son got hooked on all kinds of drugs and was in jail several times for petty larceny. It began with ADHD and it escalated to schizophrenia. He was living with a girlfriend and she overdosed. Sadly his father passed 1 year after his girlfriend. I had already met my new husband and moved in to my new apartment one year before his father passed. I knew my son was living with friends but I didn't know he was using drugs and drinking himself to death until it was almost too late. I pleaded with my new spouse to let him in the house until he got his life back and he finally agreed. I spent countless nights on my knees and then one friend recommended I take him to a deliverance church. He refused to go so I went and I let them pray for me and my family. One day the minister who is an evangelistic bishop of a church told me God could heal my son through me. I was there for both my children. My daughter came with me but she had to fight her way to church. She was paranoid and heard voices telling her ugly things about her and she had bad anxiety. I just told her to force herself to go and one day the bishop called her to the front for prayer and told her "no more" God is going to heal you. Well if you don't believe in miracles, you should because she has been improving and I thank God so much. My son is also improving and slowly coming out of his addictions. He has truly come a long way. They are still improving and I am still praying for they total recovery. The dose on their medications has dropped tremendously. My daughter could not be in crowds and now she has no problem taking the bus or subway. She feels safe in huge crowds and she rarely hears voices. I hope this helps. I was able to handle my life with them very well. I'm not saying that I didn't feel stress but I kept myself busy by attending college again and praying a lot. There is hope if you seek the help of God. The social workers and psychiatrist are also a great help but the problem with this diagnosis is that the diagnosis of paranoia makes it difficult for them to trust those professionals trying to help them.

In reply to by Anonymous (not verified)

Randye Kaye
July, 9 2013 at 5:43 am

I am glad this has been helpful for you and your family. Each family, and each person living with mental illness, finds the combination of treatment options that works best for them. Thanks for your story!
Randye

michelle
July, 6 2013 at 4:09 pm

We have a 18 yr old with paranoid Schizophrenia diagnosed at 17 turning 18 .i always new something was different but the Dr's said it nothing or ADHD well i wish it was that and a dream to it has been going on 10 months it was hell should we believe the Dr ? but after seeing what we went through the voices ,paranoid stuff delusions it was sad it still is what parent wants there son to have this .he is on Invega for the last 5 months doing much better was on Seraquell stopped that not good up all night .takes valium but i must say i see my son doing better it 's ONE DAY AT A TIME ! because at any given moment it can change or just hoping being of age he doesn't want to stop his shot which has happened already .he trusts me be supportive and treasure everyday i also keep a journal everyday on him in case something goes wrong the DR s can read it .support groups are good N.A.M.I is good .we have a long road ahead of us lot s of prayers .oh don't forget for you to enjoy life as well get out and do something to it will take a toll on all who is involed .

siennarose
June, 27 2013 at 12:59 pm

I found this website in desperation looking for some support and advice and i'm so glad that I did. I am so heartbroken that my beautiful youngest 26 yrs old son has been diagnosed with Paranoid Schizophrenia. My other 3 sons live normal, healthy and happy lives, and it breaks my heart to know that this is happening. His father died when he was 18, which is when this illness began to take shape. Normally a quiet loving boy, he began to take drugs to cope with the pain of loosing his dad and took 2 massive overdoses. He developed an Obsessive Compulsive Disorder and eventually was put into prison for committing crimes. When he returned to live with me, all the other boys had moved out to be with partners. I began to feel very afraid of him especially with the paranoia that seemed to take him over. I had to move into a small flat whilst he was once again in prison, because I became very ill after he tried to hurt me, but this was only because he was ill. I have always stood by him and he was in a mental hospital twice quiet recently, but then he began to drink alcohol and so I wouldn't go near him because I was afraid. His brothers have been keeping an eye on things and the mental health team go to see him every week. He's finally taking the medication regularly, but he isn't a happy boy and neither am I. I feel as a mother that I have failed him and should be there to look after him. I am so distressed because he has recently been dabbling with Heroine. I am thinking about asking the Mental Health Team who are currently looking for him somewhere else more suitable to live to see if they can find somewhere for both of us. But the constant talking he does to someone or no-one is awful and drives me to feel that I just can't take it, but I don't want to loose him or fail him. Please can someone give me some advice. Thank you...

SUE
June, 27 2013 at 12:12 pm

I have 4 sons and my youngest 26 yrs old son has been recently diagnosed as having Paranoid Schizophrenia, possibly caused by the death of his father when he was 18 years old. To cope with this fact, he took so many dangerous drugs and also two overdoses which I believe contributed to this illness today. Usually always a quiet boy he began to develop an obsessive personality disorder and became very violent and aggressive towards me in the family home, possibly from all the drugs he was taking. I became very ill myself and whilst he was in prison I was moved into a small safe flat after suffering a breakdown. The rest of my children had already moved out to be with there partners.
Since this time, he has been in a mental unit on two occasions and I have always been there to love and support him alongside his brothers. He is still under the care of the mental health team and has been put onto an anti- pyscotic medication to help ease his distressing symptoms. The truth is that I had to stop having contact with him because he began to drink alcohol and take drugs again and I felt afraid but his brothers continued keeping an eye on things, Since that time I once again have been quiet ill from worrying about him all the time. The mental health team are trying to find him somewhere else to live, but I feel such a failure as a mother and wonder if I should ask them to find a place for us both to live together again so that I can look after him. The truth is that he's began to take Heroine and I am just worried sick that I will loose him forever if I don't do something. We are all concerned, but the other boys have children at home and so can't take him in. Please can someone offer me some advice as to what I can do please. Thank you

Lori
June, 22 2013 at 2:05 pm

My son,almost 26 ,last month suffered a psychotic episode and was arrested walking in tennis court near family condo. He always has had social problems mostly attributed to Asperger' s Syndrome , or high functioning autism. His father was a young man I had a brief relationship with while in Israel years ago. We lost touch. I am older single parent of 3 and I have many people I know but no one to help. But this week I applied for SSA and Medicaid with 2 women who went out of their way to,do the paperwork with me in one visit. Most of the medical people have been so nice, except the clinic doctor who upset Mike with accusing voice" So how long have you have schizophrenia?" I answered "one month." Reading this helps much.

GARVEY
June, 21 2013 at 2:31 pm

For 15 years I watched my husband struggle with depression, suicide attempts & paranoia. His diagnosis changed so many times.....bipolar, schizoaffective, etc. He's always been med compliant & it took a long time to find the right combo of meds.
We have four beautiful children together. He has his own business. He is extremely talented & intelligent. He has beat schizophrenia for now.
BUT our 8 year old son was just diagnosed with schizophrenia.....it was like being a death sentence. Wed taken him to the psychiatrist to be tested for ADD & excessive anxiety. We walked away with SCHIZOPHRENIA. Knowing its heredity, knowing his father mother aunt uncle ALL have this diagnosis STILL did not ever make me think that this would be his fate.
I wonder about my other kids....will they hallucinate, will they too long to end their tiny lives. Feeling overwhelmed & so depressed. We lost our possessions during hurricance sandy then lost our home a month later. We are staying with friends & technically homeless. They said his "break" occurred during the loss. He is hostile, threatens to kill his 5 & 6 year old brothers, says hurtful things to us & his older sister. Its like he's crawling out of his own skin....literally scratching it open.
Hate feeling that he feels so HOPELESS. Hate that my husband feels at fault. My HEART feels broken & my family feels like its falling apart. Idk what to do. Need stable housing.....LOST.

Elizabeth
June, 20 2013 at 10:01 am

Rh Our son is 22 and his dad, I, and older brother are fighting this horrible illness. I, his mom, knew something other than drug usage was stealing our son from us. His dad and brother have recently accepted his schizophrenia as the culprit behind all the pain and bizarre situations the last 4 years. He will not take meds as of now. We are seeing a counselor at the psychiatry office to help us. Our son recently admitted to smoking pot a lot lately with "friends". I know from reading that the pot can trigger a psychotic episode. I have learned the signs to look for. Sure enough: broke phone, broke table, and visit to my home which results in having a friend scare him away. Soooo sad. I never dreamed i would have to not allow my own child in my home. Goes against laws of nature. But did have a good day with him few days later. I don't think he knows I was behind the friend making him leave. At this time my main concern is how to create boundaries for him to leave pot alone and to get on meds.

In reply to by Anonymous (not verified)

Randye Kaye
June, 20 2013 at 11:23 am

ELizabeth - oh, yes. Been there myself, have felt those feelings. This is a long and winding road, and that's why I wrote "Ben Behind His Voices" --- so families can know they are not alone in all the actions they must take, the tricks up their sleeves, the grief, anger and, eventually, strength. My son takes his meds, but not because he agrees he has schizophrenia. It's a house rule - and he has been homeless in the past, so for now he accepts those rules.
Two other incredibly helpful resources: NAMI (especially Family-to-Family class), and the book "I am not Sick, I Don't Need Help"
Hang in - you are not alone.

robyn concannon
May, 22 2013 at 1:47 pm

Hi, I just read all these comments and Mandys' comments have made me feel like I am on the verge of tears. I know someone just like this. He really wants a girlfriend, he is lonely, it breaks my heart. He is so isolated. I keep thinking he is going to get better, and I keep wondering how the hell he has gotten to the stage where he is at. I can't even say who he is coz i am under so much pressure to keep my mouth shut and not tell anyone anything. I am finding this life so hard with someone i love so much being so off the planet and other people close to me with other serious issues. Sometimes i feel like joining them all and getting smashed and drunk and i am finding this whole carer caper too too much.

Mandy
May, 15 2013 at 6:19 pm

The books you suggested sound really good and "Defying Mental Illness" seems like it would be most helpful in my situation right now, wish I had a Kindle! Thanks for the links.

Mandy
May, 15 2013 at 6:06 pm

Randye,
Thank you for your response, you do a good job of replying to everyone here and I think that's fantastic. I did see on nami.org there is a family meeting on Wednesday nights at 6:30 pm. It was past 6:30 when I found it or I would've gone, it's at the place where we are currently awaiting an appointment. I don't live with my brother, he lives with my parents, but they are both very sick and so I am trying to do most of the doctor stuff because I know they are worn out just from being with him all the time. I can only be there about 6 hours a day. I am going to do everything I can in these next 2 days to get him some help.

Mandy
May, 15 2013 at 5:15 pm

My brother is 31 and he was diagnosed first as bipolar with paranoid tendencies and then it was changed to schizophrenia 6 years ago and after some trial and error, he was taking Zyprexa and Trazadone which took care of the psychosis but he was not the same, was like a zombie a lot of the time, slept more often than not, gained a lot of weight and started getting jaundiced from the liver damage caused by Zyprexa. He stopped the medication 3 years ago and has been fine ever since...until last week. He's been under a lot of stress lately and lost some sleep and now he's crazy as ever and getting worse every day.
He's highly intelligent (IQ is over 145) and I think that makes it worse because he has so much knowledge in his head. We are not very religious and haven't gone to church much so I don't know where he gets all this religious information but he knows so many specific stories from the Bible and he "talks" to God on the "phone" (the phone can be a sock or a water bottle.) Today he said that he is just walking with his brother Micheal the arch angel. He was also displaying symptoms of OCD...picking something up and moving it around in weird circles and putting it back down. Or he'd count...he counted to 5 most of the time (even if there were more or less than 5 of what he was counting) and he counted a picture and said "1.2.3.4.5...oh shit, we're f$&ked." I'm thinking, if you only knew how f#@ked we are. He said "War is coming." I didn't really know what to say, I said, "I don't think so, it's not on the news." He said #1 is God #2 is Hell and #3 is this and held up a tiny piece of sandwich meat and then threw it outside. He's threatened to kill himself, and both our parents. He's always lived at home and usually doesn't go out at all. In the past week he's been all over town, lost all his clothing and some how got soaked and his ears are full of water (the doctor looked) he was complaining of popping in his ears but I thought it was just the disease. He's complaining of all kinds of physical problems that aren't there...the water in the ears just so happened to be real.
Anyway it's really bad and NO ONE will help us AT ALL! We've taken him to both mental health institutes, the ER and the police department and no one will help him. The first place said he did not meet criteria, even though he's attacked my mom and threatened to kill himself, the police said he'd have to do it again before they'd help (my mom waited more than 72 hours to report the attack), the ER was useless other than identifying the water in his ears and telling us to buy some sinus pills for it, they did give us a referral to the other mental health facility in town. We took him there and the guy who was evaluating him actually said this was beyond his scope and went to talk to his superior. He came back and told me the same thing, he didn't meet criteria, even though my brother actually admitted (he hadn't before) that he had suicidal thoughts there. The guy said he'd have to hurt himself or one of us before they can take him in and that he has to be stabilized on medication BEFORE he can be inpatient. That is so backwards to me! The whole point of inpatient IS TO GET THEM STABILIZED ON MEDICATION. I told him this and asked him didn't that sound backward and he didn't answer me. I could tell he knew he was doing the wrong thing but his hands were tied.
He finally told me that they would call us for an outpatient appointment to get some medication. He insinuated we would get an appointment within a week. That was yesterday afternoon and no one called yesterday. I called again today and spoke with the office manager who was just as uncaring as everyone else I've spoken with. I don't know how these people sleep at night. She said that their new patient appointments are an hour long so they have to see when they can see him. I told her how the guy said he'd be in within a week and she told me that won't happen, the doctor is not even going to be there next week! So if I cannot get them to help him tomorrow or Friday, it's going to be 2 weeks at least. This should be illegal. He has medicaid so they will get their money, I don't know what the hold up is. I read about NAMI in the comments and I am calling the local representative tomorrow as well as the place that diagnosed him 6 years ago (it's in another state) to see what they suggest.
Anyone with any suggestions on this barbaric inhumane system I'm dealing with, I'd really love to hear them. They had my brother sign a paper "promising" he wouldn't kill himself. I said "Oh this is so you don't get sued when he does?" The guy just sat there. Makes me want to get violent and I am not a violent person. I love my brother and he desperately needs HELP!

In reply to by Anonymous (not verified)

Randye Kaye
May, 15 2013 at 5:28 pm

oh, Mandy -
so much of this sounds all too familiar, and I feel your frustration, believe me. Entire chapters in my book are so similar to your story. I know you love your brother, I imagine you hate his illness, and I wish I had the answers for you - but there are excellent resources available. Does your local NAMI chapter have family crisis info? So much varies state to state. There is good info here in healthyplace, also on nami.org, and the book "Defying Mental Illness" is also very practical. My book, "Ben Behind His Voices", has sidebars alongside the story that will also lead you to resources.
Please don't give up...but please don't try to do this all alone. We family members need support and education, too.
Other ideas welcome here, of course.
thanks,
Randye

carrie leduc
May, 12 2013 at 6:50 am

Hi,
I am a mother to a 23 year old son who has this mental illness as well. He has been in a home for men for almost 2 years now and has been put on medication for the last 6 months....finally. I can now have a somewhat normal conversation with him. I love my son dearly and have gone through so many emotions with this illness and with him. He wants to come home but honestly I am afraid of him. I also have 2 young girls at home still ages 8 and 6 and I do not want any harm to come to them. I feel so guilty about this. I just don't know what to do.
The shelter my son is in has put him on a waiting list for an apartment of his own. I want the best for my son but I just don't know anymore what the right thing to do is anymore.

In reply to by Anonymous (not verified)

Randye Kaye
May, 12 2013 at 7:17 am

Hi Carrie - congratulations on the "ordinary miracle" of conversation again! How well I know the feeling.
Re bringing your son home...sounds like guilt is your most pressing issue here. You must do what feels right for your entire family, hard though that is. Have you taken NAMI Family-to-Family course, or reached out for their other resources? Helped me tremendously, especially with knowing that self-care was a vital priority. MY son currently lives with us, temporarily, after 8 years in a group home (which really helped his independence), spending weekends with the family only when we felt safe and comfortable. Waiting for his own housing, if your son has adequate support from a case management team, may be your best bet.
We have to make heart-wrenching decisions, yes. But your relationship with your son might be better if he does not live with you. And make sure you get some support for yourself, and you can then be of best help to all your family. My two cents. Hang in there, and don't go it alone!

Leah
May, 9 2013 at 1:15 pm

Hi Randye,
I just stumbled upon your blog and I really don't know where to begin. My reasons for writing you are compiled of ALL of the previous writings. My son is 26, highly intelligent, and is suffering from Sczicho-Affective Disorder, which he was diagnosed at the age of 16. He has lived in Hawaii, New York, New Zealand and Portland, Or, now back with me Everywhere he lives it is great for about two weeks then I wait for the other shoe to drop. Now he is supposedly studying for the GED so that he can apply to Universities in Europe, which is where he wants to go and has want to go since he was a teen ager. My son despises the USA, has 0 friends, doesn't use his cell phone except when I call him. Stays in the house all day, although he told me that he got two jobs when he was living in Portland for 3 months, whenever I mention a job, he becomes angry. He becomes angry in general easily. He doesn't go outside except to walk his dog for about 10 minutes. Other than that, he only goes outside at night, walks to the store, goes to Rave Concerts, music concerts, is a staunch Vegan, never smoked & never drank. He says he doesn't want to be open with me because I don't listen to him and because of what I did to him when he was younger. I have raised him on my own and I have only spanked him once. In two years or less when I move to the Bay area and rent out my home, I told him that he has to be ready to live his life and I will be able to visit him there. My brother and I helped him get SSI almost three years ago, so he does have some type of income to sustain him...I do attend NAMI meetings, although they don't seem to help much in the real scheme of things. My family doesn't want to hear about this anymore, although they do love my son, he doesn't want to be around them or talk to them, like I said, he talks to no one. Do you have any sound advice or perspective? He doesn't believe in therapy nor meds. Been in hospitals 5 times, the last hospital told him that he can live on his own and that he isn't depressed, but something is radically wrong with my son. Thank you so much for reading my thoughts today.

In reply to by Anonymous (not verified)

Randye Kaye
May, 9 2013 at 5:53 pm

Hi - and how I wish I had concrete answers for you. It's so hard to lose our chidren this way. I'm glad you found NAMI, but wonder if the Family-to-Family course might be more concrete for you - the knowledge I got there helped me know that this was not my fault, nor my son's fault.
Speaker meetings also help in a more educational way, and I also recommend lots of great resources in my book. Sounds like what you need is concrete education, advice, and support...and also to not feel so alone. Sadly, there is only so much a mother can do. I hope that you are taking care of yourself in the meantime. That remains one of my most valuable lessons.
You can't "fix" your son, but there are some steps you can take to emotinal healing. You may need to get in touch with a stonger NAMI affiliate. They vary. Keep trying. Read as much as you can. And I also found therapy helpful for me, when Ben would not go.
hope that helps a little,
Randye

Donna
April, 29 2013 at 7:28 pm

Hello,
I am grieving for a friend who's daughter is 25 and out of control. She is sleeping in planters and on golf courses and in the wilderness. She is dilusional about food and cutting, won't eat or drink and has went days without food or drink. She was apparently diagnosed with schizophrenia in Jan. 2013 but the doctor will not release her medical records since she would not sign release and refused medication. She carries knives with her (large butcher knives) and has an unending access to funds that her mother cannot control. I have suggested to my friend to try and get emergency guardianship and get her picked up and put on a 72 hour hold until she can get med records court ordered and get her daughter the help she needs and on daily medication. The family is devastated and it is physically, emotionally and spiritually killing the mom and brother of this young woman... She is suicidal and escaped her moms home and caught a flight to somewhere... Can my friend get emergency guardianship to try and protect her daughter from suicide or hurting someone? Please help. They live in Hawaii.

In reply to by Anonymous (not verified)

Randye Kaye
April, 30 2013 at 6:14 pm

Donna, I am so sorry to hear this. How terrifying it must be. I don't know about the laws in Hawaii, but I suggest your friends contact the NAMI OFfice is Hawaii - http://www.namihawaii.org/ -
and ask for information and resources. It's a place to begin. NAMI also has a national helpline at Helpline: (800) 950-6264
A lawyer who specializes in mental illness might help as well.
Hope that's a place to begin --
Randye

Alicia
April, 23 2013 at 8:06 pm

I am leaving this as an anonymous comment because I believe this is my son's personal health condition and his to share if he chooses to, not my choice to share. After three suicide attempts and hospitalizations I feel that normalization works the best for me and my son. It has been truly awful for me, I am dealing with that and can tell you that I dont want him burdened with the ashes of my expectations. Neither he nor I bargained for what was in store for him. He has such a good, true heart :-). I remember when he was 14 and there was a "snow storm of the century" predicted. I got up early to shovel off the driveway (single mom) and I got downstairs - there he was dressed in his too small snowpants already saying "mom, I'll call you if I need you...I got this". And he did. I was so proud of him. Our story of readjusted expectations started with a knock on the door - it was our bedroom door, my (2nd) husband and I were asleep. My son flung open the door, turned on the lights and said "What are you doing - I know you're working with them. " Disoriented, I vehemently denied it but he spilled his guts claiming that the train conducters and people walking dogs on the street had told him I was trying to get him arrested. It was a long night, but I slept easily after the talk thinking it was all some simple misunderstanding and would be resolved. Prior to that, I had only noticed a tendency for him to be a loner, a distrust of formerly trusted friends, a falling apart that seemed (sort of) nominal. That there is/was no "them" for my husband and I to even think about colluding with but that didnt make sense to him. And my beautiful, smart, son spiraled so far out of control that I fielded overy the next several weeks regular 2 am conversations on "them" with him on what train conductors had said, random phrases I had said that showed up with sinister back text on "Craig's List"...btw I now hate Craig's List. We have ups and downs. For most of you, it sounds like you have family members with this condition who live with you and who are disrupting your world and you are dealing so admirably with it. I would love to be in that situation. i, instead, have a son who only trusts my mother and will only live with her (in a house I own that I have her living in rent-free to be specific) My mother has just turned seventy and had no patience for the kids she did have, even less for the grandson she didn't ask to live with her. I need to figure out how I could get him to live with me. It is in another state (and one that figures in his paranoid delusions) so he refuses to move here. I just really want him here. I think it is a healthier environment than with my mom, with good work, good wages, and realistic expectation slong with family (just me) who loves him so much.

In reply to by Anonymous (not verified)

Randye Kaye
April, 24 2013 at 1:39 am

Dear "anonymous",
you have spoken volumes with your story, and echoes so much of the loss, uncertainty, fear and love so many of us share. There must be a way for families to get help for the family members they love so much. Thank you for writing, and my heart and thoughts are with you.
Randye

Mary
April, 16 2013 at 11:47 am

My daughter, 33 years old, is acting very strange. I've read on line and she seems to have the signs of paranoia and maybe schizophrenia.
She seems to be getting worse by the day....I'm praying that she doesn't get fired. devastated...refuses to see a therapist. Her father and I are at our wits end.

In reply to by Anonymous (not verified)

Randye Kaye
April, 16 2013 at 12:28 pm

Mary - if your daughter won't accept help right now, the best thing you can do for yourself is take care of yourself, and learn all you can - get support and education for yourself and your family. This may put you in a better postition to help your daughter.
Have you checked out your local NAMI chapter? Can you start reading here on healthyplace.com? You may want to make an appointment with a therapist for yourself in the meantime - someone who understands mental illness and can guide you.

Denise Fraser
April, 9 2013 at 6:55 am

Hi,
My son has had this awful illness for 8.5 years. He has only ever wanted to harm himself and I could catch him during these times.
Recently in the past 4 months he has become angry and violent. He attacked his father, myself and 2 members of the public in the past 6 weeks.
My son is back in the mental health unit, I have to press charges for his safety and others. Im afraid of his illness, grieving for my lost son.
Ive not seen my son since he attacked me and I will not see him until he is
medication compliant.
Im trying to fix my face and get on with life but my heart is breaking.
I never in my wildest dream thought I would not be able to look after my son. Im his mum and I cant make it better..............

In reply to by Anonymous (not verified)

Randye Kaye
April, 9 2013 at 7:16 am

I know, Denise...it is so difficult and heartbreaking. Across the pond or not, family members of those diagnosed with schizophrenia have feelings of loss, grief, fear...and eventually (with support and education, and a bit of luck) acceptance, hope, and advocacy. But you are not at that stage yet, and I feel your pain. Our journey eventually became a book, so we could help guide others down the same painful road.
Is there a support organization in the UK that can help? Here in the states, we have NAMI.
Randye

Laura
April, 8 2013 at 2:44 pm

I couldn't get through all of your comments because I'm just trying to hang on. It seems like everytime things are starting to get under control, we loose it. He looses it, we loose it. My son is 21 and I've only been going thru this for the past 4 years. There are several things I've realized in this short period, being;
We are dealing with a disease that we have no control over. If they have no control there is no way we ever will. Quit trying to control it and learn about it...everything you can learn about it.
Our children are not NORMAL. They never will be and there's not a damn thing we can do about it. Society is not set up to handle this so we need to learn how to. Bring awareness to this condition that has always been a part of society so that eventually (I mean we can hope and prey) that society will step in and understand and be a part of their/our every day lives.
Mainly what I'm trying to say is if your a parent of a child going through this, don't beat yourself up. You did nothing wrong. But it is your job to be there as long as you need to be and that is the promise you made when you decided to have children. Protect them, teach them and be there for them - nobody is promised tomorrow and by the way, aren't we so fortunate to not have to go through 1 day as they go through.

In reply to by Anonymous (not verified)

Randye Kaye
April, 9 2013 at 7:36 am

Hi Laura -
oh, yes, it is so heartbreakingly difficult...and you're right, there is very little control over the disease. We can, though, sometimes manage our reactions to what happens, which is what we've tried to learn to do. Ben's illness "is what it is"...and while I certainly don't "like" it one bit, most of the time we have come to accept it, and then see what is possible.
Thanks for your words of support...right back at you...I wish you and your family the moments of clarity, advocacy and hope that we treasure.
Randye

Sharon Anderson
February, 19 2013 at 6:05 am

My daughter will be 45 the first of March. She never had children. There is such a long story here and I don't know where to start, except to say I am 70 and she is waiting for me to pass away so she can get on with her life. She lives in a house that I once lived in but I moved about a 4 hour drive away in the next state. I was paying all the utilities and even buying her groceries until a couple of years ago. Now, I just pay for the taxes and insurance on the home. She lost her drivers liscense 5 years ago because of a DUI. She had gotten out of a couple others thinking they wouldn't show up on her driving record. She thinks she is the best bartender there ever was. I talked her into going to beauty school and that wasn't easy. I actually paid her to go. I thought she would have something to fall back onto if she couldn't get a bar job. Dawn claims she can't get a job because she doesn't have her drivers liscense. She thinks I am punishing her by not helping. Truth is she still drinks and says everybody conspires against her. Every job she has ever had the girls or women are jealous of her and she doesn't know why. The police were unfair to her and roughed her up and I didn't care or do anything about it. There is a video tape of her when she got her DUI but she refused to let the lawyer show it to me. I paid the lawyer,fines, evaluations and etc. but she wouldn't do as the lawyer told her or anyone else for that matter. Dawn, only has me and her brother, her father and all of his family or deceased. I am the oldest in my family other than a few cousins. So, there is no real support system for either of us. I don't know where to turn. My son has done all he can and he is busy putting to boys to college. Dawn doesn't listen to any advice or help he offers. What can a mother do when she knows her daughter needs mental help and she refuses to admit it or do anything about it. I don't even know who I should go to. Any coments will be appreciated.

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