We are caregivers - A mother's story about her young adult son who lives with paranoid schizophrenia

44 Comments | Posted

Morning Zen Guest Blogger ~ Melanie Jimenez 
Writing the truth to help fight the stigma that surrounds the diagnosis and to help people better understand the illness. 

We Are Caregivers 
Often there isn’t a lot said about the caregivers for someone with schizophrenia. We tend to show up in stories written by the media after a tragedy happens and then we are put under a microscope for people to determine if we have done the right thing in raising, caring for, and protecting our loved ones. Often the judgment comes down on us from those who don’t have the first clue what it’s like to be a caregiver. It’s so easy for them to say what they would have done differently if THEY were the ones deciding the fate of our loved ones with schizophrenia. It’s so easy for them yet it is one of our most difficult jobs and one that we pour our heart and soul into daily.

To begin with and most importantly there is love. We, as caregivers, love our person with schizophrenia with our whole hearts. If we are parents to someone with schizophrenia there is also an even tighter bond because our child was created by us, born to us, and lovingly raised by us. We have ALL given pieces of ourselves, sacrificed our own way of life for them and have spent many late nights worrying and praying. Behind the closed doors of our homes or a therapist’s office or a psychiatrist’s office we put our heads together to decide what is best for our loved one and sometimes our choices work but more often we are less than successful. You see, it’s isn’t easy caring for our loved one. Besides making normal life decisions, we are also forced pretty often to decide FOR our loved ones what is best for them. Sometimes, though, we fail in our choices and find ourselves in a quiet room, our heads in our hands, defeated. The beautiful thing about we caregivers, though, is that we never give up. 


Then there is tenacity. We caregivers are fighters to the bitter end. We fight for proper medical care, humane treatment and respect for our loved ones. We are advocates of the strongest kind and we are a force to be reckoned with. Often you will find us fighting for rights to see our loved ones locked behind hospital doors hoping for a chance to talk to their doctors and offer insight that no one has but us. We are found on trails and surface streets wearing our t-shirt in support of our cause while we walk, run and bike for miles to raise money for research. We sit quietly at our desks writing a check or two to our favorite organization that supports and educates others about schizophrenia and other mental illnesses. In the smallest, yet biggest way, our sometimes quiet voices raise up in earnest to defend our loved ones to family members and friends who just don’t seem to get it. We are fighters, we are advocates, we are the voice of our loved one with schizophrenia. 

In the end, we are human. We are flawed and we make mistakes. In the end, after we have given our heart and soul, sometimes we aren’t successful in our fight. In the end, love does not always conquer all. In the end though we did everything we could and we did it with love, with intelligence, with experience and with a fight rivaling that of a mother bear defending her cubs against the predators that threaten their life. 

We are caregivers. We are mothers, fathers, wives and husbands. We are children fighting to understand our parent with schizophrenia and we are friends accepting our loved one for exactly who they are. We are caregivers, people from around the world giving all we have to love, protect and care for our loved one with schizophrenia. We are caregivers and we will be here to the bitter end even when society has walked away condemning our loved ones for simply being human. 

We are caregivers and we are strong. Do not underestimate us. We are here and we are not giving up.

melanieMelanie Jimenez is the creator of the blog Understanding Schizophrenia. She started the blog to help bring awareness to the realities of schizophrenia. "I wanted to be sure that people got a perspective other than the one that the media portrays. My blog shows the candid and raw point of view of what it's like for me raising, living with, and loving my son who has paranoid schizophrenia." You can read more of her written essays here.



  1. Jessica's avatar
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    The stories sound so familiar. MY son was diagnosed at age 16. They made it seem like as long as ge stayed on his meds. .he would be able to live a Pretty normal life...That hasn't been the case.He's been in and out of hospitals and jail.It's been a fight left and right to try to get him help.He is 20 yrs old now and currently under commitment papers in a hospital.He has been talking about killing someone/his self and wore a mask to the neighbors as he beet on the door before dawn. My daughter and I love him more the life but we are both scared and drained that we are no longer ourselves. As with the other stories. ..it is sooo much more to this story...Where is the HELP? I know about NAMI.
  2. Rhonda's avatar
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    I feel for you,women and men. Im lucky because we have clinics in Bremerton and Port orchard WA. It's a struggle for them to want to try medications. They have strong Negative side effects. Chris used to be on Risperadal. He would be waxing and waning. I had to ask what that meant. The nurse used to bring him his meds at the house. He's now taking olanzapine the med, and bentropine the side effct pill., and the injection flue something if that helps. Everybodys different. But I would find a good Mental Health place.
  3. Rhonda's avatar
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    My Name Is Rhonda Baker I live in a small town Port Orchard Wa. I am a mother , Mom of a 33 yr old Paranoid Schitzophrenic. I live with all our boys, My Husband is wonderful and were still married. My Son Chris is in jail. The police came here over demestic Violence with Chris called the cops. My other son Brian beat him up bad and Chris made threats to hut the family. I know he didnt mean it he gets angry comes down and opologizes 10 15 minutes later. But I dont think the judge is going to drop the no contact order this time. Im afraid for Chris, Thats why Im choosing to leave My big expensive beautiful home so chris isn't out in the cold. I know he's not lucid most of the time. He goes to Kitsap mental Heath and has and sees his treatment Coordinator. every week, Who says He's on enough medicine. He gets an injection and pills. He's not doing very well. I do talk with Kitsap Mental Health. I don't want to see Chris out on the streets. I know thoses were idol threats, Just like Madonnas comment she thought about blowing up the you know! I heard she was investigated. Bottom Line Chris is better off here with his loving Family than out on the street in Bremerton violence and evil people with guns And anything goes. its a mess out there and we love our SON!! Not to mention its cold wet raing all the time he has nowhere to go. He has a loving family that loves and cares about him.
  4. Lynne's avatar
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    Thank you all so much for your heartfelt stories as they all touched me. Ana, yours in particular.
    I feel as though we are living parallel lives and almost grieving a death of what our child was.
    This is so hard for me to accept and I am having a hard time staying strong for myself and my daughter.
    This is so exhausting and draining and sad.
    I'm reading Dantes Inferno and right now don't know which ring I'm in

    We need hope and they need us to have hope.

    I feel so alone and used to be very outgoing and social, now I choose to make no friends. I don't see the point.
    How awful is that? It's self protection.

    It's our life now I guess
  5. mike's avatar
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    Our Daughter was diagnosed with Autism at 3 years and struggled in School and life. A week before her 18th birthday she started hearing voices and crying all the time. After the nightmare of trying to get her admitted she spent a month in the psyche ward of the hospital. Once the insurance ran out she was “cured”. 4-5 different meds and we got back a medicated zombie who slept most of the day. She is now 22 and can barely function and still hears voices. We are exhausted and my wife has to bear 90% of the appointment load. I wonder what is going to happen to her when we die. I have lost my faith and wonder why some people have situations like this and some don’t. I feel your pain and only people in this situation can really understand what it is like.
  6. Brother's keeper's avatar
    Brother's keeper
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    My brother is thirty five and has had schizophrenia since about five years old. I live with him and my 63 year old mom in a low income apartment complex. I used to have the semblance of a life but no more. My brother takes several medications daily just to be able to function as a human halfway decently. It's still very rough though, and sometimes the situation is touch and go when he gets into one of his irrational behavior modes and nothing said can reason with him, usually over some trivial issue that he makes into a tempest.
    Schizophrenia is really tragic madness for not only the person afflicted but for those who are willing to support the person. My mom never gets a break from the constant stress of dealing with her disabled man-child, and he will never be cured of his disorder. No one who doesn't live in proximity to a schizo can know how difficult and frustrating it is to deal with one. Our father is a completely selfish piece of sh**t who was divorced from my mom when I was three, and he has never tried to understand even half-heartedly his son's disability or be involved in it. My mom's siblings (my aunts and uncles) who were once lightly supportive with morale have also turned a blind eye now that my mom's rich mother is being cared for in dementia at great expense. They have plenty of money too but prefer to keep the old rotten vegetable alive rather than use some of her millions to help out my mom, who has never gotten a proper break or even token recognition of her ordeal from them. They don't give a damn, because they have conveniently labelled my mom as the Black Sheep for some of her past shortcomings. Well, to hell with them. Relatives are the worst hypocrites and will spurn one faster than a complete stranger will. If anyone has read Agatha Christie they will know that she possessed an uncanny ability to portray her fictional characters in pitch perfect situations whenever it came down to money and the fighting (and killing) over it. I never realized how spot on she was until this all happened in reality to my family and showed me what the people you thought you knew are really like. You don't.
  7. Elizbeth's avatar
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    My son has schizophrenia - it is a nightmare for everyone involved, a complete nightmare - for him, for me his mom, his father is not in the picture and never has been and is a useless waste of space. This is the most awful affliction. It wrecks families. It has wrecked my son's life and my life. I hate it.
  8. Lorie's avatar
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    My son is now 19, diagnosed at 17, turned 18 and refused to take his meds...one short stay at the behaviorial center later, and we have absolutely no idea what to do next ..He was the most amazing, loving, friendly child....now he's a shell of his former self...doesn't talk, uses finger snaps and head mods to answer questions..stays in his room, laying in his bed, staring at the ceiling lights for hours...refuses to see a Dr, lost all of his friends, won't go anywhere, has become mean to an outside cat when he used to love animals so much he would literally cty when he seen those commercials asking for $$ for abused animals.....he has all of the negative symptoms..wen he was first diagnosed he was having delusional thinking, but we don't know if he is now or not because he thinks that if he admits to it we will put him back in the hospital...I have since quit my job I take care of him because we are afraid to leave him unsupervised before long because he has literally left and it took us 2 days to find him....cops being little help because he's an "adult" found him an hour and a half from the house sitting in a car garage in a city hes never been before..reason he gave us was that he needed some time away...from what he couldn't say.....It makes it a smidge easier knowing that we are not alone....it is the most heartbreaking thing our family has ever seen or has gone through...it's like watching a monster eat away at your child and not being able to do anything but watch...it's tearing us apart
  9. Scott Bryant-Comstock's avatar
    Scott Bryant-Comstock
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    Contact the NAMI hotline - 1-800-950-NAMI (6264) or info@nami.org The NAMI HelpLine can be reached Monday through Friday, 10 am–6 pm, ET.
  10. Jill's avatar
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    My son is 25 and mentally ill. He refuses to seek help at the hospital. This would be his 3rd stay for a relapse due to medication changes. He actually ran off when I tried taking him for help to the hospital recently. I've had to take off work for the last week. How do I get a petition or guardianship over him in order to seek help at the hospital. The police and ambulance in my small town refuse to help transport him to the big hospital that has a mental health facility. The doctor won't petition unless he sees him. Their office offered zero answers on getting him help and into the hospital. No one tells you what to do in the doctors office. I need him transported cause he will not go with me. I'm stuck at home caring for him. Afraid of his behavior. The last thing I want is for the police to come to our home and end up arresting him for aggressive behavior. Why have all these professionals let me down. Given absolutely no answers in steps I need to take. I feel so lost at what to do next.
  11. Catherine A Krull's avatar
    Catherine A Krull
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    how do you choose between your third great husband and the husband who does not understand your almost 38 year old son and the life of hell from paranoid skitsofrenia his real father and family have deserted him and now i have to choose between f inally somekind of happiness or leaving my son alone which i f fear will definitely kill himself these holidays aproaching i feel so hopeless my heart aches how do i even think of picking between my own flesh and blood to my husband who truly loves me i am 62 and just wish i were dead can't bear my sons pain anymore or mine
  12. Patricia's avatar
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    A blog with useful info for families and patients with psychotic disorders:curetoschizophrenia.blogspot.com, My son was diagnosed with paranoid schizophrenia when he was 30s. After a difficult period coping with depression, anxiety and paranoia, My son feels his illness is under control and permanently cure using herbs, thanks to a very effective herbal product called CONSUMMO. In the midst of movement and chaos, keep stillness inside of you and everything will be okay, don't ever give up. check out the link to know more: http://curetoschizophrenia.blogspot.com/ or contact me with this so I can share our experience with you: patberg080@gmail.com
  13. Barbara's avatar
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    Great thread. I have been taking care of my daughter who was diagnosed with schizophrenia for 14 years. She is 31 now. It was easier, although not easy when my husband was around, but when he died suddenly a few years ago, I am left to do everything myself. Work, cook, clean and on and on. Y daughter takes medication, but it is not magic. She is ill, does not drive anymore and depends upon me. I will never let her go. I am committed to caring for her, and am honoring my husband's wishes by doing so. Lately, as I get older, I am feeling more depressed, anguished sometimes. She also has no friends, and people do not want to come here. And of course my heart breaks for ,y daughter, seeing her life so compromised. I am glad to have found this blog. I needed to speak today. Thank you for listening
  14. Dorothy Jund's avatar
    Dorothy Jund
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    My son was diagnosed with schizophrenia when he was 13 years old. His father my husband did not know how to handle this diagnosis of his son who excelled in academics and sports, he committed suicide 8 months after my son's diagnosis. Along with support from family and friends I am finally getting the hang of the health and legal systems.My son who is only 16 now is in an excellent Neuro rehab center in Texas. He has just recently been diagnosed with O.C.D , extreme anxiety, and PTSD. I have been to 2 rounds of NAMI classes. They have helped but I wish I would have had help navigating the mental health do's and don'ts. Right now I try to keep a sense of humor(Like when I locked us both in with gorilla glue trying to fix our screen door.) if I don't laugh I would cry!!!!!!
  15. Ausha's avatar
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    Well I sure can relate to a lot of you here. I too deal with a person with schizophrenia. My sister was 17 or 18 when she started showing signs (she's now 19). I though it was merely a mental break down seeing as though my mom had passed and she was doing to well in school. She was in California at the time when this all happened, she wnt do there to start fresh and join job corp. Everything seemed to be working out well until I started getting phone calls from both her and my cousin who she was staying with. Both of them kept saying how they kept getting into arguments. My sister would say that my cousin would spy on her, it got so bad that my sister called the cops. I guess my cousin got tired of my sisters shit so she drove to san jose California were my sister was supposed to get for job corp and bought her a hotel room for a week-mind you I'm all the way in Colorado and can't do shit. My sister knew no other family member down there in California. lucking she came across a shlter for teens. to make a long story short, my sister went slightly mad. My sister would talk about how people her trying to fight her and just talk about weird thing I couldn't understand. I truly wanted to believe my sister, but all of this just seemed off. Later down the road I found out she had been placed in a hospital. After she was released shr seemed fine, she had gotten a job and had visited me. She had went back to Cali and bam! she change once more and it's been an adventure every since. She has no one but me. Every time I see her talk to herself or step out of character I feel for her. I know I don't know how she feels, but just like her I have changed. I am a part of a life I never thought I'd have. I fear for her future, I cry for her pain and hope for peace in this life with her differences. And to be honest I fear for my future but I know everything happens for a reason.
  16. Diane  Severson's avatar
    Diane Severson
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    Reading these comments has comforted me, knowing our family isn't alone in dealing with this devastating g illness. We suffer, but my son suffers the most being diagnosed with schizophrenia 20 yrs ago he continues with delusional paranoid thinking even while on his medication. He has worked a steady job until his recent medical emergency and 3 surgeries. Now it looks like he might not be able to work which makes his days and nights even longer for all of us. As a family we do worry what will happen to him when we aren't around and he worries too. He has very little insight into his illness but never the less doesn't fight meds or drs visits which we are greatful for. We expect respectful behavior from him or else...and he knows he could lose alot of his independance if he doesn't comply, so far, so good. We take one day at a time, and continue to trust: God, our own jugement, our son's better self, and the systems in place in our community, we advocate when necessary, keep lines of communication open between family and doctors and live as fully as possible each day. Ithas been possible to have a life for all of us through this devastating disease but it takes a lot of work.
  17. Brenda's avatar
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    My son was diagnosed 9 years ago with schizophrenia. He is 27 now. There was no clear information of what to expect. I thought if he got on the right meds he would come back to us as the young vibrant popular man he was. This is the worst disease there is as many health professionals have told me. With my son being 18 I constantly was faced with no longer being his legal guardian so I would struggle to be given any information of his treatment. I went to court to become his private guardian. He believes I am controlling him. He is very demanding. Tells me I put him in the hospital and convinced the doctors he is sick when he isn't. The verbal abuse is constant. He seldom shows appreciation for all I do and if he doesn't get what he wants he becomes very mean. I am a single mom at 53 that went back to be a teacher am a foster mom and lives alone in an acreage with horses dogs and a cat. I decided not to work full time this fall as I cannot teach and deal with everything my son requires. Unfortunately I am getting more withdrawn from my son as he is so negative to be around. This disease sentences not only the victim but all that love them. I have blamed myself. I have researched and searched every resource I can get my hands on about this disease. I hate the medications they use to treat him. He had been on them all it seems. Abilify olanzopine cloxapil etc etc. We lose him when he is manic we lose him when he is over drugged. Then every so often I see my sweet son come back. He will hug me and tell me what a good mom I am. He will tell me I am one of his only friends now. And this is the only payment I need to keep fighting for him to have the quality of life he deserves. I am trying to step back now and see if the system will take care of him so when I can't I'll know he'll be ok. I do not want my daughter to be the next care giver. That is not fair. So I push fight and am the squeaky wheel to get the help he needs to ensure he is and will be taken care of by the supports I am putting in place. The system is so flawed. Parents should not have to fight, feel guilt, or feel judged like we somehow were bad parents and caused this illness. Although we have a system that is greatly lacking here in alberta my heart goes out to others as I believe they are worse by what I'm reading. I am now looking looking into supplementing my son with vitamin b12 and foliate...Google it. .there seems to be deficiency of these linked to mental illness.The pharmacist told me it would not effect his regular medications to supplement this. Make sure u always ask before giving any addition vitamins etc. Love and peace to all of u. It's a hard road given to very special parents. You are amazing! Your kids are amazing. Journal. Find support groups of others that truly understand. Stay positive! You still have ur child! Maybe sometimes it feels only physically but they are in there. I'm thinking we parents are going to get moved to the front of the line when we are lined up for the golden gates😊❤
  18. Amoo's avatar
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    This is the saddest thread I've ever read. Is there truly no hope for a life for people with schizophrenia?

    My 24 YO son was very recently diagnosed with what appears to be schizoaffective disorder. Two too short hospital stays ensued in the past 2 weeks. He's in his third now, which should run longer until he is stable on meds. He just completed a tough college degree a couple of months ago and if his mental state was better, he would be working. He was barely holding it together before committal, and when the meds work he's the sweet person that I know. I'm hopeful for him to gain clarity, and to enter an outpatient program to help him re-gain the skills he lost. He had a circle of close friends for many years and pushed them away as the darkness closed in. I know they still care for him and that he can rebuild those relationships if he can get perspective.

    Any advice? We are fortunate to have good insurance and good resources - at least as long as we continue working.
  19. Scooter's avatar
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    schizophrenia Has gripped what was the most beautiful kind boy. He is now 22 and deep into his mental condition. He wrecks havoc on the family. Abusive, yelling, the Devils everywhere, he is going to kill him self. He is paranoid of Cops, authority. The pot he smokes now makes him look like a mad crazed manson type figure. Wont shower for days. Locks himself in a trailer for days. I have now idea what to do or deal with it. I don't have money ,there are no hospitals that will take him. He will either commit sucide, get arrested and get killed in jail or other? I know I am not to blame but its a living hell what his sickness has done to us. I have no hope or answers……. So tragic. It must be terror for him……….
  20. Brigette's avatar
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    It's 230 am here. Another night of restlessness. Prayers. Questions of why I am the sole caregiver to my 26 yr old son with shitophrenia. I have always been somewhat of an introvert and I wonder if that was gods way of preparing me for this isolated life of caring for a mentally ill child. My sons has been telling me of the bad thoughts he has that are inconceivable to me. I don't know what to do. I want to believe that these will remain thoughts and never be acted upon. He takes his medicine regularly I don't know how much longer I can ingest this without getting so depressed myself that I can no longer continue to push forward work take care of all my responsibilities and be there for my other children a grandchild on the way and my husband of 13 yrs who is a fantastic understanding soul but how long can he be expected to endure this life? This is a 24/7 episodic situation. My neighbors. By now. Realize there is something amiss. My son does not have one friend at 26. We recently helped him get a small home of his own very close to our home. But while he feels a sense of independence the fact that he has no friends or a companion is even more pronounced and his new neighbors are realizing he is different. Even when he goes to support groups he is with others who are perinood also. Finding a friend seems unlikely. How can a god life be so cruel. To my son. And to me to have to watch and endure. His father has basically ran away. He will not deal with him I feel so angry I get angry at my son. He is mean to me and I am so resentful. My world feels like it is claim g in on me and it takes all I have to try to stay afloat. I have gained 70 lbs. I eat my eamotions. The ups and downs of this journey leave me exhausted and listless. I am having a hard time taking care of me. And my other kids. They are all young adults but this illness takes up so much of my energy there is barely anything left for the others. My youngest has turned to heroine. He has been on this for three plus years. I want to run away but my conscious and concern and love for my children will not allow me to walk away. I feel like it's time to save myself because I cannot seem to help anyone.
  21. Jeannie's avatar
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    My son was diagnosed with paranoid schizophrenia in 2007, I have seen him arrested and put in paddy wagon because he didn't take his meds. I've seen him in jail because he pushed a nurse when he was off his meds, nurse suffered redness, she stated my son was a thug because he had tattoo. My son called police on me when I was his payee. He had an episode once on mothers day, police handcuffed him, as he waited to be transported to hospital. He cut his wrist before. He is 33,he lives with me and his father. He wears mask, kunfu outfit. Walks in neighborhood with red boxing gloves. Currently not on any prescription or street drugs...but he is very argumentative, can't have a civil conversation. He was under commitment I can go on and on. Too much to share...I'm just tired one minute I want him out of my house yet I don't want him homeless. In order to get help he must comply with mental health facility, he feels the only thing he needs from them is housing.
  22. Susan's avatar
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    These stories sound so familiar. My son is schizo affective and is noncomplient on his meds. At age 22 he has allready been inpatient 14 times since he was 19. He has been to every Phsych Hospital and clinic around. I am simply spent.Laws need to change so these folks cant sign themselves out of group homes and treatment. it is exausting to advocate and work on getting him help, but then he refuses it??? I hate the thought of leaving him homeless, but there aren't many options left. when he comes home he gets very abusive and agitated. He "self medicates" by abusing pot which sends him into a psychotic episode. If you implement a restraining order, then you can't advocate...it's a visious cycle. SCIP, hospital, home, court system... we need a better way to manage psych patients care. My son can be scarry at times, other times he is my helpless little boy. I feel very defeated in all of this. Especially each time they Hospitalize him, I feelmlike I failed again.
  23. Catrina Malloy's avatar
    Catrina Malloy
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    I would like to speak with you regarding my son NC sucks!!!:(
  24. Karen Wilhoite's avatar
    Karen Wilhoite
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    I to have a son 18 autistic with manic depression, cognitive delays and PTSD. He is mean to me then when the rage is over he acts like a little child. I just told them today he cannot come home I am scared he has ripped a door off cabinet drawer. Closets are broken, bottles fly he tries to tip me out of recliner so it will fall on me. I love my son but cannot tolerate anymore abuse. I feel lost and alone it is just me and him.
  25. Ana's avatar
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    I am so tired. I have been dealing with my 28 year-old schizophrenic son for many years. At first, he just had some auditory hallucinations as a teenager. He seemed to be able to at least pretend normality after his hospitalization. I almost felt that it made him worse. I could only see him at designated times. When I did, he was like a shell. They wouldn't allow him to go until he was stable and that meant that he had to pretend to be "well." Over the years, it just got worse. By the time he was in college, he had decided that I was a horrible person. he told his grandparents stories about me which they chose to believe. It made everything worse. It wasn't until he began to get really bad and I simply could not deal with the verbal abuse he regularly unleashed on me, that he also began to do the same to his grandparents. It took years but they finally are starting to understand the depths of hell I live everyday. I miss the little boy who was so curious about the world. I miss the little boy who would be so excited to go to the zoo or spend an afternoon playing in the pool. I miss the adolescent who seemed to have the world at his feet because he simply understood math beyond his years. Most of all I miss seeing him smile and actually seem to be happy. These days he is sullen. Everything is a complaint. He never "feels" well. Everything is a result of something someone else has done to him. He is either Superman and knows more than anyone else or he is despondent. He tries to say the most hurtful things he can to those whom he is supposed to love. He lies about taking his medicine. He will claim that he has a perfect memory and that others are lying because they don't remember the things he remembers. He is easily offended, so even when someone tries to befriend him, he believes that they are insulting him in some way. I have to make up excuses so that when he is calling me more than 50 times in less than an hour, I won't appear to be distracted while I am working. Meanwhile, I don't know if he is going to do something very drastic or realize that he must take his medicine so that the demons will subside. There is no one I can talk to about the horrors of watching someone you love, whom you held in your arms as a baby, sink into an abyss which he seems to want to drag everyone around him, into. I don't know how much longer I can continue to keep a positive outlook for the sake of my other children, my husband and those close to me, as he chips away at every relationship he has, including with me. I fear that he will succumb to those demons which have taken over his mind. I know my little boy is in there. I want him back. It just isn't fair. I tell no one outside of our family because I don't want to lose the last chance he may have at some sense of normalcy in the way he is treated and viewed by others. This is hard to do unless you are somewhat isolated, which we are. We keep people at arms length. Mental illness is just too scary for most people. There are days when I want to shout from the rooftops about his struggles and how it hurts all of us but it would only cause people to move further away, when what I really wish I could have is a legion of people willing to encourage him to stay on his meds and let him know that they see that incredible little boy who is still there. It has been a rough day. Sorry. I just need to tell someone about this hurt before it consumes me. I hate this awful disease.
  26. Judy L.'s avatar
    Judy L.
    | Permalink
    As my son got older he became less scary and agitated. He lives with me and spends almost all of his time in his room, except he occasionally goes out at night. He is afraid the neighbors will see him. He is now 40 years old, won't take meds, is obese because he gets no exercise staying in his room. I've been thru the typical son-with-schizophrenia hellish life. Now I'm almost 70, and have health problems. I worry about what will happen to him when I can't take care of him anymore. I had a "special needs trust" made to take care of him, but the contract says that the trust company (which will get everything I own when I become incapacitated or die) is NOT LEGALLY REQUIRED to do ANYTHING for my son. It says they "may" give him money to live on, but they don't have to. They "may" arrange for a "care manager" for him, but they don't have to. The trust company "may" let him remain in the house, and "may" maintain the house for him, or they can sell it, or even give it away to anyone they choose. They can put my son out on the street if they want to. The lawyer says, "But, they have a "fiduciary responsibility" --- two meaningless words that are never mentioned in the contract. They are not legally required to do their "fiduciary responsibility." Also, if anyone tries to contest the actions of the trust company, the beneficiary (my son) will not receive anything. The trust company will keep everything until my son and I are dead and then the money will go to the person I named in my will. This Special Needs Trust horrifies me, but I can't find any other options.
  27. Wanda allred's avatar
    Wanda allred
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    Drove five hours to let my 36 yr old schizophrenic son into his apartment after he was transported back to his rural community after being released from a psychiatric hospital he had been admitted to two months ago after stopping his meds. He is confused and paranoid and doesn't know what is real.I
    Have to go back to work five hours away. The county has him on a wait list for a foster home. It is heart wrenching, I feel like I may never see him alive again.
  28. Paul's avatar
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    I am the primary caregiver for my 29 year old son who suffers from paranoid schizophrenia. On March 18, 2016, he made 4 deep cuts across his wrists. I heard screaming from the next room and cautiously came in. There were two pools of blood under his desk where his hands were hidden. Fortunately I saw a pool of blood on the desk. (The room was dark as he never wants lights on because of the voices)
    The medics and police arrived in time and he was Baker Acted into a downtown hospital in Jacksonville, FL.
    5 days later we received a call saying he was discharged from the hospital. My wife works full time and I could not make the 2 hour drive immediately. I was stunned that someone with 21 stitches in his wrists was forced out of the hospital and the head of Psychiatry said as far as he could see, N. was OK. I have a DRAFT letter to go to the hospital and doctor who released him. I explained he was still a danger to himself and to others. An ambulance dropped him off at home around 10PM that night. Just one event in a caregivers life. My son was diagnosed at 15 and is not 29. Someone who has actually tried to commit suicide is far more likely to do it again. You can only imagine what this does to the caregiver. Paul
  29. Lexi's avatar
    | Permalink
    MOMS - Please come follow my blog! I am trying to start a campaign to get more people interested in helping children with mental illnesses. We need raise awareness. We need support. We need the rules re-written when it comes to KNOWING OUR CHILDREN and knowing when they need to be admitted, and when they need true help.
    My brother was recently committed by police on a 5250 hold, and treated for Schizophrenia and Bipolar. It took not once but TWICE at the hospital on a hold for the mental ward to recognize that he needed HELP even though he was begging and pleading them to HELP HIM.
    He is (like many comments I just read) a master manipulator. No one believes the struggle we go through.
    We have to UNITE and we have to stand TOGETHER as a family and raise awareness for this and BE HEARD.
    PLEASE PLEASE PLEASE email me @ mimomsunite@gmail.com
    and Please don't be discouraged by the blog, I just started it this morning.
    PLEASE lets share our stories and figure something out!!


  30. Sherry's avatar
    | Permalink
    My 42 yr old son has had schizophrenia since 16. Eldest of 7 children. Been hospitalized countless times with group homes as well. Medicated with Clozapine for 12 years. Still doesn't clear voices. I'm an R.N. It doesn't get easier, but you can survive this. You must not let mental illness steal your own life too. It took years for my husband and I to have a team effort towards him. It often falls on one person to drive the dark streets and sit in the padded treatment rooms. I have plans to write our story. It is an incredible tribute of courage and tenacity, on all our parts. I love my son more tonight than I did the day he was born.
  31. Rio's avatar
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    My daughter is 17 and has severe paranoid schizophrenia. (Along with my 15 year old son who is bi polar) the job is endless. She can never sleep because of the voices and nightmares. And he can never sleep because of the mania (a symptom of bi polar.) not only can neither of them sleep, they can't be up alone. If they're up, I'm up because I can't trust them. The last time I went to bed I woke up to my daughter trying to climb up to the nieghbors house and spy on them because she thinks they're plotting to kill her and they're sending their 8 year old son to spy on her. They're both been hospitalized many times and meds are almost useless. The episodes of their illnesses can last days or weeks. There is almost never a break in the storm. And even though I am about ready to rip my hair out, at the end of the day, I love them. Because they're my kids. They had this illness since before they came out of my stomach. And think about it... How would u react if u heard voices every day telling you people are watching u or if u had sever mood swings every day? Id be freaking out too. And I would want help love and understating too. I love them and I will continue to fight till I'm dead and gone ❤️❤️❤️
  32. cheryl's avatar
    | Permalink
    My son was diagnosed January 2015 with paranoid schizophrenia he is 29 and i need help badly he keeps wanting not to take his meds this is the 4th time he's been put on something different to take, he is on abilify and not wanting to take it he then gives me a lecture of how this medicine will kill him and would i rather he stay on it or see him dead! And the he calls me evil cause i want him to stay on his meds! I can't take it anymore my only other support is my daughter who thinks its okay for him to be off his meds (i should let him do his thing) she says; and they both been reading up on schizophrenia so now they are experts, well if that be the case why when he plays doctor with himself does he go back to hearing voices and looks panicky and lies thru his teeth to the doctor about how he is doing! The rest of my family is afraid of him so i have no support at all and I am 56 yrs old and fighting a disability case for myself due to my health and PTSD that i suffer with, and also trying to get him on SSI, he won't go out of the house and he won't try to work, he has been hospitalized twice both times under a Mental Hygiene Order that i filed on him so that he would not walk out like he did twice when he volunteered to go in. I been researching till i am blue in the face and cannot get the help that he really needs, i love him but enough is enough, i need to find a group home or something for him and i cant seem to find one in this area that i live. I have not called NAMI but was told to go ahead and call them but if there is nothing in this area then what do i do, my older daughter is supporting us both right now but my god how long does it take to get actual help! So that we can all breath and know that he's going to be okay!i have nightmares of waking up finding him gone, he has dreams of the end of the world. Can somebody please tell me that there is hope and what and who do i need to speak with to get the proper help! Now also we are poor we have medicaid for insurance. I need tomfind a group home that will help him get on his feet again or a caseworker even to come on a daily basis and a councilor for him tomtalk with, he has no friends at all. I'm thinking if i can get him more involved with life again it will help him a great deal. At least I hope so. I love my son he is my last born out of 4 children and my best friend as well but i am at my wits end inntrying tonfind help here for him. Hear is in the State of West Virginia which our mental health org, really does not provide much help at all. He heeds help!
  33. Heather's avatar
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    My son was diagnosed with paranoid schizophrenia just this past February, although I knew for some time now he had a mental illness. He is now 19 about to be 20, it's been a nightmare trying to get him to see someone for an evaluation. I called every where, hospitals, police, mental health, and searched the internet high and low for some sort of direction. In February his psychosis was so severe head grab his head with both hands screaming " I just want to blow my brains out " it was horrifying to watch. Prior to this he could somewhat control it in front of medical professionals, he was what I'd call a master manipulator. I know it sounds horrible but I was so relieved when he had this breakdown, finally someone will see what we were going through, someone would BELIEVE me so I could get him some help. Its been several months since then, lots of tears, stress, feeling helpless thinking he will forever be like this and I will be caring for an adult child for the rest of my life. Believe it or not he's gotten better, we just recently took him off the depakote he seems to focus better without it but he still needs the zyprexa, otherwise it sends him back to severe paranoia, seeing things, hearing voices, thinks everyone is out to get him. He may not be the the so called "normal" but I am thankful for the progress he's made. So please don't give up, don't stop showing them love, they don't know what they are doing or saying and it's not THIER fault. The other day my son told me he was proud of me for being such a good mom to him. I cried, not bc I was happy but bc I thought it was all my fault, I did something to cause his mental illness and he thanking me.
  34. Beth's avatar
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    I too have a son that was diagnosed with paranoid schizophrenia. It has been roughly 12 years now. I love and protected him so much. People can be very cruel. I love my so and I will do anything possible to get him somewhat back on track. Its been a long haul but Ill never give up on him because of his Mental Illness
  35. Linda's avatar
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    To: Sally dated april 7, 2015. You just told my story. I'm doing this alone. No resources, no doctor as of yet. My son calls the police on me if things don't go his way. Berates me, says the most awful things to me, is jealous, manipulative, forceful, domineering, frightened out of his wits and it's 24/7 !!! Iv'e eaten 20blbs back on my frame and want to crawl in a hole and die!!! He's not human at the moment. Can't go outside, thinks people are going to kill him and has no concept of time, deadlines or personal care. Left to his own devices he is on the streets, literally. He's had to see people be stabbed and mistreated and wake up on the pavement. He has no friends, at 29 years old, has not one friend. I'm at a loss as to why the powers that be, and they are clamping down on us normal citizens, won't take him in for some sort of evaluation. He needs a residential program. WHY NO HELP?! We are poor. People will see to it a dog in a sports shirt gets more help than our people! Justice please, compassion and some help. Why are street drugs so popular? Why do people drink themselves to death? NO COMPASSION IN THE MEDICAL COMMUNITY! The Feds are taking away all manner of basic meds to assist the living and grandma now has to go to the streets to get relief...When drugs are outlawed, only outlaws will have drugs...shame on you USA. SHAME
  36. Holly Stevens's avatar
    Holly Stevens
    | Permalink
    My son is nineteen and newly diagnosed with paranoid schizophrenia, although I've known for a while. I have researched to the end of the internet and back, yet nothing I seem to do helps. We are trying a new medication tonight and I pray this one will help. The last one didn't. I feel like I am losing my mind because I am with him all of the time. It's hard to explain but I have to stay with him or he will go back to his old ways. I've never taken medicine for depression but I feel so depressed at times that I just sit and cry. And then I feel better, until the next meltdown. I felt like I wrote Morning Zen. I cried from beginning to end. My family, who has always been there for me, doesn't reach out anymore and I am so angry with them. How could they leave me now?
  37. Scott's avatar
    | Permalink
    Here is a link to the NAMI support page - http://www.nami.org/Find-Support
  38. Vanessa's avatar
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    Diane, NAMI hears you. Find your local organization.
  39. Sally's avatar
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    My son has schizophrenia and is 32 years old. I have fought and fought for years to get him the best help. My son is very mean and rude to me. He calls me terrible names, cruses at me, manipulates me at every opportunity. I am exhausted from it all. I am 62 years old. How can I continue to allow myself to be emotionally abused just because he is labeled mentally ill. I am so tired!
  40. Leslie Walsh's avatar
    Leslie Walsh
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    I just had to get my son committed again. I have been caring for him on my own since he was sixteen, and he is thirty-two. I feel so much grief and have had so little support from family, and none from his father. I feel like I tried to be a good caregiver and failed. I think I suffered burnout. He has been hospitalized before, and I never felt like this until now.
  41. Veronica's avatar
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    I'm desperate to my 19 year old daughter help. She was away at college & suffered a breakdown during her second semester. She was hospitalized for 7 days & has refused help for the last few months. When she does share her delusions with me, it takes everything in me not to cry. She's also now stalking a man that she believes got her pregnant telepathically. I'm afraid she may end up in jail. She's getting worse by the second. I'm terrified! How can I help her when she refuses to see a doctor?
  42. Debra MAYNE's avatar
    Debra MAYNE
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    I also have a son age 38 who was diagnosed an has this disease of schizophrenia.its so hRd he was going GREAT an now he will not take his medicine.my other sons wife is scared of him.he was staying with his older brother but we are now taking him back to FLORIDA with us. Just now learning myself ABOUT your groups.I need to KNOW all I can
  43. Diane's avatar
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    I love my son, who is mentally ill., but want to change the laws on forming and getting him the right help. Who,s out there and hears me?
  44. debra's avatar
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    I just ate a piece of pie and a bowl of icecream....I don't know why, because I will have a stomach ache. I started experiencing problems since my son was diagnosed with schizophrenia at 19.

    He's 26 now, and it is a very, very lonely life and I will never know how many times my heart has ached for him.....many, many nights though out the years.

    My son is lucky - he has two brothers who live with him and love him,keep him busy. I'm around the corner. I barely can keep up with the day to day monitoring (bringing groceries, making food to "drop by", ect..).

    I have found for us the most important warning signs of impending psychosis shows in my son's eyes....I then know he needs help.

    I take care of my 80 year old parents; between all three it is a full-time job. It is a cruel world. Sometimes I keep so busy I find myself not able to do anything for a day or two....then I bounce back....it is so, so hard. But we love him, what else do you do if you love someone?

    I don't have much in the way of resources, but I do know I couldn't live with myself if I didn't do what feels right. It is a hard thing to have a child with schizophrenia.
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