Family and Caregiver Schizophrenia Discussion Forum

Life is not fair

I am feeling exhausted.
Once I had a healthy, social and smart brother. He got in his College dean list. He was working out everyday and got into his college football team.
Now, it’s been 4 months that I’m grieving for losing him. He is not here anymore, he lives in his own world. Not leaving the bedroom, not going out of the house. He does not talk with any of us. I miss him so much. He is not accepting to take medication, so I don’t know what else we can do.
I have done everything that I could for him. reading every book and scientific paper about this illness, making doctor appointments, try to use LEAP methods. But it seems nothing works
I feel so much pain, I did not expect this to happen in my life. I never knew even what is schizophrenia before this.
I’m just writing this here because I know that you are the only people who feel my pain.
Sometimes I just feel I want to die, I don’t want to see my baby brother like this.

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Hello there. I am so very sorry to hear about your brother. I fully understand your grief. Although his body is alive, his mind and spirit is completely altered. Please take care of yourself though. Go to a counselor and talk about your feelings. Things may improve in time and he may be able to live a meaningful life…likely different than the one he would have led if he hadn’t gotten sick but meaningful all the same. I do hope that he will agree to treatment and begin to improve soon.

My son was a 21 year old college student when he became ill. It took us awhile to figure out what was going on. He resisted treatment so I had to somewhat force it on him. He has been compliant with medication and that has been a blessing. Its been 4 years and he’s been stable. I am grateful for that and I hope the same for your family.

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Hi there,
My son was 18 and a half when he had his first break. He had anosognosia (still does) and refused medication, finally went on, went off, many hospitalizations. Now he is in a mental health court program and he is doing amazingly well. I see glimpses of my son, who we lost to this disease, coming back out of the darkness. It will never be the same but he’s alive and he’s medicated. He has a job, he’s learning to cook, he smiles, he’s happy. I’ve spent three years being very sad and depressed over his disease. It has taken a lot to get to the point where I can accept this and move forward with hope. You will get there too. My other son has had a very hard time with this. I think it is very hard for siblings because they have fewer people to talk to and understand their loss. I wish you could talk with each other! I can tell you that your brother needs you to be there and to help. Your parents need you too. And, you have to take care of yourself. My son went to counseling to help him understand his feelings of loss for his brother. I would encourage you to do the same. Don’t give up hope. It’s extremely difficult but it can get better.

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This horrific disease has sucked the life out of me too but i do what ever it takes to help my son in any way i can and continuously make him feel loved . 2 years ago i had a normal child and now at 21years he is so different but from time to time i get glimpses of my baby boy . hang in there , he needs you , one day at a time …

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Im so happy to hear your son is doing well , Do you mind me asking what you mean by stable ? is your son working ? studying ? or do you mean stable because he is out of hospital . I say my son is stable too but he is so isolated not working or studying and it hurts so much to watch him like that .

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Yes, I understand. Schizophrenia is a cruel disease and when it strikes most family members feel just as you do right now. I want to say that there is hope that he will find his way to the “new normal” that life is for a person with sz. March 2016 was when this horrible journey started for my then early 30’s daughter. Now 3.5 years later, through many twists and turns, the journey has us living our new life with me as caregiver, my daughter stably accepting medication, and my hope for a good future (though different from what I envisioned) alive.

I wish a fast journey for you and your brother through the maze of trying to sort out schizophrenia. Education on the disease and and grabbing opportunities as they come about are both key.

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He is working in our family business, living independently, driving and no longer has symptoms of psychosis. He does have negative symptoms though like social skills deficits and has some social anxiety. I mostly refer to his being stable meaning that he’s no longer actively psychotic.

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Thanks for you reply. Your words give me hope. I am so happy for you and your son.

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I’m happy for your son. Having a job is a big step.
It is really hard for siblings. I have taken care of my brother like a mother since he was born. I love him so much. That is why it is so hard for me.

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Good to hear that your son us stable now. I hope he gets better and better.

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It’s so good that your daughter is med compliant and stable. I wish her the best

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Thank you for your good wishes. It is so kind of you to wish us well while you are still suffering.

It was a miracle to me that separate forces in life came together to get my daughter out of psychosis and stable. The trip was over 3 years, many supplements, several natural doctors, 40 police visits to my home, 5 forced hospitalizations, 2 arrests, and at least 4 different anti-psychotic medications. Only court ordered meds after the 2nd arrest led to her recovery. The pain and agony almost ate me alive during the long journey. I had to learn to forgive myself for calling the police on her and finally OKing forced medication.

We just went on a week-long vacation to see my sister. It seems unbelievable that a paranoid schizophrenic could take plane trips, tourist attractions, busy restaurants and strange places to sleep without the slightest hesitation. She is soooo calm now compared to the almost 24/7 psychosis that went on for 2.5 years. This site and NAMI meetings made me strong and kept me strong. She was robbed of her prior life, suffered immensely while the psychosis ruled her life, but has now achieved a “new normal”. I am forever grateful to everyone who helped me through my tears, fears and uncertainties.

I truly hope the best for everyone. I hope a miracle happens for all currently suffering the ravages of sz.

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Meds is the key, to having some normal kind of life.
My son takes a shot once a month and therapy. Close to normal as it’s going to get…not what any of us wanted, but better then the way he was before.

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So sorry you’re going through this.
I’m not particularly religious but watching my son experience the onset of this disease convinced me that if there is a hell its here on earth seen in those suffering from this illness and the loved ones trying to help.
Reach out for counseling its what made my life livable in the beginning.
Educate yourself as much as possible.
There is hope that things will get better for your brother and you.

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Sigh. Chills. Yes.

Your words are so very correct.

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I wish I could hold you! We went through this. I would not be exaggerating to say that my other son and daughter have PTSD over the events of their brothers illness. People have walked in your footsteps and they have MADE IT AND THRIVED! Don’t feel that how you fee right now is the way it will be. My son has been catatonic, anorexic, cutting, he ran away and has been totally psychotic / dellusional. He has had severe symptoms and now he has zero positive symptoms and some negative symptoms. He has insight into his illness, he takes his meds, he has a sense of humor and is a joy to live with. How did we get here - one day at a time, but in general, during a hospitalization he was court ordered meds. He was court ordered sent from our local hospital to a state hospital. I felt like you - like I couldn’t live and I couldn’t die. But those events, even though they were so scary, guided us to a path or people who had experience with patients such as him, and through trial and error to medications that helped a little, medications that worked for awhile, and medications that helped but had side effects to the point where he currently is - one second generation antipsychotic and Prozac. The knowledge that you are gaining through your research WILL HELP YOU BOTH, but it might not be as fast or in the way you had hoped all the time. We have to release ourselves of the fallacy that we know why we are here, what comprises a “good” life, and the belief that what we think we want is the best way for our lives to unfold. You are loved, you are prayed for, and you are strong enough - and sometimes just enough. At the same time, if there are loving parents I think the siblings need to, as much as possible, continue on with their lives and should not bear a heavy burden if possible. It is grief - you will feel like he has died but you will not get the community support that you would get had he died. Not only that, but people will shy away, stay away - it is like he died AND your friends and relatives not only don’t offer their support to you as a grieving sister, they may actually stay away because they don’t know what to do. It is a tough set of circumstances. I will pray for your family. Just keep loving him. Don’t let fear spiral into anger or frustration. Just love him.

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I know it is hard, but please have hope. Seven months ago my 20 year old son was roaming around his college campus shirtless, shoeless, believing he was a shaman with the ability to create world peace. He was hospitalized and discharged to me in an unstable state. He refused to take medication from me because he believed I was trying to kill him and take away his abilities. I felt hopeless for him and suffered the loss I anticipated for our family.

But, slowly he has improved. We took baby steps with him. At first, he refused pills but agreed to take a monthly injection of invega sustenna. For some reason the shot was okay. He started out at 256mg which has very slowly been decreased to his current dosage of 78mg.

At first he was unable to communicate with anyone. He stared into space and slept most of the time. We slowly go him into therapy and began taking him anywhere and everywhere we could just to get him out around people. Today, he is more social but prefers to just spend time with family. He is living at home and attending community college. Yesterday he even said he was going to apply for a job. He still sleeps a ton :).

He is better than I ever expected him be 7 months ago.It has been the most challenging thing I have ever endured. The emotional pain has been almost unbearable at times, and I often didn’t know how I would make it through. But I have. I feel hopeful again and grateful that I was able to have the strength and courage be there for him and walk through this experience beside him.

Don’t give up hope. Your brother is there.

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My daughter is 31. She won all kinds of awards in high school and was accepted into George Mason’s Honors program. She tried to commit suicide a few weeks before she was to leave and life was never the same. She married her HS sweet heart at 18, who took her into a world of drugs. She evidently was treating herself with the drugs and was diagnosed with schizophrenia at age 20. She could no longer work and divorced her husband after one year, but kept going back to him for the next 8 years. She is agreeable to her psychotic and depression drugs, but only on days she doesn’t use dxm found in an over the counter cough medicine. She goes in and out of mental hospitals I agree with you that life is not fair. Your brother is precious to you. Continue to reach out and he will open up. My daughter now considers me her best friend. The best thing I ever did was get counseling for myself. The second best thing I ever did for her and me was to move her into her own apartment. I visit her 2 - 3 times a week to make sure she has food and other things. Neither of our lives is perfect, but we survive and love each other. She just called and I’m off to play Parcheesi and spend the night with her. My heart goes out to you because this is just beginning for you. Please get counseling for yourself. I wish I had 13 years ago.

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I am so happy to hear this! I remember your posts from long ago and praying for you then! I am SO GLAD to hear this!

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At 21 - after a trip to Europe, our son did the same. A beautiful boy, alive and loved by many. Spiraled into complete isolation in his room for almost 6 months. Slowly, rage and false accusations built up over this period. In the end it was a yelling, punching hole in wall and running out of the house heading god knows where. Naively we called 911. He had his first and since then, only forced psych treatment center thanks to both myself and Nami assisting me in getting him where he needed to be. Unfortunately, this is the reality. You can only try to get him help, when he’s ready or forced help when he is in a state of agnosia (unaware of so called reality). Call Nami, get yourself educated. Education soothes our fears. Have a help list of numbers to call, your medical companies psychiatric emergency number etc. There is a mobile crisis number you can call that avoids all the unnecessary county bs. The sadness, the grief, is primarily a part of this dis-ease. Its best you see a therapist to guide you through all the confusion and bewilderment. A loving place in your heart will get you, your family and your brother to the next step and it will soon be good.

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