I don't know what I am doing

He’s 22 and a shell of himself. Was diagnosed and hates me for taking him. He stopped going and does not like how he feels on medication. Is self isolating but accepts the food I bring to his door. He puts a hand over his face so I can’t see him and visa versa. He has his phone and computer. Stays up late so he can avoid us He believes he is a profit, that end of the world is coming… My advisor told me about HALT- hungry, angry, lonely, tired. I feed him and if I didn’t he wouldn’t come out of his room to eat until everyone is in bed. Angry, I trigger this: lonely, he only talks on computer games. Tired- he sleeps a lot. He has lost interest in everything outside of his room I am seeking help on how to find my son again- or is that unrealistic of me?

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Hello @TiredMom1 and welcome. I am sorry that you need to be here but am glad that you found us.

I was in your position from early 2016 to late 2018, My daughter changed gradually and became lost to herself and to me: a hermit, rarely sleeping, screaming all night long to the voices haunting her, avoiding me and her step-father, rarely going out, not eating. I read the book by Dr. Amador “I’m not Sick, I Don’t Need Help” and tried to apply his LEAP method (Listen Empathize Agree Partner). I joined NAMI and did the 12 week Parent to Parent Class, and went to weekly support group meetings. I did what you are doing, mourned the old her, tried to communicate, and brought her food, which sometimes she wouldn’t open the door to take from me. For 3 years she refused medication unless forced on her by involuntary hospital holds, and stopped meds as soon as she got home. In Dec 2018, after an arrest (I asked the judge for help to get her medicated) she was put on a monthly injection which changed everything. Now, after stability on meds, and gradual monthly improvements, she has held a good job for over a year, is a new her, and an enjoyable person again.

Nightly, I thank God and everyone who helped by posting on this forum for making me strong enough to fight for my daughter during the hell years. You may be able to help your son to a new life for him, a new him. He probably won’t ever be the same old person he was, but a new life IS possible. Severe mental illness robs everyone of the life they used to have. It is an awful, terrible struggle to make it out of the black hole, and family is deeply affected.

I suggest you read Dr. Amador’s book, join NAMI if possible, and be happy for small victories. Remember, you DIDN’T cause this. After my daughter started accepting dinner regularly, I started asking her if she would go walk the dogs with me. She always said no, but then one night said yes, so our routine became dinner and a dog walk. Then it became dinner, a dog walk and watching a TV show together nightly. Slowly I got improvement. After the injections started in Dec 2019, slowly she returned to our world, and slowly became a lovely person again. I STILL have a voice message saved on my phone from 3 years ago, when she laughed for the first time in ages. We still eat dinner, walk the dog, and watch TV nightly, among other activities now. Once I won a victory, I kept in the routine.

It is possible for you to help your son, how far he can go, no one knows, but you must keep trying for small improvements every day. I know that only the injection saved my daughter from her inner war. Good luck to you. Please keep coming here to learn how to use the site and read how others are helping their loved ones and themselves. You will get valuable tips and feel friendship and compassion.

You DO know what you are doing, trying to help your son, keep doing that, and keep hoping.

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Oldladyblue thank you so much for sharing your story with me. I will follow your tips. You have given
me hope. Hugs!!

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Hugs back to you @TiredMom1 . It gave me goose bumps to know that I have given you hope. Hope is the one thing that keeps all of us going in this battle, yet sometimes it seems so fragile. It must be kept alive. Remember, you can always post on this site or lurk and read to find some other tips as well as solace when you need it. I came here often in my greatest days of sorrow, and still come here to share my heart with everyone here who is struggling.

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There is hope, I’ve been where you are. The road is long and seems slow. Your hope will drive you to not give up. My hope came from someone called ron coleman, when i attended a talk he was doing about his journey through schizophrenia and talking about recovery. Recovery does not mean cure, but in a far better place than your son is right now. My son seemed to make 2 steps forwards then one step back… a blip. When you see this happening with your son, try to think positive, he might make one step back but he has still gained a forward step and all these steps add up. They say those who have family support have better outcomes, i think this is true. It a,so takes time

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I think the families can have better outcomes for themselves when they show support to their family members who are neurodiverse/schizophrenia.

Not sure where I originally saw this quote, its one I keep jotted down in my phone notes.

"With sympathy, schizophrenia is a personal tragedy. Without sympathy, it becomes a family calamity.

As Grohol said (and this is a partial quote) "Embrace them for who they are - normal human beings experiencing a difficult time, who need your open mind, caring attitude, and helpful support.

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Thank you for responding. Very wise advice.

I’ve doing this since 1996 so have a good idea how to help my son. Of course there are better outcomes for the family if they support their relative. Sadly not all get this support, as i have witnessed first hand. I also agree with treating the person as a normal human being, as i have told my son many times… he is normal and how he reacts to his symptoms is normal. No different than any normal person would react. But all of this takes time, and those supporting gaining experience and an understanding of this illness, minus the stigma.

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@sasone2one , gosh I hope you realize I was supporting your statement.

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I believe everyone’s heart is in the right place and that we all have something in common, we love our kids, we are tired, are pretty selfless, have learned a lot and continue to learn daily. Thank you all for the support! I appreciate you all!

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Sounds like his meds haven’t kicked in. I have been going thru this for 8 years. My son is now 32 diagnosed at 24 after college . He told me these are the best meds he has been on- haldol after about 5 other med fails. At least now he can rebuild…

I am glad your son is doing better @Jeannet . Haldol is an old time drug, it’s been around with successful use for decades. The Haldol Dec Shot is the injection that worked for my daughter, she wouldn’t stay on the pills. Haldol doesn’t work for everyone, unfortunately, but when it does work, it seems to work well. Not everyone needs meds to do better in life, sometimes that is the best way, if they can find a way to cope without meds.

Thank you! Some days it seems like none understands.

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Good morning Jeannet. If you don’t converse with people who provide care for a mentally or physically disabled child, they simply can’t understand.

If someone I love and/or have known a long time asks me about my son. I’ll start by asking, “Do you have experience or understanding of bi-polar, schizo-affective, or schizophrenia disorders?”

Sometimes they admit ‘No, I’m clueless’.

Sometimes the clueless ones try to pretend: ‘not really but I know it’s tough…’ or ‘I saw a movie that referenced it…’.

And every once in awhile someone will say ‘Yes, my sister had/has it’ or some other actual connection.

IMHO, save your sharing with those that have walked it. Otherwise, it’s polite smiles and well intended platitudes. Typically with something stupid thrown in like: “Have you seen a specialist?” Or “Don’t they make drugs that fix it?” Or “Is he dangerous?” (selfish fear).

This forum is a safe haven for those of us living the daily shitshow of caring for and loving someone with Schizophrenia. It was not chosen. It is not easy. But together, we make it. And I believe we are better people - kinder, more compassionate and empathetic- because of it.

P.S. and welcome to the Family @TiredMom1

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Thanks Sando.

I talked with our family doctor today and we scheduled a Physical for him. He is hopeful based on their relationship that my son will open up with him about what is happening. So far he refuses to take medicine. “He does not have a problem, we do.” We shall see, would like him to take a monthly shot. Fingers crossed. Peace!!

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You came to the right place!

That’s what my son says: “you two have a lot of problems”! His problem is ‘us’: mom and dad!
He blames me for taking him to the hospital the first time about 29 years ago! It has to be somebody’s else’s fault! He’s been resistant to the meds all this time but he has to have a shot otherwise he won’t take the pills. He tends to do the same as your son, isolates himself, he doesn’t want to go anywhere right now he doesn’t sleep at all at night, some during the day; unmedicated he’s energetic but unfocused. We take a day at a time.

My best wishes on that appointment. We hope the doctor wins him over and your son opens up.

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I read this and almost cried. My son is 21 and blames me for taking him to the hospital and that’s what caused his illness. The medications they gave him is what changed him. It’s the worst delusion I feel. It has turned him against me and he does not want anything to do with me. I am all he has. I’ve been praying that this very thought goes away. Twenty nine years later your son is still saying the same thing. I can’t deal with him blaming me all his life.

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@Ihavethevictory Hi sakahi1, While many of us have things in common with each other, our experiences and results with our family members are also different. Forgive me if you have already said so, have you had time to read Dr Amador’s book and learn the LEAP technique of communication?

My son had turned away from me until I began using LEAP. Learning to trust me again didn’t happen overnight, even though our communications got better right away.

Blaming you is a delusion, I know that its difficult to not become emotional at such times. It helped me to deal with my son by acting as though I was a paid caregiver in a nursing home and he was one of my patients. I treated him politely and calmly while showing him respect. His grandparents were in a nursing home at that time and I was seeing a lot of examples of professionals dealing with people who had dementia.

Its tricky because we all have to figure out the way forward that will work for us and our family member. I know it felt to me as though the path forward was a big puzzle that had to be solved.

We can’t let their delusions become our reality.

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Very well said. Thank you. We are human and not all of us learn at the same pace and our circumstances differ in some ways; I have some friends whose sons had mental health issues many years after my son and they’re much younger, one of them learned very quickly to stay on his meds, the other one was very resistant but it got to the point that the doctor told him there wasn’t much he could do for him and he offered him ECT.
They’re in another State.

Hugs to you and your son.

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This is great advice. I’ll also add that self care is critical and detaching from your son’s delusion will help you cope. And then you will ultimately be better able to support him. It took me a long time to learn this.

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