Family and Caregiver Schizophrenia Discussion Forum

Help! New diagnosis

My 28 year old son has been diagnosed with psychotic episodes and we are totally confused about what to do. We have suspected schizophrenia for several years now, but I guess it is too early to give a schizophrenia diagnosis because he has been very uncooperative about getting counseling and rarely speaks to us. The only reason he was diagnosed with psychosis is that he has been arrested 5 times for shoplifting in California. He graduated from college, but then more or less disappeared for 2+ years and was homeless. We live in Washington State and had searched for him in Cali for 2 years. We finally found him, but he had become a heroin addict and refused to come home. It was only after his last arrest that he agreed to come home about a year ago. His public defender is working on a mental health deferral since he was hallucinating in jail. He saw two court-appointed psychologists last week who both agreed he is psychotic. They did not tell him of his diagnosis and have told us to take tiny steps in telling him of his diagnosis. He has accused us of bringing him home in order to film a reality TV show without his knowledge to make money off of him. He refuses to talk with us at all. The closest I have come to talking about it is when I asked him is he was feeling ok because he seemed sad and withdrawn. He assured me he was fine, but will not look anybody in the eye on the rare occasions he will communicate at all. He stays in his room almost all of the time and has put cameras in his room to film it. What are we supposed to do? How do we tell him of his diagnosis? I am just lost and so very sad.

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Listen to them! They know far more about the disease than you do and are trying to help him. Unless he’s willing to accept the diagnosis there is no utility in him ‘knowing’. Odd are he has anasognosia (lack of awareness of disease) and would reject the diagnosis anyway. Frankly I don’t understand why caregivers are so fixated on diagnoses and telling sufferers about them especially when they don’t ask or are unwilling to listen. I was not given a diagnosis for over a year and I rejected it anyway. In fact I was the one who told my therapist a diagnosis and asked for a referral to a psychiatrist when I came to this conclusion and decided to seek anti-psychotic medication therapy. And especially nowadays with injectable medications that don’t require daily dosing.

Knowing about a disease does not treat disease. Compliance with treatment plans does. If you have a child too young to understand what disease is or why drugs work, do you wait until she’s old enough to understand to give say Tylenol to break her fever? Of course not! Same principal.

Depending on the state it’s possible they may get him into a court ordered treatment plan as part of his adjudication. Contact NAMI for advice on this, laws vary from state to state. The helpline is 800-950-NAMI (6264). In the meantime, don’t contradict things he says or try to convince him out of his delusions. It probably won’t work and cause him to further distrust you. And as you have started, educate yourself as much as you can. A local NAMI chapter would be a good place to start. The Family to Family program is considered excellent.

I also recommend watching the following video about anasognosia and methods to counter or work-around it. Others here will help you with support and if you are able to attend local NAMI meetings you will find support there. You are not alone. While the disease is difficult, it is treatable. Some, like myself, recover and live productive lives. But first steps are important, a gradual approach toward treatment compliance is often best.

Disclaimer: While I am a part-time caregiver of my brother and father with SMI, I was diagnosed with SZA over thirty years ago. I’m an advocate of appropriate drug treatments for SMI, but I feel they are incomplete treatments and additional CBT, supportive talk and psychosocial therapies are helpful where feasible. Any drug advice is from personal experience or research and not a substitute for qualified Psychiatric care.

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Thank you so much for your response. I am not in any great hurry to tell him. I just don’t know what to do to help him. Thank you for the link. I am currently reading Xavier Amador’s book, I Am Not Sick, I Don’t Need Help ! on the recommendation of his doctor. It seems to contain some very good advice, but what do you do when your loved one refuses to interact with you? He knows he is supposed to counselling but refuses to go.

Interaction starts with his survival basics and persistence: Shelter, food, transport, money, cigarettes etc are all opportunities for interaction. I’m sure in prison he learned he didn’t get anything without some degree of compliance or cooperation. Keep trying and keep lines of communication open, even if it seems one-way at first.

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Hello Jennyb and welcome to this forum. My life was turned around totally because of the help I found here on this forum, at NAMI’s family-to-family and support group meetings, and by learning and using the laws as appropriate. After my daughter’s 2nd arrest the judge ordered medication and that changed everything.

While my daughter was psychotic, she was a loner most of her day, staying in her room talking to her invisible “friends”. Change was made very, very slowly, one step at a time. Early on, noticing she wasn’t eating, for days, weeks, I knocked on her door at the same times to offer lunch or dinner, and was often refused. Finally she started opening the door to see what I had, and then it became a regular thing for her to take the food from me. Then I started asking her to go out for walks nightly with me and the dogs. It is something we still do nightly, years later.

I agree with @Maggotbrane that telling your son he has a diagnosis is not really important, especially if he has anosognosia. Some psychiatrists don’t even tell caregivers about, or acknowledge that anosognosia is a REAL situation. My daughter’s psychiatrist tried to tell her her diagnosis repeatedly. It didn’t really go well. My daughter ONLY takes her medicine because she believes it helps her to work (she used to get fired alot) not because she has sz. I had to find out what was THE thing she wanted most, and then get her to agree to keep taking medicine because it would get her what she wanted. Work was for her THE thing she wanted. But she was psychotic for years before being successfully medicated after an arrest and court ordered meds.

It will take patience and time to help your son. He can be helped. Make sure to take care of yourself too.

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Thank you for your reply. I can really relate to your daughter locking herself in her room all of the time. It is scary and with my son’s drug use I always worry that he may overdose. It just seems wrong to do nothing, but there is nothing to do.

My daughter was located in a homeless shelter recently after breaking contact with us two years ago. Although she was diagnosed with Schizophrenia 11 years ago she has made it through college and trained as a midwife. We are working on a plan to help her as she now believes she is adopted and more weird things. I highly recommend reading the book " I’m not sick, I don’t need help" or watching Xavier Amador’s Tedex talks, same title. It helps you with communication because getting stuck on a "diagnosis’ is sometimes counterproductive. Also take a NAMI “Family to Family” course. Try not to get stuck in a mind set that there is no hope for your son - with help most people with mental illness can reach “recovery not cure” and lead positive, successful lives. Take care of yourself so that you have a reserve of energy to help your son because it can be very draining especially for mothers.

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You dont, what does it matter? He has a good idea already, he shoots to escape and it works, if he refuses treatment, there is nothing you can do that will be effective unless you have a boat load money to spend and plenty of time on your hands for a new hobby…

Thank you. It is terrifying when your child disappears. I think it was the hardest time of my life. It helps to read of success stories. I am almost finished with the book you mentioned and am trying to get my husband to read it. He can be as stubborn as my son! LOL, My son has also said I am not his mom anymore, that I am a doppelganger. His whole life we have so close and never argued much. After starting on the book I am reestablishing that relationship, even though he rarely talks with me.

GSSP,
Thank you for saying that. I was worried that if I mentioned his use of drugs that people may be too judgemental about it. I see now that I shouldn’t worry about telling him of his diagnosis. And some people may think it is terrible, but I actually sympathize with his drug use. I can imagine that heroin can ease his mind, But I am terrified of an overdose or other health issues.

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been there done that with many ODs, makes the admins mad when I post real pics of my daughter ripped on H, fuck what people think, do what works for you…

3 months out of state in a dual purpose facility then shock treatment fixed my daughter.

My advice is to try and stay each day focusing on the positives. He’s back with you and so safe. Eventually he will get treatment even if its a rough ride to get there. Fathers tend to deal with the problems differently so work to get your husband working with you so that you don’t have arguments about how to help your son. And remember all the anger, rudeness, rejection that may come from your son is the illness, so work to not take it personally.

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Excellent advice here. Please seek knowledge through NAMI. It is the only place I know of that truly understands how to help people help themselves in this journey and to help them help their loved one.
Sign up for NAMI’s no cost 8 week Family to Family class (may be offered sporadically or not at all in your area but now, during Covid with using Zoom, you could take the Class from ANY location! Best thing we ever did. I especially like the class on Communication, which also makes a strong reference to the LEAP process explained in the book “I am Not Sick; I Don’t Need Help.” as well as a number of other strategies. If you look throughout this website, I have numerous postings on my story and this subject. There is hope, but you have to listen, learn, and do the hard work. It is SO worth doing this for someone you love.

I hear your pain and understand that the label is scary. It seems though that the label can be less scary than him living on the streets self medicating with heroin. Perhaps now they can get him on anti psychotics and stable then tackle addiction issues. I have been there with my college grad alcoholic “schizophrenic “. Forget the label embrace the help and take care of yourself-

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Great talk, more people should view this.

Thank you Maggotbrane.