Family and Caregiver Schizophrenia Discussion Forum

I’m seeking advice

I have been hesitant to post because I don’t know how to begin. The story is so long, but the story isn’t really the point here.

I simply need help reaching out to my husbands schizophrenic son. I don’t want to make things worse, but I want more than anything to help. To let him know we love him.

The story of his descent into illness is long and sad, as I’m sure most are.

I’ve been with my husband for nearly 2 years and never met his son in real life, but we talk online a lot. Lately he’s been opening up to me a little and I want to keep communication going. Ultimately I’d love to help him find his way back to reality, maybe even help him find his way to God.

Is it best to be open and honest about his illness? Is it best to address his schizophrenia with him? Or should I continue to “tip toe” around the topic?

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If he’s opening up, let him be the one doing the talking. I think it’s better to dip a toe in here and there and try not to be judgmental or preachy. While it is quietly lonely to have SZ related illnesses, we often find it very hard to trust people-- however well intentioned they appear.

Listen more than talk. Empathize and try to understand, rather than try to “coach” him on what “reality” really is. Try talking about feelings rather than “facts”. You are much less likely to get into arguments that way, as there’s no arguing about how things make you feel.

Once you build trust you can move on to more frank discussion. Recovery is a ultra marathon that takes years and years and years. Getting too eager and trying to sprint when you haven’t laid a firm foundation of trust, and buy in from your husband’s son, isn’t likely to go very well. Ultimately he’s the one who does the recovering. Try as you may, you can’t do it for him.

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I agree wholeheartedly with @Maggotbrane! @KCJones, I suggest going to the website leapinstitute.org. You are actually already using part of the LEAP strategy by LISTENING and possibly also in EMPATHIZING. You have gained his trust to some extent at least, which is huge.

Learn as much as you can about SZ. Go to NAMI.org for info and resources, and for a no cost class and support group also NAMI), if offered in your area. Read posts on this site which cover so many differing situation. Recognize that each person is different. Once you learn and understand a little bit more about this illnesss, you will gain a better idea how to try to help him.

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How old is the boy???

@Maggotbrane and @hope4us thank you so much.

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He’s 24

He spent a couple years homeless in LA before returning home and beginning the “treatment process”. There were times we didn’t hear from him for months.

sure engage him as a listener, buy him ice cream if you ever meet, works every time… if he knows he is sick, your best role is a reminder to him to see docs and take meds and say someday there might be a cure… the god thing might not be a good idea… my god thing was a nightmare… they take directions from god and you might be a sinner…

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Some other things to consider beyond drugs:

If possible, see if you can find something to occupy his mind. If employment isn’t a possibility, then hobbies or volunteer work. Employment is commonly cited as a helpful by highly functioning people with SZ.

I think there’s some truth to the initial name for schizophrenia being “dementia praecox” or early dementia. There’s similar gradual deterioration of brain mass as in dementia, and similarly there’s a case for “use it or lose it” where this is concerned.

So I’d consider encouraging what we tell our elders to do to keep their brains more healthy. Work puzzles, exercise, learn new things, enroll in classes, finish college, actively participate in the world, engage with music and art etc.

I’m a bit of a rare case, but my whole professional career was after my diagnosis. Yet I kept busy. I took pottery classes, I learned to sing and act and kept myself engaged in the world-- and although I haven’t had any brain scans, I speculate that the mental stimulation had benefits by building neural connections-- perhaps routing around some brain deterioration from my first year of walking around unmedicated.

It sounds like he may be engaged in social media which is a start, but I’d strongly encourage engaging him IRL instead. My opinion is that many people with SZ live in impoverished mental environments which only furthers the brain deterioration. While it may be easier to sit at home and smoke, eat and watch TV or engage with computers or video games, I think there’s more benefit engaging with the world. He’ll probably suffer from avolition and other negative symptoms and the outside world may overstimulate him, but from my experience learning to live in the real world has tangible benefits for recovery.

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Just wondering if your usename indicates you are in or around Kansas City… if so, I can help you get connected with some resources.

This is really helpful advice. We are at this point with our son. He talks about getting a job and has taken some steps toward applying at a fast-food place, but I think this is hard for him. He DOES volunteer with something that he enjoys. I think connecting the dots and encouraging him, as well as a lot of patience on my part, will be what is needed.

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Is it okay to talk to him about the things his dad and I are planning and doing? We’re having the time of our lives right now and I want to share it with his son, but I don’t want him to feel neglected or sad that he can’t leave home (the other side of the country).

I am sad about the God thing because I have a very strong faith. I know, from first hand experience, He can do all things. But I totally understand, we’ve watched Joey struggle severely with delusions about god and it’s very scary.

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K (first initial), C (middle initial), Jones (maiden name)
It really is my name!

You are so intelligent! Perhaps you should write professionally on this topic! You have helped me tremendously. Did you see my question to GSSP? (Sorry I’m new to this, a rookie, who hasn’t grasped the ability to use the @ tool yet)

What are your thoughts on me sharing good news? Holiday plans? Will it make Joey feel neglected or left-out?

@KCJones I’m in the planning stages of something a little bigger than that. I’ll let people know when I launch the project.

Per your question, I think it’s fine to mention news and events as long as you and your husband agree about it. Per inviting to events, I recommend a low pressure approach. Along the lines of he’s welcome to come if he wants, but don’t be surprised if he declines or backs out at the last minute. Symptoms of SZ are unpredictable, so sometimes it’s hard for us to plan.

Take a look at these threads:

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You will receive a kind and soft place to land here at this site and valuable information. How very wonderful, generous and loving of you to want to help, to seek advice, and to offer your love to him. Thank you from a mom who values those that offer love and support.

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Only speaking from my own experience here (my mom, Aunt, and cousin), but one of the hardest things about schizophrenia is the lack of insight someone has into their own mental illness— In their mind, even when they are medicated and the symptoms have reduced— they are totally sane and we are the ones who don’t really know what is going on.

The only way I am able to have a relationship with my mom is by temporarily accepting her version of reality— if I push back she totally withdraws. In her mind she lives in a mental ward because she is there to pray for and help heal the patients— she is not a patient. She doesn’t take real pills, they are “water pills” so that the other patients don’t catch on. I understand that she needs to believe this— and so I just go along for the ride in order to have any kind of close contact.

I wouldn’t say anything, just treat him like he is normal and like you don’t know anything, the same way you might treat someone with any other kind of illness— it is their’s to disclose and I think this is one of the biggest gifts you can give to someone who often has many assumptions made about them…and over time it might lead to the kind of trust you are looking for.

Can I ask, does you husband know you are in contact?

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I think it depends on the person. I wouldn’t rub it in his face but start with sharing small things and find other ways to include him. I understand you wanting to bring God into his life, but your time would be better spent helping him gain recovery, and THEN sharing faith when his mind is functioning more normally. Faith frequently plays a part in delusions of persons with SZ.

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@seaflower Thanks for the insight!! Yes, my husband absolutely knows about everything I do. I’m a better communicator than he is… well lets just say, I’m a communicator! Whether or not anybody wants to communicate back to me is questionable. LOL

I’m so grateful for the responses I’m receiving here!

@hope4us thank you! My stepson does, or did, have delusions about God, and that was so sad for me to watch because Faith saved me, and I know in my heart it can save everyone. But I do understand and agree with what you’re saying. Does it seem strange that so many individuals who suffer with SZ have trouble with God? Does it seem like a common symptom?

I’ve never brought my faith up to my stepson, I just try to live by example. Maybe if he sees something in me that he likes he’ll try and figure out what it is. I actually feel this way about all people.

I don’t even think their delusions are all that much about “trouble with God”. It’s just their brain’s confusion of reality and it happens to be faith-based. That and the “chip planted in the brain”. I wonder why??

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