Family and Caregiver Schizophrenia Discussion Forum

Life at home with 19yr old "stable" schozophrenic

Thank you for being here , I have read several of the posts and I am so thankful people are sharing and talking here. I have my 19yr old son at home, his initial diagnosis, subsequent battle for treatment, hospitalizations and daily crying jags all around are over for now (hopefully for good) and things are mostly stable in the way that he is, in his words, 95% free from voices and hallucinations and is maintaining his meds. So now what? My expectation is that if you live in my house for free, you will, at the least, go to school, or work full time, or a combination thereof. However, in his case, that is adjusted to respect and responsibilities, meaning that you will contribute in a meaningful way, be it working part time, or less than part time, doing chores, helping to maintain the home, etc. The issue is, he won’t do it a lot of the time. He wants to know exactly what to do, I make a list like, do 1 load of laundry, take out trash, get mail. He walks past the trash the entire day, when I ask him to please do it, he says ‘I will’ and never does. Meantime though, he is not reporting any symptoms and plays video games, snap-chat with GF and whatever on his phone. He usually reports symptoms by saying his ‘head stuff’ is acting up.
So then I get annoyed and eventually angry. I can’t tell if this is an illness thing or just laziness, anxiety, depression ??? I refuse to believe that he is totally unable to contribute. But I have never parented a schizophrenic before. It’s my job to prepare him for the future, and I really believe I am not doing him any justice by letting him do absolutely nothing. Some days I want to send him someplace so he will learn that no one will give him a free ride, but I can’t just kick him out, he would be homeless. I don’t know what to do. I guess I am venting, so many have it so much worse. I AM so glad to have him home and safe and not in a psychosis.

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Welcome @TripleJ, and “welcome” to the so-called negative symptoms of schizophrenia. Not that they are at all welcome and that all the symptoms aren’t negative. It’s that symptoms are divided into “positive” symptoms that are additions to “normal” experience like hallucinations, delusional thoughts etc, and missing or “negative” things like avolition (lack of motivation), anhedonia (lack of enjoyment or pleasure in life), social withdrawal, flat affect (blank expression), poverty of speech and more.

These symptoms are more persistent and often not helped significantly with antipsychotic medications. There some newer medications like Vraylar and others that are supposedly helpful for these symptoms, but this is an often promised, but rarely realized goal of medication therapies with the exception of Clozapine. Antidepressant medications sometimes help with these symptoms, but aren’t always recommended with patients with a mixture of mood disorder symptoms, like myself, for fear of triggering manic episodes. In my case, I’ve had many years of psychotherapy, psychosocial and vocational therapies to help with my negative symptoms, but realistically these are often lifelong struggles. They seem in part personality changes, and learned experiences or adaptations to the experience of schizophrenia.

Some examples:

When you experience social stigma for whatever reasons, a natural response is to withdraw from people who seem to have issues with your behavior— past or present. When you are overwhelmed and overstimulated by your environment, a natural response is to attempt to control or limit your stimulation by staying in your room with drapes drawn and shut out the world. When you have trouble with cognition and organizing tasks, you may avoid new situations or challenges so as not to draw attention to these deficits for fear of demonstrating your failings to yourself and others. And on and on.

Things that helped me:

1.) An understanding, flexible and mildly stimulating workplace with opportunities for some social interaction, but not overwhelming interactions—especially with challenging and emotional people.

2.) Learning situations and social groups congruent with my interests. In my case, I started taking a group voice class which led to singing in a choir and then adult acting classes and then acting in plays and other stagecraft. Through these, I gradually increased my social confidence and thus grew a social circle.

3.) Being required to pay room and board or otherwise contribute to the household. While I very much resented it at the time, my mother required me to get a job and pay rent, even though my brother did not. While the rent somewhat delayed a transition to independent living, within a few years I had my own apartment and now own my own home. By contrast, my older brother with bipolar disorder absent these requirements lived with my parents for decades and when that situation became untenable, moved to a house owned by a trust.

4.) Psychotherapy is the final thing that helped me. Some consider this a waste of money for people with schizophrenia (SZ) and I don’t think it’s for everyone, but I feel some form of supportive individual or group talk therapy or cognitive behavioral therapy is necessary for learning coping mechanisms that give people with SZ the confidence to interact with the real world instead of staying home playing video games.

There’s a reason why people with SZ gravitate to online activities—it’s easier and the social stakes are not as high, while still allowing some objective measures of near-term achievements— be it high scores, “likes” or what have you. The real world is more subjective, complex and less immediate, but ultimately lastingly rewarding. To me the trick was to be gradually introduced to new “real world” experiences and slowly build on them— learning from both successes and failures, while trying not to compare or measure myself to other people. Your son has the advantage of youth. I struggled in my prodrome, dropped out of college at 25, became florid and then began recovery. When symptoms persist longer, there’s more maladaptions to unlearn and you always feel like you’re behind relative to your peers.

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This is truly invaluable. This is actually the first true description I have heard or read except for from my son , who is thankfully aware and vocal about symptoms, and a brief synopsis from a psychiatrist. You articulated it all so well.
I am glad to report that things are going better and so glad to read that your examples , they give me a small confidence boost for my actions. I have insisted that he ‘work’ from 12-4 each weekday, doing whatever chores are on his list. All chores are negotiable, and time of “shift” is negotiable, but the work is not. He has also driven twice now at his own behest, which he had stopped doing. It may be a honeymoon period , but he did admit that he feels a small sense of accomplishment being done when I come out of my office , and pleased knowing I wont be upset with him.
I am trying to learn and to be open minded, so that I can help him live well and achieve his dreams, I am going to suggest he discuss the negative symptoms with his psychiatrist and therapist so he can learn and get help from them. Thankfully, he has embraced talking to them for nearly a year now, surprised the hell out of me, considering his outright refusal for years.
You have an excellent manner and mind, I hope things are very well for you and appreciate your insights greatly.

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Welcome @TripleJ and thank you @Maggotbrane for your very clear post.

My daughter’s journey to a stable life and job from an almost 24/7 psychosis was done step by step after a successful medication was started. I tried to introduce only one new change at a time to her, so that only when that change was a regular action, did a new one get proposed. It started with simply getting her to open her door nightly to take dinner from me, to going for a walk with the dogs once a day, to getting a part time job (several, as she got fired from a few), to her now stable life.

I still think that introducing only one new change at a time is the best way to help her improve her life. Recently the daily walks expanded to a need for more exercise, which expanded to her joining the YMCA to walk on the treadmill, then going to an exercise class to “watch”, then joining a class twice weekly.

I still use the LEAP method from Dr. Amador to help add new ideas/behaviors. I found that book very useful and his method very workable. Good job for helping get your son to where he is now.

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Perhaps therapy can help him on being more active(think inactive is part of the disease) and coach him toward what he can do whether school or work. If there is a clubhouse international near you they offer program that helps folks be more active and gear up for work. We were lucky one was 5 miles away and our son resisted for year or so but then started attending and they helped him find work too. His dr and therapist were important in nudging him to the program.

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@TripleJ Your approach is spot on. It is completely reasonable AND helpful to your son that you expect him to contribute in some way given that he is 19 years old and living at home – adjusted for the fact that he is living with his diagnosis. It’s not uncommon for any teenager to prefer playing video games over chores. ha ha I’m glad that you have persisted, and happy to hear that he is engaging. While this condition is very challenging, it is much easier to manage when compliant with meds, and therefore becoming a responsible adult with a semblance of a balanced life is within reach. The symptoms of the condition do not simply go away, but the worst of it is kept at bay by the medication so that it doesn’t overwhelm the individual. Hopefully he recognizes that he feels better with the meds, despite side effects. Feeling that he is meeting expectations and that you are not upset with him is a good confidence builder and long may it continue that you have a good dialogue and can work it through together. Best wishes to you and your family.