Family and Caregiver Schizophrenia Discussion Forum

Three years later and still struggling; Ultimatum?

Here is what I wrote when he was 24. Now he is 27 and not a whole lot has changed:

*My 24 year old son wants to be an actor. He is angry that he is still living at home. I told him that he can move out but will need to support himself, probably with a full time job if he wants to move to Los Angeles. He says that he wants to work in a creative field but can’t find a job in anything that he is passionate about. ( He has applied for jobs that he is not qualified to do and others that are really competitive.) *
When I come home from work, my son starts to escalate and gets angry and irritable. He is not realistic that most people who want to be actors have to get full time jobs as waiters or in service jobs.

My 27 year old son still wants to be an actor or film maker. He moved down to LA for 6 months with us subsidizing his rent while he did Uber. He did not get along with roommates in three different situations. ( To be fair, some of them did seem difficult but in a roommate situation you have to learn to get along.) He moved back home when the landlord asked him to leave because he kept changing his mind about moving out.

He has saved up a few hundred dollars from Uber but spends money on cigarettes which he chain smokes, and pot. He says he wishes he could leave today and that he has enough money for a plane ticket to Europe. (No real insight on where he would stay or how he would pay for things when he is there.)

He is not interested in seeing a Psych Doctor. He talks to a therapist on the phone, but I don’t think he ever tells her about his anger, hearing voices, isolation and social anxiety. I guess the diagnosis does not matter at this point since he won’t agree to see a doctor.

Wish I knew how to encourage him to be more independent and take responsibility for his mental and physical health. (It scares me to see him chain smoke as my dad died of emphysema, but my son doesn’t like me to mention the cigarette smoking.) He desperately wants to move out but can’t earn enough doing Uber a few hours a day to make that possible.

Do you give your grown child an ultimatum and say," If you live at home you need to see a doctor or go to community mental health or else you need to move out?" What if the consequence is that he becomes homeless? Or do you tell him that he has to start paying rent (below market value) to encourage him to get a job. Again, if he won’t do it, do you let him become homelees?

many here do, I never have had to with my wife or daughter, both med resistant , ECT allowed my daughter some independence, apartment to share with BF, limited driving but will never be able to work, wife is pretty much completely gone, I get away on weekends to my second home… we all chain smoke, i supply the cigs for us all at $350 month lol

IMO you must plan for the worst, money dictates what you can do, buy him a house. condo, trailer, the harder you push the worse it can get as stress will drive him down, get him ssd/ssi to help, learn to accept what you cant change,

We were able to get our son to see a psychiatrist by using Dr Amador’s LEAP methods. Once communication lines were reopened, we found out he wanted to vacation in Colorado. We offered to pay for a trip to Colorado for him if he would see a psychiatrist regularly for one year.

There is another book with ideas about how to work the ultimatum process. “You Need Help” By Mark S. Komrad MD. We used this book after our son completed the year required to get the Colorado trip. We were not successful but other people say it worked for them.

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How long did your son be unmediated? My 17 years old son also refuse to take med. He has both auditory and visual hallucinations. He is trying hard to finish his senior year. He wants to go out of state for college to avoid push for medication.

Unfortunately there are no ‘right’ answers here. I know a few professional actors largely in theatre, a couple met with minor success and had roles in movies and Broadway shows you may have heard of. Based on their experiences, it’s not a profession I’d choose unless I loved it, had a decent second profession with health care and other benefits, and had a definite career plan with an exit strategy. That doesn’t describe your son. Without serious talent, work ethic and good (expensive) training and experience, it’s not going to happen for him— even then it’s a crap shoot, too many people who are talented, but not as lucky. The starving artist and waitressing ‘actress’ stereotypes persist because they are true.

My older alcoholic brother with seemingly unmedicated bipolar disorder has/had various grandiose ideas for employment. He’s worked from time and has an advanced degree, but he was always pursuing jobs beyond his reach and my parents persisted in supporting him even as he lost jobs and driving privileges and served some jail time due to his behaviors. As my parents aged and living with them became unmanageable due to his behavior and their advancing age, they moved out of a large house and bought a condo for themselves, and a small house for him. They employ him from time to time so he will get enough work credit for social security retirement benefits. He would never submit to applying for SSI disability benefits, I guess because it would require him to admit he’s disabled.

In contrast, I developed SZA while struggling through college. When I dropped out, I came back home to get treatment and was asked to get a job which I did and attended a local college. While I didn’t take medication initially, I did see a psychologist and was serious about therapy. During that time, my brother moved back home as well while working. After about a year I was asked to pay rent and my brother was not which I deeply resented as unfair and counter-productive because I was trying to save up for an apartment. I eventually moved out, advanced in my career and became self supporting. Along the way I started medication, because I feared I would become unemployable if I didn’t.

Two things were in my favor, I had insight into my illness and I was practical and persistent in achieving my goals. This isn’t to say I didn’t get help, but I think my parents didn’t do themselves or my brother any favors my coddling him and enabling his alcoholism. They kept defending their position by saying his situation was different because of his lack of insight and alcoholism and ‘bad luck’. They were concerned about moderating his behavior and keeping him out of jail and making sure he wasn’t homeless, but I see this as a missed opportunity. Their retirement and his life would have been better if they were somehow able to get him to address his diseases. These are tough choices and these are difficult diseases. Interventions and Ultimatums are blunt tools and are tough to back away from once you get started. I would be more inclined to employ LEAP and other similar strategies to help him to submit to treatment if not find insight and ratchet up pressures/incentives toward self sufficiency.

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My son continues to be unmedicated. He is now in his late 30’s. His form of scz is insidious (slow progressing). He was able to complete university, his illness really began hurting his ability to function in grad school. In his early 30’s he became fully disabled by the illness and he was finally diagnosed after using the LEAP method to get him to a psychiatrist. He is highly paranoid, has constant psychosis and persecutory delusions. In the beginning he had the occasional bad day, eventually, instead of having a couple of bad days a month, he now just has a couple of good days a month.

He learned CBT at the suggestion of his psychiatrist to help him deal with the people that are yelling at him constantly - he believes real people are the source of the voices. (He has anosognosia) It’s not unusual for a person who suffers from the highly paranoid version of scz to be more “higher functioning” BTW, only in our world here on this forum would my son be considered to be “higher functioning”.

Lack of insight can cycle just as scz itself cycles. Even so, according to Dr Torrey, only 30% of all folks with scz are on meds. If 60% have anosognosia, and 40% don’t have anosognosia, those statistics suggest its not that easy to get and keep anyone with scz on their meds.

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Thanks, MB. I am glad to hear that you were able to get treatment and were serious about therapy. I think my son might have SZA because he has disorganized thinking, occasional hallucinations and voices. He also has frequent mood swings. He is very smart and reads philosophy and Buddhist writings, although he takes everything very literally. At some point we might think about charging minimal rent and put it in a savings account for him. In the future, if he is unable to support himself we might think about buying a mobile home somewhere. We live in California which has some of the highest housing costs in the country, so buying a small home is out of the question. You are fortunate that you had insight into your illness and were persistent on taking steps to achieve your goals. You say you had insight into my illness. My son knows that his hallucinations are hallucinations and that the voices are not real though they are still disturbing. It is the anger that is so hard for him to control. He wants to have friends and relationships but remains frustrated that this has been so hard to attain.
Did you do a lot of therapy, CBT etc. Did you have symptoms like disorganized thinking, negative voices etc?
Were there medications you took that didn’t have terrible side effects? How do you get someone to address their disease if they are unwilling to go to a doctor, or get help with anger management.

Thanks for your thoughtful response. It is good to know there is hope, that some people with this illness can learn to cope and thrive and be independent.

Our son was medicated 5 years ago briefly when he was hospitalized and during one semester of college. He went off the medication towards the end of that semester and did not go back on. Perhaps you son can go to community college and he might try a semester to see if he can function before he goes off to a more expensive college. He could try living in a student apartment so he has some autonomy and if he fails then maybe he will consider the meds.

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Did the CBT help?
I did not know that SCZ progresses and gets worse. Is that always the case?
What is higher functioning? Does that mean able to hold down a job and live on his own or with a roommate. What does it mean that SZ cycles. Is that day to day, month to month or can their be cycling throughout the day. Thanks for your reply. Our son has not been diagnosed except for Pscyhosis NOS and has not been back to a Psych doc to get formal diagnosis 5 years later.

I have read Dr. Amador’s book a few years ago. Sounds like I need to reread it. Thanks for the info on the book"You Need Help." Our son wants to travel but I don’t think he has the patience to wait a whole year.
And we are not ready yet to give an ultimatum where the consequence is that he would be homeless.

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No, it does not always progress and get worse. There was a study that provided a nice set of graphs (I’ll try to look for the link) showing patterns of rapid vs. insidious onset and different recovery trajectories (only one of which was ongoing deterioration).

This is also a nice summary from the World Health Organization of the heterogeneity of outcomes (although not in graphic form).

https://www.enetmd.com/content/course-and-outcome-schizophrenia-and-their-prediction

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The CBT helped him immensely. His goal was to be able to grocery shop again so he could live away from us. He hadn’t grocery shopped for himself in several years, a therapist worked with him on CBT techniques to help him reach his goal.

Its interesting, they call scz and bipolar progressive brain disorders - meaning that they get worse. Scz tends to “lighten up” somewhat after about 25 years. I once asked my son’s doctor when they start counting the 25 years, during the prodromal stage or after it becomes active (acute) ? The psychiatrist I asked specialized in severe brain disorders, he responded with a smile and a shrug. A large percentage of folks do somewhat better once they reach the residual stage. There are so many presentations of schizophrenia, I think we can assume nothing is “always” the case. The hallmark of the disorder is hearing voices.

My son lives by himself. He works about 7-10 hours a month. His job is such that he can work when he is able. He receives ssi, ssdi, medicare and medicaid and SNAP. He can grocery shop and fixes very simple meals for himself. Usually sandwiches or eggs. Ovens are his downfall, he just can’t remember long enough to be able to use an oven.

His work is very important to him, its more about therapy and usefulness which is so important.

SCZ cycles in that there are times the symptoms are lighter and there are times that the symptoms are more severe. Some family members have described their lighter periods as the voices being quieter. My son has been stuck is an intense psychotic episode that lasted 6 weeks. That was not the norm for him.

I’m glad your son has insight, that helps a great deal.

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I just force my son to see therapist today. He denied that he has hallucinations but he did admitted that he has insomnia and stress from school. I booked an appointment with psychiatrist next month. I will suggest the doctor to prescribe him low dose of seroquel for sleep to start with.

Did your son has bad side effect from med so he went off from it?

Some thoughts: In most cases unless it’s a rapid cycling form of mood disorder, mood shifts would occur slowly—months or seasons between shifts, not hours or days. The mood swings may be depression instead. Anger is a symptom of depression for some men, myself included. Depression is often comorbid with SZ, I think because the symptoms aren’t a lot of fun, and isolate you from aspects of life that make it satisfying, such as relationships and friends.

He may still have SZA, and this is associated with better outcomes. I took philosophy in college and leaned on logic and epistemology to attempt to sort out my paranoia and delusions. I see his interest in Buddhist teachings as potentially helpful, as from what I know some of the thinking and philosophies seem compatible with behaviors and thinking that might lead toward recovery. Maybe you could put him in touch with a monk or other teacher who might be able to help him. I’ve had a little contact with some monks through a friend and they seemed fairly pragmatic and practical. As I recall there’s a sizable Buddhist community around LA and the Bay Area. They may be able to help him with controlling his anger or channeling it toward more productive measures. Religion can be tricky for people with mental illnesses, but my understanding of Buddhist philosophy indicates it might be more benign than many.

You don’t mention active paranoia or delusions, aside from possible delusions of grandeur or plain impracticality. This is less well. Paranoia is associated with better outcomes, as the higher executive functions and thinking seems to remain more intact in people with paranoia. My experience with ‘voices’ is nuanced and woven into my delusions. I have sensitive hearing and can sometimes overhear snatches of things that other people don’t and can sometimes intuit and predict things based on what I hear. Sort of like Radar O’Reilly on MASH. It’s a common enough occurrence that some people say it’s like I’m psychic. The trouble comes when I put to much stock in what I hear, get ahead of the facts or let disordered thinking direct inquiries into hypotheses. Over time I became convinced the FBI was following me and a speculative narrative of a male/female team of two agents following me emerged. At this time I was having regular sessions with a Jungian therapist twice a week. I eventually reasoned to myself that they weren’t real and I tried to give them up and focus on other issues I had, like needing friends and pursuing relationships.

While I haven’t had any formal CBT training, I did make up my own version that revolved around the scientific method with mantras like: ‘You don’t know that to be true’, ‘people are generally good, they don’t go out of their way to hurt people.’, ‘people have enough trouble focusing on their own problems to worry about you’, ‘you aren’t that important’. ‘Maybe people treat you suspiciously and don’t want to be your friend, because you act strangely’ and so on.

Per your son’s anger. I had similar issues. In my case it helped me to explore in therapy where it was coming from. Some of it was frustration. My life wasn’t going too well, and my symptoms were increasing isolating me and running counter to my goals. I felt people weren’t listening to me or were misinterpreting what I said. My inner life was very real to me and I felt that medication wouldn’t change that reality. My self esteem was poor, I felt like a failure and everyone was telling me everything I thought and did was wrong. I had trouble connecting with people from my old life, as the disease had changed me, but they were the same and wanted me to be my old self. And I was unprepared and confused about making new friends, it just sort of happened before and now I had to work at it.

I could go on, but in many ways I stumbled into a form of the LEAP process for myself. I had a therapist who listened and empathized with me, and even though the common wisdom that came out of the backlash against Freudian psychology was therapy was useless for people like me. We agreed things about goals and steps I could take to make friends and form relationships. I came to the realization that my disease ‘wanted’ me to be alone and isolated and giving into this was what was making me unhappy and angry, so I was motivated to follow through on our plans and try many things that were uncomfortable and hard for me, like learning to sing and act and getting up on a stage in front of people or going on my first date. While I already had a job, it was fulfilling and I had work friends and it was enabling me to afford to do these things. So when I realized that my symptoms and deteriorating condition might cause me to lose that job, I went back to see a different psychiatrist and started neuroleptic therapy.

I don’t like to give advice about drugs or give specific drug names, as I’m not qualified, everyone reacts differently to them, I haven’t taken them all and I don’t want to appear to endorse any particular one. Out of four drugs I’ve taken, I had a bad experience with only one. All have side-effects, but at the dosages I’ve taken, they have been relatively mild. Any effect on negative symptoms touted by manufacturers about newer atypicals are subtle to non-existent. I think you’d do just as well with some CBT and coaching on coping/symptom masking skills.

I am an advocate of minimalism where drugs are concerned. I think people get a little too tied up with perfect balances and cocktails and drugs to counteract the side effects of other drugs and supplements and on and on. It’s fine if nothing works, but there are going to be side effects, some worse than others. It takes some time to see if a drug is effective. Not all symptoms will be suppressed. You cannot and will not ‘fix’ anyone by pills alone. In my eyes, drug therapy is incomplete therapy. It’s like handing coffee to an alcoholic. All you get is a wide-awake and ‘dry’ drunk. Recovery is hard work, it takes years and years and is a life-long commitment. The ‘perfect’ pill or injection is one someone will take.

The main difference I see is on the newer drugs, you don’t feel as obviously medicated. I don’t necessarily think this is a good thing, since if you don’t feel it working with dystonia or other kvnethesic side effects, you might think it doesn’t do anything and stop taking it.

Per SZ being degenerative, my understanding is it is to a certain point. Early intervention protects the brain and lessens the impact of social and economic disruption. However, there is some literature about so-called spontaneous remission and some highly functioning people with SZ go off their medications and return to compliance and do okay. Elyn Saks and John Nash are examples. Despite many fictions in the movie, A Beautiful Mind, Nash did not to my knowledge take any of the new medications with any regularity before his accidental death.

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Thanks for posting this link - this is an excellent gathering together of information from many long term studies.

This reply I guess covers several area. Our daughter is severe Bipolar 1 (mania) with psychosis… She is 37. She did earn her BSW and MSSW – social work… ending that about 5 yrs back. Never worked… hospitalized 4 out of 5 past years… spent 2 mos McLean this summer (another story) for ECT which helped greatly. She has gained 100+ lbs from Invega shot… now off and because pituitary gland making way to much prolactin, hormone, which causes major weight gain…
She has an apartment— very sweet, kind, fun to be with— no motivation at all. Very little. She is on disability and has home health aids twice a week to clean apartment… which would look like a hoarder if they didn’t come.
She is totally capable of doing something but just won’t
We pay balance of her rent and give her some money as well for bills, living.
Thinking of saying if she wants us to continue she must do something… tried family therapy – didn’t go there… Now – she is great… sets table, cleans up if over for dinner… birthday cards— surprises for things… just plan nice and very, very smart… McLean pointed that out. But she has no focus… No routine… She does walk everyday, then goes to Dollar Store etc… buys things she will never use…or Good Will… not expensive but doesn’t seem to be able not to do this.
We are looking ahead, in our 70s. Thought of buying small condo if one came up we could afford… in western MA. Then worried what if she went manic in there… maybe an apartment is better… She does have a therapist and now a good local psychiatrist… but she absolutely has no motivation… and maybe this is as good as it will get… She was manic at McLean… not pretty… can be catatonic,
take all her clothes off, assaultive… she’s been raped several times over the years and sued an agency that put her in a situation where that happend… another long story… she won… more in title then in $$$ – wish we knew how severe she was going to get back when this happened.
Local groups etc… programs don’t offer a buddy – if led she will go… She has a few local friends from childhood but no new friends with her challenges…
Have thought of saying… if you want us to help you with your expenses you need to start looking to volunteer somewhere…
Maybe use first of the year as a date… seems like this or variations of this are common problems…

ReBoot For Sure:

same here

same

yep

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Sounds similar to my brother too. The rest of the family feels our parents missed their ‘window’ and this is probably as good as it gets. They are in their 80s and 90s now, so we children are largely in charge of his care.

Our chief concerns are to keep our brother out of jail or hospitals, try to contain his hoarding and drinking, and improve his self assteme and daily living. Lately we are trying to spin his lack of work as retirement, see once he will be at retirement age soon.

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Thanks MB,

You are very knowledgeable. My son does have some paranoia in that he thinks people are judging him and thinking mean things about him, especially women. He is not paranoid in a bizarre sense like thinking that he is being monitored or that he is being followed (as far as I know.)

He is isolated and would really like a relationship but gets paralyzed in social situations, and is unable to approach people, instead thinking that they should approach him and then getting angry.

His interest in Buddhism is too literal. He reads about non-attachment and think that he should get rid of all of his possessions. He latches on to phrases like “Go with the flow” and “Path of Least Resistance” and tries to make them apply to all aspects of his life. He then gets frustrated and thinks that Buddhism is causing him confusion and tells me everything that is wrong with it. ( I practice meditation and Buddhist philosophy and have tried to tell him that it doesn’t have to be so dogmatic and that if it is not helping him, he can drop it.) The next day he can be angry that I told him to drop it. I really can’t win and I keep learning over and over again not to give advice, but as a Mother it is really hard.

As far as I can tell his voices don’t give commands but make negative, angry and inappropriate comments about him or others. Some times the voices are just distracting and don’t really say much of substance. His hallucinations are often things he sees moving out of the corner of his eye,that are confusing but they may not have a specific form.

What would you describe as disorganized thinking?

He can talk for hours to us if we don’t limit it, on plans to move to New York or travel to Europe; why Buddhist philosophy is a problem for him; whether he should do animation, film making or acting; why women ignore him and it is hard to make friends. He goes from one topic to the next and brings up the same topics, jumping from one to another and kind of getting in a loop. His brain never shuts off.

When I point out that he can’t move to New York or travel on his $700 savings, he says that if you want something you just go for it but is unable to plan or take practical steps towards his goals. And his goals change from day to day or hour to hour. Once he makes a decision he will talk himself out of it and then get enthusiastic about the other option only to quickly become disillusioned, then he will go back to the original option.

Your comment that anger is a symptom of depression is likely the case. He switches from feelings of grandiosity to anger, and then to poor self esteem…

I wonder what would constitute a rapid cycling mood disorder as he can be calm and pleasant one minute, then angry, ranting and blaming, then a half an hour later he apologizes and tells us he loves us.

I have written a lot of stuff and appreciate you taking the time to respond.
You give me hope that you have been able to live with this illness and be independent and able to work and have friends. Kudos to you for all of your hard work and faith in your ability to heal.

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