How do I get help when my schizophrenic son refuses?

@pta that is fantastic to here. When you get the right help it pays off.

@jenatsky yes, it’s exhausting.:0 We just try to catch our breath during stable times between relapses.

Well thank you. I'm so happy to see him acting "normal" now and feeling good. He's such a wonderful son, always was.

Since this posting my son is better now on new meds. He spent 5 weeks in a good hospital out of our area.

Thank you, everyone, for your kind words of support. God and/or Mother Earth bless you all going through mental health challenges.

@pta You mentioned his medications stopped working after thirty years — this is a recognized phenomenon, and it matters for understanding why he may be refusing. Before focusing on how to get him back into treatment, it may be worth trying to understand why he feels done with it. Why does he refuse further medications? Why does he refuse hospitalization? These are not necessarily irrational positions.

In my own history, psychiatric hospitalization has not been helpful and in one period caused me to develop neuroleptic malignant syndrome — a serious and frightening medical emergency that was traumatizing not just for me but for my family as well. I have since taken the step of writing a pre-action plan documenting what I would want my treatment to look like if my condition relapses or medications stop working. That plan specifically notes that psychiatric hospitalization was both harmful and delayed medical testing — in my case a polysomnography that eventually found sleep apnea, REM sleep behavior disorder, and sleep walking and sleep eating behaviors that had been present throughout.

A few questions worth sitting with: Are his reasons for refusing medications rational — grounded in real experience with side effects or previous harms — or are they more delusional or paranoid in nature? What is his degree of insight? Does he know he is experiencing psychosis? And would he be open to outpatient treatment options such as a partial hospitalization program?

Since he has periods of lucidity, those windows are the right time to ask these questions — not to pressure him, but to genuinely understand his position.

It is also worth noting that the standard workup for first episode psychosis includes comprehensive blood work, MRI, EEG, and possibly a lumbar puncture. Since thirty years of successful antipsychotic treatment makes a new neurological etiology less likely, those investigations may not change anything — but if they were never done, that is worth knowing. These medications are serious, their side effects are serious, and the tolerance profile varies enormously from person to person — from medications that nearly killed me to medications I genuinely cannot function without.

In my personal view, inpatient psychiatric hospitalization is too often a way of managing a problem rather than treating it — out of sight, out of mind, with polypharmacy applied by guesswork rather than diagnosis. That may not be what your son needs. There may be a version of care he would accept if the question were asked differently.

I want to leave you with one question to sit with: if you were unwell, would you want to be confined, and given medications by trial and error, without being asked what you needed? His refusal may not be psychosis speaking. It may be a man with thirty years of experience in the psychiatric system making a decision based on everything that system has put him through.

That deserves to be heard before it is overridden.
I know this reply is late, but I suspect your situation is far from unique and others reading this thread may find it useful too.

Has anyone suggested the carrot approach before reaching for the stick? Coercive pathways — police escorts, involuntary holds, guardianship transfers — tend to be the first tools offered because they are the most visible. But compliance that comes from trust and genuine engagement tends to last longer than compliance that comes from force, particularly in someone with thirty years of experience of the psychiatric system who already knows how those tools feel from the inside.

On the question of violence — others in this thread seem understandably worried, but statistically, with the important caveat that sobriety is a significant variable here, the risk from a non-violent person with psychosis is considerably lower than public perception suggests. That concern may not need to be at the top of your list.

Regarding the suggestion to transfer guardianship to the state — I would think carefully before going that route. You are his mother. You know him. You have lived alongside him for six years and loved him for fifty-two. The state does not bring that to the table. Institutional guardianship is, at its core, the same thinking that built the asylums — the idea that the solution to mental illness is to place it in the hands of a system and step back. For a gentle, non-violent man with a thirty year treatment history and a mother who clearly still has both the capacity and the desire to advocate for him, that transfer of care is not an upgrade. It is an abdication dressed up as a solution.

The hardest and most important work here may simply be finding out what he actually needs — in his own words, in a window of lucidity, without the coercive apparatus in the room.

@bewildered You are encouraging the mother to lie. Psychiatric hospitalization is not some benign intervention, and I have an old saying, "violence and coercion, begets violence and coercion," the research on involuntary hospitalization bears this out; I am not confident about the ability of psychiatric inpatient hospitals to be able to treat people without harm, especially on an involuntary basis, she said it herself her lean son has become a fat potato, but a good outpatient psychiatrist could absolutely help mitigate this horrible side effect. and being fat can kill you... slowly.

@aethelwulfe you are wrong, and you missed the point. I am not encouraging anyone to lie. I am encouraging the mother to get help for her son. It is far more dangerous to do nothing to help a severely mentally ill person than to be fat. Obviously fat is not good, but it’s the least of their worries! I’ve been around enough hospitals and psychiatrists to know this as well as mental illness in family members. When you get a degree in psychiatry or have gone to hell and back suffering from a mental illness like many of us have, then speak to me.

@bewildered , good points. I suspect the degree of assistance needed for a person in crisis may be underestimated.

Thanks you for your comments. After 6 months off the lithium and risperdal
( which he was in over 30 years), he refused care. So sadly, I had to wait
for a breakdown to occur, and have the troopers escort him to a good psych
hospital out of our area. We don't have anything here. We live in the
country. So it worked out to be a good thing as sad as it was at the time.
He was in hospital 5 weeks. They gave him Olanzapine and it is like a
miracle for my son. He is "back". He is renewed! He feels good, is totally
cognizant of his surroundings. We are both happy and feeling safe now. He
came out of hospital last April 15. (A new man!). I wish you the best in
your journey. Sometimes it takes years before a good break happens. Gotta
stay above water and keep swimming! My heart goes out to you.