Hello friends,
My son gets treatment at a research center near our home. He goes weekly to check in, receive counseling and they administer his shot. I had reached out to the Dr/counselor to let them know about some of my sons recent behavior that I thought was concerning (extreme freaking out over covid, complete withdrawal, yelling that I let his sister do some things outside of the house). This is in addition to the chronic problem of him viewing most of what is said to him—by us—as persecutory. When he starts talking about work or anything, whether we are actively giving advice, or afraid to and say almost nothing, he always sends us toward conflict. It’s actually a kind of mental karate that I’m amazed to watch. Today he started yelling at us after complaining about his work—we just tried to give advice. We are always very careful about what we say to him. So, I called his doctor, who basically said she couldn’t help us and she believed we needed to attend family therapy. The gist of what she said is…“this is not about the family AND our sick patient son…he probably needs to move out since these are typical growing pains…the family needs to learn how to function together and this is not about our son being sick.” When I asked if he knew he had schizophrenia, all she could say is “he comes every week and gets his shot like clockwork, so he does know something is wrong.” I said “how can you work toward getting better, if you don’t even know you are sick?” She seemed unhappy with me. I said we were open to therapy, but would the therapist have knowledge about our sons illness, etc? She said she would give information about him. It seems he goes to patient care and talks about what bad parents we are—which kills me since we have tried so hard and have been through hell. Is this typical of a doctor who treats schizophrenia? She basically said it’s our job to integrate our son into the family, without any acknowledgment that our family has been blown apart by his illness. We are supposed to go to family counseling to hear him complain, yet his illness isn’t central to this counseling? It is clear she views anything else as very unfair to him. I am at a loss. Can anyone shed light on this?
What would you have the doctor do as an alternative? Drug him harder? Find a better drug? Force him to admit to you that he’s broken, always wrong and has no right to be angry and promise you he’ll be a good boy from now on out? These are behavioral and communication problems, and while they can be influenced by drugs, drugs aren’t perfect and there are limits to what they can do. Recovery is as much or more a social function and that’s outside of a medical dr’s wheelhouse or bailiwick.
Your doctor may not be doing a great job at communicating with you, and you may not be doing as good a job of listening as you might and that’s why she’s sending you elsewhere. I know it’s hard to accept that you have to work harder at this because your son’s brain isn’t functioning well, but you aren’t likely to fix him or your relationship any other way.
Take some time to watch the following video on the LEAP process which offers an alternate way to approach these issues. Unfortunately I think many doctors are ignorant of these methods, I know I ended up telling my psychiatrist about it. I rolled-my-own version of the process before Dr. Amador wrote his book.
Thanks for your response. I do question when his behavior changes for the worse if it means the medicine is no longer effective. We are still grasping for understanding. I’ve watched that video a couple times and it is helpful. I don’t understand if someone is treated with monthly injections, how does he still suffer from anosognosia? I thought being medicated would create awareness. Maybe not total understanding, but more than what we are seeing. I really need help with this.
Unfortunately, his Doctor doesn’t communicate at all with us, and my son is being treated with no family involvement in this program. They touched base with us more when he first entered the program. They worked with us to get him re-enrolled at school. But now we have no communication unless we initiate it.
Awareness is not a switch, nor do drugs necessarily create it. Note the expression is usually “becoming aware” or “gaining awareness”. In yogic and Buddhist disciplines this pursuit can take a lifetime.
You may be looking for logic where there is none. Your son may be getting his injections for reasons unrelated to being aware in the sense you are expecting. One person’s daughter on the forum takes medication because she relates it to being employed and she likes her job so she gets her injections. Similarly I started taking medication out of fear that I might lose my job after a year of psychotherapy, I didn’t like that prospect so I gave in after much resistance.
Similarly you can be aware of behaviors, take drugs to designed to help with them, and even be motivated to stop, yet still fail to gain control. For example appetite suppressants for dieting, or nicotine patches or Chantix for smoking cessation.
Psychiatrists are largely glorified psychopharmacologists nowadays, so from your son’s doctor’s perspective she thinks she’s done aside from maintenance monitoring. Your son is taking his injections, his symptoms are reduced, he isn’t hospitalized, he has a job. The rest is figuring out coping behaviors and everyone affected learning to live with the disease.
Given considerable prejudice psychiatrists have toward individual psychotherapy for SZ that grew out of failures of Freudianism, family therapy may be the best your doctor can suggest for this situation. There’s Cognitive Behavioral Therapy, but beyond these, you’re pretty much on your own.
And that’s where I think LEAP comes in. You’re making the mistake of thinking of SZ more as an acute disease rather than a chronic disease and thinking if only your son had insight or awareness and takes his medication there’d be no need for any of this. Unfortunately it doesn’t work like this. LEAP is a process with an initial goal most people have of taking medication, but it doesn’t end there, nor does convincing someone to take medication mean they necessarily gain insight, it’s likely a more pragmatic calculus. For example I take cholesterol and blood pressure medication, because my doctor tells me I should. I can’t say this gives me much insight into the disease other than if I don’t do this, I‘m at risk for a heart attack or stroke. He can nag me to exercise more, lose weight and watch my diet, but unless I learn to adopt these habits on my own it’s beyond his control.
Thank you so much for your insight. I am so frustrated and in despair, since we feel like parents are grasping for any information. I’ve not been on the forum long, but I gather you are a patient as well as a caregiver?
I think that doctor isnt a good fit. I a am really liking the Amen clinic and information. They really get it. Maybe check it out.
I agree with Marie she doesn’t sound like a good fit , I believe you need to get involved with his doctor and brain storm how to help your son together , its important his doctor hears what you have to say about your son and most important be knowledgable about this chronic disease . You need a team working with you to help your son . We all do but i know its not easy finding one . Not many doctors want to deal with schizophrenia .
They don’t have an Amen clinic in Florida sadly , i’m still searching for someone knowledgable and affordable for my son and its not easy .
A very close friend of mine growing up as kids was hit very hard and suddenly with catatonic sz when we were in our teens (and I’m not going to tell you how long ago that was because a lady never tells!)
If you’ve never seen catatonia, it is quite alarming. He didn’t move at all but when he did it was extremely slowly, almost waxy or robotically, all joints very rigid, strait fingers, completely blank stare, face like a clay mask, and was completely non-verbal sans on occasion he’d pick up a single phrase of nonsense and repeat it over and over (‘they’re chickadees… all chickadees’). He wouldn’t or couldn’t eat or function on any level whatsoever. At one point his family was able to get him into a half-way type house that they payed for on the condition that he go for his weekly AP injections. He became essentially independent. He was able to move around and engage, went shopping, to the library, for walks, complete daily self care and chores, make food, do activities like drawing and hold conversations (mostly. There was an odd dialect that he picked up that nobody was quite sure where it had come from). During one visit I asked what he thought of the med injections wondering if he was comfortable or experiencing any side-effects and his answer was, and remained for years, ‘It’s just water. Just water…’ What he was saying was that, in his perception, it did absolutely nothing.
This is an incredible example of taking meds regularly and the treatment having an overwhelmingly positive result all with complete anosognosia.
My other comment is on the communication and therapy. I know for me and my sz partner, who suffers anosognosia, is not on meds, can be extremely disagreeable and thinks he’s having meaningful conversation, can become violent in response to situations that aren’t happening in reality, my personal struggle has been to try and get us BOTH counseling. Him to try CBT (I’ve done for myself to effectively manage negative thought patterns and depression) or other talk therapies and us also to see a marriage counselor. My hope with that is that he won’t feel like we are targeting his behaviors alone nd that I’m also responsible too, in order to avoid his paranoia and not have him just shut down, and ultimately as a bonus to help him understand how to develop basic communication skills and maybe practice empathy… what can I say? I’ve high hopes. So far I haven’t managed to get him to go see anybody of any kind with me. So… yeah. But I’m here regularly because it’s the best therapy I’ve found for ME so far and I’m grateful to have found the site! Thanks again guys!
Yes, I am a part-time caregiver to my brother with Bipolar Disorder. He became ill when I was in high school, and I was diagnosed with SZA about 10 years later. I’m not a fan of the moniker “patient”, within the forum I prefer “diagnosed”. I haven’t been hospitalized in the last 35 years, and although I see a psychiatrist periodically, seeing him as a “patient” does not define me any more than my Schizoaffective Disorder.
I’m sorry that you are frustrated, I agree that information is fragmented and poorly disseminated. Mental health care, like most of healthcare in the US, is often a disorganized and uncoordinated mess that frustrates many people. This is exacerbated in the mental health sphere by misinformation and stigma and poor coordination and communication by all affected. Quality of care and laws vary from county to county, state to state and country to country, so it’s tough for anyone to give meaningful specific advice within the forum. Often caregivers don’t have a lot of options in care providers unless they have deep pockets or are lucky enough to live in an area with quality care. Local NAMI chapters bridge this gap somewhat, but from my perspective their focus and funding was more caregiver, mental health provider and Pharma centric, this may have changed somewhat of late. I still think they give good information and training, and recommend them, but I feel they can be biased.
I feel my experience was different than many, because I started with talk therapy from the start and felt that my perspective was heard and eventually my therapist, psychiatrist, medical doctor, family members and I came to a consensus on how to constructively relate and work on what became my new normal. It was hard and expensive work, funded largely out of my own and my parents’ pockets, but eventually I became self supporting and to most people who don’t know about my illness, I appear successful, albeit possibly a bit eccentric and hard to get to know.
Although caregivers often complain about their charges being self-centered, I find some unknowingly adopt a similar self-centered and martyred stance in frustration. They want psychiatrists to “fix” their child, or police or a crisis team to take them to the hospital for treatment, or their child to behave or stop spouting nonsense etc, and tend to look for outcomes that favor these expectations. Often completely ignoring or being puzzled when different perspectives thwart their desired outcome. And devalue, ignore or discount their charges’ positions on matters and are then puzzled when met with resistance, because surely they should realize and understand it’s in their interest and they just aren’t “thinking clearly”.
That’s why I see potential in LEAP and other processes like family and individual talk therapy that favor true communication, where all involved learn, value and understand others perspectives and reach consensus, without projecting misconceptions or prejudices. Sure, you can shop around for a better doctor, or drug, or the latest supplement or other silver bullets that come along, and some may work for you and your son and that’s great. But the more you know about the disease through your own study and research, and the more you learn about how your son thinks and feels about his situation without judgement, the better equipped you’ll be to help in his recovery, regardless of other variables.
As someone with sz I can tell you that there are times when certain doctors won’t treat you unless you’re a danger to yourself or others. I got rejected from a med change for 6 months before I found an online supplement that actually diminished my symptoms. It’s called Amyloban 3399. I go to a clinic where it’s all resident doctors that change every year. They all have different philosophies and some are more proactive than others. But when I tried to switch psychiatrists, it was impossible finding one in my area that is known to consider the best interests of the patient and is also available. I went to a “random” one and she immediately tried to start me off with the most sedating med there is so I ended up back at my old clinic. If you’re worried, try going to the emergency room. Fortunately, I have insight but when I clearly explain my delusions to the doctor, she thought I was ok. Hopefully your son gets the treatment he needs, gets a second opinion, etc.
I am sorry to say that anosognosia is common (around 60%) in those suffering with hallucinations/delusions and that it may or may not ever change to insight. It is 1.5 years since my daughter began taking her monthly shot, (originally against her will) and she slowly has come to recognize that she has a brain disorder, mostly because of three rounds of psychological testing, and the fact that MRIs showed she actually DOES have something wrong with her brain (partial agenesis of the corpus callosum). But for years she KNEW nothing was wrong with her and didn’t need medicine (although she was clearly schizophrenic).
Medications all work differently, and sometimes the same medication works differently when given later. It is frustrating to both doctors and the diagnosed.
I think your son’s doctor is looking out for his best interest, which is her job. Sometimes it is very hard to find another doctor, and sometimes progress to the caregiver looks awfully slow. If your son doesn’t WANT you to be able to talk to his doctor, you won’t be allowed to. If you get permission to go with him to the doctor, I suggest you just sit and listen, and LATER fax the doctor your side of the story. Violating your son’s vision of his reality will only cause argument and upset.
I was helped by group support sessions, this site, Dr. Amador’s book, NAMI, the police, doctors, the judge, the VA psychologist and my primary care giver to learn patience with my daughter’s psychosis. It is very hard to navigate the way your family and your son can find balance.
Hi , are you allowed to take Amyloban 3399 with meds ? and may i ask how has it helped you ? when you say diminished symptoms , what symptoms did you have ? does it help negative symptoms as well as positive ?
Thanks so much oldladyblue. Maggotbrane was also very helpful in describing the chronic nature of this disease. I believed it was chronic, I just didn’t know what that would look like. The learning curve on this for parents is almost impossible. It’s so confusing to read all sorts of books written by treated schizophrenics, and they all have remarkable awareness about when they were first ill. It made me think that successful treatment always involved this eventual awareness. My son was treated successfully with a shot, was able to finish school, is working in a decent job, so why is he not aware? 2 months ago he referred to himself as having bipolar, even though he goes weekly to an outpatient research clinic for Sz. In the book The Center Cannot Hold by Ellen Saks, she was acutely sick for much of her young adult life and she managed to write the most descriptive account of everything she believed and endured during her life. I just didn’t realize that is not the case with so many.
get another dr if he puzzels you …
@Grace , I am sorry that you are on the parent’s road of trying to manage schizophrenia for your son. Yes, the learning curve is almost impossible, mostly because there are soooooo many varieties of this illness, its symptoms and its outcomes. Even psychiatrists are sometimes puzzled in determining what the person should be diagnosed with. My daughter had 5 very different diagnoses, but I knew, once I educated myself, that she had schizophrenia.
Bipolar has its own varieties and I think that some people would rather use the word bipolar than the word schizophrenia as the stigma associated with bipolar is not as bad to those with little knowledge of severe mental illness. The “normals” in the world are sometimes very rude, ignorant, and give very bad advice about severe mental illness. I stopped seeking advice from family and friends because their “advice” was sometimes hurtful. Especially advice to use “tough love” until my daughter realized how she was hurting the family with her outbursts. All that did was drive her out of my home. A person can’t stop their own delusions. It took me a few years to learn that. That’s why I liked coming on this site so much, the people here truly understand and won’t judge, and share hard won knowledge from their own battles.
But speaking of awareness in those afflicted, in my opinion, it is VERY rare, especially rare early on in the illness. I, myself, think that most people I’ve met with awareness and insight only gained it very slowly after some time with the illness and/or medication.
For instance, my daughter could and would NEVER go on the other forum on this site for those with schizophrenia. For one, she doesn’t think she has schizophrenia, for another, she isn’t capable of operating a computer, posting and following threads, etc. She can barely operate a cell phone.
You are trying hard and I have some similar experiences with my sz son. I’m not a doctor, but I have observed a few things that seem to help. You are a caring family that is trying to help by giving what from where you are seems like good advice to him. But you have to appreciate that he has an illness with one of its main symptoms being paranoia. I had some success by not giving advice. He is paranoid and everyone is either on his side or against him, in his mind. Your first concern should be empathizing and convincing him that you understand what he’s going through and you are on his side. Don’t jump right on him with telling him what he should be doing. You might very well have the right answer for what he should be doing, but you first need to get to a place where he trusts you enough to hear it. I had good results by just being really interested in what he was saying. Don’t offer solutions. Just act like you really want to understand what’s going on when he starts talking about work. You can even try saying " can you help me to understand what you are going through" and then ask questions about what’s happening with his work or whatever he’s trying to talk to about. I got really good results by, after listening to his answers for a while I said, “I understand you. I think that if I were in your shoes I would feel exactly the same way you do.”. Then instead of telling him what he should be doing, try asking him what he thinks he could do to make the situation better. Regardless of whether or not his answer sounds correct to you, let him go with that. Remember that your goal is not to solve his problems today, but to convince him that you love him and that you are on his side. Leave it at that for a while until you start to repair your relationship with him. I hope this helps. There is no magic. But it’s a good sign that he’s willing to take his medication. Be patient with yourself and with him and hang in there.
Thank you so much. This is so helpful. No one can prepare you as a parent. I just read this to my husband and this is so valuable.
Thanks. It’s so misleading to read up on the disease bc the first hand accounts imply most gain insight. Let’s pray he eventually does. My struggle today is he feels sick and got tested for COVID On Wednesday. We had no idea he even felt under the weather. My mom is supposed to come on Sunday and he is furious bc he believes we are reckless and haven’t been careful in his mind, etc. I’m waiting for results tomorrow to react, since it means cancelling a plane ticket for my brother. Even though none of us have any symptoms, he thinks we are wildly irresponsible and victimizing him. I can’t even genuinely ask how he is feeling bc he thinks I am starting something. 
I feel this is a chicken and egg problem, you have to have some insight to write a first-hand account, unless someone is recording and editing it for you. However in that case, there’s both a question of consent and making it comprehensible to a non sufferer. The closest I might think you could get to what you want is a second-hand account from a caregiver who also has SZ with insight.
I can’t stress enough, to look into LEAP. And take the family training through NAMI as @oldladyblue often suggests.