I offer this story in part to try to explain why it can be hard to not offer neuroleptics and why I think they are helpful in some instances. I use this as a demonstration of how a physician who prescribes drugs can also value and respect other contributions to an individual’s recovery. Most importantly, this anecdote is offered as a story in praise of families and a recognition of their importance to the process of recovery.
I met Ronan as he was leaving his teen age years. He had abused a number of substances in his adolescence and he struggled to maintain sobriety. In his late teens, he experienced psychosis. He had spells during which he was violent. He was admitted to a psychiatric hospital and started on antipsychotic medications.
I met him after he had been hospitalized. At my initial meeting, his parents accompanied him. They were both initially uncomfortable with their son taking psychiatric drugs but at the time I met him his mother was more supportive than his father of this component of his treatment. His father, a deeply spiritual man, struggled then and struggles today with the notion that neuroleptics might be of benefit for his son and he and I have spent many hours over the years discussing the pros and cons of this type of treatment. However, his son’s episodes of violence had frightened everyone in the family and his father reluctantly accepted this part of his son’s treatment.
For many years, Ronan was a man of few words but also of few complaints. Over the years, his self reports were fairly consistent; he would tell me he was doing well and working regularly. In the early years, the family reported that he would come to work sporadically and only stay for brief periods of time. He sometimes had problems with hygiene and he could be overtly hostile towards his family and others. However, his parents were never critical and they never wavered in their support of their son; Ronan was always welcome at work and home and treated as a respected and valued member of his family.
Ronan’s father is a tradesman and Ronan had been his father’s work partner since he was a teen. Ronan was welcome to come to the work site whenever he was able and his father was always welcoming and encouraging. Ronan’s mother has also been an important and consistent person in his life. She is the family organizer. She made sure that he had food and that he got to his appointments. She helped him find an apartment and when he had problems with his landlord, she ran interference and tried to help him be successful in keeping the apartment. She also welcomed him into the family home. When his hostility rose to levels that left his siblings frightened to be with him, she set limits on his visits but did so in a loving and respectful way. Some of these discussions happened in my office and I observed the firm but caring way in which she interacted with her son.
Ronan and his family had worked with a family therapist before I had met him and this clinician remained involved in Ronan’s life for many years. Ronan did not, however, find it easy to express himself with words. It was hard to know to what extent this form of therapy helped him but his therapist was another supportive and constant person in his and his family’s life.
About 5 years ago, Ronan was violent again. His spells seemed to come out of nowhere and afterwards he had trouble explaining what had happened to him. At that time, I recommended that he try clozapine, a drug that is often helpful when others have not been effective. Since then, his recovery has been gradual but striking. He is now an active participant at the job site. He is not only welcomed at his mother’s home but he is fully engaged with his family. When I met with them recently, she told me about the lovely and personalized holiday cards he made for each member of his family.
The use of clozapine has come with some serious costs. He gained over 80 lbs. But on this front, he is also changing. After years of talking with me and others about ways that he can change his diet, he has begun to loose weight and he has now lost 30 lbs in the past eight months. In addition, he recently stopped smoking. He has been clean and sober for over a decade.
I could not have not offered him medications. His violence was so severe and at the time I knew of no safe place where he could have gotten treatment in a medication free environment. I do believe clozapine has been beneficial to him but I also know that I can not be sure of this; perhaps it is a coincidence that he is doing better in recent years. There is no way of knowing. We have talked about slowly reducing his dose of clozapine but thus far, this is not something that he wants to do. I will be honest; in his case, I am not strongly advocating this although I would support him if that is what he choose to do. As I have done with so many of my patients, I have had a frank discussion with Ronan and his parents about Anatomy of an Epidemic and the implications of the research discussed in that book. I do not know what leads to his violent episodes. Neither does he. Beyond the risk his outbursts poses to others, including those who love and care about him most; these outbursts are traumatic for him as well.
The thing I feel most certain of with Ronan is that he has a remarkably loving and supportive family who have been his biggest advocates and important partners in helping him have a life full of meaning and value. I believe medications have played a role in his recovery but I feel even more sure that it has been his parents’ consistency and love that have been most critical to his recovery.
Note: I have Ronan’s permission to share this story although to protect his privacy, his name has been changed and I have tried to avoid using identifying information. Anecdote has its limitations. I have learned to respect each person’s experience of the world and, at the same time, remember that my own version of the story is just that – my version.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
Thank you for your post. My son was on clozapine for a while. Despite the considerable hype about this antipsychotic, IMO, it was no better than the other antipsychotics that he had been on. It is worse, in the sense that regular blood tests must be taken, and of course, there is the weight gain. The pros and cons of clozapine aside, what struck me about “Ronan” that is typical of much of today’s mental health help is that it appears that no “serious” therapeutic attempts were made to get to the root of his problems. You mention that he was seeing a therapist, but there is therapy and there is therapy. Simply talking to someone years in and years out doesn’t mean that the underlying issues are being addressed. There are all kinds of psychotherapeutic approaches that involve catharsis, and many people have credited their eventual recoveries to other interventions (e.g. meditation and martial arts). People need more opportunities to see what works for them than just the well-travelled road of checking in with a therapist to talk about their problems. As soon as someone gets violent, that person is shut down with drugs. There is a reason for Ronan’s violence that could be explored in more innovative ways.
Thank you for your comments. I agree that “people need more opportunities to see what works for them” and although I may not have articulated it well, I think that is what occurred here. He was offered therapy but my hypothesis is that it was the steady consistency of the family and the opportunity to have a work environment that could be flexible to his needs that was so beneficial for him. I have found it extremely helpful to read as many stories of recovery as possible so that I remain aware of the varying paths people can travel and I can then convey that to my patients with sincerity.
With regard to clozapine, once again, it appeared that something seemed to shift in him that appeared to make him more accessible to others. As I noted, this could have been a coincidence. I agree that clozapine is no panacea but I have observed some people for whom it appears to be helpful albeit with some serious costs, all of which need to be discussed in great detail before this drug is started.
I come from a very sick family, and I suspect that in many cases, the parents who are “helping” their child in psychiatric treatment are actually part of the cause of the mental illness. I’m sure psychiatrists figure this out in some cases, but in other cases, I bet not. I know that some people get mental illness out of the blue, but most people I know with severe mental problems came from really messed up families. In those situations, it’s very sickening to me when the parents try to “help” their adult son or daughter with their mental illness by encouraging that they take meds, and the parents get involved with groups like NAMI etc.
Or in another situation in my family, the husband got a TBI, was put on antipsychotics, he got fat and couldn’t do any chores anymore, his wife insisted he take meds, but then complained to everyone how he got fat and wasn’t doing any chores around the house. Talk about a catch-22 for the poor guy. It did not end well. As in the case you described, violence complicated the picture. The best, most moral choices for treatment were not clear.
It is very unfair how patients take these antipsychotics and then get blamed by family members for being fat and lazy. Talk about piling on more distress!
Some families look loving from outside and some parents damage their children without even realising they are doing it. Sometimes the psychiatrists haven’t got a clue; most of the time they don’t even want to know. It is easier to believe that the person is “mentally ill” and to medicate: it is faster and less stressful. Some times the psychiatrist indirectly accuses the parent against medication of “non-compliance” and side with the parent who is for medication. I know, I have been there. I got my son off all medication and cured him. The risperidone he was on stopped him actually from thinking clearly and dealing with his delusions and paranoia. The meds were paralysing him physically and mentally
Sandra, I have really appreciated your thoughtful posts. Clearly you are giving thought to the risks and benefits of medication and appear to doing a real services to families and clients by giving them honest information about the risks of medications. I am encouraged that you mention and refer to Robert Whitaker’s book, which invites readers to draw their own conclusions. That self empowerment through education, collaboration and truly listening to the one who is strugging is so critical to recovery, no matter what choice is ultimately settled upon.
I agree with Rossa that more choices need to be available and, unfortunately, there still seems to be a great divide between psychiatry, psychology and other healing modalities. In my experience, each approach doesn’t know enough about the other to recommend or coordinate care using a variety of supports, which also seems to be the most effective in the long run. Lots of wellness tools and supports that help creating healing not only in the mind, the emotions, the body and the spirit. No one pill (or poly cocktail) or therapy can do all that.
I also really appreciate your acknoledgement that a supportive, accepting and loving family can be a crucial part of ongoing recovery, or at least an open door for it to occur. Thank you for acknowledging the importance of family (and by implication, community).
To speak to the concerns of the other respondents, families can certainly (indadvertently) hurt or help, depending on whether or not they have undertaken and committed to their own recovery journeys. When one family members struggles, they all do. And the one presenting the most symptoms is not the only one in need of recovery education, support and resources. That, I feel, is where we are also falling down greatly in the current mental health care paradigm.
While NAMI does provide family eduation and support, there is an agenda that promotes a one-size fits all and not very hopeful definition of recovery, “there is no cure for brain disorders… yet” but there is recovery “which is defined as symptom management and medication compliance.”
I believe the lastest numbers I have heard are that 4 out of 5 on psychotropic medications do not take them regularly. This is a health problem in and of its own. Pair that with families who think their job is to police medication compliance, and you have a situation in which families may not be the most helpful for supporting individual empowerment in treatment and recovery decisions.
We believe that families, just like providers and those who seek mental health care services, all need more recovery education, the role of trauma, support, collaboration, dialogue and safe spaces to explore the many pathways to recovery (and the many possible causes beyond bio-medical ones).
Ultimately, we are all doing the best we know. Even when what we know, as families, is watering the seeds of our own suffering, or as providers, watering the seeds of pathology, or and individuals, the seeds of hopeless and despair.
We are hoping to create a community in which families, family members, providers, friends, spiritual supports, and individual choice are celebrated for their strengths and invited join together in healing our families and communities.
Sandra, we would love for you to join our discussion and follow our progress at the Mother Bear Community Action Network, where we welcome many perspectives without judgement. http://www.facebook.com/MotherBearCAN (or website will be launching in mid April)
Thank you, Jennifer. I am no different from anyone else in the sense that it is very nice to feel that someone has heard me. There is nothing that you have written with which I disagree. I am trying to listen carefully to others and to figure out how to give my patients, their families, and my co-workers better information about healing and recovery. As you undoubtedly know, recovery has become a bit of a buzzword and I am trying to move beyond the slogan to understand this concept, too, in a more meaningful way. I agree with what you have to say about NAMI yet on an individual level, I have known so many family members who are just trying to do the best thing and are themselves in pain. I felt a need to try to represent their stories because I was troubled by some of the ways that families were being represented on this site. So thank you again and I will take you up on your offer to join your discussion group.
Thank you Sandra! Your support of and compassion for families is wonderful and much needed!