I get emails every week from desperate parents seeking advice. Many have a son or daughter who’s been arrested. I remind them that I am not a lawyer, nor am I a social worker, psychologist or psychiatrist. I’m simply a father who became angry when my son got sick and I couldn’t get him meaningful help for his mental disorder.
The most common question that I am asked by other parents is:
How did you get your son to take his medication?
The answer is: I didn’t.
My son did not want to take medications when he was first diagnosed even though the pills helped him. I got angry. I counted his pills to make sure that he was taking them. When I discovered he wasn’t, I confronted him. We argued and I practiced “tough love.” I said, “You can’t live under my roof if you don’t take your medication.”
He moved out. A few months later, he had to be hospitalized.
After he was discharged, he did fine for several months, enough so that he stopped taking his medication. This time I offered to pay him every day to take his pills in front of me. All my bribe did was make him angry and more determined not to take them.
It was Xavier Amador, author of I’m Not Sick, I Don’t Need Help, who told me that I never needed to talk to my son again about the importance of his medication. Xavier assured me that my son knew exactly how I felt about pills. Instead of arguing with my son, Xavier urged me to form a partnership with him based on mutual respect and mutual goals.
In his book, Xavier writes that about half of all persons who have a persistent mental disorder, such as bipolar disorder and schizophrenia, don’t believe they are sick. That makes forming a partnership even more difficult. Obviously, the best time to create that bond is when someone is stable. That is one reason why I am a strong proponent of Advance Directives.
Back to my experiences.
While my son was stable, I worked hard to become his partner and not his dictatorial father. We talked frankly about why he didn’t want to take medications and about his alternatives. I LISTENED to him. I shared stories with him about my research and the many experts whom I had met and consulted.
And after two years of being stable and forming a working partnership, my son stopped taking his medication and ended up hospitalized for a fourth time!
It has now been four years since his last break. He now takes his medications and, in our conversations, he has told me that he believes his medications are the bedrock of his stability.
So what finally got him to comply?
Age helped. He is now in his thirties and he was tired of losing jobs and ending up in psychiatric wards each time he stopped taking his pills. He could see other people his age moving forward with their lives. He wasn’t.
He also ran out of excuses. The first time he stopped taking his pills, he claimed that his first break was a fluke. He didn’t really have a mental disorder. The second time he stopped it was because he had beaten his illness and didn’t need the meds anymore. The third time, he said it was because the medications were making him gain weight and weren’t working anyway. After his fourth breakdown, he ran out of rationalizations. He couldn’t deny it anymore. It had become clear to him that he had a mental disorder and when he was taking his pills, he was stable and did well. When he wasn’t, he became psychotic and ended up being arrested, tasered and/or hospitalized.
He also got scared. A psychiatrist told him that each time he had a break down, it would be harder for him to recover. He actually was damaging his brain and he had been in enough mental wards to have met people who had spent years being ravaged by mental disorders.
He also had an incentive for being stable. My oldest son, Steve, and his wife, Michelle, had a baby and they said that they didn’t feel comfortable having their newborn around him if he were not symptom free.
Finally, he also got the tools that he needed to recover. In addition to medication, he got intensive case management from a caring social worker who offered him hope and helped him move into his own apartment, encouraged him to become a peer-to-peer counselor and helped him get a job in a jail diversion program. Simply put, being stable paid off for him.
What does all of this mean?
There is no magic answer for getting someone to take their medications. Everyone is different. But I believe we can learn from my son’s experiences. (1.) A person has to realize they are ill and need help. (2.) They must find a medication that actually helps them control symptoms. Some medications don’t work. Others do, but have horrific side effects. There is no use taking something that isn’t going to help. (3.) The chances of someone taking medication improve when they see a real benefit and understand that medications will help them achieve those benefits.
Here is what I suggest when I am asked for advice. I recommend that parents read Dr. Amador’s book. I ask them if they know about NAMI and Family-to-Family classes. I urge them to familiarize themselves with medications and side effects. I ask if they have chosen a doctor whom they trust and is competent in making a correct diagnosis, prescribing the right medications, and in communicating decisions to his patients. I urge parents to fill out an Advance Directive with their child. I urge them to familiarize themselves with services in their communities. Helping someone who is sick requires work. Is there a crisis mobilization team in your town? Are the police CIT trained? Do you know your state’s laws. The Treatment Advocacy Center has an emergency kit that is helpful.
And if none of that works, then as a parent you must realize that it may be necessary for you to take steps that might make your son or daugther initially hate you. As a last resort, you might be forced to have them involuntarily committed against their will. You might be forced to take even stronger steps, such as becoming their legal guardian. In the absolute worst situations, you also might discover something that is politically incorrect to acknowledge but nevertheless is a grim reality. It’s possible that regardless of everything you do and how much you love your child, you might not be able to save them. These are cruel illnesses.
Fortunately, those cases are not what usually happens. When my son and I were in one of our worst periods, a good friend with a mental illness told me that I had to “look beyond the darkness” and believe in “the light.”
“Most people do get better. Most people do recover. It just takes some of us longer than others and the chances of recovery happening are better, if your son or daughter has an advocate.”
What advice would you offer?
About the author:
I’m lucky in many ways, because Tim was diagnosed so young, he didn’t have a choice when he began meds at age 12. Now, at 17, they are part of his routine, and he understands he needs them to remain stable. Dont get me wrong – there have been times when he has refused to take his meds. One case where he ferilized the lawn with a month’s supply of Thorazine comes to mind. But he has learned that his life is more enjoyable on his meds, even with all the side effects, than it is off them.
This is another reason public education is key. My son (diagnosed with major depression/has required hospitalization) is very young. I have had an alarming number of well-meaning but uninformed friends and relatives suggest to me that medication is not the answer – that changes in diet or lifestyle might “cure” him. I fear that as he gets older, people will be giving him this advice directly & he will become convinced to stop taking the medication.
My husband and I did exactly what you did, counting out his pills, checking, double-checking, and driving both him and us crazy in the process. I don’t buy people’s excuses that they can’t get their relative to take their medication. IMO, they don’t want to put in the hours. My son eventually became compliant on his own, but, BUT, the pills are an excuse, too, and divert attention from fixing the troubled relationships and emotional pain. Meds are tranquillizers, that’s all they do. They don’t fix the subtle and not so subtle traumas to which the individual is reacting. Meds don’t force families to look at other ways of coping. My goal was always to help my son to cope (thrive, actually) and get off the meds that were crippling him in their own way. I had to look high and low for other solutions, which are not advertised with a blinking neon light. My son had a relapse, that I do not attribute to his going off the meds (under supervision). He relapsed, because we were pushing him to hard to go back to school, to be independent when he was not ready. Now he supervises his own meds reduction and elimination. He’s got a much clearer sense of who he is and what he was put on earth for.
More to the point, parents don’t help by getting on their child’s ‘case.’ I haven’t read Amador’s book, but his opinion about mutual respect sounds sensible. We got very critical of my son and hostile when he seemed to be well, but was not taking much initiative with his life. That’s called high expressed emotion, and our family certainly paid the price for being overly-involved and overly critical. Rather than him telling us directly that he didn’t want what we wanted,we got relapse (anger). If my relative came to me and said he didn’t want to be on the drugs, I would respect that choice, but there’s a quid pro quo. Is he willing to work with a psychiatrist, is he willing to do extra homework to find out what makes him tick and why he becomes psychotic as a coping mechanism? Is he willing to keep working at an alternative? Telling a relative that they must be on the drugs when he who is taking the drugs doesn’t like them, is disrespectful. It assumes the we know better than he does about what goes into his own body. I think, in this marketplace, the consumer is always right.
I agree with all of Pete’s advice, except for this part, “It’s possible that regardless of everything you do and how much you love your child, you might not be able to save them. These are cruel illnesses.” Yes, they are cruel illnesses. But we can save them all by getting court ordered treatment in all states, vigorously using it in the states that don’t have it, repealing the IMD exclusion, stopping the practice of institutionalizing people with serious mental illness in our prisons rather than a hospital, and recognize that homelessness shouldn’t be an acceptable “least restrictive environment”. So if we have a very ill family member who apparently “can’t be saved” we need to spend as much time as we can advocating so others don’t have to have the same fate.