Why taking medicine is a complex issue.....

A woman who read my blog sent me a note about a family member suffering with mental illness who doesn’t take his medicine.  She told me that the reason that he doesn’t take it is because of the side-effects.  This is truly not surprising to me.  As I found when I worked with mentally ill people, they are frequently not cooperative with medication.  And one of the reasons that they gave me is that the side-effects are not comfortable.  As I read through a National Institute of Mental Health (NIMH) publication about this topic, it reminded me about some of the side-effects that I used to hear about from clients. They would say that they “didn’t feel right”. Or that it made them “too groggy” or “tired all the time”.  Sometimes, they would even say that they felt better, so they thought they didn’t need it anymore. More typically, they wouldn’t tell me why.  They would just stop taking the medicine.  

One of my clients was on Haldol for schizophrenia, which is a “typical” anti-psychotic.  “Typical” doesn’t have the usual meaning here.  What it means in this context is that it is an older anti-psychotic.  And some of the listed side-effects are intimidating to say the least:  Rigidity, persistent muscle spasms, tremors, and restlessness.  They even mention tardive dyskinesia (TD) as a possible side-effect.  TD is a condition in which a person has muscle movements they can’t control.  That can involve uncontrollable movement around the mouth.  As the NIMH says, TD can range from mild to severe.  And sometimes it can’t be cured even when someone stops taking the medication. Did my client experience side-effects?  I don’t know.  She wouldn’t acknowledge that she wasn’t taking the medication.  It was pretty obvious when you observed her symptoms.  And when I saw the number of pill boxes that she was hoarding.  But I also remember that she was on the Haldol because that seemed to be the only thing that worked for her.  And we were forever trying to figure out how to get her to cooperate with it. For even the newer anti-psychotics, there are frequently uncomfortable side-effects.   For example, atypical anti-psychotics can cause changes in metabolism and weight gain.  According to the NIMH, the incidences of such side-effects are small. (They estimate 5%)  And as they point out, working with a good psychiatric practitioner can assist the client to find the medication or combination of medications that will lead to the least amount of side-effects. But my experience with the mentally ill is that they are not patient with working with their medical practitioner.  If the medication makes them too groggy…or they have muscle spasms…they will stop taking it.  That was one of the reasons that support from a case manager was sometimes helpful.  Someone who is focused on listening to the mentally ill person and helping them when they have problems communicating with their doctor can make a difference.  It can also be helpful to have the patient spend time in a hospital.  That may lead to the correct combination and dosages of medication.  As noted by the NIMH, sometimes people do simply stop taking the medication because they feel better.  And when they do, they relapse.  So, maybe having someone proactively work with the client can prevent relapses.  But that requires funding.  And reasonable caseloads for case managers. 

Are you thinking that helping someone with mental illness cope with medication problems and the side-effects is complex?  It truly is. But what is the alternative? I guess the alternative would be untreated severe and chronic mental illness. There is evidence that we are dealing with that problem.  Many of those who are homeless have some type of mental illness. And they are usually untreated. How has that worked for us? What does work? Does it work to force hospitalization on people? Does it work to increase funding to community based mental health options?  Does it work to warehouse people for the long-term?  People with much more education and experience than I have struggled with these problems.  We have always had difficulty in coming up with a cohesive and reasonable approach to dealing with mental illness. I am certainly not here to give you any answers.  What do you think?  What is your opinion about the direction we need to take in providing treatment for the mentally ill?

What I can tell you is what my experience leads me to know, which is how it feels to love someone who is mentally ill. It feels overwhelming, frightening and hopeless. The problems are complex and difficult to solve. But I can also tell you that it is worth looking for the solution(s). My Mom was not a throw away person. And neither is the relative of the friend who wrote me. They have worth. They are human. It is not a waste to devote our time and attention. Because, the reality is that at some point, they will die.  And then our ability to help them IS gone.  Nobody really wants to give up on a loved one who is struggling with mental illness.  But being a family member dealing with the mental illness of a loved one is sometimes very lonely.  My goal in talking to you about it is to let you know that you AREN’T alone.  For support, please Google your local Mental Health Association or NAMI.  You may find support groups and other resources that you didn’t know are there.