Who’s Calling the Shots . . . (or Capsules . . . or Tablets)?
Medications have been a part of our family’s life for well over a decade. When my daughter’s first psychiatrist first suggested adding medication to the two years of therapy we’d already invested, I panicked. Medications?? In an 8-year old child?? Images of a catatonic, zombie like little girl flooded my mind. Even though our family’s professions gave us considerable knowledge and access to information about psychiatric medications, therapy and treatment options, none of that seemed to matter when the patient was my child.
Ultimately, we did go down the medication path taking on the role of armchair quarterbacks in the world of psychiatry. With a “if you can’t beat ‘em, join ‘em” mentality we researched, questioned, observed, documented and gobbled up every study, news article, anecdotal story and package insert that we could get our hands on. Obsessive? You bet! Over the top? Definitely. Would I do it all again? Probably. Knowledge is power and until my children could advocate for themselves, it was my responsibility as a parent to be the best advocate I could possibly be. While there is no question that a lay person presuming to know more than the professional could be off-putting, using knowledge to be an active player in the decision making process was generally welcomed.
Fairly early on, my daughter began to weigh in the medication decisions. Initially, her input took the form of refusing her meds. ‘Forgetting’ to take them was followed closely by flushing them down the toilet (capsules float so the clues were pretty obvious). The protective (aka controlling) mom in me wanted to confront the issue head on with consequences and strict rules of psych ward like monitoring.
Thankfully, our (second and current) psychiatrist had far more experience and a much more realistic approach. He taught me two valuable lessons. 1) Listen to the patient, no matter their age. They have valuable input that cannot be found in any research article or PDR (Physician’s Desk Reference). 2) Involve the patient in the decision making process. What this meant for us was taking the time to find out WHY. Why was our daughter avoiding her medications? Was it due to side effects? Stigma of feeling like she was the only 5th grader taking meds? Anger or rebellion over having a chronic illness that was shrouded in secrecy?
Taking the time to listen to my daughter empowered her to be an active part of her treatment team. She learned that she could say ‘hey, I don’t like the way I feel on this medication, can we try something else’? She learned that by explaining to her family and to her psychiatrist what she was experiencing we could all better support her in our common goal of wellness and stability.
Years later we all learned another valuable lesson – it takes a village. We are all stakeholders and we all bring different perspectives to the table when it comes to an effective treatment plan. The patient becomes more and more independent when it comes to daily care and self-management. That’s what we’ve all been working towards. Parents shouldn’t hover over their child in high school and beyond – it’s not healthy for anyone. Yes, there are times where things fall apart or the progression of the illness interferes with building that foundation of self-care. But in general, as our children get older, we as parents get to step back and let go a bit.
The tricky thing with mental illness (and this can hold true for other chronic illnesses as well) is that it can mess with one’s perspective and judgment. Feelings, perceptions, relationships can all become distorted by the lenses of anxiety, depression, mania, compulsions. Our illness can convince us that we don’t have an illness (ask any recovering alcoholic about that one!). Or, during a long stretch of stability (I refer to this as ‘remission’) we can question our need for medications because we feel fine. Our psychiatrist often reminds us that stability often indicates that the meds are working rather than being an indicator that we no longer need them.
So when our now adult child decides (with or without our knowledge) to go off of medication, what do we as parents do? Or not do? First, refrain from hitting the panic button. Yes, if our loved one goes off the rails we are going to be impacted. Yes, we are afraid of history repeating itself. But blowing up or demanding to take control will likely only serve to shut down a crucial line of communication. Second, ask questions. Do some research. Find out WHY the decision was made. Is it because of side effects? Peer pressure? Expense? Find out HOW the decision was made. Were members of the treatment team involved? Was the decision well thought out or done in a moment of impulse? Is there a safety plan if things start heading south? Under what circumstances would meds be restarted?
I am grateful to our psychiatrist for creating the foundation many years ago that has helped us to navigate a variety of medication scenarios. I am grateful for the years of experience, ‘on the job training’ and even the really difficult times. I’m not always comfortable with the decisions made by my (adult) children. I’d be lying if I said I don’t worry. I’ll always worry to some degree; these are my children no matter their age. But I’m okay with them calling the shots.