As Our Parents Age So Do We

Percentage of US Health Expenditures Spent on Mental Health Care and Services from upworthy.com

Like everyone else I’ve been glued to my computer, newspapers, and the radio, keeping track of the catastrophic and heartbreaking events that occurred in Newtown, Connecticut. As a parent and an educator, I’ve alternated between tears and anger, prayer and frustration, trying to understand how someone could murder little children and their teachers, and imagining the thought of losing my own child. I’ve been awed by the bravery of the educators at Sandy Hook.

Yet, as I listen to the media, I’m appalled by the reports and conversations equating — intentionally or not — mental illness with violent behavior. You see, my family can imagine losing a son and brother to mental illness, because we experienced it for 24 years. Violence against others was never part of the equation, and it’s not for most people who live with brain diseases. Read the December 17, 2012 New York Times Health section article, In Gun Debate, a Misguided Focus on Mental Illness by Richard A. Friedman, M.D.

From the time my brother, Jeff, was 18 until he took his own life at age 42, he suffered from bipolar brain disease. He was erratic, often upset, and frequently angry with us — his family members. He wanted so much to be like the rest of us, his friends and family, and to get on with his life. Despite all of his problems, however, he was not violent toward people. His most erratic behavior occurred when he overturned a grocery cart in a parking lot next to our car — an attempt to demonstrate how angry he was with my father, who was trying to reason to him.

An Old Christmas Photo of my Brother and Me

When my brother first became sick, as an 18-year-old, he was too young to have held any professional job — the type that offers health insurance — so he never had access to good medical care as the bipolar episodes came and went. Eventually he was recognized as disabled, gaining access to Medicare, but the program offered only the most basic mental health care. Our family did not have the resources to pay for the kind of sustained and ongoing care that Jeff really needed, and when we did try to pay for certain things, we endangered his Medicare eligibility. So, for 24 years my family cycled through the same sad devastating pattern.

After a hospitalization Jeff would feel pretty good, though he was always discharged too soon. Usually he would seek and find a low-paying job  — he held quite a few jobs, and he was almost always considered a model employee. Sometimes he would even take some college courses, and he was thrilled when he became an uncle to my daughter.

But then the bipolar brain disease would rear its ugly head, usually because Jeff stopped taking his medications, and then he would lose his ability to focus. He’d have more and more difficulty going to work and finally — when he recognized that he wasn’t behaving as a good employee — he would take the initiative and quit. Interestingly, many of his employers told him that he could return once he felt better, an indication of what a hard worker Jeff was.

Because he received too little mental health support, Jeff had almost no help dealing with the many medication side effects, and outside of his hospital stays no one every worked with him in an ongoing way to figure out how to minimize them. Once he stopped taking his pills — he could not abide with my argument comparing my regular asthma medicine with his regular bipolar meds — he would spend more and more time in his room, playing his guitar or listening to music, or talking to himself. He would easily get angry with us when we suggested that he take his medications, and we had almost no professional back-up — other than hospitalization. When his bipolar illness got bad enough, sometimes more than once a year, Jeff would be hospitalized, and then the cycle would begin all over again.

Most of the time, even in his sickest moments, my brother was gentle, loving, and always hopeful that he could beat his disease — he tried religion, exercise, diet and so much more, and he even managed to graduate from college at age 40, collecting half again as many credits as he really needed to for his diploma because he was always missing one requirement or another. But mostly he was upset with us, probably because we were healthy and he wasn’t.

Easily disillusioned and in pain, one day Jeff took his own life, quietly, in his parked car.

Today, nearly 15 years later, my parents and I still wonder aloud why we could not figure out a way to help him. We ask ourselves, had today’s Affordable Care Act existed back then, allowing adult children to stay on parent policies for so much longer, would better medical care at the onset of his illness have helped my brother develop stronger skills, skills that might have helped him learn to live with his chronic brain disease?  And I can’t help wondering whether my brother might be alive today if access to mental health services had been easy and inexpensive as access to guns.

What we do know is that violence and mental illness do not go hand-in-hand — the vast majority of people quietly suffer, hurting no one but themselves and hoping they will somehow get better. Access to better mental health care would help lots of them live secure, fuller, and more productive lives.

I am glad that the need for increased mental health services and access to care are a part of the conversation, but we need to separate that mental health-brain disease conversation from those few situations where extreme violence occurs. To learn more about mental health care today, read Sarah Kliff’s December 17, 2012 report, Seven Facts About America’s Mental Health-care System, at the Washington post WonkBlog. To learn about available resources and get support for all family members when an individual has a brain disease, check out the National Alliance for the Mentally Ill (NAMI) — the organization has a well-designed and easy-to-use website.