My Life Changing Experience with NAMI’s Family-to-Family

Dawn and her son, Matthew, who lives with schizophrenia.

During the holiday season, you sometimes receive an unexpected gift from an unlikely source. This year I did, but it was not wrapped in bright paper or found under a tree. It was provided by NAMI and given freely from one family to my family. My gift was the NAMI Family-to-Family Education Program, and the life changing impact it had on my family.

Over the course of son’s mental illness, I had spent countless hours and thousands of dollars trying to find help with little success. The Family-to-Family Education Program, however, is different from anything I had experienced. The program’s presenters were trained by NAMI and each have the life experience of loving and caring for a family member with a mental illness. The free 12-week course includes up-to-date information about mental illnesses and effective treatments, including units on brain biology and stages of recovery. However, the most valuable aspects of the course, for me, were the insights into the experience of mental illness, and the skills that are taught to help manage its impact. This is where the program is strongest. This is the information that has the power to change lives and circumstances. These are the things you cannot know unless someone who has lived the experience tells you.

On the first night, we learned that there are three stages of emotional responses we experience when struggling to cope with serious mental illness in our families and the emotional and practical needs we have at each stage. It was like a road map of where I had been, and where I was going. These stages are so relevant that after a few classes, I was able to recognize my own and others’ stages.

We were presented with information about mental illness as a brain disorder in which symptoms are expressed as complex behaviors. The concept of a “double-edged sword” illustrates how unfamiliar, unwanted behaviors are expressed and many healthy, resourceful characteristics are lost when mental illness strikes; the husband who was always able to deal with minor problems is now unpredictable and overacts to everything; the daughter who was always responsible now acts in bizarre, inappropriate ways. Understanding the “double-edged sword” helps us to separate the person from the illness.

Workshops focused on issues that are frequent challenges and offered practical, applicable skills and tools for me to put to use. In the problem-solving workshop, we practiced breaking down problems into manageable parts for focused effort. The empathy workshop helped me understand that my family member’s frequent refusal to take mediation and rejection of family support and community programs are driven by a need to salvage self-esteem.

Thought disorders interfere with normal communication, and in the communication workshop we practiced essential communication basics. Keep communication content simple by using short, clear direct sentences. Manage the “stimulation level” when communicating. Communications are our “boundaries” when dealing with others; boundaries must be clear and strong.

The members of the class included mothers, fathers, a sister, a brother, a wife, and a husband. Different backgrounds, educational levels, cultural groups, and ages were represented. Their family members struggled with a range of mental illnesses and were in different places in their recovery. Everyone was different, but, as I looked around the room, I saw a group of loving family members who were united in the battle against metal illness which was attempting to deprive their loved one of independence, relationships, hope and a future. They were all fighters. I was in good company.