Without a key
by a Staff Nurse

It was the day after we lost our father. I was staying with my sister, and I sensed that something had changed. Already suffering devastating side effects from Interferon treatment, she wore a baseball cap to cover her significant hair loss, and she now seemed fatigued in a way I had not previously noticed. Her speech was slow and robotic, and she made an odd, repetitive clicking noise, which I attributed to the dry mouth of which she complained. When she moved, her gait looked rigid. The Yankee network channel on the television hummed in the background, and she often stopped to stare at the screen.

She didn't attend our father's funeral service. It was "just too much" for her. I recognized it all as grief.

Less than a month later, facing the challenge of living 300 miles away, I found myself desperately making calls to her doctor in attempts to get her evaluated at a hospital. Her behavior had become increasingly bizarre, manic, and unsafe. It became clear that she could no longer take care of herself.

Traveling back those 300 miles to where she lived, I stopped to pick up clothes at her home before my first visit to the hospital. This time, her home looked remarkably different, as though she had turned it into a bunker, preparing for some catastrophic event. Her framed photos were turned away, facing the wall, all electrical items were disconnected and clocks dismantled, and the clothes had disappeared from her closets, replaced with water bottles and an excessive number of rolls of toilet paper. It was then that I experienced the outward signs of her torment, although I could only imagine her fear.

At the hospital, it felt strange to be on the other side of the locked door...without a key. I rang the bell and waited anxiously to enter. It looked so foreign inside, yet so familiar. I saw her sitting rigidly in the visitor room, waiting. She stared straight ahead, her face expressionless, and she looked so frail that it was an effort to keep myself composed. As I approached, her eyes lit up. Although her smile still looked somewhat frozen, she seemed happy to see me. I sat beside her, and she took my hands. Looking at me with great intensity, she whispered, "Mary, they are in awe of me here."

My response was, "Of course they are."

My sister is lovely and smart and strong. Mania has captured her, but I will help rescue her, I thought. After all, I am a psych nurse. I stood up and asked to speak with her nurse and her doctor. Oh yes, I was all business. I had all the questions ready and thought I had all the answers, too. Again, I reminded myself that I am a psych nurse.

Then came those dreaded words. "I'm sorry, but I cannot give you any information." I remember thinking, Wait a minute, don't you know who I am? Talk about grandiosity! When I told them I was a psych nurse, they seemed unimpressed. I felt powerless, but I had to respect confidentiality, even as a family member, so I waited patiently for my sister's consent. Separating from my professional role was difficult until one of the nurses pulled me aside and kindly told me, "It's okay to 'let go' and just be her sister." She spoke directly and compassionately, knowing exactly what I needed to hear.

How did this happen? How could we have missed the signs? Well, sometimes we do. She had suffered a year of devastating losses. After retiring from a high-powered job to tend to her health, she suffered setbacks. She separated from her husband, and then we lost our dear father. After those major transitions, she suffered severe insomnia for months. I later learned about her mounting fear and her belief that another 9/11 was imminent. She thought that she heard surveillance helicopters hovering above her home, and she found comfort only when the Yankee channel was on because she thought that our father, a lifelong Yankee fan, spoke to her through the television.

Five years after her hospital treatment, she has not relapsed and is vigilant about staying healthy. Medications, therapy and spirituality, and family support have given her peace. I continue to keep the lines of communication open. I listen a little more carefully now, and I look at her more intently. Professionally, this experience has helped me to see through the eyes of my patients' families. I now understand how it is to feel powerless over an illness and a mental health system. I know what it feels like to act a bit intrusively with the treatment team and not care because you are advocating for your loved one. Living through my sister's illness gave me powerful insights that help me empathize with patients' families in a way I couldn't until I found myself on the other side of the door...without a key.