Personal Accounts: A Peer Saplings Story: Lifting the Veil on Parents With Mental Illness and Their Daughters and Sons

The first time I recall visiting a "mental hospital" was 1979. Although I had been inside hospitals before then, this particular hospital is ever present in my memory. If you have seen the movie Rain Man, you might recall the institution that Dustin Hoffman's character lived in until his brother came to visit. In my memory this building was similar. Large, brick, looking a bit like a building on an Ivy-League campus, the building loomed as we drove past the well-cultivated lawns that surrounded it. My memory is of a cold environment, with tiled floors and doors made of metal that closed loudly as they shut and locked. I think of the sound of metal on metal and of the large, colorless, sterile hallways. Following my memory, I walk down the corridor to a room with tables. People dressed in white hospital gowns walk slowly in a daze. Years later I saw One Flew Over the Cuckoo's Nest and was amazed at how closely the hospital depicted in the movie reminded me of this hospital from my memory.

Coming through those hallways, with doors opening and locking shut, my journey would usually end in a warmer room. In this room, with nice carpet and wood fixtures on the walls, I would visit my mother. I was nine years old. The warmth of the visiting room did not convince me that the hospital was a good place. In fact, as a child I was acutely aware of the bad conditions and worried about my mother. There are thoughts that I have about this hospital that seem like memories, but they are not mine. They are memories that I created from listening to my mother over many years as she recounted her experiences. She spoke to me of being locked in solitary confinement for long periods of time. She recalled being told she "was the worst case of bipolar schizoaffective disorder they had seen" and that she would "never get out." But during those visits, I, too, was in captivity. I was in a holding pattern, waiting for my mother to get better so that I could learn the truth about her, about my father, and about my mother's illness. I was living with my grandparents, but they could not communicate to me what was going on. So I retreated into a world inspired by Catholic imagery and mystics and waited for brief moments when my mother would be available to help me.

My mother died in January 2007, just three months after my grandmother, who had died in November. Because they are gone from this world, I feel more comfortable sharing our story and my perception of their worlds. I have worked as an advocate to raise awareness of the needs of parents with mental illness and their daughters and sons, but until now I have tended not to share my specific story too often for several reasons. First, I am one of millions of people with similar stories. Over the past seven years, via this advocacy effort, I have met hundreds of people like myself and have heard their stories. Through contact with my peers, I have gained perspective on my own story and have gained a broader vision to define the overarching characteristics of our group: daughters and sons of parents with mental illness.

Second, there is a growing body of literature in which daughters and sons tell their personal stories. However, a framework for contextualizing those stories into a call to action that includes policy recommendations and systemic change has been lacking. I hope to help our national group of daughters and sons contribute to solutions that will make it easier to take action in support of families in which a parent has a mental illness.

Third, my mother was burdened by guilt about her illness and how it affected my brother and me. Her central source of esteem was her great parenting and the wellness of my brother and me. In essence, our success was her success. For this reason, I worried that in publicly sharing the pain of isolation, grief, and traumatic stress that I experienced as a child, I would cause my mother to somehow feel that it was her fault, despite my reassurances to her that it was not. And finally, my advocacy work in this area is not an attempt to heal my hurt, which can best be healed through the love of friends and family and good therapeutic interventions. Now back to the story.

My mother received a diagnosis of bipolar disorder in 1974. Through no fault of her own—nor that of my father or grandparents—my mother began hearing voices in 1977. As she told me later, "I was hearing 20 to 40 voices at a time." Despite that, my mother was awarded custody of my brother (18 months old) and me (seven years old) after she divorced our father. For a little over a year, we lived with our mother while she was hearing voices. It still amazes me that no other adults knew she was ill. This left me to fend for myself and to take care of my mother and brother. I recall knowing that it was time to go to school when the Yogi Bear show, a morning TV cartoon, ended. I also recall my mother crying a lot and thinking that my brother and I were being killed by Nazi soldiers. She also would walk around the apartment trying to catch her eyes because she believed they had floated out of her face. She often locked herself in the bathroom and talked to herself in the mirror because she believed she had telepathic powers. We lived like this for a year, until a babysitter and her mother figured out what was going on. Then, overnight, we were moved to another state where a vicious custody battle ensued, which ended in accusations between my father and grandparents, each claiming the other had kidnapped my brother and me. In the end we were moved yet again, overnight, to a different state. We moved to four states between 1978 and 1979.

Blaming each other tore our family apart more than my mother's illness. Everyone was angry and no one took the time to talk to me about what was going on. I was with my mother over the years as she suffered through each period of psychosis. I would wait for adults to intervene, often feeling helpless and not knowing whom or how to call for help. When adults did intervene, it usually meant moving from the state where we lived, changing schools again, and losing any ties I was beginning to build. During these years, no one asked me about my experiences of living with my mom while she was ill. I was expected to just go play and be a child while she was in the hospital. No one appreciated the good work I had done; there were no adults around to observe. And this role of caretaker, the only role I had learned to do well, was taken away from me when adults stepped in to help. I was ill equipped to play with my peers. Through this disjointed period of loss I fell into depression and dissociation. Grief stricken by the series of events, I began to hope I would see a vision of the Virgin Mary. In retrospect, I wonder now if that desire was also a wish that I could somehow make sense of my mother's illness.

By 1980, my mother had become well enough to live in a group home, where she met my future stepfather, who struggled with schizophrenia. My mother recounted to me that they "wanted to prove the doctors wrong." She also told me often, "My motivation for getting out of the hospital was that I wanted to raise you kids." My brother and I went to live with our mother and stepfather after they were married. It was during this time that I opened up to the grief I was holding inside. I recall this period, from age ten to 12, as the darkest years of my life thus far, but this was also the most therapeutic period of my childhood. My mother was well enough to help me. I finally had someone who was able to answer my questions and who was not afraid to explain what was going on. According to my mother, for 13 months she stayed up with me every night until 1 a.m. while I cried. "I counted the months," she told me later, as we reflected together.

People often ask me what factors contributed to my resilience. I credit my mother. Despite 30 years of struggling with mental illness, she never insulted me and believed strongly in reinforcing children's self-esteem. One day, as a high school student, I teased my mother about her illness in front of one of her friends. The friend attempted to correct me, saying that she did not allow her children to tease her. My mother stepped in, saying, "You have to understand, this happened to Margaret too, and she needs to laugh about it." She also acknowledged that sometimes my teasing hurt her feelings. I had not realized I was hurting my mother's feelings, and after that I stopped joking about her illness. But it was exactly my mother's awareness of my needs that contributed most to my recovery and health. In the week before my mother died, she said to me, "I know you are tired from caretaking, and I want you to know that I want to take care of you too." She had taken care of me, despite amazing odds.

Over the past seven years, I have been part of a volunteer effort with other daughters and sons. My hope is to lift the veil of systemic paralysis that sits over people like me and that has allowed the parent within the person with mental illness to be ignored. In my work I have witnessed several situations in which a parent with mental illness is struggling and is the primary caretaker for children in the home but many of the professionals involved ignore the needs of the family because it has not reached a threshold of harm that would trigger a response. In most areas of the United States, child welfare and mental health workers do not have adequate tools to strengthen resilience and mitigate crisis for these families. Perhaps this paralysis comes in part from something Malcolm Gladwell discusses in his book The Tipping Point : "When people are in a group … responsibility for acting is diffused. They assume that someone else will make the call, the apparent problem—the seizure-like sounds from the other room, the smoke from the door—isn't really a problem."

This is a call to action to "the group"—adult mental health and child welfare administrators and workers, advocates, researchers, and other professionals. I believe we will truly make a difference in the lives of millions of children and their parents in the United States today if we broaden our vision to deliberately eliminate stigma against parents who struggle with mental illness. We can do so by recognizing that parenting is an essential human role and can be a significant rehabilitative factor in helping a person reach wellness. When a person with a mental illness is a parent, activities supporting their parenting role should be discussed as part of their recovery, and specific tools should be provided. Also, outcomes should include how their children are doing. Even in a hospital, in a jail, on the street—a noncustodial parent with mental illness is still a parent. People gain great esteem from the unconditional love and bond of parenting. I am encouraged by the work of groups in Australia and the United Kingdom as they develop their "young carer" initiatives, and I think we can build on what they are doing. When we incorporate parenting into our vision of mental health recovery in the United States, we will have taken a giant leap forward in eliminating the stigma of mental illness.