“…so we just took her home to wait for a bed in the good hospital, which was going to take a few days, according to him [the psychiatrist]. He said to keep a watch on her, remove all the knives, put sheets over the mirrors so she can’t see herself, because that would set her off. And of course, make sure she doesn’t kill herself, or anybody else.” June, from Daughters of Madness, when she and her sister (ages 13 and 15) sought treatment for their mother in the 1980s.
I’ve been reading Growing Up With a Schizophrenic Mother by Margaret J. Brown and Doris Parker Roberts, and Daughters of Madness by Susan Nathiel. After my last post, Children of Mental Illness, I was thrilled to hear from author Susan Nathiel. Susan tells me she will publish Sons of Madness this August. There are fewer interviews in her forthcoming book than in Daughters of Madness because male volunteers were harder to find. Susan says, however, that the interviews included in her new book are excellent. I’m glad to hear about this new publication, because there still isn’t a lot written about the experience of growing up with a seriously mentally ill parent.
When I was coming of age in the 1960s and 1970s, I thought I was the only daughter in the world who had a mother with schizophrenia. Many of the individuals interviewed in these books are baby boomers like me. Some of us had encounters with mental health professionals who were compassionate and helpful, but more often they were uninterested in helping children and teens with a mentally ill parent, unaware of their needs, or not permitted to help by the mentally ill parent or another adult family member.
Back then, there was no NAMI (National Alliance on Mental Illness). There were no support groups for families of the mentally ill, little in the way of books or educational materials about mental illness, and no Internet where you could plug in a keyword such as “schizophrenia” and retrieve information. Sometimes, I think that dearth of information and the fact that mental illness was kept secret by all concerned were the reasons I went into communications and later medical librarianship. I wanted a voice that could be heard, and I wanted to give people the vital health information they needed and deserved.
Thankfully, things have changed, though I don’t think they’ve changed enough. There are excellent mental health family services at the medical center where I work, and we librarians at the medical library often give information and educational materials to patients. One of our librarians specializes in providing mental health information to patients and families. But mental health care in our country still needs fixing; unfortunately, too many patients and families don’t get the services they need.
When I was a teenager, it didn’t occur to my mother’s mental health care providers that I might need to know her diagnosis. Now, when I give a patient or a family member health information, I feel I’m doing a little bit to validate their experiences and make their lives better. But I’m also making up for what I never got until quite late in the game. I’m saying to patients and their families: You matter. You need to know. You deserve the best information we can give you.
In celebration of my first anniversary as a blogger, I’m giving away a book to one lucky person who leaves a comment on any of my posts here at Books Can Save a Life in February. There are still a few days left to join the conversation and add your name to the drawing, so please do!
Quote from: Daughters of Madness: Growing Up and Older With a Mentally Ill Mother, Susan Nathiel. Praeger, Westport, Connecticut: 2007.