The book How We Got Barb Back: The Story of My Sister’s Reawakening After 30 Years of Schizophrenia is a well-written story by a woman who takes over care of her sister after their parents die. A bit too simplistic for those of us who have been there, the book could be helpful to people new to the hard experience of living with serious mental illness. And it certainly reinforces the considerable need to improve our nation’s mental health system.
Barb had been brilliant and beautiful until her early twenties. She married but returned to her parents’ home after she could no longer cope. The family denied that Barb had a mental illness and therefore never sought help for her. When her sister becomes the caregiver, this changes because she is able (with considerable difficulty) to arrange for a visiting social worker, home aides, a visiting nurse, and even a psychiatrist who makes home visits. The psychiatrist prescribes a low dose of risperidone. The woman with schizophrenia gradually loses her fears, begins to read again, connects with people and a dog of which she had been terrified, and regains her humor. Barb is back.
Well, she is sort of back. As happy as the sister is with the changes that Barb makes in the year after their father’s death, the story she tells gives no reason to believe that Barb will ever have the brilliant life she once seemed headed toward. Medication, caring people, and time can help a lot, but nothing can make up for the loss of 30 years of life experience. Barb has a better life, to be sure, and the story encourages us to hope she will get better still as time goes on. But how much better can she get? How much does that matter?
One of the clear implications of this book is that Barb should have gotten treatment much sooner. Probably so, but it is also worth keeping in mind that the treatment she would have gotten 30 years ago would have likely been a first-generation antipsychotic medication at an excessively high dose, and it likely would have had dreadful side effects, including obesity and its concomitant health problems, tremors, and perhaps tardive dyskinesia, and a tremendous flattening of her personality. Some of these risks remain today. And many (perhaps most) people with schizophrenia do not respond as rapidly and clearly to medication as Barb has.
Barb’s story has the great virtue of highlighting a number of major issues that the mental health system still needs to address: stigma, which presumably caused Barb to be hidden; the large number of people with serious and persistent mental illnesses who don’t get the care they need; difficulty in getting services at home; and lack of substantial support for family caregivers.
Bottom line: I would recommend this book to family members and professionals new to the trials and tribulations of caregiving, but I will not put it on the reading list for my course on mental health policy.
Acknowledgments
The reviewer reports no competing interests.
