Back in 2010 I reviewed Clem and Olivier Martini’s book Bitter Medicine, in which they describe their difficult experiences getting appropriate care for Olivier’s schizophrenia and help for the family in dealing with it. As the parent of a son diagnosed with schizophrenia, I felt that the book spoke directly to me. Now, using the same compelling format of text and illustrations, they have written The Unravelling, describing their frustrations in finding appropriate care for their mother as her dementia worsened, and the effects this had on the fragile mental health of Olivier, with whom she lived for 30 years. Again they are speaking directly to people like me—those struggling to deal with the dementia of an elderly parent and worrying what will happen to their own children with mental illnesses when they are no longer able to care for them.
Clem asks, “What might our family have been without mental illness or delusions or dementia?” This question hovers constantly in the background of my own life, along with the fear and worry of an eventual unravelling of the carefully constructed and, for the time being, stable set-up we have managed to arrange for our two disabled children. On the very first page Clem and Olivier point out that “in the world of mental illness, truth and lies can be exchanged …and perhaps the most dangerous lies are the ones we tell ourselves.” My husband and I created an illusion, for our children but also ourselves, that they live independent lives. A crisis permanently shattered this illusion. As Clem says, despite every good intention “You can fly at the problems that face you and miss every one.”
The Unravelling is also a tribute from Clem and Olivier to their mother, who was independent and resilient through the many challenges of her life. Clem describes dementia as “a fire that Mom is slowly being lowered into, and it burns away everything that existed but her essence.” This is surely the experience of every child of an elderly parent with dementia.
Most of all, their book is a devastating critique of the mental health and dementia care systems. They describe an arcane, convoluted, almost incomprehensible system for assigning elderly people in need of care to appropriate facilities. Their attempts to navigate this system would be laughable if the lives of fragile and sometimes difficult elderly people were not hanging in the balance. Speaking up while dealing with the system has the potential to jeopardize access to care and even the quality of that care. Clem and Olivier, though, are done waiting for the right moment to speak up. The Unravelling is their invitation to us all to be through with waiting.
—Barbara Schneider is a professor in the department of communication, media and film at the University of Calgary.