Abstract
Every survey of families of patients with psychosis reports the huge emotional burden they have to carry. As a trainee I was taught that their stress can reach levels seen in the front line of battle… consequent ‘compassion fatigue’ can develop, just as for aid workers in battle zones.
David Karp, a professor of sociology, supplies the detail. Most of his informants belonged to a weekly long-term relatives' support group at McLean Hospital, Boston. Through 60 lengthy, unstructured interviews, Karp explored ‘how love and obligation play out as a process over time’. Moving and useful quotes are provided from his tape recordings, from which he inducted certain recurring themes.
In my own experience with these families, as a psychiatrist and family therapist, three themes stand out. Fear of suicide makes relatives feel ‘over a barrel’ to be involved, and Karp reports that too often health professionals lack understanding of their dilemma. Guilt for not caring enough, for genetic harm etc., is felt particularly by mothers; Karp believes that because women are better at empathising they suffer their feelings more. Strangely, grieving is hardly discussed, though it always requires our clinical attention. The loss of the future that was imagined for the patient is one of many losses to be explored.
I found the testimonies of a child, a sibling and a spouse particularly valuable. Children and siblings have the problem of how and when to reveal the psychosis to their friends. Karp notes that no blame is incurred, when a sibling or child chooses to separate completely from the family. The son of a woman with schizophrenia tells how he had to dissociate as a child: ‘It is terrifying to a child to have your parent helpless.’
Two-thirds of Karp's informants were women, mostly mothers. Karp states that because men tend to be solution-oriented, they sometimes burn out quickly as care givers. You wonder if this distinction may apply to psychiatrists as well…
The emotion Karp heard about most was frustration. It pervades every phase of family members' experiences. The first frustration, before diagnosis, is the inability to empathize with the sufferer. In this phase bewilderment rules. (Karp notes relatives' tendency to deny mental illness as an explanation, but he can't throw any light on this striking phenomenon.)
Diagnosis is a relief, sometimes even experienced with joy – for at this point expectations of cure can be high. At last positive feelings of hope, love and compassion are expressed to the patient. However, the patient may not express gratitude in return, as one with physical illness might…
As initial expectations are revised downwards, families realize that their lives have been hijacked, with no end to the journey in sight. Anger and resentment are often first voiced directly to the patient if they refuse medical treatment. ‘The hardest part of caregiving is not knowing if what you are doing is right or wrong.’ At McLean parents are taught to blame the illness and not the person; and find support in a mantra called The Four C's: ‘I didn't cause it, I can't control it, I can't cure it – I can only cope with it’. Many remain guilt-ridden, nevertheless.
Often the family becomes isolated. Some distancing occurs as family members realize, with a wrench, that they could lose themselves in the illness. In time some relatives come to respect and even admire the patient, for showing courage with unimaginable pain.
Rightly or wrongly, doctors get a caning from the families in this book. Often the first shock for relatives is to discover that the patient isn't sick enough for treatment, because compulsory admission requires danger to self or others. When hospitalisation comes, they are dismayed to find that psychiatrists play only a small part in treatment. Relatives feel marginalised, and comment that the therapeutic model appears to be one of doctor– patient alone. They feel blamed by psychiatrists, and describe snap judgements and unrealistic advice giving.
Karp's book gives warning of what we can expect, if Managed Care crosses the Pacific. Even the best American teaching hospital discharges a patient, as soon as insurance runs out. Financial uncertainty is now one of the great stresses for American families.
Governmental family support has eroded in America since 1970, and Karp states that over one quarter of American children are now going to bed hungry. We hear of a Boston woman whose living comes from clients whom she helps to negotiate the Kafkaesque bureaucratic maze, to attain disability support. Apparently, initial denial of benefits is the rule – ‘the unschooled often take this at face value’ – and to have to fill out 30 pages of government forms is not unusual.
This book usefully complements Jules Henry's ‘thicker’ account, based on hundreds of hours with four families [1]. Karp sets out clearly what family members can expect to experience, and offers useful advice. The notes and bibliography are excellent. Recommended for patients' families and for libraries serving mental health staff.