"She is really lost to us as the kid that we knew and the relationship that we had," the woman told interviewer Prof. David Karp (Sociology). "This is gone. We are grieving the final loss. And they [doctors] said to me, 'She might come back.' And I said, 'I can't do that. I have to grieve that she is totally gone and that she's not coming back in any sense that we knew her.'
"Anything that I get from this point forward is a gift and not a disappointment," she added. "I lost this kid....I sob for my loss."
The woman is one of 60 people Karp interviewed for his recent book, The Burden of Sympathy: How Families Cope with Mental Illness, which explores in-depth the ordeal of caring for a family member or loved one suffering from depression, manic-depression or schizophrenia.
Karp's study reveals striking similarities in the experiences of caregivers: feelings of shame, fear, guilt and powerlessness in the face of a socially stigmatized illness; frustration in navigating the complex network of bureaucracies that govern the mental health system; and most of all, difficulty in balancing their devotion to the mentally ill loved one with regard for their own health and well-being.
The book fills a great need, Karp says, because it "gives voice" to the millions of family members and friends caring for the 25 to 30 million Americans suffering from mental illness.
"As a sociologist, it is very important to me to create a forum for the marginalized in our society," said Karp. "The truthfulness in these stories is comforting and liberating to readers who are in similar circumstances. They realize they are not alone in their feelings."
Karp said caregivers for the mentally ill face unique challenges. Many mentally ill people do not believe they are ill or in need of care, he said, and resist taking their medication. Some see caregivers not as worthy recipients of their gratitude, but rather as the enemy.
"The stigma of mental illness forces many caregivers to hide their role as caregiver, further isolating them from the community."
Prof. David Karp (Sociology)
Karp found one of the most compelling, universal experiences among caregivers was their difficulty in getting help from the mental health care delivery system.
"Caregivers had to go through a nearly impenetrable maze to secure insurance payments," he said. "The standards for the mentally ill to qualify for hospitalization are incredibly high. And the patient confidentiality works in such a way that the person responsible for caring for the mentally ill person often does not have a diagnosis or any official information on the illness or treatment."
Karp hopes The Burden of Sympathy will cause Americans to rethink societal attitudes about caring for others.
There is "an American ambivalence about caring," he said. "On one hand, we have the 'do your own thing' mentality and at the same time we feel an obligation to put family first. Caregivers juggle the questions, 'What do I owe someone I care about who is in trouble and what do I owe myself?'"
Karp contends there should be an additional question: What does society owe to me and to my family in trouble? While tearing down the mental institutions of the past and returning people to the community might have signaled progress in the way we look at mental illness, says Karp, now we are placing too much burden on and expecting too much from family members.
Like any system, the family will simply break down when too much is demanded of it, Karp said. He maintains that societies must care for and nourish families to ensure that parents, spouses, children and siblings can extend compassionate care to each other during moments of vulnerability, crisis and illness.
Karp said The Burden of Sympathy has an "intimate connection" to his 1995 book, Speaking of Sadness: Depression, Disconnection and the Meanings of Illness. The latter told the story of ill people, but Karp said, "a second half of the story had to be told. The story of the heroism, pain and complexity in the caregivers' lives."
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