I love to read. I developed my affinity for books as a young child, when I would accompany my father on his trips to the library. A joke in my family is that when I die, I want to be buried under a library. That way, my ghost will always have a good book nearby.
Recently, I read “The Soul of Care: The Moral Education of a Husband and a Doctor” by Dr. Arthur Kleinman, an eminent professor of psychiatry and social anthropology at Harvard Medical School. The book traces the development of his career in academic medicine and his relationship with his wife, Joan, a “refined, elegant, warm and deeply loving” woman whose “good words and good acts” impacted others in such a way that they “sanctified the world.”
Kleinman defined Joan as the “glue” in the family, the one who kept things “humming.” She was vital to his successful career. She was the primary carer in his life and in the life of their family. He admitted that he had no clue how to take care of himself or his family.
What compelled me to read the book were the parts that chronicled his journey as a caregiver. In her late 50s, Joan experienced symptoms that were later diagnosed as early-onset Alzheimer’s. During her 10-year battle with the disease, she experienced loss of vision, became increasingly agitated, delusional, and paranoid, and displayed hostile and aggressive behaviors toward Kleinman, including her belief that he was a “stranger” and wanted to hurt her. Their story illustrates the heart-wrenching reality that many caregivers realize: The person you love often becomes a shell of the person you knew.
In my family, a similar reality exists. My wife and daughter have Huntington’s disease, which can involve the following symptoms: memory lapses, depression, and mood swings, including irritable and aggressive behavior. I wanted to know what to expect and how to cope when faced with changes in the one you love.
What Kleinman shared was not a surprise. Caregiving is exhausting. Eventually, he wrote, it reaches the point where the “untrained family caregiver is overmatched.”
Knowledge is power, which is one of the reasons I love to read, because the more I understand, the better prepared I can be to deal with the intensive experiences I will probably undergo in my life as a caregiver.
I also read the book to be inspired. And I was. The love Kleinman had for his wife was heartbreakingly beautiful. His love was transformed: At the beginning of the book, he was the one being cared for in the relationship. After she became ill, he became the carer. Like a mirror, he reflected all the immense love and exquisite care he had received from her back to her.
That lesson — to grow in sacrificial giving of yourself — is at the heart of what makes Kleinman’s book so invaluable to caregivers. “There is this existential thing about caregiving,” he wrote in the epilogue. “If you allow it to take you over, you find within yourself a tender mercy and a need to act on it.”
The book also points out a sad reality: The healthcare system is broken when it comes to the levels of care that humans deserve. “The United States,” Kleinman writes, “… has gone through what pundits call a national debate on health care, with hardly any mention of the nature or worth of caring. … Care is the human glue that holds together families, communities, and societies. Care offers an alternative story of how we live and who we are. But it is being silenced and diminished in value, in the United States and around the world, sacrificed on the altar of economy and efficiency.”
Statistics show that the number of caregivers is growing. A recent article in The New York Times stated that the number of adult caregivers in the U.S. grew by 20% in five years — from 43.5 million in 2015 to 53 million in 2020. Meanwhile, one of the destructive results of the pandemic is that more women than men are leaving the workforce to shoulder caregiving responsibilities at home. These growing numbers illustrate that change. What Kleinman refers to as “a moral movement” for care needs to occur.
The importance of this movement can be demonstrated by imagining what is in store for all of us as we age or deal with nagging or serious health issues. The quality of care we receive through the healthcare system or from family caregivers will be equivalent to the amount of time, energy, and resources our healthcare and political leaders invest into understanding that caring for others is a human right. Thus, it follows that not improving the quality of care for all is a human wrong.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
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