THE WASHINGTON POST – When Arthur Kleinman’s wife, Joan, was diagnosed with early-onset Alzheimer’s disease, Kleinman delivered a solemn promise: As the disease progressed, he told her, he would take care of her no matter what happened, and she would always be cared for at home.
Kleinman, an eminent psychiatrist and medical anthropologist who has taught at Harvard for more than four decades, is also a prolific writer. In his uncannily prescient book, The Illness Narratives: Suffering, Healing, and the Human Condition, he argued for reform of the United States (US) health care to better serve society as a whole. A critical look at the growing chasm between medical advances and actual treatment of the ill and dying, The Illness Narratives was the first in a rash of critiques of a health-care system that favors profit over care. So early was Kleinman’s book that it appeared in 1988, before Atul Gawande, the literary patron saint of medical pathos, had begun medical school.
More than a decade later, the shortcomings of the American health-care system entered Kleinman’s personal orbit with a cruel indifference. In her late 50s, Joan Kleinman started having trouble with her vision. When the problem began to affect her driving, her reckoning of the household bills, her typing and other tasks she had performed effortlessly for years, the couple began to fear something far bigger than eyesight.
Their first appointment was with an ophthalmologist, followed by a phalanx of other specialists. And with that begins a lamentation of health care without the care, a refrain that continues throughout Kleinman’s new book, The Soul of Care: The Moral Education of a Husband and a Doctor.
“We felt trapped in bewilderment and impotence, seen by processions of specialists who seemed oblivious to our fears or indeed our personhood,” he writes.
When a Harvard colleague finally delivered the verdict of Alzheimer’s, Kleinman writes, of the nearly two hours they spent with the physician, 99 per cent was taken up with the bloodless clinical details of the diagnosis. “Almost no time, after his diagnosis was clear, went into a discussion of what for us was now most at stake: What were we to do?”
Thus tossed into the pool of more than 50 million family caregivers in the US, knowing little of what lay in store, Kleinman made his promise to Joan. In The Soul of Care, Kleinman writes with a devotional grace about the Joan he met when he was a medical student – a warm and deeply loving woman with a natural California ease. He, on the other hand, was quite the opposite: a scrappy, self-absorbed, standoffish and intense striver.
We learn a lot about Joan, and still more about Kleinman and the sentimental education he received from his wife, a master artisan for whom life was her medium. A sinologist and her husband’s research collaborator, Joan Kleinman embraced a Chinese worldview centred on incorporating a moral and aesthetic responsibility into everyday life. In some important ways, The Soul of Care is a sequel to The Illness Narratives. “Care is the human glue that holds together families, communities, and societies,” Kleinman writes. “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.”
He shores up his argument with stories: a medical resident’s despair over the speed with which she felt forced to put aside what she valued most about medicine – time spent with patients; a woman with severe liver damage who told Kleinman he was the first physician to truly listen to her full story.
Kleinman has, in effect, written two different books. One is a compelling critique of care in the US. The other is a chronicle of his journey through Joan’s decline: loss of vision; increased agitation, delusions and paranoia; repeatedly mistaking her husband for a stranger intending to harm her.
While he writes eloquently about how the experience of caring for Joan transformed him, teaching him humility and reorienting him to what really mattered, he glosses over some decisions that point to clouded judgment. Again and again, he put his wife in situations that fell far short of ideal. Well into Joan’s decline, he drove her from Boston to New York to see Verdi’s “Don Carlo,” an opera they had both loved. Joan was agitated and restless in the car. During the performance, she spoke to him at conversational volume, annoying fellow audience members so much that one man turned around, grabbed Kleinman’s hand and hissed, “Hush her up!” Still, they stayed. Afterward, tears welling in her eyes, she said to her husband, “Wasn’t that wonderful!”
Gratification like this could be what kept propelling him toward such outings. In the summer of 2010, the year before Joan died, he took her to their vacation home in Maine. After just a few hours, she was shaking with fear, panic and confusion. “She no longer knew where she was or why I had brought her here,” he writes. He immediately drove her home. Once in the car, Joan started fidgeting with the door handle on her side, undoing the lock. Fearing she would open the door while he was driving, he held both her hands in her lap with his right hand and steered with his left.
These decisions – to take her to the opera or to Maine, to keep her at home when she clearly needed more help than he or the aide could give – could have given rise to deep introspection about the forces that drove him at the time. Kleinman’s story suggests that not only did Alzheimer’s cause Joan to lose her mind but, driven by love and magical thinking, her husband lost a bit of his as well.
Also questionable, at least for this reader, is his judgement about how far to go in recounting Joan’s downward spiral. Learning of her urinary incontinence, followed by fecal incontinence, felt somehow wrong, as did episodes of acute paranoia and violent thrashing. If writing about this was meant to be instructive, it wasn’t. According to her husband, Joan was a very private person when it came to intimate matters. The revealing of details like these is a striking negation of her privacy – indeed her personhood.
It could be that this man, who loved his wife profoundly, was still, several years after her death, so shaken that he was not ready to write her story – or theirs. In the experience of caring for her, he might well have gained a bit of his wife’s soul. But while the chronicle of the stripping of hers is heartbreaking, its lessons are surprisingly few.