Arthur Kleinman—Rabb professor of anthropology, professor of medical anthropology, and professor of psychiatry—crosses disciplinary and cultural boundaries (he has long worked in China) to explore and enrich the dimensions of care beyond the familiar domains of health technology and finance. In The Soul of Care: The Moral Education of a Husband and a Doctor (Viking, $27), his most personal work, he looks inward, to the demands imposed by, and the caregiver’s response to, his late wife’s catastrophic dementia. From the prologue:
“Get out! Get out!”
My wife, Joan, is screaming, and hitting out wildly at the stranger in her bed. She is greatly agitated and frightened. “Get away from here. Get out!”
But the man she perceives as a stranger is me, her husband of more than 40 years. Joan has just woken up from a midday nap. It is summer 2009 in Cambridge, Massachusetts. We are in the bedroom of the home we have lived in for 27 years.
I try to keep my voice calm and hide the panic rising inside me. “I’m your husband, Arthur. Don’t be so upset, I’m here with you!”
“You are not! You are not Arthur! You are an impostor! Get out! Now!” she yells, shaking and intensely alert, like a trapped animal.
I try in all the ways I can think of to calm her and to prove to her that I am indeed her husband, but she insists, denying who I am, growing more and more adamant, more and more upset. I begin to wonder if this is real or if I have woken up in a nightmare. Joan feels only terror, caught in the grip of a delusion that frightens her to the core. This has happened once before…but still I feel totally unprepared to deal with her delirium.
Joan is almost blind and suffers dementia as a result of an atypical kind of early-onset Alzheimer’s disease.…The affected person systematically misperceives those close to her and even the physical space she is occupying as unreal and fake. As in Joan’s case, it most often is episodic, short-lived, and readily forgotten, but for those close to the sufferer, it can be world-shattering—as if a bond that has taken decades to forge can be broken in an instant.
I’m a trained psychiatrist. I should have the tools to deal with this. But right now, in this moment, I am a shocked and devastated husband. This episode, like the first, lasts a few terrible hours. During that time,I have to retreat to another part of our house, and wait until it burns itself out and she has returned to a calm state. I am also, however, a caregiver—Joan’s primary caregiver. Several times I try to engage her in normal conversation, but she rejects me. Finally, I make believe I am someone else, there to help her.
“Well, get rid of this impostor and find my real husband,” she implores.
