Jan 9, 2014

Arthur Kleinman on Alzheimer's Caregiving

Yet, for all the efforts of the helping professions, caregiving is for the most part the preserve of families and intimate friends.

What Really Matters

Arthur Kleinman on Alzheimer's Caregiving
Arthur Kleinman
My own experience of being the primary caregiver for my wife, on account of her neurodegenerative disorder, convinces me yet further that caregiving has much less to do with doctoring than the general public realizes or than medical educators are willing to acknowledge.

Caregiving is about skilled nursing, competent social work, rehabilitation efforts of physical and occupational therapists, and the hard physical work of home healthcare aides.

Yet, for all the efforts of the helping professions, caregiving is for the most part the preserve of families and intimate friends, and of the afflicted person herself or himself.

We struggle with family and close friends to undertake the material acts that sustain us, find practical assistance with the activities of daily living, financial aid, legal and religious advice, emotional support, meaning-making and remaking, and moral solidarity.

About these caregiving activities, we know surprisingly little, other than that they come to define the quality of living for millions of sufferers.

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I LEAD HER ACROSS THE LIVING ROOM, holding her hand behind my back, so that I can navigate the two of us between chairs, sofas, end tables, over Persian rugs, through the passageway and into the kitchen. 
I help her find and carefully place herself in a chair, one of four at the oval-shaped oak table. 
She turns the wrong way, forcing the chair outward; I push her legs around and in, under the table’s edge. 
The sun streams through the bank of windows. 
The brightness of the light and its warmth, on a freezing winter’s day, make her smile. 
She turns toward me. 
The uneven pupils in Joan Kleinman’s green-brown eyes look above and beyond my head, searching for my face. Gently I turn her head towards me. I grin as she raises her eyebrows in recognition, shakes her long brown hair, and the soft warmth of her sudden happiness lights up her still strikingly beautiful face. 
“Wonderful!” she whispers. “I’m a Palo Alto, a California, girl. I like it warm.”

Also read -- Caregiving: the odyssey of becoming more human

*Arthur Kleinman is a prominent American psychiatrist and is the Esther and Sidney Rabb Professor of medical anthropology and cross-cultural psychiatry at Harvard University.

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Original content Bob DeMarco, the Alzheimer's Reading Room