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(Neal Cresswell/Neal Cresswell19th July 09)
(Neal Cresswell/Neal Cresswell19th July 09)

The Globe Essay

Health care's missing care Add to ...

Caregiving is understood by economists as a "burden," by clinical psychologists as a "coping process," by health-services researchers in terms of health-care costs, and by physicians as a matter of clinical competency. But, for many people, caregiving is a foundational component of moral experience. It is a practice of acknowledgment, empathic imagination, witnessing, responsibility, solidarity and the most concrete forms of assistance. It is this moral aspect that makes caregivers, and at times even care-receivers, feel more "present" - and thus more fully human.

But, aside from skilled nursing, rehabilitation efforts by occupational and physical therapists, and the practical assistance of social workers and home health aides, caregiving, especially for victims of health catastrophes and end-stage conditions, has relatively little to do with the contemporary practice of medicine.

To illustrate this point, I draw on my personal experience as the caregiver for my wife, Joan Kleinman, who suffers from a severe neurodegenerative disorder that has impaired her memory and motor functions, restricting her independence. I wake her up in the morning, assist her in toileting, bathing and dressing, make us breakfast and help her feed herself. I assist her in walking, placing her in a chair and getting into our car. I am with her nearly all the time to protect her from injuring herself, because she can neither see nor navigate safely on the street or in our own home.

I read the newspaper and books to her, explain stories on the TV and select music for her to listen to, and make telephone calls for her to our children and grandchildren. I prepare lunch and dinner and help her eat; and I do all the things required to get her ready to go to bed at night.

Of course, our children, my mother, my brother and others call and help when they can, and several times a week we are assisted by a professional home health-care helper who does the washing, cooks several meals and spends the daytime hours with her.

Joan herself does as much as she is able to do. She rarely complains and, except for an occasional agitation that is beyond her control, she struggles to enjoy life and usually succeeds in doing so. In this and several even more crucial ways she is her own caregiver. She keeps up her part in our conversations, emotional exchanges and moral relationship.

It is disturbing to witness the deterioration of a once elegant, intellectually lively and highly independent companion of more than four decades. But our emotional reactions, from frustration and anger to sadness, have been cushioned and sublimated by our work, the long rhythm of our days together and, above all, the support of family and close friends. That concern and responsibility for us are as much a part of caregiving as all the mundane practices I have listed, and amount to moral solidarity with our struggle.

I give this personal sketch because it is the best I can do to illustrate what caregiving entails, and why it is so crucial to everyone's life - and to the human condition more generally. Caregiving, as illustrated by our case, includes what happens when hope and consolation are abandoned, when theodicy ends and when all there is to do is to be present with the sufferer, sharing his or her suffering by simply - and usually silently - being there.

THEORY AND REALITY

What is the status of caregiving for health catastrophes and other serious conditions in medicine today? While medical educators say it is still central to what it means to be a physician and point to courses and practitioners who teach the art of caregiving to students, the on-the-ground reality is much more uncertain and fragile.

Most physicians, apart from primary-care providers, do little in the way of hands-on caregiving. Hospice doctors are caregivers; physicians who routinely deal with the end of life, such as oncologists and cardiologists and nephrologists and gerontologists, are surrounded by caregiving opportunities, yet few take part in its nitty-gritty - leaving the practical assistance and emotional tasks to nurses, social workers and the patient and his or her network of support.

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