The Ordeal of Practicing Care

To the Editor:

As the family caregiver for more than sixteen years for my husband, who suffered a severe traumatic brain injury that left him quadriplegic and with major cognitive and medical problems, I read Bruce Jennings's article ("The Ordeal of Reminding: Traumatic Brain Injury and the Goals of Care," Mar-Apr 2006) with admiration and frustration. Admiration for his eloquence and sincerity; frustration for his idealistic expectations of family caregivers. Why should we, who already have such heavy responsibilities, bear the burden of making up for all society's failures to provide the supportive environment persons with TBI need? Who will create the environment in which we too might be allowed to flourish?

In her commentary ("Traumatic Brain Injury and the Goals of Care," Mar-Apr 2006), Marilyn Martone refers to the increasingly inadequate rehabilitation services available for TBI patients (not to mention the usually perfunctory counseling for their family caregivers). Many people lack the financial and emotional resources needed to establish a basic stable environment, much less an environment that permits nurturing the new self of the person with TBI. Martone's comments are an important addition to the story.

But there is even more to be said. In my experience, family caregivers try to do exactly what Jennings wants them to do-they try to help their relative with TBI make sense of her new personhood, adjust to different capabilities, learn to get along in the world as she is. But they face huge barriers, and one of them is the person with TBI herself. Just as a new parent learns that an infant is not a blank slate but has a personality and-soon enough-a mind all her own, the family caregiver must confront the reality that the person with TBI has definite but sometimes unattainable desires and aspirations, and does not easily accept even the most sensitive family attempts at "trusteeship."

The second major barrier is the health care system: not just the financial barriers that constrain services, but the dismissive and condescending attitudes of professionals of all disciplines who are typically intolerant of the emotional outbursts, noncompliance, and erratic behavior that often characterize TBI. Beyond the initial rehabilitation phase, most persons with TBI are treated not by specialists, but by generalists in the community. There are understanding and compassionate professionals who know how to work with TBI patients, of course, and some who even know how to involve families productively, but in my experience they are truly rare.

The final barrier is simply the complexity of family life-earning a living, managing a household that now may include home care aides, taking care of legal matters, responding to other family members' needs, being constantly aware of the unpredictable nature of TBI-that can exhaust even the most selfless family caregivers. Yes, persons with TBI need more than comfort and safety, but those are preconditions to everything else. I don't need to be "reminded" that my husband is a valuable and well-loved person who requires an extraordinary level of care and attention to both body and mind. Would someone remind the rest of the world? I'm too busy.

Carol Levine

United Hospital Fund

To the Editor:

I have a dream. In it, the personal attendant entering my husband's room names herself, even if she has been entering his room almost daily for the last six years. She waits for him to calm down-to end the swearing that might have occurred because he was startled. She engages him quietly, with respect. Her job is hard, but she knows her work is valuable, and she is well paid for it.

My husband's family comes to visit him regularly as well. When at his side, they are not rushed; this visit is not part of a greater vacation where a dutiful one-hour drop-in was scheduled. In my dream, the world slows down so that my husband can engage it at his own pace. Persons like him have a place that is not far away, secluded in an institution; in my dream, we all mingle.

In the real world...