Struggling to Do the Right Thing: Stories from People Living with Alzheimer's Disease

Abstract

The information presented in this article is meant not to provide answers, but rather to provoke thought about questions related to ethical decision making in people with Alzheimer's disease. Post (1995) suggested that: among the several most urgent questions of our time is whether human beings have in place the moral and ethical signposts that can point toward a future in which those who are so forgetful will be treated with dignity. (p. 1) Because American society places a high value on rationality and productivity, the life of people with Alzheimer's disease may be equated with hopelessness and uselessness. Thus, health care professionals have a moral obligation to rethink the assumptions that underlie their definitions of quality of life. We cannot know what should be done unless we learn to listen to the life stories of our patients and their families. Perhaps Sherry's comment best reflects how, even with devastating changes in a loved one's sense of identity, one can find ways to respect a new level of relationship: I still feel that he's [Sherry's husband] a human being, and I've tried to ensure that he has a quality of life. When I go visit him, sometimes he slips in and out of being normal. I would always hope that he's still treated with the dignity that he should have as a human being.... I guess what I'm saying is that, even though it seems weird,...there's still a human being in there sometimes, I guess there really is, and it's important to remember that. I can enjoy my husband a lot more now [that he's being cared for in a facility] than I could when I had him 24 hours a day. That was a nerve-wracking experience, especially when there were behavior problems.... He's still the love of my life.