Based on: Pieters-Hawke, S., & Flynn, H. (2004). The right to self-determination. In Hazel’s journey : a personal experience of Alzheimer’s (pp. 71-84). Sydney : Pan Macmillan.
As people grow older, one of the things that they may fear is the inability to make their own choices about how they want their lives to be.
In this story, Hazel is a woman who has just been given a diagnosis of Alzheimer’s disease. While she is not in any way dramatically different in the day after knowing the diagnosis (versus the day before the diagnosis), Hazel is nevertheless more apprehensive, after the diagnosis, about a future where her sense of self will be eroded away.
Sometimes one wonders whether there is any purpose in knowing the diagnosis of a disease for which there is no treatment. Because whether one remains blissfully unaware or fearfully apprehensive, the disease will unfold the same way, isn’t it? Hazel’s story tells us that an early diagnosis of Alzheimer’s disease gives people an opportunity to provide instructions for those situations in the future when they would no longer be able to make decisions. It helps family and friends know what they must do without feeling guilty or anxious. One of the important decisions that Hazel communicated to her family was that she did not wish for her life to be prolonged simply for its own sake. She had no wish for medical interventions to keep her alive when she reached a state where she was of no use to herself or to anyone else. The ability to articulate such desires and to ensure that everyone will understand and follow them is the main benefit of knowing early the diagnosis of a disease like Alzheimer’s.
Much of what we fear may never happen. Whatever the situation we are in, we have the ability to create in our own minds the kind of future we want. We have the power to construct, if we so choose, our own narratives of what our lives will be in the future as we age. These mental constructs can be safety nets that allow us to move bravely towards an uncertain and potentially fearful future. We must learn to exercise this cognitive choice while we can.