Stauros' Notebook
Stauros Notebook is a quarterly publication of Stauros USA
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Amy L. Florian
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Autumn, 2002
Alzheimer's Chronicles Frederic M. Hudson Copyright 2002 The Hudson Institute of Santa Barbara. Reprinted with permission. I am sixty-seven, and chairman of a leadership training company I founded in 1986. Before that I was a college professor, dean, and founding president of The Fielding Institute, a graduate school in human development and clinical psychology. My cognitive field is "adult development," and ironically, when I was diagnosed with Alzheimer's Disease (AD) about six months ago, I was beginning a book on the optimal developmental possibilities of successful men and women in their sixties, seventies, and eighties. It was my amazing wife who, after observing me struggling with memory slippage, got me to experts who, through a PET scan, arrived at a definitive diagnosis of AD. I now live and work out of the home and carry on much as before, but with lowered energy, fewer goals, and a fierce sense of racing against time. Alzheimer's is a progressive, degenerative process which impairs and destroys cognitive processes in the brain: reflective capacities, mental recall, and spatial orientation. The literature speaks of the disease as having three phases: early, middle, and late. I am somewhere between the early and middle phases. Here is my report of how AD feels, and how it affects my life. 1. Lowered stamina All my life I have had high energy - a human "doer" immersed in activities. I now have considerably less élan vital and I find myself conserving the energy I have rather than feeling inexhaustible. I rest and nap more, and I initiate fewer activities than I used to. This means I need to prioritize more carefully than ever before. Strategic thinking is essential for all of us, but absolutely essential for terminal patients who want to and are able to make the most of their time. 2. Loneliness I feel lonely much of the time, as if I'm locked in a room in which this disease is gradually unplugging me from the world as I've known it. My long-term memory is reliable for the most part, but my short-term memory can come unraveled in any parking lot when I can't find my car. Then I panic and feel intensely alone because I know that in time I will be cut off from the past, the present, and the future, and left dangling in inner space. Already, I feel a decreasing ability to turn within myself and get recognitions and dialogue from my own reflective processes. Who am I, if I can't do that? 3. Estrangement I'm experiencing a gradual estrangement from my social roles: my work connections and identity, my wife and family, and my friends. I sense an increasing chasm between my life and everything else, such as shopping, gardening, taking trips or projects. I find myself withdrawing from social contacts and interactions even though I am not consciously choosing to do so. 4. Difficulty with abstract thinking My Ph.D. is in Philosophy, and until now my mind has been much better at abstract thinking than with concrete musings. Now it seems to have reversed: The "forest" is blurry, but in many ways I'm keener on the "trees." 5. Difficulty with noise, confusion, and light I have reduced tolerance for noise, confusion, bright lights, or sunshine. My eyes and ears seem more sensitive and bothered by these things. There is something about this disease that is making me much more sensitive to intense sounds and sights. 6. Increased anxiety As time goes by, I notice a steady increase in anxiety. It is more "existential anxiety" than some clinical type, but it makes me less sure of myself and more dependent on others. I don't like it one bit, but I don't know how to stop it. 7. Disorientation This is one of the more difficult realities I wrestle with: remembering who I am, with whom I am, what I'm doing, what the time frameworks are, and what I'm supposed to be doing in a few moments, hours, or days. The bottom has fallen out of my unconscious sense of continuity that worked like an automatic pilot. Now I use a pocket notebook or Palm Pilot to keep track of promises, agreements, meetings, and plans. Still, these coping mechanisms are worthless if I forget to look at my notes. 8. Increased investment in alone time It may be because I am alone at home more than anyone else in the family, but I've grown to like being alone. I meditate, play music, garden, but mostly just waste time creatively. I don't think of this as "retirement" because I feel I'm in a race against time, not the golden years. I'm engaged with strategic thinking, sorting out my ever-changing top priorities. 9. Increased interest in music and art Although my ability levels in music and art have not changed, I am drawn to those mediums more than ever before in my life. I compose music and feel alive when I am playing the piano. I've taken up acrylics, and find pleasure in creative play with colors and forms. I used to teach a philosophy course in "Nondiscursive Symbolism," meaning non-verbal forms of communications: art, theater, sculpture, architecture, music, dreams, visions, nature, etc. Those are some of the directions that have increased as important ways to remain vital and creative. 10. Increased enjoyment with my wife and children My marital relationship is better than ever. Fortunately for me, Pam is able to spend considerable time with me and we are celebrating each other more than ever. I thought we had a fantastic relationship before, but we are finding amazing new ways to listen, talk, adventure, touch, and learn as a couple. Much is the same in my relationships with Christopher, Mikee, and Charlie. I have more quality time with them, usually one-on-one, than ever before, and we all seem to benefit. Many times I have said that adult development is a series of trade-offs over time. When you have a serious disease you have to seek new ways to balance the love of life with daily coping mechanisms. In some strange way, it even seems that the disease is a gift.
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