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20 I The Family Caregiver Partnership in Hope two The first task of dementia ethics is to secure the underpinnings of care for people who are affected by progressive dementia. Once care is in place, the issues that emerge in the natural course of the disease can be addressed in an informed manner. Informal family caregivers are vital in the culture and practice of care. Building on the previous chapter, I wish now to ground the discussion of care in a lived experience. Edna Mae Kincaid had been caring for her husband, Caleb, for a number of years. She gave the following testimony as part of a panel presentation in Greenville, South Carolina, on May 26, 1999, and moved many in the audience to tears. When I asked her if I might include it in this book, she agreed, and suggested that I use real names to commemorate her partnership in hope with Caleb, who has since passed away. Edna’s testimony is followed by an analysis of the moral and spiritual basis of caregiving, the reverse tendency to make outcasts of deeply forgetful persons, and the role of the family and society in the modern “epidemic” of dementia in an aging society. Edna and Caleb I Good morning. Before I start, I would like to do a couple of things. First, since he’s the one I’ll be talking about this morning, I’d like you to meet my husband, Caleb Kincaid [slide of Edna and Caleb on their wedding day]. . . . I have to confess that my first reaction, when I heard Chris’s mes- sage on my answering machine asking if I would like to be on the panel, was “I don’t think so!” Even though I can talk your ear off oneon -one, I find it difficult to talk before a large group. But a little while later I realized I had to do it. I had to do it for Caleb. You see, today is his seventy-sixth birthday, so Happy Birthday, my love, this one’s for you. In spite of being a rather quiet, shy person, Caleb was an excellent speaker. Once when I was laboring over a presentation for work, I asked him how he made it look so easy. He told me it was because he talked about what he knew and what he cared about. So that’s what I’m going to do today. I would like you to know what our life was like before Caleb started showing the ravages of Alzheimer’s, I want you to see how it changed our lives over the past ten years, and what life is like for us today. . . . We were on the go all the time. We went dancing every Friday night. I taught him how to twist and he bought me cowboy boots and taught me how to do the Texas two-step. He taught me to enjoy sailing , and we sailed through the Florida Cays and made several crossings to the Bahamas. I traveled with him when he attended conferences and visited universities to recruit students for his school. If we weren’t off on a trip somewhere, he planned day trips to see something interesting he had read about in the paper, like the oldest and biggest white oak tree in the world, or an exhibit at the Smithsonian. . . . During the latter part of 1989 I started noticing changes in him. He was uncharacteristically irritable and started to complain about his work. He told me he was tired of the responsibilities of running the school and didn’t want to be tied down anymore. So the next spring he gave up his administrative duties but continued to teach. It wasn’t long before I noticed he was laboring over his lesson plans for hours. Then he started complaining about the “kids,” as he always called his students. He said they were starting to get on his nerves, and when that class graduated, he stopped teaching. He lost interest in traveling, particularly anywhere overnight. We seldom went dancing anymore and we no longer talked about the plans we had made for his retirement. He started misplacing things, his keys or his checkbook, and he would accuse me of hiding them from him. Caleb talked to his doctor about having trouble with his memory on several occasions. The first couple of times the doctor just sloughed it off. Finally, Caleb told him he thought his memory loss...

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