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ELEVEN: Advance Directives and End-of-Life Decision Making in Alzheimer Disease: Practical Challenges
- Johns Hopkins University Press
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mc h a t e r e l e v e n Advance Directives and End-of-Life Decision Making in Alzheimer Disease Practical Challenges Winifred J. Ellenchild Pinch, R.N., Ed.D. Practical challenges in palliative care,advance directives,and endof -life decision making in the context of Alzheimer disease (AD) encompass all individuals in these circumstances: the person who has been diagnosed as well as those who serve as caregivers, both professional and lay persons, and anyone who in turn is in contact with them. As an advocate for family-centered care and joint decision making, I find it is important to understand the perspective of the family, especially when individuals with AD are no longer able to make decisions for themselves. Some of the most salient points are included here in the form of a letter written by a spouse caregiver to her sister. This spouse was intentionally left nameless to emphasize the invisible nature of caregivers, as we have come to expect selfless devotion in this role. The caregiver is the wife of Michael, who was diagnosed with AD several years ago. But that, too, is a role, not her total identity. Dear Rachel, I have finally managed to squeeze in some time to write to you—being able to sit down and sort out some of the situations I have been dealing with has not been easy to accomplish. But, it seems like it may work out this afternoon. I wanted to write rather than telephone and simply chat because there have been such serious issues that have arisen lately. If I can organize my thoughts to share them with you, I might be able to think more clearly about them for both Michael and myself. Your responsiveness to my needs during this very trying time in my life is very important and I want you to know that. Michael’s diagnosis with AD was one of the most devastating events in our marriage. Since wives do tend to outlive their husbands, I had this nagging thought in the back of my mind as Michael and I approached retirement, that someday I might be in a position to care for him. As I considered the usual risk factors , I envisioned the possibility of a very serious heart attack that might restrict his activities, or that he might be incapacitated by a stroke. Since my experience with my own mother’s diagnosis of Alzheimer’s, I guess I really feared my own risk for dementia rather than Michael’s developing such a condition. At first responsibilities were not too difficult—occasional forgetfulness seemed to be an annoyance rather than a problem, looking back on things. Then the forgetfulness became more serious. It wasn’t simply forgetting where he put his keys or if he paid the electric bill. He began to forget how to do things, and we eventually got the diagnosis of Alzheimer disease. Obtaining some definitive information was certainly not an easy path to negotiate. Michael’s primary care physician was not in tune with my description of events and insisted that I simply needed to adjust to my husband’s aging. But I persisted—it took a lot of energy, and of course time. We finally got the appropriate referral but it still took quite some time again before the specialist was able not simply to tell us his diagnosis , but also to talk with us and relay what Alzheimer’s would mean in terms of our lives and future plans. They told Michael and me together , since I said I would want to know my own diagnosis under these circumstances, and Michael seemed to take it quite well. As Michael’s needs become more encompassing, I am having more and more difficulty separating when I need to be his caregiver from those times when I want—and need—to be his wife. Perhaps I should just forget about being his wife altogether. It’s not that easy, however. I need his love and affection and loss of that emotional piece is exceedingly difficult to adjust to. Mostly I need to be a caregiver, decision maker whenever 182 Clinical Ethics Issues [44.213.99.37] Project MUSE (2024-03-19 05:49 GMT) momentous events rain down upon us—as they now seem to pelt us like a thunderstorm as opposed to the gentle rain of problems we dealt with earlier. Although you do not get to...