Narrat Inq Bioeth. 2020;10(2):139-144. doi: 10.1353/nib.2020.0043.
These narratives provide intimate descriptions of the challenges, frustrations, and sometimes, the satisfaction of caring for a family member with dementia. They are presented by twelve individuals who want us to understand and possibly learn from their lived experiences. At the beginning of their journey, most describe a slow awareness that "something is seriously wrong." During the middle stage, their narratives are filled with examples of conflict and frustration as the authors try to respond with patience to behavior that "makes no sense." Finally, most learn to forgive themselves and accept 'the new normal' of this person, or their death. For some, the end of their journey is filled with regret and guilt, while others find acceptance and peace. We are privileged to be immersed in these stories, as such honest descriptions are rarely shared with 'outsiders.'
这些叙述提供了对照顾痴呆症患者的挑战、挫折，有时甚至是满足感的详细描述。它们由十二位希望我们理解并从他们的生活经历中学习的人提供。在旅程开始时，大多数人描述了一种缓慢的意识，即“出了严重的问题”。在中间阶段，他们的叙述充满了冲突和挫折的例子，因为作者试图以耐心应对“毫无意义”的行为。最后，大多数人学会了原谅自己，接受这个人或他们的死亡的“新常态”。对一些人来说，旅程的终点充满了遗憾和内疚，而另一些人则找到了接受和平静。我们有幸沉浸在这些故事中，因为这样的诚实描述很少与“局外人”分享。
