My Sister Made Her End-of-Life Wishes Clear. Then Dementia Took Hold

September 19, 2016

(STAT News) – It’s why she insisted that if incapacity enveloped her and hope fled, she wanted her life to end. Yet as my sister’s illness progressed, something entirely unexpected happened. Her demanding nature softened. She seemed to enjoy life more. Was it because she could no longer remember the experiences that had troubled her for years? Or had she let go of the past? Was it because she had become apathetic — a symptom of FTD? Or had she learned how to live, happily, in the moment? It seemed she had entered a different dimension of human experience — the world of dementia, where a different set of rules applied. But how were those of us who lived outside that dimension supposed to follow her? How were we to know what she was really feeling, what she really wanted, in her altered state?