They Live On was never intended to be a book; it was written as a journal to help me make sense of the 18 months I spent as a caregiver for my parents at the end of their lives. Neither was it a diary chronicling all events related to their final days. I wrote when the spirit moved me, to help me seek clarity and to help me remember moments that seemed surreal, too beautiful or too terrible to forget. There were sadder times, and there were happier times than recorded here. There were additional visits from relatives and friends that significantly contributed to the experience. And there were too often times when I simply could not put pen to paper, so great the exhaustion and depression.
The transcription of my journal became a series of vignettes portraying the stages of caring for and saying goodbye to a loved one, as seen through the eyes of a daughter and her terminally ill parents. The grieving process is similar for any significant loss, although I believe that the intense grief of an adult losing a parent needs a stronger voice to be appreciated in our culture. Most of us will bear witness to our parents’ final days – a task for which I was woefully unprepared.
I struggled with publishing such a personal, intimate story. But as psychologist Carl Rogers observed, the most private of our stories is also the most universal. With encouragement, I came to realize that this is my story depicting the universality of the caregiving and grieving cycles – the roller coaster of loss that all of us experience. I wish I had had such a resource when I was in the throes of saying goodbye to help me better understand that the stages of loss are circular, not linear.
I apologize in advance for the tears that you may shed as you anticipate or relive your own final goodbyes on these pages. Know that others who have walked the path cry with and for you. And that you will smile again because those we have loved do live on.