I’d stumbled through 18 months of caregiving without resolving my questions about my rights, duties, authority and entitlements as caregiver to a terminally ill patient. I relied mainly on a sense of outrage, indignation, commitment and protectiveness to sustain me.
Throughout the process itself, I had no time or energy to invoke legislated, approved or negotiated patient’s rights or standards of care that might empower caregivers such as me to exercise or express his will over the care received by his patient.
All I could do was keep moving forward as best I could because there was never a moment to be squandered in parsing out rules and policies. It wasn’t until my caregiving duties terminated with Shearlean’s death that I could reflect on my experience. And though I was pleased with what I had accomplished and felt I could not have done more or better regarding her outcome, I continued to be disturbed about how difficult caregiving had been for me and how stressful the healthcare system had been on the patient. Surely, I’ve mused many times, things could be improved. And just as surely, I can’t be the only person thinking like this.
When this gnawing, aching feeling about the state of caregiving and the healthcare system’s deficiencies didn’t lessen with time, I decided to write this book. With a well-documented story, I hoped I might spur needed changes—or at least let other caregivers know they aren’t alone when they feel they’ve been abandoned, ignored, mislead or dismissed.
But for change to happen, I thought I would need to hand the healthcare system a journalistically compiled record of care and treatment full of names, places, times, dates and documented circumstances. This they could not disregard as the vague complaints of a disillusioned and grief-stricken spouse. Read more about Waking Up Dying.