“The home is not a clinical environment.” That line is from my book, The Caregiver’s Secrets. The thing I remember most about my twenty plus years of being a family caregiver was the lack of really useful instruction. Oh, there was plenty of advice, summaries of survey data, expert opinions on this or that, but relatively little information that I found to be immediately and reliably useful. That was the main reason—after my caregiving journey ended—that I decided to create a grassroots organization dedicated to providing practical, everyday, problem-solving guidance to caregivers.
There is plenty of commentary on caregiving issues, but most of it is far removed from the hands-on demands of the everyday caregiving role. The place where family and home intersect caregiving is complex. No two caregiver/recipient relationships are alike, and no two caregiving ecosystems (households) are alike. Resources and supports vary. No one size fits all.
Culture is paramount. And I don’t mean the big ‘C’ culture of society. I mean the micro-culture of family relationships, things known but not shared—secrets. Intuition and judgment play a bigger role in decision making than learned—or even teachable—routines. This is the region clinical approaches fail to penetrate.
That isn’t to say this secret region is unreachable. In my caregiving experience, the most valuable guidance usually came from informal, non-expert sources. It focused on approaches to solving real, immediate problems with the understanding that improvised application would be required. The relentless flow of small, unending, everyday problems unique to caring for a loved one, is the source of much caregiver angst, frustration, and despair. Helping family members deal intuitively with persistent, practical, everyday challenges is where the rubber really meets the road.