The Sudden Caregiver's Roadmap

Know the Terrain

When I first became a sudden caregiver, I studied everything I could get my hands on, with the goal of being the best caregiver possible for Joel. I soon stumbled upon the idea that researchers believe caregiving happens in phases. If that were true, I thought, how would I break our caregiving journey into phases that made sense? I tried to identify what constituted a "phase" and what signaled change from one phase to the next. Then I ran this by other caregivers to see if it resonated. The diagram on this page is the central (and simplest) framework of what I am calling The Sudden Caregiver's Roadmap. 

Think of it as a roadmap for your caregiving journey.

For my four phases, I use the acronym C-A-R-E:

C – Crisis is chaotic, and the main action is to control whatever you can about the events unfolding. Eventually, crisis evens out and things stabilize. Stability signals the next phase, As Normal As Possible.

A – As Normal As Possible is the underlying goal of your caregiving journey. You want to get to As Normal As Possible, as soon as possible, and stay there as long as possible. It is exactly what it sounds like, the “as possible” being an all-important qualifier. In time, As Normal As Possible ends at a precipice - an event that signals a move to the Resolution phase.

R – Resolution ends the care-receiver/caregiver partnership, either through another crisis, remission or recovery, or the finality of death. The end of the care-receiver/caregiver partnership requires reentry for the sudden caregiver, taking up life again without caregiving.

E – Evolution is the caregiver’s period of reentry, reintegration: evolution away from the caregiver role and toward a life that has been forever rearranged by the journey just concluded. Evolution is ongoing. In many ways it is a never-ending story. As time goes by, however, life beyond caregiving spins slowly away from the past and toward the here and now.

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Caregiving takes place across time and that time unfolds in phases. When I originally encountered this idea I found it so heartening and hopeful that it made me cry.

Copyright, 2019. Graphic design by Complex Stories.