Opening the Soul’s Door:Caregiving
EARLY PRAISE FOR LEANING INTO SHARP POINTS
“Stan Goldberg brings wisdom and personal experience as a caregiver and hospice volunteer to this compassionate and honest guide to providing care for one who is chronically or terminally ill. Written from the perspective of both the caregiver and the one who is receiving the care, it is a sensitive, rich, and often compelling resource.”
– Andy Miller, MHSE, MCHES, Executive Vice President of Mission, LIVESTRONG, LANCE ARMSTRONG FOUNDATION
Caring for anyone who can’t care for himself opens a door to your soul that I don’t think is opened by any other activity. The person who allows you to do so is saying, “I’m totally vulnerable and I’m placing myself in your hands.” After eight years of caregiving, I’m still learning and, I hope, still growing.
You have the same opportunity with your loved one. If you’re open to the experience, you’ll learn about yourself, death, and, most important, life. But to do that you must be willing to lean into the sharp points of caregiving.
Tibetans say that, to get over the things you fear most—the sharp points of your life—bring them closer instead of pushing them away. It’s an idea that many people in Western societies view as counterintuitive. For example, some try to hide from the sharp points of aging by glossing over them, which has the same degree of success that a new coat of paint on an old car has in stopping the car’s engine from sputtering. Some who have lost physical or cognitive abilities grasp at what is gone, doing little more than increasing their suffering. And faced with death—probably the sharpest point of all—we hide from it as if it were a tyrannical schoolteacher coming to discipline us. It is always our choice whether to follow the ancient Tibetan advice.
The poet Rainer Maria Rilke thought bringing the sharp points in life closer was an opportunity for healing. He said our greatest fears are like dragons guarding our hearts. Few dragons are as intimidating or as capable of hiding our wisdom from us as long-term caregiving. Pushing away the sharp points of caregiving is like covering them with a permeable membrane, something porous enough that they emerge at unexpected moments.
A smell, word, or sight allows them to resurface. Think about the transformative events in your life. I would guess that most, if not all, involved getting past the dragons. Personal growth doesn’t seem to occur when life is pleasant. Few people would say something like: “Yes, I turned my life around sitting on the beach in Kauai being served piña coladas by attentive wait staff.” Just as intense heat and pounding are necessary for creating the highest-quality swords, sharp points are necessary for shaping our lives.
Considering all the things that can go wrong with our minds and bodies, I’m amazed we can last as long as we do. But when things start going wrong, very wrong, caregivers are often thrust into chaotic situations. Daily, they are often forced to make momentous decisions without much guidance. What was needed yesterday may not be sufficient today. Just when they understand how to care for a loved one, the illness takes an unexpected twist and they’re dumbfounded about what to do next.
A loved one was grateful for what was done yesterday, but today it’s just not good enough. And tomorrow? Will things finally stabilize, or will the roller-coaster ride continue? With chronic and terminal illnesses, nothing stays the same for long. Instead of trying to become comfortable with what you are already doing, it’s better to become malleable, ready to move along with the ebb and flow of the situation.
Much has been written about the hows, whats, shoulds, and should nots of caregiving. But to clearly understand caregiving, all the peripherals need to be stripped away, leaving its most basic component, offering compassionate service to someone who can’t do things by him- or herself.