What a Long Strange Trip It Is . . .

Navigating unknown territories, facing powerful forces and boundless seas, we hope for smooth sailing and we look to arrive safely at our intended destination. Soon it is obvious we are on an uncharted route full of unknowns, loneliness, fears, frustrations, and heart-wrenching sadness.

The mixture of love, confusion, and tired but genuine concern makes caregiver responsibilities rewarding but sometimes full of conflict. Caregivers give unconditionally and with tremendous taxation to personal time, know how, and physical endurance. They keep going, continuing to hope for relief, assistance, laughter, good times, and sunny days.

The 33rd sutra in The Yoga Aphorisms of Patanjali, translated by Swami Prabhavanda and Christopher Isherwood (1953), is this:

“Undisturbed calmness of the mind is attained by cultivating friendliness toward the happy, compassion for the unhappy, delight in the virtuous, and indifference toward the wicked.”

This is Patanjali’s prescription for calming our minds and finding peace through our attitude toward others. I seek to practice and experience this mental calmness.

While its seems fairly easy for me to act with compassion toward the unhappy and pained, I then find that my tired and stressed mind turns to judgmental irritation with others. The work of caregiving is so tiresome, stressful, and enduring; I feel that I need to keep a certain and necessary detachment, but I must also practice unconditional positive regard toward others to prevent myself from getting down.

So many of us are faced with both the privilege and the extreme challenge of caring for our aging loved ones. We must remember to also care for ourselves, both internally—by calming our minds and cultivating compassion—and externally, by holding fast to our friends and social supports, unloading on a neutral sounding board, and simply taking a moment to breathe. A friend of mine, Jan Marquart, talks more about how to do this in her own reflection.

The Toughest Words

“Forgive me, please. I must speak candidly and say that which cannot be said easily.” These were my words as I helped a woman face death today.

Death . . . it was just on the other side of the door. I knew she needed to know. It was a choice between dying in her own home, or dying in an ambulance on the way to another attempt to continue living. The disease had already destroyed her; it was just a matter of time before it was evident to all. Hospice—despite its goal to bring a sense of calm and care—brings a fateful truth that some are not ready to accept.

This is the toughest part of my days—finding, or saying, those words. Sometimes it is about the simple reality: Death is near. Other times it is necessary to impart knowledge about the mechanics of how a body dies. Still other times I have to ask, or answer, the difficult questions: Who will be around at the time of death? How will you manage your symptoms? How do you truly prepare—saying or doing what you want most while you still can?

The ultimate determination is theirs to bear, but human decisions don’t always have power over death.