There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.
Our reverence for independence takes no account of the reality of what happens in life: sooner or later, independence will become impossible. Serious illness or infirmity will strike. It is as inevitable as sunset. And then a new question arises: If independence is what we live for, what do we do when it can no longer be sustained?
A doctor to whom I occasionally talk suggests that I have made an inadequate adjustment to aging. Wrong, I want to say. In fact I have made no adjustment whatsoever to aging. In fact I have lived my entire life to date without seriously believing that I would age.
Americans think that death is optional. They may not admit it, and will probably laugh if it’s suggested; but it’s a state of mind—a kind of national leitmotiv if you like—that colors everything they do. There’s a nagging suspicion that you can delay death (or—who knows?—avoid it altogether) if you really try. This explains the common preoccupation with health, aerobics, prune juice, [and] plastic surgery.
I told [my father] I would go up there; he said no, no, everything was fine. I drove up anyway and when I opened the door to the house he was sitting alone in the kitchen, the kettle on the stove madly whistling away. He was fast asleep; after the stroke he sometimes nodded off in the middle of things. I woke him, and when he saw me he patted my cheek. “Good boy,” he muttered.
The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you—not to mention literally gave you life—and taking their fragile body in your hands like a newborn, tending to their every need.
What had once seemed unendurable to an aged parent—and still does to us, the adult children—changes. They come to tolerate the formerly intolerable and to surprise us with their forbearance. Diapers, it turned out, were not the end of the world. Nor was a wheelchair, despite initial resistance. Millimeter by millimeter the line was moving, as it would many times more.
I am an unlikely guardian. A month ago I thought the Medicare doughnut hole was a breakfast special for seniors. I am a care inflictor.
I heard a lot about the idea of dying “with dignity” while my mother was sick. . . . I didn’t actually feel it was undignified for my mother’s body to fail—that was the human condition. Having to help my mother on and off the toilet was difficult, but it was natural. The real indignity, it seemed, was dying where no one cared for you the way your family did, dying where it was hard for your whole family to be with you.
Caregiving offers many fringe benefits, including the sheer sensory delight of nourishing and grooming, sharing, and playing. There’s something uniquely fulfilling about being a lodestar, feeling so deeply needed. . . . But caregiving does buttonhole you; you’re stitched in one place.
You sacrifice, yes. You don’t get to the gym, to the shrink, to the office, but you get this fragment of a moment with a person who is momentary, who will not be like this again.
Caregiving leaves its mark on us. No matter what we do to prepare ourselves, the hole left behind looms large.
I love my mother, not as a prisoner of atherosclerosis, but as a person; and I must love her enough to accept her as she is, now, for as long as this dwindling may take; and I must love her enough, when the time comes, to let her go into a new birth, a new life of which I can know nothing.
