As A.L.S. gradually paralyzed her, while leaving her intellect intact, our years were filled with I.C.U. visits, emergency surgeries, stays in nursing homes, and wrenching conversations with strangers about the logistics of death.Because she was on a ventilator and had had a tracheotomy, she could no longer produce sound, and we had to devise a new way of “speaking.”
After a few months, it became apparent to both of us that I needed to go back to work—but how could I abandon her to strangers? I looked for an apartment near the hospital and trained a shifting roster of heath-care aides, Fujianese immigrants and the hardiest, most unself-pitying women I know. LLike my mother, they had survived in America by working lowly jobs to support their families, and went about their chores with the quiet stamina of those who never take a penny for granted. Like my mother, they had survived in America by working lowly jobs to support their families, and went about their chores with the quiet stamina of those who never take a penny for granted.As she lost the ability to move even a finger, her temper occasionally slashed those around her as would a sharp object in the hands of an unruly child. I was not immune to its cuts in my daily visits, but it was often the aides who bore the brunt.My mother currently has two aides, Zhou and Ying, and needs them to survive in the way that she needs the ventilator for her next breath. But she agonizes about the exorbitant cost of full-time help, which Medicare and Medicaid do not cover. You should be investing in an apartment, in Queens, she insists. I tell her to quit fretting and do not say anything to her whenever the numbers fail to add up. The process of making it all work financially is trying and mortifying. When discussing the details with anyone––a friend, a stranger, an insurance rep––I’m afraid of “losing face.” The phrase comes from Chinese, but the English inadequately conveys the importance of mianzi—self-respect, social standing—which Lu Xun, the father of modern Chinese literature, described as the “guiding principle of the Chinese mind.”My mother has always knelt at the altar of mianzi, an aspiration of which A.L.S. makes a spectacular mockery.
Pre-pandemic, my visits could relieve tensions between Ying and my mother. Now they were locked in a room together, armed with nothing but glares. On video chat, I emphasized our enormous gratitude to Ying for staying, and admonished my mother to be mindful of her exhaustion. Privately, I pleaded with Ying for forbearance. But, not long afterward, Ying sent me a note, in her tenuous, slanted hand, relaying a message blinked out by my mother, which included the line “she like three-year-old.” Because Ying doesn’t speak English, she had no idea that she had painstakingly transcribed a list of her own flaws.
Everyone is talking about caregiving, but it can still be difficult to find meaningful information and real stories that go deep. We read (and listen to and watch and look at) the best content about caregiving and bring you a curated selection.
Have a great story about caregiving? Use our contact form to submit it to us so we can share it with the community!