Running out of time, money, and independence?

A professor forced into retirement by a severe disability finds his personal care assistants essential. But he may not be able to afford their help much longer—and he faces going on Medicaid and possibly becoming institutionalized. Chronic Care Disability Multiple Sclerosis Personal Care Assistant Long-Term Care It’s 9:28 p.m. Serge punches the code into the digital lock and enters my front door, just as he does every night, seven days a week, asking the same question in his Haitian-accented French about how my day has been: “Comment était votre journée?” Serge has a formality that’s a bit remote yet friendly: Neither of us seems sure whether to use the formal pronoun vous or the more familiar tu. He reaches for my phone and pushes the preprogrammed number, accessing his agency’s automated time clock and recording his arrival time. Serge’s duty hours technically start at 9:30, but he always comes precisely at 9:28. Serge’s arrival interrupts whatever I’m doing—reading a book, listening to music, talking with friends—and I must always be home when he arrives. I resent these constraints and intrusions. This rigid schedule precludes spontaneity or unpredictability in my evening activities. Yet I have no choice: I need his help. Serge is one of several personal care assistants, or PCAs, who are essential for me to live in my New Jersey home alone despite severe disability. They get me up in the morning and put me to bed at night. They bathe me, dress me, place me on the toilet, clean up my spills, clear away my dirty dishes, bring in and open my mail, do my laundry, and keep my house tidy. Sometimes they cook me meals and feed me. Without Serge and my other personal care assistants, I couldn’t live independently, which is what I wish to do. Serge, Nelita (my personal care assistant in the morning), and their colleagues are among that growing number of “formal” or paid caregivers who provide the most intimate personal services to their clients, allowing me and other people in my situation to remain in our homes. These numbers will expand further as baby boomers age and “informal” care networks of relatives or friends are absent or strained. The interpersonal demands and dynamics of personal care relationships are challenging enough. Finding people willing to provide these services, ensuring that they are fairly compensated, and paying for these services over the long term are also daunting. Although my experiences with personal care assistants have been largely positive, I worry about the future.