Originally published in newsweek.com
Life in a residential Alzheimer's facilitythrough the eyes of the low-wage workerswho care for these vulnerable patientswhen their families can't.To better understand the disease that killed her mother, Lauren Kessler, a journalist and mother of three, took a job as an entry-level caregiver at a residential Alzheimer's facility in Oregon. Her new book, Dancing with Rose, chronicles the months she spent caring for patients at varying stages of this devastating illness which afflicts more than 5 million Americans. Here, in an exclusive essay for NEWSWEEK, Kessler offers a glimpse into the lives of the underpaid and overburdened workers at "Maplewood"—the fictional name she has given to the institution where she worked.Jasmine and I are co-workers at Maplewood, a residential facility for those with Alzheimer's. We take care of people who can no longer care for themselves, and whose families can no longer care for them. The myth is that people dump their relatives in places like Maplewood. The reality is that the decision is an agonizing one frequently made after extraordinary, often long-term efforts to care for the person at home.Jasmine and I spend our eight-hour shift "performing care with an awareness of dignity and individuality," as the employee handbook recommends. That language is pleasing and high-minded—and I appreciate the thought behind it—but it obscures the unpleasant daily details of the work we do as we tend to the bodily needs of frail, elderly women and men in various stages of dementia. We toilet them, empty commodes, change diapers, bathe, dress and undress them. We brush hair and teeth, clean dentures and hearing aids, cut toenails. We put them to sleep. We wake them up. We feed them.But the job is not just about keeping our "residents"—they live here, and so that's what we call them—clean and dry and fed. It's about talking to them, listening to them, calming their fears, answering the same question a dozen times. It's about learning how they experience their circumscribed, fragmented world and trying to connect with them by bridging the gap between their reality and ours. It's about discovering that part of them that is still very much alive, the part that loves to listen to music, or sit in the sun, or eat a chocolate-chip cookie, or watch a Bette Davis movie. The part that responds to touch, that needs and wants to be hugged.This is important work, essential work, physically and emotionally demanding work. It is also minimum-wage work.I have an employed spouse, heath insurance, a home, three healthy kids and a brand new car. I am working here by choice, to immerse myself in the lives of those with Alzheimer's and the lives of those who care for them. I am working here to gather material for a book.Jasmine, my co-worker, is a 24-year-old high-school drop-out with a 7-year-old son, a car that died in somebody's driveway and a voucher for federally subsidized housing that she has just now received after three years of waiting. She has translucent skin, inky blue-black hair and six missing teeth. They were pulled because they were decayed. They were decayed because she couldn't afford to go to a dentist. Jasmine is here at Maplewood, frequently working double shifts so she can maybe save enough money to go back to school and get her high-school GED, because this is the best job she can find. It beats her last job, loading trucks for a Target store at four in the morning. Yet, like so many bottom-of-the-rung jobs in the health-care industry, it offers no health insurance, no sick days, no vacation days, no job security, not even a paid lunch break.The chasm between the importance of the job and the remuneration is astonishing, but no more astonishing than the chasm between the money spent to build a memory care facility like this and the money spent on employees to keep it running. Maplewood is clean, bright and modern with homey "neighborhoods" and outdoor patios and a big, sky-lit common area with real plants and chirping birds. The interior design, which allows for safe and secure wandering—one of the hallmark behaviors of Alzheimer's—is carefully conceived and nicely accomplished.But the place is understaffed, and the staff is overworked. Jasmine and I each care for between 11 and 14 residents on our own. Our training consisted of a six-hour orientation session, most of which was spent reading the employee manual aloud to each other. This was followed by shadowing a more experienced worker for two days. On the third day, we did the job ourselves, with minor oversight. On the fourth, we were on our own.Not much is invested in training us because most of us don't stay with the job for longer than a few months. Our residents, however, are often here for years, their families paying from $45,000 and $60,000 annually, depending on the level of care needed. If Jasmine and I work eight hours a day, five days a week for 52 weeks, we still wouldn't clear $15,000 each after deductions. But of course, we don't put in that time. I am gone in four months, and Jasmine, considered a veteran by then, is gone in five.Those are the facts, but they are misleading, for as tough and often unpleasant as this job was, as little as it paid, it was also, to my enormous surprise, the best job I've ever had. It taught me patience. It taught me how to live in the moment. It taught me how to communicate with people who no longer have words. It taught me that we are more than the sum of our remembered past, that when it seems as if everything is gone, something still remains.© 2007 Newsweek, Inc.