Bridging the Gap

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.