Tom Kitwood, the English minister-turned-social-worker who pioneered the person-centered model of dementia care, believed that “…people with dementia, rather than being seen as debilitated, should be embraced for what they can teach the cognitively intact. They invite us “to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct. … in advanced Western societies, where a sense of community is often weak, the evident frailty of people with dementia generates fear; this unease is socially managed by turning the demented into nonpersons, who are warehoused in nursing homes and pathologized… .” The problem…“is not that of changing people with dementia, or of ‘managing’ their behavior; it is that of moving beyond our own anxieties and defenses, so that true meeting can occur, and life-giving relationships can grow.” (From Rebecca Mead’s “The Sense of an Ending,” The New Yorker., May 20, 2013.)
In 2007 my 86-year-old uncle had his first disturbing episode of confusion. Over the next few years he became more confused and forgetful. Eventually he needed help with what the healthcare community calls ADLs: Activities of Daily Living. Bathing, dressing, toileting, eating. Socializing. Alleviating boredom. Everything. I became his caregiver. In 2011, when I could no longer lift him after his falls, I moved my uncle to a memory-support home. Visiting him, I found that I loved interacting with the residents. One day when the residents gathered in the TV room, I played a Lawrence Welk DVD for the group. Spontaneously, the residents began to tap their feet and sing. Residents who no longer spoke, sang along. People who couldn’t remember their own names remembered the words of the music they’d once sung or danced to. Dementia professionals knew this, but at the time I didn’t: when other memory function is lost, the memory of music remains and can sometimes revive other memories or feelings. Magic! So this would be my next career: I would be a minstrel in memory care homes. I got an accordion and became a CNA.
Over the years I’ve had several careers and many jobs. Each to me was an exciting adventure. None was as transformative as this one. For me, working among those with dementia has been, to borrow Kitwood’s word, life-giving.
My sister would ask, “Why do you like being with those people so much?” I’d remind my little sister: “When I visit you, you tell me, ‘Donna, you have to do something with your hair. You need to cut your hair, color your hair, curl your hair. And you need to get yourself some new clothes.’ When I visit Tom’s place the residents say, ‘You look beautiful today! What a lovely outfit! (That would be my jeans and T-shirt.) I love your hair that way!’ ”
But it was something else. For those with dementia, as Kitwood discerned, instinct becomes the operative principle. Not rationality. Not the politeness or other filters we rely on to keep us socially acceptable and safe. Not previously learned defense responses; these are forgotten. Those residents were without duplicity. They responded to kindness freely, without suspicion, without wiles. Around them I felt freer to be myself in ways I usually didn’t. There wasn’t the need for all that learned guardedness and reserve. Those with dementia seem to return to a time, a place within, of more transparency. As the great dementia-care gurus Naomi Feil and Teepa Snow tell us, those with dementia can no longer enter our world; we must enter theirs. As we do, like them we may come closer to our own less constructed, less artificial selves.
The experience of dementia is heartbreaking and not to be romanticized. But I see dementia as more than a tragic incurable disease. For me exposure to dementia has been a healing gift. I wonder whether it’s also a final healing for those whose vulnerabilities it exposes. Dementia takes so much. It divests one of a lifetime of accumulated knowledge. The ego’s accomplishments fade. The trappings of cognition loosen. Even identity changes. What remains? We have little idea of what is happening in the souls of the speechless. But their losses parallel what Buddhist, Christian, Jewish and Islamic mystics seek. Detachment from vanities, from ambitions, from past and from future. We need only to be present to the moment. Soon this is all the person with dementia will have left. Should we see dementia’s passage as one of loss, or one of grace?