15 NOVEMBER 00

Maybe I shouldn't have looked back, but the all-purpose room had a big window facing the parking lot, and I couldn't help glancing in to see if my mother was watching me leave, waving as she usually did at all our good byes. Thankfully, this time she wasn't watching so she did not see the tears on my cheeks or the shock I felt at not being able to instantly find her in the little gray-headed wheelchair-bound armada gathered around in a circle, all with lap robes and shawls.

We had always laughed over her hospital "nursery room" story about how she couldn't pick her own babies out from the other newborns, but now the story had turned and was no longer amusing. In one shattering afternoon, her individuality seemed to dissolve right before my eyes and marked the beginning of what I have come to call "our nursing home odyssey," an experience which ended only upon her death in 1998 after 21 tumultuous months.

My search for the ideal nursing home was fueled by two things: love and ignorance. I made endless inquiries and visits hoping to find a home that could provide both the physical care my mother needed as well as a stable, positive sense of community, and I actually moved her several times hoping to find, in her words, "just the right place." In addition, I spent at least 1,500 hours at her side quietly observing a world that is both mystifying and mundane, isolating and overcrowded, within reach and out of touch - in short, a world apart.

One cannot go through such an experience without coming face to face with a startling realization: that in the vast majority of cases, these institutions are extremely lucrative enterprises, which enrich a few at the expense of many, and that those who pay the highest price are the residents themselves.

Sometimes the "price" they pay makes newspaper headlines, but the focus of this article is to present what I personally witnessed as the cumulative effect of day-to-day nursing home life, which takes its toll in small measures of physical trauma, and even more devastatingly, in the bit-by-bit erosion of the human spirit.

A heavy toll The elderly and infirm pay dearly for oversights and mistakes, which would be more forgivable if they did not occur on a daily basis. They pay in confusion and fright when inadequately trained nursing assistants assume they have dementia. They pay when they feel disoriented and isolated because no one changes their hearing aid batteries. They pay in humiliation and discomfort when their dentures go for days without being rinsed.

In some cases, the toll is even heavier. Residents pay when overwhelmed charge nurses force them to take sedatives to keep them quiet, misread doctor's instructions, or overlook symptoms that warrant hospital care. They pay when the best way to get attention is to scream. They pay when screaming is ignored.

And last but not least, they pay when they persistently call for help out of sheer loneliness rather than need.

Unsung heroes: raising the standard
Too many nursing home employees are there only because they can't get work elsewhere. These are the ones who have little empathy for the patients and, in the saddest cases, actually neglect or victimize them. Encouragingly, there are a great many more who are well-intentioned but frustrated and dismayed at the circumstances that limit the kind of care they would like to provide.

Ultimately, there are those who, in spite of having among the most emotionally, mentally, and physically wrenching jobs in existence, routinely go the extra mile to bring comfort and contentment to the lives of those they assist. I saw numerous tender moments of sincere affection expressed between patients and their caregivers, and many "random acts" of kindness which happened spontaneously and in relative obscurity. I saw the extra effort it took to remain composed in traumatic situations, and most notably, I saw that it was possible to work efficiently and gently at the same time.

There was the housekeeper who went to inordinate lengths to help my mother select a pair of comfortable slippers. There were staff members who came nightly to bring my mother a cup of coffee, and nursing assistants who made her "temporary" room more homey by bringing in pictures and objects from her "permanent" room.

The selfless actions of these individuals and others like them provide a glimpse of what all nursing homes, given adequate support, could be: places of caring that generate goodwill and give something of real value back to the communities they serve.

The need for change
The defining element upon which future historians judge civilizations is how well they treated their children and their infirm. Nursing homes, along with child care centers and schools, should be at the centers of our communities and neighborhoods (in communities of the future, both literally and figuratively). The residents are a precious part of the human family. As long as they live, they have much to contribute - even if it is just to provide us the opportunity to care for and nurture them. Society already places a high priority on the physical and emotional needs of children. The needs of our nursing home residents should be no less important.

interview with Mary De Shaw