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-bye's. 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 which 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.

You may pass a nursing home every day on your way to work. You probably know someone you once cared about, or who cared about you - a former teacher, neighbor, garage mechanic, or boss - who now lives in such an institution. This article is an attempt to take you inside its doors, beyond its well-kept lobby, and to speak on behalf of those who are now least able to speak for themselves. If it prompts even one reader to change the way they vote on issues of nursing home reform, or to visit a lonely resident, or even to advocate on their behalf, it will have been worth the effort.

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 aide batteries. They pay in humiliation and discomfort when their dentures go for days without being rinsed. They pay when no one speaks in a way they can understand, or when no one has time to listen. They pay when they sit for hours in dark, closed-in rooms because their caregivers, exhausted from long shifts or second jobs, neglect to open curtains, or give them their reading glasses, or turn on lights. They pay when they become dehydrated because water pitchers don't get filled. They pay when their skin becomes irritated from urine-soaked sheets. They pay when call buttons are not put within reach. They pay when they have no advocate to speak on their behalf. They pay when they spend entire nights on metal springs because their air mattresses deflated. They pay when they go without showers or having their hair brushed because staffing ratios creep up to over 15 to one. They pay with sores caused by scratching themselves with ragged fingernails. They pay in frustration and resentment when staff members say, "I'll be back in a minute," and then don't return for the duration of the shift.

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 which warrant hospital care. They pay when the best way to get attention is to scream. They pay when screaming is ignored. They pay when the nursing home reduces services because hospice care, designed to supplement services, begins. They pay when nursing home owners, intent on building summer homes in exotic places, provide them with toilet paper instead of tissue paper, shredded cotton instead of pillows, and hard plastic mattresses covered by only threadbare sheets. They pay when they bruise their hands on broken wheelchairs, or when there is no lift available so that they spend weeks without getting out of bed. They pay when staff members are hired with no reference checks, or who are neither competent, compassionate, nor trainable. They pay when personal items are stolen while they sleep. They pay when they hear the words, "So and so doesn't like you anymore," or "You big cow, if you keep yelling we'll have to move you to the screamer wing," or "You stink." They pay when they are set up for sport. They pay when they don't get the message, "Mom, I have a meeting tonight so I'll come tomorrow instead," or worse, when staff members tell them that a family member is "on her way" when it is not true. 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 which 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 was the nursing supervisor who regularly worked 16-hour days yet always had time to hear family member concerns. 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. One Christmas Eve, when the hallways had been deserted by the rest of the staff, there was the activities director who returned after work with her children to bring a little "Christmas cheer." There were staff members who called my mother "Mama" and "Sunshine," sang to her while helping her dress, used break time to paint her fingernails, and took her out to the garden to pick roses. I knew an aide who persistently encouraged my mother to play the piano, a nursing assistant who tucked her in bed every night with a "warm" water bottle and a hug, a dietitian who made her special salads at lunch time, an administrator who regularly visited residents and took an active role in soliciting family members' suggestions. Once a student nurse took my mother with her on her rounds, pulling the wheelchair with one hand while pushing the medications cart with the other. I knew a nursing home owner who visited residents regularly, provided innovative programs, and went to great lengths to create a spirit of community.

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 which generate goodwill and give something of real value back to the communities they serve.

The need for change: While recognizing the complexity of the issues, and the fact that some of these ideas may have already been widely debated by industry professionals, here are a few recommendations which I would like to see receive more attention and action:

1. Solicit broad, anonymous input for monitoring: State-mandated monitoring should include not only impromptu visits to nursing homes, but anonymous interviews with families, staff members, and volunteers. Fear of retribution means that many problems do not ever get reported to the nursing home administration or state officials.

2. Increase pay for nursing home staff: Pay should be equivalent to other occupations responsible for similar types of work, especially those which involve being responsible for the health and welfare of other human beings (hospital nurses, teachers), lifting heavy objects (construction workers), and using technical training (computer technicians). Note: As an example of the extent to which some nursing home owners will go to keep pay low, I know of one who increased the hourly pay only to turnaround and reduce shift-time so he would have no net increase in costs.

3. Encourage state-of-the-art human resource practices: Create incentives (tax and otherwise) for owners who pay more, provide better benefits, mandate better training, have people-friendly policies, and who show steady improvement in terms of employee performance. Monitor hiring practices and require more careful screening, interviewing and reference checking. Increase support for supervisors and provide them with effective mechanisms for disciplining or firing problem employees.

4. Provide better training and supervision: Provide ongoing training on a wide variety of topics (including interpersonal relations), enhance and clarify performance measures, set attainable standards, and develop ways to provide immediate feedback. For new employees, a thorough evaluation of skills and experience should be done in order to tailor a training program for them initially and on an ongoing basis.

5. Allow for more staff time with each resident: Create several categories of care and assign ratios accordingly. For example, maintain the current state-mandated ratio of eight to one for those who are most able (mentally and physically); establish lower ratios for those with more acute needs. In large nursing homes assign staff so that they work with the same group of residents each day.

6. Avoid sudden staffing shortages: Current ratios often creep up to 15 (or more) to one. To minimize sick leave usage, explore options such as flexible scheduling and job-sharing. Create a pool of trained temporary help which is used to fill in during staff absences. Penalize owners who do NOT call on temporary help. Require that this policy be posted, along with the telephone number of the state office responsible for imposing the penalty. Allow the person reporting the offense to remain anonymous. Ideally, provide on-site child care for employees.

7. Create community: Provide channels for introducing new residents as whole human beings, not just ailing physical bodies. This should be done PRIOR to, or as soon after, admission as possible. As part of their orientation, connect new residents and their families with those who are already part of the nursing home community (other residents, family members, volunteers). Be clear about what is expected and what is provided; moreover, provide education about the guiding philosophy and goals of the home, along with tangible examples of how these goals are being achieved. Develop incentives for keeping family members involved as advocates for their loved ones; welcome their suggestions. Find creative ways (newsletters, parties, posters) to encourage appreciation of the staff and to support connections. Celebrate the achievements of staff and residents. Give residents the opportunity to share their personal histories and provide assistance for them in this endeavor. Include children, grandchildren, friends and pets as part of the nursing home community.

8. Find more effective ways to communicate residents' needs: For example, create more overlap time between shifts so that the old shift can "clue in" the new shift about issues. If the resident needs help communicating, and if they or the "responsible party" is willing to sign a waiver regarding confidentiality, allow signs to be posted by residents' beds with instructions and information (hard of hearing, nicknames, food preferences, etc.) Although this information is maintained in the residents' charts, it does not get communicated effectively, especially to new employees.

9. Make living spaces more personal and inviting: Find ways to make individual spaces more personal. For example, paint using the resident's favorite colors, provide shelving for personal possessions. Provide all residents with a view of the outdoors. In some cases, the beds could be arranged so that all residents have access to a window. In designing nursing homes of the future, rooms should be created which accommodate comfortable chairs for visitors.

10. Research and adopt best practices: Send teams of professionals to other states and countries to observe first-hand the practices deemed the most successful and to develop and recommend strategies for implementing them. This field should be no different than other industries where processes are continually analyzed with the goal of making ongoing improvements.

The list goes on but the bottom line is this: 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.

"Why are you doing this for me?" - a mother's question: Before admitting my mother to our first nursing home, I had already provided her with many years of caregiving in spite of being a full-time employee and mother myself. At times the pressures were crushing, yet I never ceased to relish the opportunity of brushing her hair, bringing her little treats, holding her hand. A few weeks before her passing she asked, "Why are you doing this for me?" and for the first time in our nearly 50-year relationship I had no words to give her in reply, no phrase that could capture the depth of the love that sustained my energy for staying by her side. In answer to my stunned silence, she smiled and simply said, "Because I would do it for you." And, of course, she was right. Even now, when I have more freedom and the luxury of relaxing at home on weekend mornings with my own husband and daughter, I miss having her in my life. Writing this has been a way to wring something positive from an experience which almost defies description. But perhaps more than anything, it is a way of doing one more thing for someone I loved very dearly.

"I do what I can": This poem was inspired by a "ninety-something" nursing home resident, one of the many new friends my mother and I made during our "nursing home odyssey." She was one who daily sat at the home's entrance in her wheelchair greeting and bidding good-bye to visitors. One day I told her that I enjoyed seeing her at her "post" and she cheerfully replied, "This is my job. This is my home now. I do what I can." To this day, she has no idea how her words affected me.

The Next Breeze

Sitting in a wheelchair at the nursing home's entrance
before the hall splits
into two well-scrubbed corridors
is Olympia -
ninety-five at least,
a refugee on the last boat out of Italy before the war,
comes to my chin when she stands,
curly white hair,
eyes deep, dark, expressive,
earrings sparkle like her eyes,
smells like perfume.
"Hello, Olympia," I say. "How are you?"
"Ah," she replies with her soft Italian accent,
a flick of her hand, a shrug, a smile,
"About the same."
I make my way through a forest of metal carts,
carts with linens,
carts with medications,
carts with cleaning supplies,
carts with trays of half-eaten food.
In time, my business here is finished.
I retrace my steps.
"Good-bye, Olympia. I see you're still at your post!"
"Ah," she replies with her soft Italian accent,
a flick of her hand, a shrug, a smile,
"This is my job. This is my home now. I do what I can."
Outside,
an impossibly blue and sun-drenched breeze
strikes my face, fills my lungs,
sweeping my mind of carts and corridors and trays of half-eaten food
- but the words collect like leaves
in the corners of my heart:
"I do what I can."

Dear reader, there is much to be done. Thousands of "Olympia's" in nursing home corridors throughout the country are quietly showing us the place to begin.

A note from the Author: This article is based only on my mother's and my individual experience and does not spring from any professional expertise in the area of nursing home administration. While I understand that the issues are extremely complex, I felt a responsibility to provide an account of nursing home conditions from an "eye witness" perspective, especially after having spent hundreds of hours in a total of seven different east bay skilled nursing facilities. One cannot go through such an experience without feeling compelled to make it count for something positive. When I found the June 8, 2000, "Report on Nursing Home Conditions in the San Francisco Bay Area" on the CANHR (California Association for Nursing Home Reform) web site, it seemed the time was right to share my article with my representatives (as well as Diane Feinstein and Barbara Boxer) in Washington D.C. Nine of them (Stark, Eshoo, Lantos, Lee, Lofgren, Miller, Pelosi, Tauscher and Woolsey) had asked the minority staff of the Committee on Government Reform to investigate conditions in some of these homes. The web site is: http://www.house.gov/stark/documents/106th/nursereport.html. As a point of clarification, my mom was receiving "custodial" care in "skilled nursing facilities" (SNFs) which are quite distinct from other intermediate or residential care facilities which generally maintain much higher standards for care of the elderly and infirm, and some of which strive daily to model excellence.

Mary M. De Shaw is Benefits Manager in the Office of Human Resources at the University of California at Berkeley