Issue One

The planet’s population is getting old. In 1995 the number of people over the age of 60 increased throughout the world by more than one million per month. As baby boomers age, Americans over 60 will make up the majority of the United States population by 2011. Despite the growing number of senior citizens, relatively few live in nursing homes. If the adage that there is strength in numbers is true, then quite possibly the low percentage of elderly living in nursing homes today could explain why their voice is so weak, and why the care they are receiving in some homes is so poor.

I was a part time social worker. Most of my job was dedicated to paper work and meetings. Personal visits to my clients spilled into my own time, but it was worth it. I was able to personally get to know my caseload and see how they lived. Similar to hospital rooms, some of the people’s rooms in the home were bright with family photos, cards or personal belongings. The staff called these memories symbols of the person’s "past life."

"What does past life mean?" I would ask. The reply went something like this: "You know, what they did before they came here." The worker spoke as if the person were dead, and the photos represented what the person used to be. I have seen intake forms and assessments with such lines as, "was a truck driver in past life" or "family has provided photos and memorabilia from past life." Perhaps these words are an attempt to convey a deeper message, something not easily grasped. Past life: are the yesterdays so removed from the todays, even while we are still living? Then again, perhaps it really is a separate life, now gone, because existence inside the nursing home is so bizarre it can’t possibly be called living. In his Pulitzer prize winning book, "Why Survive? Being Old in America", Robert Butler stated, "We are so preoccupied with defending ourselves from the reality of death that we ignore the fact that human beings are alive until they are actually dead." In any long-term care living situation such as a nursing home, death is an every single day occurrence. Dividing a person’s life into neat categories may just make the pending death easier to deal with.

On my rounds, I made certain to visit those who had little or no family. These were the residents whose rooms had no evidence of a past life. With no category to put them in, I could only think: ‘This was their life then, and will be now and forever.’ I knew that aside from the aide who cleaned the room, or the nurse who administered the medications, I would be the only "visitor" and, since I was actually a paid staff member, I wasn’t a true visitor at all. Most of the time spent consisted of long silences as I waited, giving them the time needed to reply to my asking, "How are you today?"

On my way to the staff break-room each day, I passed bags of personal items lining the wall. Written across the bags were the names of those who used to live in the home. Deceased. The part of their life spent in the home neatly reduced to a bag in a hallway. It was my job to notify families when the bag was full. "Would you like me to save the items removed from the room?" If the answer was no, the maintenance department hauled it away and dropped it there–in the hall against the wall. There was no adequate storage or timely garbage removal for such things.

Back in my office, a son called me to ask if he could take his father home. To die. I was told by the head nurse that if he did take his father home, the facility would give him an "AMA-Against Medical Advice" notice and notify adult protection. Even though he merely wanted his father closer to him, he would be branded, labeled accused of abuse. Once a doctor writes an order for nursing-home care it is difficult to go against it. I told the son to arrange for services in the home, that we would evaluate the arrangement and then his father could possibly be sent home. By the time the services were put in place, his father was dead. He died alone. Or maybe there was an aide in the room. Nobody knows.

The trip to my small suffocating office (no window, an oscillating fan), was often made during a time called "transport," short for transportation. Transport time was a major undertaking before and after all meals. I would watch in horror as residents were wheeled away from their eating spaces, one by one, and placed in line–a line where they waited, sometimes for over 15 minutes, for an aide to give them a ride to their rooms. I asked an aide why transport was done in such a cow-herding fashion. She said, "We line them up first, then we start taking them back to their rooms. It is faster that way." Imagine being tenth in line. In front of you are other wheelchairs. Behind you more chairs. You are lined up against the wall so you don’t block the hallway. And you wait and wait. And you wait. You are number ten to go back to your wing. It is all very efficient–for the staff. I decided to watch another transport time, only going the other way to a meal, and I found the same collecting of people to be placed in line. Following and helping where I could, I became a part of the wheelchair parade. I noticed that as persons were wheeled to their dining spaces, they were pushed to tables that were bare. No tablecloths or even a center piece. Residents were not removed from their wheelchairs and placed in a regular seat, which made it very awkward to eat because they were farther away from their plates. The aides placed bibs around people’s necks. As they waited for lunch, there was mainly silence, sometimes an occasional moan or shout. If a person enters the home with a depressed diagnosis, how can this scene possibly nurse them to health?

There was a piano in the dining room. I often tried to play, but it didn’t have 88 keys so I could never play songs as intended. My attempts at the piano were more than an attempt at music. They were a reach for life–for stimuli–anything but silence, please. Nurses and aides milled about busy, rarely smiling because they had "work" to do. They were under time pressure to get meals out, assign feeding positions and make sure that the documentation for what the person ate was correctly completed–all needed tasks–but there was never an attempt to make it a pleasant dining experience. Dining, like the rest of the day, was a clinical experience. Eventually, I gave up on the piano. Besides, it wasn’t even tuned.

Between meals the wheelchair folks remained lined up. They were always parked next to each other against the walls so they didn’t block the main flow of traffic. If they wheeled themselves out of line, it caused havoc among those who used walkers. It was chrome meeting chrome, locking, with the parties too weak to pry apart, crying or screaming for free movement. I noticed that a few stirred uncomfortably in their chairs after sharing brief eye contact with those passing by. It was as if they knew and could feel how helpless and vulnerable they were, sitting in that hallway. A granddaughter once requested that the staff not put her grandmother in the hallway. "I don’t want her on display," she said. The staff thought she was a snob. When I questioned their anger at the request, I was told, "Well it gets them out of their rooms to see other people, like a social thing."

I could not understand the social element since they often sat next to a person they might not have liked or even known. More than half of them fell asleep from boredom. A few bickered with the others walking by. Others stared straight ahead. I can’t imagine what they thought of the persons who were mumbling, crying or talking incoherently right next to them. A diet technician once told me that people living in nursing homes in the state where she came from were not allowed to simply sit in a row in a hallway. I envy where she came from.

In the empty lounge rooms, the furniture was outdated. There were few decorations on the walls. Televisions blared an obnoxious talk show or sometimes a soap opera that nobody could follow. When I asked why the lounge rooms were empty, while the hallways were full, I was told, "There are not enough activity personnel to man those rooms if we put people in them. It’s not in the budget to hire activity staff. At least in the hallway, we can keep an eye on them."

Total nursing home revenues will top 55 billion dollars this year. While the changes in the Medicare reimbursement formula may have temporary reduced overall profits and reduced stock prices for publicly traded nursing-home companies, Wall Street analysts believe that the rapidly growing elderly population in need of care guarantees health-care facilities a robust future. At the website, www.nursinghomeswatch.com. you can get the annual salaries of those in the corporate sector of nursing home companies. Salaries that range from $250 to 800 thousand per year. One man. One salary. And all I can see are empty lounges with no staff to work them.

If persons weren’t in wheel chairs, they were allowed to walk around, but if they left the floor, they were called wanderers. A few were allowed to go to a therapeutic companion program. When I looked in the lunchroom where the program took place, I noticed there were not more than five people involved. It was monitored by a couple of tired aides who spent most of the time trying to keep the few participants from leaving the room. I realized that those who partook in the program were the ones that the floor staff wanted to get rid of for a while. They were the patients who argued, fought and demanded lots of attention. It was hardly a companion program and even less therapeutic

Every quarter, a patients plan of care was reviewed by the health care facility. All disciplines were invited. The diet technician, the nurse, speech, occupational and physical therapists gathered around the conference room table to offer input. In the three months of my experience, I attended about 50 meetings. Out of that 50, only one resident attended her meeting. Only 5 of the 50 had family members present. Why?

I discovered that the residents weren’t being notified of their own meetings. The one who did happen to "find out" was lucky. Or was she? There were no living relatives to invite, so the receptionist, for lack of any place to send the invitation, sent it to the resident. Her presence upset some of the team. One technician rolled her eyes and groaned, "She’ll take up all of the time and we’ll never get out of here." Another staff member saw it as an opportune time to reprimand a resident for not leaving the activity area quickly enough (this patient used a walker) so clean up could begin. The nursing supervisor and I had to stop her from going on and on about it. The resident was near tears.

As for the families’ scant attendance, one woman I spoke to said she received her invitation one day before the meeting. As she had no car and lived 30 miles away, it was impossible for her to arrange a ride at such short notice. Another family member said, "I work in the day. They always have those meetings in the afternoon and I can’t leave work." When I advised her to request a different time, she said she wasn’t aware she could ask for that. I wasn’t sure either, I had simply offered her something that in my mind would be logical.

As a social worker it was my job to advocate change. It was my job to be a voice for those on my caseload and that is exactly what I did. My questions, my suggestions were most always met with resistance from an overworked, underpaid staff who, for lack of any other direction from administration did the best they could to save the most amount of time. Administrators listened with sympathy and then spoke about lack of finances.

My requests to meet with the owners of the nursing home were met with suspicions and questions to me like, "What do you need to say to corporate?" One staff member said, "Oh, you never saw the memo. We’re not allowed to speak to corporate." Another staff member didn’t even know who corporate was. She was totally unaware that anybody actually owned the place.

Most of the families felt the same way, and when I asked them why they had placed their loved ones in such a place, they sadly and guiltily shook their heads and said, "It’s the same, most of the places are the same. What can we do?" What can we do indeed.

Advocating for change, any change, is time consuming and often exhausting work. Organizations that operate solely for change are a help and a life saver.

FRIA, or Friends and Relatives of the Institutionalized Aged, is an independent, non-profit, 20-year-old consumer organization working for nursing home reform. FRIA helps families and family organizations become effective advocates for the residents of nursing and adult homes, and supports legal and regulatory change to improve quality of long term care for New Yorkers. FRIA provides consumers accurate, up-to-date information about finding, evaluating and financing elder care. FRIA publications available include the following:

• Eldercare in New York–a comprehensive guide to questions about long term care options
• On Guard–FRIA’s newsletter covering FRIA programs and updates, activities and issues.

FRIA also provides fact sheets that address such topics as:

• Advocating for your Relative: What Families need to Know and Do
• Nursing home Placement
• When There are Cultural and Language Concerns
• Confronting Guilt over Placing Relatives in Nursing Homes
• Caregivers Support Groups List in NYC
• How to Get a Department of Health Survey Report of Your Nursing Home.

FRIA’s website – www.fria.org – provides a complete list of all of FRIA’s publications and services, federal and state policy and legislation updates and links to various government and consumer long-term care websites.

FRIA’s free hotline statewide is 1.212.732.4455

The hotline operates in English and Spanish on Monday, Wednesday and Friday from 10 to 5. Hotline counselors answer questions about what the law requires, how to spot common problems and how a relative can be a good care monitor and advocate to make sure residents get good care. You can also ask to become a member of FRIA.

Other Sources:

• NYS Long Term Care Ombudsman program is a volunteer-based program that sends volunteers to listen to patients in nursing homes and acts as a liaison to address concerns.

• Department of Health, Patient Care Investigations Unit.