Insti tut ionalization of the aged is a topic that evokes intense emotional reaction and great controversy, yet it is an increasing phenomenon among developed countries.1,2,3 It is true that only 4% to 5% of the aged are in institutions, but it is also true that one out of five persons will stay in an institution, if he or she lives long enough to reach the age of 80 and over.4,5
Nurses, among others, are very concerned about the quality of care provided in nursing homes, yet we know so little about the residents' perception of their quality of life in those settings. Many vital questions are still unanswered.
* What does it mean for a person to live in a nursing home?
* Can a person actively shape his or her life in a nursing home despite limitations and dependencies?
* How do old people actually cope in institutions?
* What are the personal attributes or the environmental factors that might influence modes of coping and adaptation?
Nurses have for too long tended to focus on weaknesses, problems, losses, or unmet needs of the aged, and therefore have forgotten that old people are old survivors. The aged succeed in reaching old age because of their strengths and their ability to cope with Stressors and changes throughout their long lives.
The purpose of this article is to reveal the active role that even disabled residents were able to demonstrate in shaping their everyday lives in a nursing home reality. The data that are presented were collected by the author during the last two years, using the anthropological field work approach. In studying the aged, the inductive qualitative approach offers several advantages over the deductive quantitative approach, which employs questionnaires or structured interviews:
1. It enables the researcher to study the actual behavior in its natural context and not merely the declared action, stated perception, or knowledge.
2. It enables the researcher to include individuals who are usually "sampling drop outs, "6,7,8 but nevertheless are an integral part of the studied reality; eg, the confused, the blind, the deaf, and people who do not have a good grasp of the language.
3 . It is the course of events that dictates the research topic and not the researcher who can only find what he or she had planned a priori.9
4. It enables the researcher, who becomes a native in the situation, to understand the members' worlds of meaning.10
Review of Literature
Review of the extensive literature on long-term institutionalization of the aged reveals that findings reflect the negative effects institutionalization has on the aged residents. The relocation process itself is often perceived as a Stressor as well as the quality of care provided inside institutions. Institutionalization is often associated with, if not accused of, high mortality and morbidity rates of aged residents.11,12 Institutionalization is also associated with the residents' increased disorientation, helplessness, disengagement, depression, and depersonalization.13,l4.15
A different picture has been described by Kayser- Jones,16 who compared two long-term care institutions for the aged. Using the anthropological fieldwork method, she concluded that institutionalization by itself does not necessarily bring despair, low morale, or depersonalization. In one of the facilities she found residents who were happy and fulfilled in spite of their disability and institutionalization, in the other she found the exact opposite.
Gubrium,17 in his enlightening book Living and Dying at Murray Manor, unveiled the existence of a social world among residents of a geriatric center; a complex world of which (he care providers knew very little. Tobin and Lieberman18 added the dimensions of personality traits and timing to the complexity of adjustment to nursing home environments. Following the latter's approach, this research was directed at understanding the complexity of adjusting to nursing home reality by the physically and cognitively disabled aged.
This part of the article presents a preliminary report of a more extensive, ongoing study using the participant observation techniques.
Setting - Data collection took place in one of the long-stay wards for disabled aged in a large geriatric center in Israel. The facility has a multilevel program for 1,000 elderly residents, which is adapted to the ambulant independent aged, the frail aged, the geropsychiatric cases, and the very disabled aged. The latter are the subjects of this research.
Out of the nine long-stay wards for disabled aged, one ward was randomly selected to become the central base for data collection. Observations were also conducted in other wards, but mainly to verify selected phenomena. Each ward is located in a separate building and houses 30 to 33 residents. Care is provided by nursing aides under the supervision of a nurse and a physician. It should be noted that once a resident enters the disabled ward, it is usually his or her last home.
Procedure - The fieldwork lasted a full year, from November 1983 to November 1984. The 500 hours of observation were planned to cover all 24 hours of the day, weekdays, and weekends. Observations were also scheduled during holidays, special events such as national election day, birthday parties, or periods of ill health. Most of the time was spent among the residents, observing their actions, listening to their thoughts and beliefs, and learning about their feelings, ideas, values, and morals. Observations were also conducted during joint activities such as personal care hours, family visits, and during meal times. I joined them through solitary times and during the endless hours of "Waiting for Godot" ; that endless waiting for something to happen, so vividly described by Beckett.19
Communication presented some difficulties and dictated the necessity to converse in different languages. Although many residents were multilingual, their Hebrew was limited because they emigrated from 12 different countries to Israel late in life. Conversation, however, was restricted to Hebrew, English, and Yiddish.
The other two main information sources were the family members and the nursing staff. The nursing staff not only knew the residents well, since they had worked in the same ward for many years, but were also familiar with many of them or their families before admission to the facility. Many of the staff lived in the same area. Very little of the staffs information was recorded anywhere.
Study Population - The target population included the total number of residents who stayed in the ward during the year in which the study was conducted. The population consisted of 43 aged, all Jewish, of whom 27 were women and 16 were men. Their ages ranged from 65 to 95, with an average age of 80. About one third of the residents had a living spouse, but only two resided in the facility, none of them in the same ward. Eight (18.6%) of the residents had neither a spouse nor a living child. The majority of the aged (81.4%) however had at least one child who lived in the area.
As Israel is a young country populated by immigrants, the majority of its aged were born abroad. About one fifth of the residents were bom in Israel, the majority immigrated to Israel, some in their youth (28%) and others in their advanced age (46.2%). Of the non-Israeli born, 29 (82.6%) came from European countries and North America, the others emigrated from Islamic countries in Asia and Africa. All the residents are limited in their ability of selfcare. Eighty-eight percent (38) were confined to wheelchairs, the remainder used walking accessories. The length of stay in the facility ranged from a few months to 20 years, with a median and average of 4 years.
Of the original group of residents who lived in the ward at the beginning of the study in November 1983, 27 residents (81.8%) were alive at the end of the first year and 19 residents (57.5%) by the end of the second year. In comparing the characteristics of the deceased to those of the survivors, there was a higher incidence of cancer among the deceased, more were men, and more were married. Both groups were similar in age, length of stay in the institution, country, and date of immigration.
Data Analysis and Findings
Close acquaintance with the residents revealed a unique and dynamic world that an outsider on a short visit could neither notice nor appreciate. This world has its norms, sanctions, and taboos; its own social hierarchy, coalition formations, cliques, rivalries and competitions. It has its social order as well as its chaos. There is a great deal of activity under the mantle of passivity. What seems to the outsider as aimless behavior or daydreaming is merely a cover for a rich, alive world. I would like to shed light on another layer of this hidden world of nursing home inmates, a world that consists of their reality and the wide array of survival strategies they use to cope.
The Core Dilemmas:
The ethnographic material revealed that the disabled residents had four major concerns they had to overcome. Not only did each concern contain a paradoxical element within itself, but often contradictions arose among the interrelated concerns. The four major concerns identified were:
1. How to achieve fast relief from physical discomfort in a situation of continual discomfort.
2. How to maintain a balanced relationship with staff, fellow residents, and family members in an unbalanced reality.
3. How to retain a sense of independence and self-uniqueness in a state of dependence and collectiveness.
4. How to make time pass in a meaningful way, while acknowledging their own finitude.
Physical discomfort is a common occurrence among the residents during the day and night. Many experience persistent pain , sensations of numbness or itching, burning, pressure, physical fullness, or shortness of breath. Relief of physical discomfort becomes, therefore, their main concern. The major resources to fulfill these urgent needs are the residents themselves, the staff, and occasional visitors. A great deal of the residents' time, energy, and effort is invested in searching for modes to avoid discomfort, or minimize its effect.
In the course of this article, I will illustrate several of the many strategies residents use to fulfill their basic needs. To achieve this goal without jeopardizing the relationship with the staff or affecting the self-image of residents is a complicated task. As we will see it demands that the beholder be a scholar as well as an implementor of the decision-making process, to have the change agent's skills and the negotiator's expertise. All names are, of course, fictitious.
The first survival strategy residents use is to study their own bodies carefully and serve them patiently and skillfully by acknowledging posture, functions and limitations, body time, and body signals.
For Shmuel, a 65-year-old hemiplegie male, the "exact and right" position of his paralyzed leg could make the difference between unbearable pain combined with trembling of his whole body or rest and comfort. It is only natural for him to spend most of his time planning, calculating, and guarding his legs from fellow table partners or a nurse's careless movement. An outsider might judge this behavior as "doing nothing" or "daydreaming"; whereas, in fact, he is very busy doing what is crucial and meaningful to him.
Rebecca, an 87-year-old woman in a progressive state of rheumatoid arthritis, has the same dilemma every day after lunch. "What will be better for me? Should I take a nap now and rest my back or maybe it will be better to have a good night's sleep for a change?" Building a daily schedule and changing it constantly according to unexpected occurrences is another active survival technique.
Another example is Rosa, an 82year-old hémiplégie woman who recently emigrated from Russia. She is one of the few "fortunate people" in the ward because she is able to use the toilet without help, except for a walker. She has learned that it takes her more time to get to the bathroom in the afternoons when she is tired and on days she gets "water pills," then she really has to rush to stay dry. Rosa is well aware of her body functions and adapts her activities accordingly.
Sometimes studying one's body signs and symptoms can be a difficult and ambiguous task, as it is for Veronica. Veronica is severely restricted by rheumatoid arthritis, osteoporosis, and duodenal ulcers caused by years of steroid treatments. "This pressure I feel," she once told me, "I really don't know what it means. If I ask to be taken to the toilet again and again with no results, I will bother the workers, but I also hate to think what might happen if I am mistaken and it turns out to be not just a pressure."
Studying their own bodies as opponents as well as friends is a vital necessity for the disabled residents. They become prisoners of their own bodies, which have to be served constantly. They memorize the "right" postures and positions that agree with their bodies. They learn the body's signs and signals, its limitations, and its possibilities. They plan their daily, hourly, or momentary schedule according to their bodies' demands. New and imaginative strategies have to be discovered to please their bodies, disabled as they are.
Planning one's actions carefully is another widespread and useful survival technique. Careful decision making involves attending to environmental assessment; weighing help requests, including amount, manner, timing, and person; and regulating resources. The residents use attentive listening and observation techniques. All information might have relevance for them. If a nursing aide calls in sick, they might not get the appropriate attention. Listening and observing also provide some interest and good topics for conversation. Attentive listening is often misinterpreted as passivity or endless waiting, whereas it is, in fact, a vital survival skill.
The residents need to ask for help for many of their daily activities. Careful planning is practiced to decide when to ask , for which kind of service to ask and from whom, and what is the right manner of asking for help. Residents must also weigh whether it is not wiser at times to rely on their own limited capabilities or just to give up. This process takes present and future costs and rewards into consideration.
Careful planning is also needed in regulating one's scarce resources concerning material goods. "What are they serving for dinner tonight? Should I open my last can of sardines?" Benjamin, who is 82 years old and a heavy smoker, counts his remaining cigarettes again and again with his shaking parkinsonian hand. He has to be certain that his daily rate of cigarette consumption does not exceed the rate of cigarette supply.
The new supply is expected to arrive only with his son's next visit. Although his son visits every week, the exact day of the visit always remains a puzzle for Benjamin. The uncertain variable poses a great difficulty and often makes the careful rationing of cigarettes useless.
For the disabled residents, these decisions are important and deserve systematic assessment and planning. Careful appraisal is needed to evaluate choices and regulate resources for decision-making processes.
Avoiding unnecessary dependence is an important survival strategy among residents. The residents know from their own long experience that dependency demands its own dues. Being in a dependent role, they try to maximize their potential and rely first of all on themselves. Veronica has a specially designed glass that enables her to drink her morning coffee by herself. A friend skillfully added plastic elements to her radio's button so that she can listen to music without asking for help.
Institutions are often blamed for their rigid routines. But from the resident's viewpoint, there is some blessing in routine . If tea and cake are served every day at four o'clock, it means that there is something nice to look forward to. It also means that there is no need to negotiate or ask for favors if something will be given anyhow.
Some of the more influential residents succeed in incorporating their special wishes and desires into the nursing aide's daily routine. Debra, an 86year-old woman who has been in this ward since its opening, is well known for her achievements in that respect. She receives two glasses of warm water with lemon juice at every meal without even asking or reminding. She is also the first one to be taken to the shower every day.
If a newly admitted resident or an inquisitive researcher dares question this arrangement, he or she always gets the same answer: "Because this is how it has always been." The example of Debra illustrates successful management, where a resident's establishment of a routine makes repeated negotiation unnecessary.
The strategy of strengthening relationships with helpers involves coalition formation and reinforcing staff. Although the former strategy extracts a great deal of influential energy, the coalition formation strategy is the more widespread mode of coping. The relationships between the residents and staff were not found to be unidimensional between "inmates" and "care providers" but rather of a multidimensional nature. Coalition formation is based on common country of origin, common foreign language, previous acquaintances, shared interests, and exchange of goods and information as well as personal likes and dislikes.
Residents reinforce the staff by using negative or positive reinforcement. They threaten to report a nursing aide to the head nurse, complain or praise individuals during family visits. They ignore or show personal interest in the nursing aides' family lives. Tiiey can withhold or give small presents. In fact, the residents and their families have an active role in shaping their social atmosphere. Tlie webbing of personal relationships between residents and staff gives a better assurance that help will be delivered when needed.
Another coping strategy in avoiding dependency is to be able to lower aspirations to match diminished capabilities. Most of the residents use this strategy to different degrees. The process of lowering aspirations could best be illustrated by the following example.
Natán, a religious old man who has a wife and five children, shared his feelings with me on Passover Eve. "I prefer to stay here," he said. "Certainly, I miss the Passover ceremony I used to conduct at home, but I get tired very easily now. I cannot use the toilet at home. On my last visit at home I was too excited. I got an awful asthma attack. They did not know what to do. I spoiled their holiday, and I was sick myself for two weeks. They all invited me to come, you know, they begged me to come. No, I'd rather stay here. Yes, now it is better for me to be here."
It is not easy for a person to be old, sick, and disabled or to reside in an institutional setting. Just coping with simple daily activities demands a great deal of strength, persistence, patience, and ingenuity. It also demands being able to deal with the awareness of one's decreased capabilities, regression, and despair.
During the data collection period I went through a unique and enriching experience that made me realize the tremendous strengths embodied in these people. For me, in a paradoxical way, staying with the disabled aged was not a lesson of weakness and pity, but a lesson of courage and admiration for these people and many of their care givers.
The purpose of this article was to describe the active role disabled aged having in shaping their lives in an institutional environment. This, however, does not deny the existence of hopelessness or passivity in some of the people, some of the time. The intention of this article was to emphasize that ignoring the dynamic role of the aged is not only an underestimation of old people, but is also an inaccurate perception of reality.
On one of my last visits to the ward, Sh mue I asked me if I had already chosen a name for my research. I asked him if he could recommend a title that would best represent their present lives. Shmuel concentrated for a moment and said, "Call it 'The Land Without God.' "
In a reality abandoned by God, people learn to rely on themselves. Nurses are by no means substitutes for God, however, nurses should be aware of the tremendous influence that every word, gesture, or action has on our clients, for better or for worse. We cannot bring God to their land, but we can make it a better world in which to live. We can bring relief to their physical discomfort. We can communicate warmth, caring, and respect. We can help them pass time in a meaningful way and create small joys. It is on the basis of old people's strengths and not only on their weaknesses that we have to plan our nursing interventions.
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