Building Community in the Nursing Home?

April 21, 2009

Gerontology students in Indiana have been participating in a week long facebook discussion to celebrate Careers in Aging week. This post elaborates on a thread related to the possibility of creating community in long term care facilities. I believe it can be done, but that many factors mitigate against it. What follows is an abstract from my forthcoming book Elderburbia: Aging with a Sense of Place in America, on this subject…

A good place, then, is also a “keeping place” – it holds people together through their common participation in its qualities. As Wendell Berry put it in another essay…”a human community, then, if it is to last, must exert a kind of centripetal force, holding local soil and local memory in place” (1990:155). Perhaps our chief criticism of the institution we call the nursing home, then, should be that it too often erases memory. Now this may be difficult to perceive at first for we are talking about noticing absences and silences – the semiotician’s zero signs. How do you notice something that’s not there? I’m suggesting that we think not about what we see, or hear, or smell, when we enter the nursing home, but what we don’t see, don’t hear when we enter into this space. In evaluating the quality of this environment then, we might ask:

Where is the memory of this place?

Where is the evidence that people have lived here?

Where are the personal traces of former residents?

Where are their pictures, their mementos, their trophies, their headlines, their

            scrapbooks?

Did they laugh? Did they cry?

Were they loved? Did they love?

 

…and where is the evidence that people died here?

Where are the memorials, the funerals, the survivors?

…and did anyone make an impact here?

as a worker?

as a volunteer?

as a family member?

 

Too often, we look and do not see. Traces have been obliterated. Death has been spirited out the back door. The room has been cleared and cleaned to receive another. Valuable possessions are bagged, tagged, and gone with a family sometimes eager to never look back.

By the same token, the good nursing home remembers its residents to us. It celebrates their presence and enables them to create place. It creates home through enabling its occupation, its dwelling, through bodily practice. It invites former residents to return (yes, they do exist). One sees previous family members returning to sustain ties with friends of the deceased. One sees memorial services to acknowledge death and graduation ceremonies to celebrate the triumph of rehabilitation (see Shield 1988: 76 ff). Yet, it is a struggle to enable the creation of place where so many factors mitigate against memory making:

 

„          the lack of temporal depth in relationships due to staff rotation, the fear of approaching the sick, and death itself

 

            At the Crescent Nursing Home, where anthropologist Nancy Foner studied the working lives of nursing assistants, the turnover rate is remarkably low (as low as 5%). She attributes this low turnover rate to the relatively high wages and job stability offered to the predominantly Caribbean and Hispanic workers in this unionized setting (as compared to most nursing homes around the U.S.). The long tenure of most nursing assistants positively reflects on the caring and enduring relationships engendered among staff and residents in this facility (Foner 1994:17). Compare this with the average turnover rates ranging from 40% to 75% annually in most nursing homes around the country and the very real problem, as I have seen, with nursing assistants coming and going so quickly that they have no real possibility of forming lasting relationships with patients and families. Foner also acknowledges that nursing assistants who spend too much time with residents may risk the ire of nursing directors or other staff who follow on the next shift and must pick up the “bed and body” work left undone. J. Neil Henderson, in his ethnography of Pecan Grove Manor, noted how superficial the interactions between nursing assistants and residents might be. In the words of his interviewee, the Director of Nursing:

All of them (CNAs) are needed for basic care, so that the emotional side is kind of left (undone)…It is hard to just sit down and have eye-to-eye contact and really feel close to the patient when you are giving them daily care…(1995,45).

Renee Shield, in her ethnography of Franklin Nursing Home, notes how peer relationships among residents are clipped by the limits put upon exchange and reciprocity. The development of horizontal relationships with potential friends is conspicuous by its absence, as residents who lack possessions, strength, and health have little to exchange with peers (1988,155). Hence, residents attempt to develop vertical relationships with staff (albeit dependency relationships) to survive. When residents do provide staff or visitors with little gifts of kindness, there is often an attempt made to refuse them, sometimes with a citation of official policy. As Shield has observed, staff and visitors often do not want to be put into the position of having to reciprocate out of guilt, nor being trapped in an escalating structure of exchange that cannot, ultimately, solve the fundamental existential problem (Shield 1988, 172-173).

Shield adds that avoidance of enduring relationships may have some self- protective, though perhaps not adaptive consequences:

Nurses remark that new residents often try to make friends after they have begun to settle into the nursing home routine. But if a friend dies or becomes ill, the new resident learns that it is dangerous to make friends. Keeping interactions to a minimum protects the self against the emotional trauma of these losses. The emotional distance that staff members keep from residents is similarly self-protective. People-work activities, shifting schedules, and frequent changes in nursing assistant-resident assignment prevent continuity. In these ways the nonenduring nature of resident-staff relationships is per­petuated (1988,166).

In the end, it may be the illusion of timelessness, the denial of aging and death, that prevents the establishment of “communitas” in the nursing home setting (following Turner 1969). In “normal” life, outside of the institution, definitional rites of passage mark time and place individuals within the context of a supportive cultural matrix. Typically, rites of separation, followed by a liminal period, are closed by conjoining rites of incorporation, wherein the initiate rejoins the cultural fold, albeit in a changed state. The nursing home, as Shield argues, is characterized by an ongoing, neverending state of liminality. The resident qua patient leaves society but neither re-enters nor fully achieves a new status.

The illusion of timelessness belies the certainty of how limited the resident’s time actually is. The time of future peril that intact residents perceive as their fate threatens the quality of resident interactions rather than intensifies them. The residents interact superficially and guardedly. There can be little chance of communitas where the present is benignly misrepresented as safe and timeless, the future is known to be uncertain and perilous, and individuals serve as reminders to one another of their present fragile security and future certain danger (1988,208).

 

„          the dementia which robs people of memory-making capacity

 

While dementia or Alzheimer’s disease may not be the primary diagnosis for most  nursing home patients, the disorder is, nevertheless, ubiquitous in the setting. A typical study (Hing 1989) estimates that 66% of the nursing home residents in the U.S. have at least one mental disorder (generally dementia). One widely recognized epidemiological study puts the rate of moderate to severe dementia among community-residing persons over 85 at 47%. As the over-85 group is the fastest growing segment of the population, it is no surprise that the condition is very common in nursing homes. While Alzheimer’s dementia is popularly thought of as memory loss (and indeed, the loss of long term memory is undeniably present in more advanced dementia) it is the inability to make new memories, which causes functional problems for the individual. Alzheimer’s disease is, in this light, a learning disorder – the patient is unable to impress events and thoughts upon the brain for later recollection and use. Events of the remote past may be recollected with pleasure. Core elements of identity may be sustained through the active support of others (as Silverman and McAllister 1995 have shown). Even the current flux of the present can provide great pleasure and meaning. The recent past, however, the anchor of new relationships, may not be sustainable in memory. Small scale environments, such as adult day care centers, have the best chance of supporting the development of new relationships and marking events ceremonially. These markers – these memories – enable participants to maintain a sense of the passage of time and the body’s participation in a web of meaningful human relationships.

 

„          the restrictions of the physical environment which prevent intimacy from developing among residents and others

 

 

Most ethnographers of the nursing home scene have commented on the difficulty of maintaining privacy in the institutional setting. Indeed, the medical model which dominates the architecture of the nursing home constitutes a virtual panopticon in which most activities of the residents are capable of being scrutinized by the powers that be (c.f. Foucault 1979, Stafford 1997). Fire and safety codes, the wishes of family members regarding sexual conduct of elderly parents, the rarity of single rooms and small private spaces, the dispensability of small modesties, and the enforced familiarities of well meaning staff and visitors, all combine to create an environment which, as Goffman (1961) and Henry (1963) mave noted for total institutions, strips the inmate of his/her individuality and important, unique markers of personhood and biography.

As Verbrugge and Jette (1994), and many subsequent observers have noted, disability, health, and aging are not located in the body so much as in the relationship between the body and the environment. Hence, our attention is turned to the more politically sensitive notion of “disabling environments” which, being poorly designed, distort sound, amplify glare, restrict mobility, and sanitize smells.

 

„          the undeniable diminishing of the body’s capacity to extend fully into space due to impairments in vision, smell, hearing, mobility, taste, and touch

 

Yi-Fu Tuan, master interpreter of the spatial experience, notes how the synesthetic experience, in which all of the senses are employed, etches itself on our memory in a way unmatched by the unidimensional memories of the “seen:”

Life is lived, not a pageant from which we stand aside and observe. The real is the familiar daily round, unobtrusive like breathing. The real involves our whole being, all our senses (1977,146).

How can the person with hearing impairment, loss of smell, loss of vision fully experience and therefore fully remember either the routine or the special events which surround one in the nursing home environment?

So it’s not only the erasure of memory but the difficulty of making new memories which works to drain the nursing home of meaning. Professionals are well-intentioned in their efforts to make institutions homelike. Yet, not understanding the bodily experience of memory, nor the role of cultural processes, the professional intervention is often misplaced. As a kind of semiotic strategy, it tries to recreate home through its symbolic representation. It uses wingback chairs, the charade of a library with books purchased by the pound, the false fireplace hearth to create a simulacrum of home. As such, it trivializes the notion of home and, indeed, may have the opposite effect on the resident. The attempt to recreate home too often draws attention to its impossibility.

Bahloul, in The Architecture of Memory, clearly demonstrates how this lived experience of place, this quotidian routine of “taking care of everything,” provides a framework for its remembrance:

Domestic memory focuses not only on images of places but also on images of concrete acts…Remembrance of socialized domestic space is thus based above all on the practice of this space as it is articulated in the repeated inter­actions of its agents…Remembrance of the house is the symbolic locus for the embodiment of social practices experienced in daily life; it constitutes a system of bodily practices (1996,136).

 

If we truly listen to the authentic voices of the residents, we can learn a great deal about the  notion of home, and the role of memory in helping to sustain and create a sense of place.  We can learn that home and self are intertwined. That home and spouse can be identities. That space is transformed into place as it supports a sense of human agency and  partakes of the qualities of the human encounter (Tuan 1977,143). But listening is not enough. An ethnography of place and memory involves us not in its representation but in its creation. As Hack and I recreate the place he calls home we make memories together. By this means do we create place and not merely recollect it. By this means does memory become more than cognition. By this means does memory become transformational in Myerhoff’s sense, a kind of sacralizing process by which the sanitized space of the nursing home becomes the experienced and meaningful place of genuine human interaction.

 

 


communities for life approach beginning to jell

April 3, 2009

The meetings of the NCOA/ASA in Las Vegas saw multiple sessions and meetings on the subject of aging-friendly, elder-friendly, aging-ready, communities for life, etc. There is no agreement on a singular phrase at this point, but lots of interest, as evidenced by the prominent role of the topic on the agenda. There were multiple single sessions and a day-long intensive on Tuesday, March 17. Work in Indiana was profiled in several sessions, including two that focused on the Indiana NORC’s (naturally occuring retirement communities), also called communities for life. A sidebar meeting convened by Andy Scharlach, Kristin Bodiford and Rosemary Williams attracted about 30 people and it was decided to seek a larger presence on next year’s agenda and convene a social event. Next year’s ASA meetings are to be held in Chicago. The day long intensive I participated in drew an estimated 200 people over the course of the day. It seems clear to me that the shift to a community paradigm, complementing  the traditional  focus on services to individual seniors, is happening. I believe the political climate is ripe for this approach, indeed, that the political climate is not the reason for but the consequence of a broad desire to come together as citizens to improve the world.


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