In rural Mexico, people often say that Alzheimer’s does not exist. “People do not have Alzheimer’s because they don’t need to worry,” said one Oaxacan, explaining that locals lack the stresses that people face “over there”—that is, in the modern world. Alzheimer’s and related dementias carry a stigma. In contrast to the way elders are revered for remembering local traditions, dementia symbolizes how modern families have forgotten the communal values that bring them together. In Caring for the People of the Clouds, psychologist Jonathan Yahalom provides an emotionally evocative, story-rich analysis of family caregiving for Oaxacan elders living with dementia. Based on his extensive research in a Zapotec community, Yahalom presents the conflicted experience of providing care in a setting where illness is steeped in stigma and locals are concerned about social cohesion. Traditionally, the Zapotec, or “people of the clouds,” respected their elders and venerated their ancestors. Dementia reveals the difficulty of upholding those ideals today. Yahalom looks at how dementia is understood in a medically pluralist landscape, how it is treated in a setting marked by social tension, and how caregivers endure challenges among their families and the broader community. Yahalom argues that caregiving involves more than just a response to human dependency; it is central to regenerating local values and family relationships threatened by broader social change. In so doing, the author bridges concepts in mental health with theory from medical anthropology. Unique in its interdisciplinary approach, this book advances theory pertaining to cross-cultural psychology and develops anthropological insights about how aging, dementia, and caregiving disclose the intimacies of family life in Oaxaca.
|Publisher:||University of Oklahoma Press|
|Product dimensions:||5.90(w) x 8.90(h) x 0.70(d)|
About the Author
Jonathan Yahalom is a psychologist at the Department of Veterans Affairs in Los Angeles. He holds a PhD in clinical psychology from Duquesne University.
Xavier E. Cagigas is Associate Director of the Hispanic Neuropsychiatric Center of Excellence and Codirector of the Cultural Neuropsychology Program at the UCLA Semel Institute for Neuroscience and Human Behavior.
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The Problem of Aging in Teotitlán
CONTEXTUALIZING CAREGIVERS, ELDERS, AND AGE- RELATED FORGETFULNESS
Pedro is tricky. An elder in his mid-70s, he has begun to forget not only basic things but where he is in the world. He wanders. He tries to escape to the streets when doors are left open, and he hides objects when confined at home. His family is responsible for his care, an experience they say is challenging. "Sometimes I can't take it, taking care of him. Because he gets me so angry," said his youngest son, Sergio. Part of this challenge involves how they make sense of Pedro's behavior. "What I just don't understand is if he uses [his forgetfulness] for his own gain," reflected his eldest son, Manuel. "Because the thing is, he is tricky. He's very tricky. ... That's why I can't understand if he really forgets or if he's just tricky. So I don't know — it's on him if he's lying to us, or if it's true what's happening to him." Manuel is questioning the basic existence of Alzheimer's. These uncertainties — and the subsequent family tensions they cause — are a dominant occurrence for caregivers in Teotitlán.
Sergio's family home was located on a quiet, paved side street, but he lived within seconds of Teotitlán's main commercial and transportation artery, lined with shops selling colorful tapetes and other household provisions. This 30-year-old local was unmarried and well known in Teotitlán for running his family's successful tortilla business. After learning about the nature of our project, Sergio warmly smiled and invited us to his home. Inside, the courtyard was paved, with no visible livestock, fruit trees, or weaving looms. The walls consisted of smooth concrete, instead of adobe. There was an overall calm that distinguished private life from public streets. Sergio directed us into the quiet and shaded altar room. It was sparsely decorated, with some wooden chairs lined along the wall. On one side sat a wooden table that served as the family altar. It displayed dated and faded family photographs and a large colorful painting of the crucifixion, alongside fresh- cut flowers and unlit candles.
Sergio invited his 45-year-old brother, Manuel, and Linda, their 65-year-old mother, to join. Compared to his brother, who lived on the same property in his own home with his family and dependent children, Sergio remained at his childhood home, living with his parents. This was a typical arrangement for Teotiteco single adults, who are expected to contribute to family households until having a family of their own. Sergio helped with finances by managing the tortilla business and harvesting milpa on communal farmland, but he spent much of his time alongside his brother and mother, directed toward caring for Pedro, their 75-year-old "tricky" and forgetful father. For the past two years, Pedro showed difficulty remembering family member names and often misplaced objects, while accusing others for their disappearance. Pedro also complained of knee pain from having worked in muddy farmlands and displayed signs of visual hallucinations, claiming that snakes were crawling on walls.
But Sergio and his family mainly described how they found other behavioral changes most distressing. On one occasion, Pedro threw a glass bottle at his wife while she was trying to help him bathe, leaving her frightened to approach him for weeks. And just months before my visit, Sergio and his family experienced a more alarming episode during a trip to Tijuana. Pedro wandered away from their relatives' home and went missing. Hours later, after presumably boarding a bus, someone spotted Pedro walking alone in unfamiliar streets. Sergio described his relief that his father was still alive, but in his account of this and other events he also described feeling frustrated and angry:
I can't tell him not to do something. He'll always do it, anyway. And I can't force him to do something he doesn't want to do. Since he'll just hit me. And he's my dad so of course I can't hit him back, even if he gets me angry. And I personally think that that's a really big problem for me. Because even if he gets me very angry I still try to respect him.
The previous ways Sergio had related to his father stood in contrast to the realities he encountered now. Sergio lived in a community marked by the expectation that parents and elders are respected on account of their age. And, specific to their relationship, Sergio had grown up admiring his father for his household authority and the success he had garnered in establishing the family business. In learning more about the details of this family's experience, it became clear that so much of what they found difficult in caregiving involved the negotiation of social expectations about respect for elders at a time when respect seemed so difficult to locate.
This chapter introduces the details of these social expectations, broadly aiming to trace what old age and related illness mean in a setting marked by social change, and the segre-social dynamics inherent to local caregiving experience. Caregiving represents a new form of social life based on care practices for elders' forgetfulness in a setting that perceives forgetfulness itself as representative of broader, unwanted cultural change. As discussed in the introduction, the segre-social dynamics that interest me are meant to account for this phenomenon. They draw on Paul Rabinow's (1996) pioneering concept of "biosociality," a description where "new group and individual identities and practices" coalesce around public understandings of biology such that everyday life becomes redefined and reorganized by biological conditions themselves (p. 102; see also Nicholas Rose's  concept of "biological citizenship" and Whitney Duncan's  concept of "psy- sociality"). For example, as information about Alzheimer's disease circulates in U.S. settings, new forms of social life have subsequently surfaced. The development of caregiver and patient support groups, political lobbying for research funding, education, prevention campaigns, and related activities all foment a different lifestyle with different social relations, essentially "draw[ing] involved families to an [Alzheimer's] society" (Lock, 2007, p. 58). In Oaxaca, caregiving for dementia similarly draws individuals into new social configurations, yet broader understandings of dementia simultaneously can render caregivers misunderstood by and segregated from the larger community. My focus on segre-social dynamics thus accounts for the simultaneous social and segregative dimensions inherent in caregiving. This sociality is representative of novel forms of caregivers' relationships — both with elders and the broader community — while revealing how these relationships are embedded in a community regenerating the meaning of values concerning familial piety, gendered divisions of labor, and broader injunctions to maintain local tradition.
This chapter begins with an introduction to the set of caregiving voices and households that comprise this book, with focus on how caregivers have both affirmed and regenerated normative expectations about the provision of care in the context of migration and related social changes. Following this, I review demographic changes that have altered the Teotiteco social landscape and discuss how these changes lead to novel perceptions of — and challenges associated with — elders' increasing presence in society. Last, I explore local understandings of Alzheimer's disease and more general statements about age-related forgetfulness that are together indexed to concerns about social change, and I begin to consider how these perspectives contribute to the segre-social dynamics caregivers experience. As a whole, this chapter aims to contextualize information important to appreciate subsequent ones. Prior to attending to the cultural pragmatism that is the topic of the remaining chapters of the book, this chapter situates the setting of this study through constructionist theory, addressing how the meaning and experience of basic phenomena like age, illness, and identity are contingent on time and place.
INTRODUCING CAREGIVING HOUSEHOLDS
My decision to interview Sergio with Manuel and Linda is representative of a larger decision to study caregivers together, as constituting a single household unit. In part, this approach draws on common knowledge of Oaxaca and many other Mexican settings about how individual decisions are oriented toward concern for the broader family. Familismo (family-centeredness) and colectivismo (collectivism) are but two related concepts that point to the experience of loyalty to one's family and broader community, a commitment to serve the larger group over oneself (Cervantes, 2008, p. 12; Keefe, Padilla, & Carlos, 1979; Smith-Morris et al., 2012). These orientations are dynamic and involve how individuals pool financial resources, living spaces, caregiving responsibilities, and moral strength to serve the larger social unit (Calzada, Tamis-LeMonda, & Yoshikawa, 2013). Individuals feel strengthened by these larger pools of support, and reciprocally experience obligations to contribute to them. In Sergio's case, commitment to his family home is expressive of this felt responsibility; despite being an unmarried adult, he remains a contributing member of the household, supporting his parents and helping maintain their home. When or if he marries, social norms dictate that he redirects these responsibilities toward his new household, but he could continue to live with and provide support for his parents as well. For females, in contrast, norms dictate that married women relocate to live with husbands and in-laws. Yet regardless of these gender differences, all individuals in Teotitlán exist within larger social nexuses. Indeed, during the course of my fieldwork, I did not encounter a single individual who lived alone or with friends. All lived within family households. People seemed to take it as a given to support — and feel sustained by — the larger household, such that, to quote from another Oaxacan ethnographer, "to ignore the important role of the household [would be] to misunderstand how rural Oaxacans create their social universe" (J. Cohen, 2004, p. 23; see also Murphy & Stepick, 1991; Norget, 2006).
This section is devoted toward describing the general nature of the Oaxacan caregiving household, tracing features that define households in the context of contemporary social change and beginning to put into focus how such change translates to the provision of elder care. All caregivers explained that they took on caregiving responsibilities because it was expected of them as proximate family members (that is, members who lived on or near the same property as forgetful elders) (see also Guarnaccia et al., 1992; Guarnaccia, 1998). Indeed, the very fact that there exists no Zapotec word for "caregiver" or a related concept demonstrates that providing care for members of the household is a presupposed feature of everyday life. In Teotitlán as in most other Oaxacan settings, taking care of one's parents or one's spouse is simply what one does. Across my interviews with caregivers, nearly everyone responded with statements that they cared for elders "because he is my husband" or "because she is my mother." Caregivers adhered to relative social values about household and family cohesion, and they said that these efforts helped promote the larger family unit. Yet in the process of discussing how these values are upheld, caregivers also came to describe how contemporary features of social life have begun to challenge them.
An overview of the caregivers featured in this book illustrates how different family members have cobbled together household resources to jointly provide care for dependent elders. Table 1.1 identifies individual caregivers and basic identifying facts about their lives, respective households, and elders for whom they cared. As a whole, this table illustrates how different people come together for the provision of care, and how individuals act on behalf of the overall well-being of the larger household or family unit. This table also begins to introduce readers to the set of voices and the elders they cared for that comprise this larger study; it is my intention that readers continue to reference this table through the course of this book as additional households are presented. Even through brief review of this table, and with but one exception, each caregiver spoke about his or her experience in the presence of other family members who also contributed to the provision of care. This is to say, caregiving is a family matter. Caregivers' ages spanned from early twenties to midseventies, showing how varying generational sectors and familial roles are involved in the caring process and work toward this broader social good. And, while some younger children were tangentially involved in caregiving, no household reported that these efforts were significant in maintaining responsibilities, presumably because children were expected to help with less-laborious domestic chores and to focus on school and other activities related to their development.
In Oaxaca these collectivist sensibilities extend beyond immediate family and household spheres and include individuals appropriated through compadrazgo (fictive kin) networks. This is a type of godparenthood where a respected community member takes on financial and moral responsibility for another family's children. This expands the scope of whom one can call upon as family, and the way in which Oaxacans can foster greater confidence and solidarity within the community (see Murphy & Stepick, 1991, pp. 149–53; Norget, 2006, pp. 47–49; Sault, 1985; Stephen, 2005, pp. 49–50). For example, during my first experience at a wedding in Teotitlán, I was impressed to learn that although most guests were family members, nearly 500 people (a tenth of the 5,500-member community) were present. Through this and other interactions, I came to realize the impressive lengths that family networks reached. Indeed, in the context of this social setting, one of the most confusing hypothetical questions I initially posed to Alex was, what would happen if an elder did not have any family support. Alex and every other Teotiteco I had questioned responded exactly the same: "Your question doesn't make sense here." In Teotitlán there is a common understanding that every individual exists within a larger family network, and it is inconceivable that a person would find him- or herself without recourse to social support.
Familial relationships are strong in Oaxaca, but the reality is more complicated. Sergio and his family discussed how their parents have their own godchildren and a robust compadrazgo network, but then stated that these family visits have become more of a formality than a tangible source of help. "They can't be obliged to come," his brother said, and reflected on how help from other, more distant members of compadrazgo networks was more limited than he would have hoped. Similarly, Sergio and Manuel also discussed how other individuals in their immediate family who did not live with their parents also did not distribute caregiving responsibilities equally. They mentioned their sister, Janet, who lived in Teotitlán on different property with her husband and family. They described how Janet's visits were helpful in taking on supplemental responsibilities like reading to Pedro and distracting him from agitation. But the family told me that the infrequency of these visits limited the effects of Janet's good intentions. Other forms of absence further challenged the apparent cohesiveness of Sergio's household. While Manuel called Teotitlán his primary home, he visited California every few months to sell rugs and maintain other business, and had another brother who primarily lived in California and returned to Teotitlán a few times a year, less often than the family would prefer. At one point, when Manuel talked about this brother, he said, "It definitely affects us [not having all our family in one place] because not all of us are taking care of him. They don't live here and don't really know what's going on."
This point is not solely representative of shifting household trends, but of larger ones throughout the community marked by migration. More individuals are pursuing economic opportunities away from Oaxaca, which fragments households and families. Though it is difficult to accurately measure migration trends, a survey conducted by Rafael Reyes Morales and Alicia Silvia Gijón Cruz (2002) estimates that the average number of persons who had emigrated from Teotitlán in early 2000s was 0.57 people per household, or approximately 500 individuals per the 950 households in the community (p. 20). These are only estimates, however, and my anecdotal experience suggests that these rates may be higher. Indeed, while these numbers speak to the significant social fragmentation associated with migration, evidence from surrounding communities further puts into focus how transborder realities impact local household cohesion and provision of elder care. An article in Síntesis, a regional Oaxacan newspaper, reports that 5 to 10 percent of all elderly patients in hospitals came because they had been abandoned and lack social support because of migration (Jiménez, 2014). And, in other Oaxacan settings like Santo Domingo Tonalá, there now exists an NGO providing daycare (consisting primarily of social support) to elders who have few remaining family members in the community.(Continues…)
Excerpted from "Caring for the People of the Clouds"
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Table of Contents
List of Illustrations,
Foreword, Xavier E. Cagigas,
1. The Problem of Aging in Teotitlán: Contextualizing Caregivers, Elders, and Age-Related Forgetfulness,
2. Idioms of Distress: Symptoms and Etiologies of Progressive Forgetfulness,
3. Health-Seeking Behavior: Power and Belief in Medical Decision-Making,
4. Relationships With Elders: Caregiving Challenges, Strategies, and Perceptions of Forgetful Elders,
5. Relationships With the Community: Shared Values, Misunderstandings, and the Second Forgotten Subject,