Aging: Deviation

Emily Wentzell notes that aging provokes disjunction. To demonstrate this, Wentzell presents the example of her grandmother who, nearly 80, does not feel her chronological age and asks, when she see her reflection, ‘Who is this old woman?’ Aging changes one of the things we think we know best: our very self-image. Gradually, over time, the mere act of existing alters our appearance, and in some cases, social roles within society and physical abilities. These changes may also bring with them culturally prescribed life markers such as school graduations, marriage, having a child, and retirement. These markers can change how one identifies the self: “a graduate”, “a spouse”, “a parent”, or “retiree”. Each of these markers in the life cycle can create connections, as addressed by Wentzell, but they also create new pathways within the identity.

As Jordan Lewis suggests in his notes, age related changes bring physical, mental spiritual and emotional changes, many of which are deeply positive. He notes that he was raised not only to respect his Elders in Aluet Alaskan society, but also to strive to become an Elder himself. In this world, to be an Elder brought honor and respect, sought out for “knowledge and experiences”. Becoming older in the mainstream United States, however, deviates from this traditional model; individuals work to prevent signs of the aging process. Here, participating in the market economy through work and paying taxes brings social status. Retirement can, to some, signal an exit from the active workforce and entrance into a more “dependent” group. This change is often resisted.  

My own research touches on the struggle to maintain autonomy and established social roles, such as “a parent” or “spouse” after a diagnosis of Alzheimer’s disease or a related disorder (ADRD). I discovered this topic as I sought to learn more about how families affected by ADRD prepared for hurricanes in Florida. The cognitive and behavioral changes associated with ADRD can affect the relationship between the caregiver and person diagnosed with the disorder (Gaugler, Zarit, & Pearlin, 2003; LoboPrabhu, 2006). These changes can impact decisions made about treatment and daily care, and they can shift social roles which can, ultimately, impact disaster response.

In the early stages of the disease, the caregiver may still perform his primary social role or maintain her identity as a “spouse” or adult “child” (LoboPrabhu, 2006). Once cognitive decline is formally diagnosed, these social roles can begin to shift and deviate from their past positioning (Gonzalez-Salvador, Arango, Lyketsos, & Barbara, 1999; Romero-Moreno, Márquez-González, Losada, & López, 2011; Sanders & Fortinsky, 2012). During the early stages, especially if a professional has not legitimized the cognitive deficits and resulting behaviors (forgetfulness, safety, and judgment problems) by labeling the disease, family members may have more difficulty taking on a “decision-making role” (Christensen, 2012; Kleinman, 1973, 1980; Womack, 2010). Conversely, family members may try to reason or argue with the person with ADRD to the point of frustration, in an attempt to take on a new, more parental role in the relationship (Christensen, 2012). In Western societies, this dynamic can be extremely disempowering, as the person with the diagnosis not only loses memories and mental capacities, she may also lose their status as an adult citizen, their autonomy, and self-identity (McLean, 2007).

This desire for autonomy was carefully documented by Taylor (2007), a professor of Psychology who was himself diagnosed with early-onset Alzheimer’s-type dementia. He writes about his loss of a career and the shifts in his social life. He emphasized his desire for autonomy in his ever-changing relationship with his wife as the disease progressed over time. He writes, for example, about being forced to relinquish the keys to the car because his wife and adult children had evaluated the risk of his driving as too great. One of the ways in which Taylor describes his struggle to maintain autonomy was by fighting to make decisions about risk, such as his ability to drive or his need for medications.

A natural disaster is a time of crisis which brings underlying patterns and inequalities to the surface (Oliver-Smith, 1998). In my own research, I have also found that pre-diagnosis social roles and desire for autonomy can impact disaster response. One caregiver reported that her husband refused to evacuate for an impending hurricane that was predicted to be (and was) a direct hit to their town. It is likely that his reluctance stemmed from both his desire to maintain his autonomy within the relationship and his concern about leaving his familiar environment. His caregiver, who had previously been his wife and partner, was taking on the care provider and decision-maker roles. Though his ability to calculate risk was by all biomedical standards, impaired, as a person he was still intact and he made his opinion known through resistance. Certainly, not all individuals who grow old will acquire cognitive deficits and not everyone will experience a natural disaster. These conditions provide a small window into the struggle against the loss of autonomy that can be associated with aging “in cultures where older age is pathologized and youth lionized against a backdrop of Cartesian dualism” (so well put by Emily Wentzell in the initial post).

An individual’s relationship with their own ageing process is largely shaped by the society in which they live. I can’t help but think that patterns of resistance in I have observed in South Florida would be found among the Aleut of Alaska.

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Biographical Note: Janelle Christensen is a Program Data Analyst at Palm Beach State College.