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Caring, Dementia, and the Conception of Self

Written by Cassidy Barnes


Part I: Forming the Self


Hank likes logic: he prefers to deal with straightforward facts and numbers, finding emotions to be too messy and subjective. On a dark rainy afternoon, we sit adjacent on my apartment couch, and as he talks, he looks ahead at the blank wall rather than facing me. He speaks as if listing off bullet points, the last syllable of his words dragging on as he formulates his next thought. “My dad was an electrician, my mom didn’t work until I was probably ten or twelve and then she got a job because my dad was out of work because of the recession in the early eighties,” he pauses to think of the exact year, revealing his value for precise details and order. I interject to ask what his dad did during this time, to which Hank quickly responds: “I remember him doing everything. I remember him delivering pizzas, selling cash registers, um… just doing literally anything to make a buck.” He leans on the framework of the quintessential nuclear family to describe his childhood: his mom was a more present figure as she stayed at home while his dad was the breadwinner. Hank describes his childhood in terms of materials and income and of the things his parents were able to provide for him. When I ask him to describe the influence of his parents in his life, he hesitates. I let the silence linger as he tries different sentences, getting no more than a couple of words before deciding to scrap it and begin another. “[My dad] was— I don’t know, I never saw him, like show any emotion. Even anger, it was rare he would get visibly angry. Never seen the man cry, to this day,” he trails off and prompts me to move on to the next question. Later in the interview, he elaborates: “Money was important to him when I was growing up. It was always— it was always about money. And that wasn’t because he was some sort of money fiend, it was because he went through that period of not having any, and probably worrying immensely about being able to keep the house and provide for his family. Um, I mean, certainly the family was important to him, but he wasn’t an emotional person. But, um, making sure the family was looked after and had what they needed, that was always really important to him.”


As an adult, Hank models his father’s method of caring, demonstrating a commitment to ensuring his loved ones’ needs are fulfilled, that “everyone’s okay” and is never left without. He wants them prepared for any situation: “I want to make sure that I can either be there to fix it or it can take care of itself, you know?” This consistent focus on providing corresponds to a neoliberal conception of the self, which theorizes individuals as rational agents who determine their own future through the choices they make (Brown 2005, 57). A byproduct of neoliberal economic policies, the extension of these ideas into the social realm requires individuals to be prudent and calculating so as to make the most effective decisions for their personal progress, which they are ultimately responsible for (Brown 2005, 57). This places pressure on individuals to produce themselves as commodities to be consumed in order to find success. People are viewed as a “bundle of skill sets,” the accumulation of which increases their value on the market (Gershon and Alexy 2011, 799). The more unique an individual is, the more likely they are to stand out from the rest of the objects on the shelf. Hank internalized this idea as he describes defining himself by “the fact that I won five [drag racing] championships or I did that, and I should set a really good example for my kids to show— you want to achieve things.” As he says this, his voice indicates a tinge of doubt, periodically pausing as if to ponder the merit of his words.


This emphasis on individual agency necessarily involves a focus on the future as people are meant to be constantly building themselves up and planning their decisions around their future success and security (Brown 2005, 42). The perpetuation of this ideal and the underlying fear of not having enough present during his childhood has culminated in Hank’s desire to provide loved ones with the financial and material means to be prepared for any given situation.

We now move on to recent years, “fast forward to probably 2013? 2012? 2012? Can’t remember... She had a stroke,” Hank concludes. He proceeds to list events leading to his mother’s death in a matter-of-fact tone. “Um, and she got— like it wasn’t good, she was in ICU— she was in ICU for I think three months, and then stroke rehab for another three months. She got home, and she was home for about a year, then she had another little stroke, and then she went in for a little bit, came back out. Then she had another stroke just after Christmas that year, and she never recovered from that one, and then she died March 1st of 2015.” He paused, then filled the empty silence by wondering aloud what age she would be now, finding safety in detail and finality of numbers.

Hank then proceeds to the next phase on his timeline—moving his father into a retirement home. He picks out key points and minimizes the rest: this history was practiced as a result of repeating to each new doctor assigned to his dad. “So, fast forward a couple of years, um, ’til probably like, January of 2018… he was get— he was starting to get forgetful and this and that… and, um, we saw it coming, we had seen it coming, but you just don’t know how bad it is.”


 

Part II: Questioning the Self

The longer we talk, Hank becomes increasingly at ease; his comfort made evident by his turned, opened posture and the arm gestures that now accompany his answers. His speech shifts from the listing of points to the weaving of a narrative, absent of the earlier pauses and hesitation. The adherence to accuracy and facts gives way to the vocalization of curiosities and opinions.


As he outlines the process of caring for his father, who was diagnosed with dementia just over a year ago, Hank reveals how he began to question his ideas of selfhood—which are largely reliant on memory. As the accumulation of memories shapes and forms each distinctive individual, selves are viewed as the product of their experiences (Kaufman 2017, 557). Memory provides individuals with continuity, a database of experiences to reference when determining who they are. People are distinguishable because no one’s past is the same, yet when one has dementia, their past becomes lost to them. Without access to memory, the sense of a cohesive inner sense diminishes, along with the ability to narrate one’s self (Kaufman 2017, 563). Dementia brings to question the stability of the self, as the modern western neoliberal self does not allow for a coherent self to exist without memory. The neoliberal self is constructed around one’s skills and past achievements, making sense of history essential. A diagnosis of dementia carries a connotation of one’s life being “instantly over;” patients are narratively construed as ‘dead’ because they no longer possess memory (Hersher 2015; Taylor 2008, 323).


Neoliberalism shaped Hank’s conception of the self, but a necessary component of the neoliberal self is memory. If the self is a conglomerate of their skills and achievements, those who are unable to recall what these are cannot possess identity. The neoliberal theorization of the self cannot account for those unable to recall the characteristics that they have accumulated over their lifetime. Despite this, Hank still sees his father as exhibiting identifying characteristics, causing an internal struggle in an attempt to unlearn neoliberal ideas and craft new ways of defining the self.


Janelle Taylor advocates a conception of the self that is not bound to the individual but distributed amongst those for whom individuals care (Taylor 2008). She highlights how the self can be “emergent in practices of care” through an analysis of the repetitive behavioural quirks her mother has developed as a result of her dementia (Taylor 2008, 326). When out at a café, Taylor’s mother will wipe all the crumbs off the table and onto a napkin, then carefully fold it to contain the crumbs inside, preferring to clip them together as well when possible (Taylor 2008, 330). Her bundles are manifestations of the habits she developed during the years “she spent cleaning the kitchen counters, picking up after me and my siblings, working to create an orderly home” (Taylor 2008, 330). Although the behaviour seems bizarre, her mother has prioritized these details her whole life, and by ensuring such cleanliness was also a way she demonstrated care for others. An important way Taylor’s mother looked for her children was by maintaining a clean environment, and the collection of these crumbs was her way of striving to continue this care. Despite the neoliberal self-being made inaccessible by dementia, the self may be shown through care.


Similarly, Hank and his father regularly go for lunch on Fridays, and each week Hank’s dad insists on paying, demonstrating an effort to still fulfill the role of provider. Through his father’s efforts, Hank sees continuity in his father’s self. On numerous occasions throughout the interview, Hank confidently reports: “He’s still that guy who’s like ‘I’m going to help, I’m going to help’” and “I feel like that’s the same guy that I’ve known my whole life.” Neoliberal theorizations of the self are limited by their focus on individuality as they do not consider the ways the self can be distributed through interaction with others. Even though, because of his dementia, his father is unable to articulate or access his own sense of self, he continues caring for Hank the way he always has. When Hank’s father insists on paying, it is his way of showing his son he cares—just as when Hank was growing up, his father prioritized being able to financially support his family. Although avoiding outward displays of emotion, Hank’s father’s dedication to “making sure the family was looked after and had what they needed” illustrates his care for them—and paying for these weekly lunches is a continuation of this mentality.


 

Part III: Rethinking the Self


Like Taylor, Hank comes to believe that the neoliberal idea of a self as dependent on memory is inadequate. Hank reconciles cognitive impairment and the self by conceptualizing his father’s memory as not lost, but inaccessible. He acknowledges his dad is different but perceives him as “still there,” saying “I just can’t access his like deep thoughts, I can’t access his deep opinions of things. And like if I want his perspective on something— I mean I certainly could, I still talk to him about stuff that’s going on sometimes, but not stuff that really bothers me, because any question I ask him like he’ll start to answer it…” Hank trails off in imitation of his dad forgetting his thought in the midst of vocalizing it. I laugh once I realize the intent behind his pause, and he continues: “just like that, it’ll just stop, and I’ll be like, I want to know what he was going to say. And, like, like a year ago, I would’ve been like ‘Yeah, what about that early on, Dad?’ And like he can’t finish the sentence. So, I maybe once or twice I’ve done that and then I’m like, you know what I’m not going to do that anymore because— I just change the subject now because I can’t access that deep thought process, I guess.” Hank extends this notion of inaccessible components of the self to those not suffering from dementia as well. He suggests that memory does not define his self because not everyone he meets will be privy to all the things he has done or the memories he possesses. They will judge him and base their idea of him on his actions towards them at that moment, just as they would with someone who has dementia and lacks memories. Accordingly, he concludes that what is important is how he treats others at the moment because that is how they will conceptualize him. This draws upon a distributed notion of the self, as proposed by Taylor, by incorporating the knowledge of others’ perceptions of him into the way he conceptualizes the self (Taylor 2008, 326).


This conception of the self has both impacted and been impacted by the way Hank approaches care. By focusing on the present, Hank is able to accept that his father’s disease is outside of his control to avoid worrying about what the progression of the disease will look like tomorrow. This parallels the transition Deborah Hoffman goes through in the film Complaints of a Dutiful Daughter. Like Hank, Hoffman stopped resisting the progression of her mother’s dementia, saying, “once you accept parameters… it can still be a joyful life” (Hoffman 2000). By detaching himself from the past in an effort to more fully experience the present, Hank has also been able to worry less about the future. His idea of the self no longer aligns with neoliberalism: instead of collecting experiences to build himself up for the future, Hank has begun focusing on the present. His dad seems only aware of the present, which Hank describes as being “heartbreaking for me. I feel like it’s heartbreaking for him, but it’s not, at all, for him, or at least it doesn’t appear to be.” So, Hank, like Hoffman, has embraced this and found being in the moment to be liberating (Hoffman 2000). Spending time caring for his dad has forced Hank to rethink the importance he attached to his past experiences and instead focused on being more present. He doesn’t worry when his dad forgets something or slips up, Hank says, “Like that was then, this is now like this is my dad and we’re just going to hang out.” By releasing their attachment to memories, both Hank and Hoffman have been able to lessen the emotional impact of seeing components of their parents’ self that become ‘inaccessible’ or no longer correspond to whom they think they should be.


Contrastingly, Hank describes his sister’s approach in a slightly raised voice, “my sister, who’s more emotional than me, gets— like, she would bubble wrap him… and I said to her at the time, this might sound cruel, but I said to her, ‘You know what? I don’t want him to fall and break a hip either, but dementia is coming in his life, and it’s already here, and it’s going to get worse and worse’ I said, ‘I would rather he lives and enjoys what life he has, and if something bad happens that takes him early, I’m okay with that. You can bubble wrap him, but for what? So he can live in the corner? For ten years instead of five?’” This demonstrates the reduced importance Hank places on the neoliberal idea of ensuring stability for the future. Hank now finds his definition of self in interactions with others and places importance on the present moment. His conception of the self, which once revolved around the accumulation of experiences in preparation for the future, has shifted. In the face of his father’s memory loss, Hank has realized the self is more than its past experiences or achievements. By prioritizing his father’s current happiness, he departs from the neoliberal demand to continually prepare for an imagined future.


References


Brown, Wendy. 2005. “Neoliberalism and the End of Liberal Democracy.” Edgework: Critical Essays On Knowledge and Politics. Princeton: Princeton University Press. 37-145.


Gershon, Ilana, and Alexy, Allison. 2011. “Introduction: The Ethics of Disconnection in a Neoliberal Age.” Anthropological Quarterly, 84: 799-808.


Hersher, Rebecca. 2015. “After Alzheimer’s Diagnosis, ‘The Stripping Away of My Identity.’” NPR website. Accessed on March 20th, 2019. https://www.npr.org/sections/health-shots/2015/01/31/382240633/after-alzheimers-diagnosis-the-stripping-away-of-my-identity.


Hoffman, Deborah. 2000. Complaints of a Dutiful Daughter.


Kaufman, Sharon. 2017. “Losing My Self.” Perspectives in Biology and Medicine, 60 (4): 549–568.


Taylor, Janelle S. 2008. “On Recognition, Caring, and Dementia.” Medical Anthropology Quarterly, 22 (4): 313-335.

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