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“Hello?” says a small voice that I cannot locate.
I hear the shuffling of two small feet.
I get up from the couch and walk over to the hallway leading from our back room. There’s a tiny figure, dressed all in white, standing in the middle of the hall, I know exactly who it is.
“Hi Grandma!”
The figure's face is overcome with a look of relief.
“Oh I found you! I’m so happy I found you!” she sighed while I wrapped my arms around her tiny self.
My sibling, Alex, and I had spent that morning with her while my grandpa was at an appointment; upon his return, she happily joined him to watch some afternoon television. They probably watched Naked and Afraid, The Maury Show or any other of my grandpa’s daytime tv favorites. Alex and I took this time to catch up on RuPaul’s Drag Race in the back room of our house.
After about an hour of being separated, she was intrigued by the sound of our show, came looking for its source, and found the two of us. At this point, it had been years since she said either of our names; neither of us can remember any particular moment when she no longer knew them. What was important was the relief in that first interaction. In that moment, we found each other as two beings who provided comfort with some shared degree of familiarity.
We asked her how she was doing to which she replied that she was “just looking around.” We invited her to sit and watch our show with us and she eagerly joined, sitting on a rocking chair that had been cast three months prior to our home’s back room due to how much my grandma disliked sitting in it. I asked if she’d like some juice (any of her favorite beverages, wine, chocolate milk, etc were known as juice) and quickly poured her a glass of ginger ale paired with her ideal apparatus, a plastic bendy straw.
After she was all settled in, my sibling began to explain the premise of the show to my grandma who was immediately interested.
IMG_2745.movIMG_2747.movThe three of us soon realized how entertaining it was to watch the show as a group. Drag Race turned out to be a perfect show to maintain a positive environment for Alzheimer's patients as it contains engaging and bright visuals, sounds effects that act as emotional cues, and lots of laughter which are all aspects of shows that tend to be soothing or engaging for people with Alzheimer's (The Neighbors of Dunn County, 2021; Schmid, 2022; The Village, 2022).
We spent the afternoon together watching the show and giggling at its nonsense.
It's a memory I look back on often and feel so lucky to have had this engagement over something that my sibling and I have enjoyed for many years. Throughout my time living with and caring for my grandma, I repeatedly heard the sentiment that she was no longer with us, that the disease had robbed her of the vibrant person she once was. I was expected to believe that her personality was decaying, if not already dead (Hughes et al., 2006; Reed et al., 2017; Schweda, 2022).
But why would I? What about the above experience indicates a loss of self or inability to live in the simple joys of life? How could a zombie, which Alzheimer's patients are so often compared to (Behuniak, 2011), actively enjoy watching RuPaul's Drag Race with her grandkids?
Alzheimer's is a uniquely powerful disease and is capable of causing insurmountable change. However, the self is also a uniquely resilient concept that is strengthened through relationships with others, no matter the stage of life (Kontos, 2006). Encouragement of the self and it's development should not be abandoned throughout the progression of Alzheimer's disease. We must actively work at interpretting actions of Alzheimer's patients as meaningful and often indicative of inner thoughts, preferences, or needs (Kitwood, 1997; Sabat, 2003). Both Alzheimer's patients and their caregivers deserve to be given hope that meaning and selfhood can persist throughout the disease. However, It is incredibly difficult for caregivers to understand or foster the meaningful potential that can still arise even in the late stages of Alzheimer's, if they have been told that their loved one is no more than an "empty shell" of who they once knew (Dekker, 2018; Karger, 2018; Koca, 2017; Fontana & Smith, 1989, p. 36; Seaman, 2018).
This autoethnography is an exploration of the meaning that can come out of the lives of those who live with and care for Alzheimer's and how this meaning rejects the Death Metaphor and Tragedy Discourse that myself and many other caregivers are often met with once relaying our involvement with the disease. It is an act of attempted sympathy that actually can cause more harm to the care relationship if the dynamic in this relationship is intrinsically understood by the caregiver as incapacitated (Kitwood, 1997; Sabat, 2003).
About Us
About Us
Before diving further into these vignettes of our care relationship, I want to provide an introduction for my grandma and myself.
Dawn Marie Richard was born in San Francisco, CA on April 9, 1941. Poverty and neglect marked her childhood, and she left her family's home in the projects outside of San Fransisco and soon as she could. She began work in telecommunications and served as president for the Northern California Chapter of Business and Professional Women’s Foundation. She and my grandpa, Jim, raised my mom and my uncle in Woodland, California.
After the kids went to college, she and Jim became active travelers and she started her own travel agency that helped her go all over the world. Through their travels, my grandparents became known for their charm and willingness to party all night with people they had just met. She loved everything about being out in the world and "where the people are" as she used to say. She was the kind of girl that would dance to any music, suggest dining out instead of cooking at home, and keep the party going until the wee hours of the morning.
She and my grandpa moved to Phoenix, AZ to be closer to my family in 2011. By 2016, she had been officially diagnosed with Alzheimer's, although my mom suspected it for years prior.
I was born in Phoenix, AZ on October 19, 1999. My grandparents met me in the hospital wearing the "Grandparents World Tour" shirts that my mom ordered. They've been a huge part of my life ever since. Growing up, my grandma was never that affectionate, although we still loved to be around her. My grandparents used to visit Phoenix on a quarterly schedule and always brought back souvenir trinkets for us to keep from their constant travels. They finally moved to Phoenix when I was 10 and briefly lived with us while finding a new home, which I just loved.
As my grandma's symptoms progressed prior to her diagnosis, I often ended up next to her at dinners or other social interactions. Over time, I learned what helped her calm down or refocus from something she would suddenly obsess over. The two of us would sit across from each other at a table of six and be engrossed in our own private conversation throughout the meal. We became even closer than we had previously been, and I would jokingly ask if I was her favorite granddaughter (which she usually confirmed as true).
By the point of her diagnosis, I had already loved the time we got to spend together and always volunteered to 'hang out with grandma' after that since we had already created a relationship that provided us both comfort and familiarity. In 2020, my grandparents moved into our home and my role as a caregiver became more expansive as I joined my grandpa and my mom in taking turns being her primary caregiver. What followed have been the most important years of my life that contain my favorite memories with my grandma and family. This experience created a passion for caregiving that has joined my previous interests of health advocacy and disability studies.
Figure 12. Dawn and Sophie matching, 2017
How I Understand Alzheimer's
How I Understand Alzheimer's
I don't remember the last time my grandma said my name and I don't remember the first time she forgot it. I don't know if she could've been able to remember my name and relation to her at any point in the five years before her death. In her work, On Recognition, Caring, and Dementia (2008), medical anthropologist Janelle Taylor describes her own journey as a caregiver for her mother with advanced Alzheimer's and how she was constantly met with the questions: Does she remember your name? Does she still recognize you? Taylor and I share the same idea that when people ask this subjectively irrelevant question, they are actually asking us, the caregivers, the family members, if we still recognize our loved one with Alzheimer's; if we think we should "grant [them] recognition," (2008, p. 315). To further explore this question of recognition, Taylor builds on the concept of 'stills' found in Elinor Fuch's 2005 autobiography about her journey with her mother' and Alzheimer's.
'Stills' traditionally refer to a patient's remaining level of capacity: Can she still speak? Can she still walk? Does she still dance? Does she still recognize you?
Taylor builds upon this concept by offering a counterpart of experiences that can be described as "Firsts" (2008, p. 316). Taylor's firsts include: the first time she heard her mother repeat the same question, the first time her mom didn't know where her deceased husband was, and the first time since childhood that she got to walk in public holding her mother's hand. My firsts include: the first time my grandma didn't know how to eat an artichoke, the first time my grandma thought she needed to leave to take care of her 'real' family, and the first time I got to 'meet' her out in public, where she would introduce herself to me and quickly become my friend.
I never asked her for recognition, but often felt it through the way I could enter her space. I was recognized as a grandchild, a nurse, a parent, a child, a waiter, a chef...all depending on what the two of us needed in that moment. It didn't matter if the person in front of me could no longer speak, I knew it was Dawn when she would dance with twinkling fingers along to Herb Alpert's Mae. It didn't matter that the person I was helping to the bathroom couldn't remember my name or how to navigate the restroom. What mattered was her acceptance in letting me help and her concluding statement of "when in doubt, work it out" after we had finished the task.
Taylor explains that, as demonstrated above, firsts and stills are neither definitively 'good' or 'bad' experiences (2008). They do not inherently tell stories of loss, but are moments that can also illuminate special aspects of relationships that often go unacknowledged in people with Alzheimer's. Similar to Taylor's view of her interactions with her mother, I'd never been interested in interrogating my grandma about irrelevant facts likes names. Instead, I was much more interested in learning about her past experiences in life by paying attention to her 'stills' and building on my relationship with her and learning about her developing personality by attending to our 'firsts.' As I became her caregiver, I was never concerned about being recognized as an individual and as I said before, have no idea when she forgot my name for the first time. My perspective on the irrelevance of typical understandings of recognition guided the way I approached our caregiving relationship and is foundational to the creation of this work. I feel lucky to have been able to take this approach instead of understanding Alzheimer's through biomedical lenses as it allowed me to explore the relationships that can be developed and strengthened throughout Alzheimer's.
Additionally, I have been inspired by recent conversations in philosophy and phenomenology suggest that as human beings, “otherness [is] a constitutive feature of one’s personhood,” (Čapek, 2019, p. 275). We experience many forms of alterity in our embodied experiences of the self throughout life. We question who we are, what our ‘true’ identities are, and wonder how we appear to society (Placencia, 2010). We may experience physical changes as simple as a haircut that make us feel ‘unrecognizable’ to one’s self, and we wonder what we have yet to discover about ourselves and our potentials (Čapek, 2019). We are capable of surprising ourselves. This all stems from an otherness- the unknown- that resides within the self, and therefore, is a fundamental component of the human experience. Throughout my work, many of my artifacts occurred at points of interruptions. I view these as interruptions of ‘normative’ cognitive realities that can be seen as events of an alternative ontology that encourage potentiality and possibility for not only the patient but also their caregivers (Dyring, Rasmus, Grøn, 2022). Anthropologist, Lone Grøn, further explores this concept in the realm of a dementia ward, arguing that alterity is a well established aspect of the human experience:
“We fall into sleep, into dream; we find ourselves engulfed in a childhood memory; somebody we know very well may suddenly seem like a stranger…We are constantly responding to phenomena and events we cannot fully understand,” (2022, p. 86)
By sharing the following experiences between my grandma and I, I hope to show how Alzheimer's can and should be understood beyond the death metaphor or tragedy discourse, and how these different understandings improve the quality of life and generation of meaningfulness for both the caregiver and care recipient.
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