It's Not A Catastrophe

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Collection of Life

This artifact depicts a collection of moments where my grandma’s life experiences reject the death and tragedy discourses that are so often assigned to those with Alzheimer's (Behuniak, 2011; Reed et al., 2017). These videos were collected over the last two years of her life, many of which are from the period that she was enrolled in hospice and experiencing the end stages of Alzheimer’s. As explained by Kitwood (1997), this period includes her experience of losing mental capacities that increasingly complicated her ability to meet the standard human needs of comfort, attachment, identity, inclusion, and occupation by herself. However, through the recognition of her vitality and an application of person-centered care, we were often able to support the ability for these needs to be met. The practice of person-centered care supported her personal, or subjective, experiences with the disease (Kitwood, 1997), but it also supported the experiences of caregiving for myself and my own needs of comfort, attachment, occupation, identity, and inclusion. This page includes autoethnographic explorations of moments from this collection that demonstrate the spirit within my grandma throughout this time and how we were able to recognize it in a way that led to mutually increased well-beings and positive intersubjective experiences.

Family Brunch

March 13, 2022

Last year, on the 13th of March, my family went to a late Sunday brunch. We picked one of our favorite spots, Otro Cafe, and sat on their patio to enjoy the breeze that accompanied spring days in Phoenix. My dad, Dennis, had entered the restaurant before us to make sure our reservation was ready, as we usually tried to avoid waiting in busy waiting areas to lessen risks for covid in addition to reducing the opportunity for my grandma to become overwhelmed and confused in noisy, unfamiliar surroundings.

After my dad cued us in, we shuffled through the restaurant in our typical conga line formation that was usually successful in keeping our group of six moving without my grandma feeling that she was lost. We made it to their back patio and took our seats. I sat across from my grandparents and was ready to keep my grandma engaged and included throughout the meal. However, after receiving her favorite part of brunch, a heavy-handed mimosa, and eating some hearty barbacoa and eggs, Dawn decided it was her turn to entertain and engage the rest of our family.

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She started by asking me to take pictures of her and my grandpa. If there was one thing she loved her whole life, it was a photo prop with her husband. I happily obliged and took a video of the two of them softly smiling.

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I was then directed to take a 'funny picture'

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After being satisfied with her photos, she wrapped her left arm around my grandpa’s shoulder and grasped her mimosa with her right hand; inspired by the music in the background, she started leading the two of them in a little boogie. While dancing, she also took the opportunity to ask if the glass she held was hers and gladly took a swig after this was confirmed.

While at the end stages of the disease that is often seen as a state of tragedy and suffering (Behuniak, 2011; Lushin, 1990; Reed et al., 2017), she charmed the table throughout the brunch in ways that engaged everyone there. This experience was undoubtedly supported by the work of myself and her other family caregivers as we ensured that her environmental setting was suited to her lifelong preferences for dining. But I cannot take even half the credit, as it was her presence that created this experience and memory for our family. By seeing her as an actor with subjective experiences (Kitwood, 1997), we were able to participate in and encourage these moments that expressed my grandma’s persistence of a pure livelihood. Had she been understood at that table as a shell of a person, she probably wouldn’t have been able to enjoy her mimosa along with the rest of my family which would set off a tone of exclusion for the remainder of the meal (Kitwood, 1997). The recognition of her vitality allowed for the positive intersubjective experiences in this moment of caregiving. Alzheimer’s patients still have the capacity to enjoy their life and stay involved with their family dynamics, but need the support of their caregivers to achieve this. Instances of living death can also indicate that the involved caregivers have been influenced by biomedically informed resources that endorse ideas of Alzheimer’s as a process of zombification or death (Behuniak, 2011; Kitwood, 1997; Sabat, 2003).

NYC Trip

As I've mentioned previously, my grandparents were avid travelers, but neither of them had been able to travel in years due to their various health problems. In September of 2021, my mom called me and suggested using my upcoming birthday as an excuse to convince my grandpa on taking a family trip to visit Alex and I in New York. I was shocked at the suggestion because traveling by plane from Arizona to New York would not be easy for my grandma or my parents. Despite these challenges, my parents were determined to make it happen as we knew we were running out of time to experience a family trip with my grandparents. They bought their tickets and Alex booked a hotel that was in a relatively accessible location for my grandparents.

Figure 13. Jim, Dawn, and Sophie in Manhattan, 2021.

Figure 14. Dawn and Alex in Alex's dorm, 2021.

After a long flight of my grandma arguing with my mom about airplane snacks and mandatory masking, my parents and grandparents finally made it. While it wasn't the smoothest journey, my grandma was beyond happy once she was in New York. The four of them met Alex and me at Sarah Lawrence College where we gave them a quick tour of our dorms and the highlights of campus.

Dawn loved being on campus. We were worried that walkjing through the dorm halls would be overwhelming for her with all of the doors, but we walked right up to Alex's room where she plopped down at their desk.

We asked if she would want to just move in with us, and the picture on the left is the photo I took of her answer: "oh YEAH!" *cue her signature double thumbs up and wide eyes*

It was a bit chilly that day, so we kept our outdoor campus tour brief, but made sure to show them the highlights that campus has been known for like Westlands and the North Lawn.

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Figure 15. Sophie, Alex, Dawn, and Jim at Sarah Lawrence, 2021.

Figure 16. Dennis showing Jim and Dawn around campus, 2021.

Figure 17. When in doubt tattoo pt. 1, 2021.

Figure 18. When in doubt tattoo pt. 2, 2021.

Figure 19. When in doubt tattoo pt. 3, 2021.

On my birthday, my family just hung out together all day doing what we do best, eating delicious food. At the end of the night, I showed my grandma the new tattoo I had just gotten of her motto "When in Doubt, Work it Out." While she never really had a taste for tattoos for the majority of her life, she was beyond thrilled to see my tattoo and hear why I got it. She loved the fact that her words would be walking around and on me forever.

The sweetest part about having this tattoo is that I was able to experience revealing it to her over and over. She always was so shocked and excited when I would show it to her. Every single interaction we had surrounding the tattoo means so much to me. Alzheimer's can take a lot, but it can also give the opportunity to remind your grandma over and over how much she means to you. It gave me the opportunity to surprise her with something that could brighten some of our worst days.

Meaning doesn't always come out of recognition. Without recognizing past interactions, we were able to experience a multitiude of meaningful moments surrounding the tattoo. Through her consistent positive reactions to it, I knew that it was something that genuinely brought the both of us joy regardless of situational contexts. Referring back to Taylor's (2007) use of 'firsts' and 'stills,' throughout the year she saw the tattoo, she still loved it. I was able to be a part of her first reaction to it at least fifteen times. The intersubjective interactions that occur in Alzheimer's care relationships can act as a portal beyond the facilities that are stripped away by the disease. By this I mean that if we as caregivers treat each interaction as a potential for the generation of meaning, we can step beyond normative linearity of experience and enjoy these meaningful moments that are both repetitive and new. None of her reactions were ever the exact same, but all had the same overarching tone. I could have only shown the tattoo to her one time, but by stepping into the disease's patterns and the cognitive capacities of my grandma, we both benefitted by experiencing this sweet moment of bonding in a multitude of ways that could only happen through a shared experience.

While there were some small challenges, their trip to New York was incredibly successful and became the source of so many meaningful memories and experiences for myself and each of my family members.

So where does the tragedy discourse, which highlights an inevitable loss of ability and self throughout the disease (Reed et al., 2017), fit in to all of this? In the year before she died, my grandma walked the streets of downtown Manhattan being wined and dined, dancing, and laughing with her family. Her lifelong passions- travel, dancing, and dining- were still accessible through the support of our family. Of course she had lost some abilities and wouldn't have been able to do these things by herself, but she also wouldn't have wanted to. She always loved "being where the people are."

Figure 20. Dennis, Dawn, and Renee in NYC, 2021.

Society generally fears progression into interdependence/dependence in part due to our understanding of independence and autonomy as critical aspects of personhood and selfhood (Behuniak, 2011; Taylor, 2008). The tragedy discourse follows these ideas of personhood and catastrophizes the disease by deciding those diagnosed with it are undergoing an unstoppable loss of self and personhood (Behuniak, 2011; Reed et al., 2017).

Through the tragedy discourse, Alzheimer's patients wind up stigmatized by even their own family. As explained by Reed, Carson, and Gibb, this stigmatization leads to a lack of opportunities for Alzheimer's patients to express their selfhood, "determines the quality of care they receive from healthcare professionals," and impacts their care at home from family members (2017).

Yes, Alzheimer's inevitably leads to loss of physical capacity and cognitive deterioration. It is a disease that can cause insurmountable change. But, it does not have to be an immediate indicator of a life filled with suffering and lacking meaning.

The tragedy discourse would suggest that there was no point in the effort of traveling with my grandma. Because her identity would be supposedly lost, she wouldn't find joy and connection in doing her favorite things while in a lively place with people that she loves, even if she cannot name them. Because our lives as caregivers would be filled with such distance from my grandma, we wouldn't be able to share experiences with her. There wouldn't have been any significance behind her reaction to Alex's dorm or reason for us to show them our campus. According to the tragedy discourse, we probably should've utilized the 5 days of inpatient respite care that hospice offered through medicaid. According to the tragedy discourse, that is how it should have all gone.

But it didn't go how the tragedy discourse said it should. By taking the time and effort to present my grandma with multiple opportunities to present her self and personhood, she flourished! She was far more willing to eat while on vacation, loved the hotel, and danced through our meals at every restaurant. These efforts also greatly benefitted my family and we all just had so much fun being together. We still have inside jokes (started by my witty grandma of course) that we reference and photos from the trip hang in our living room. By rejecting ideas of the tragedy discourse, we were given the opportunities to create meaningful moments alongside supporting my grandma's ability to present and develop her own self and personality.

We found joy in special occassions, but we also mostly experienced it in the mundane. This is what the majority of our days looked like:

August 10, 2022

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