Spilling Over Modernity’s Borders and Boundaries: A Decolonial Story About Alzheimer’s, Family, and Migration

“¿De dónde eres?” My friend’s 9-year-old niece asked me shortly after we were introduced to each other during Christmas. This was in Bogotá last year at my high school friend’s place. She sat next to me, leaning slightly toward me. Her question seemed fueled by a kind of curiosity that two strangers at times share when wanting to rush through the unfamiliar and quickly find a common place from where to discuss matters of much greater importance, like her Christmas presents. It must have been around 15 years since my high school friend and I last knew about each other’s lives. Various life circumstances might have contributed to vanishing from each other’s lives—including living in two different countries—until whenever the day was going to come for us to meet again and pick up our friendship right from where we left off to catch up on whatever many years in between.

My eyes shot open and met her curiosity, sensing all over my body the shock of her question. Did she unwittingly render me foreign to and within my homeland? I wondered.

“Pues de aquí. De Bogotá. Rola 100%!” I said to her, stating what for me was the obvious.

“Es que hablas diferente.” She further explained.

“¿Y tu?” Le pregunté,” pretending to ignore the state of my body, and attempting to reciprocate an interest in our origins.

“De acá.” Me respondió, while organizing her Christmas presents for their exhibit.

My friend overheard our conversation. On the way to the kitchen, she provided some context to resolve her niece’s confusion and to create mine.

“Ella es de aca pero hace mucho que no vive aquí por eso habla así.” my friend explained with the tone of certainty of an irrefutable conclusion.

“Así cómo ???” I yelled in horror; but she had now gotten lost far back in the kitchen as the Christmas host.

Like many, I became well acquainted with the origin question as an immigrant, hence actual foreigner to the sociopolitical and material history of my host country, the United States (U.S.); as well as with the experiences of those who although were born in the United States are inadvertently or intentionally rendered foreign in their homeland by others. This is, when informed by discriminatory singular and monolingual principles about nationals and foreigners from a land. Having left Colombia as an adult, in the U.S. the socio, geo, and body-political history of Latin America/Abya Yala I carry, materializes not only in my accent but in my interactional manners, phenotype, epidermis, and knowledges, which intertwined with local racializing practices, continuously mark the well or ill intended curiosities of the inquirers, nationals or immigrants alike, about their assumptions about my foreign origins. Regardless of their intent, in foreign soil, I share my origins with my chest filled with air, trying out a new sense of pride in the diaspora evoked by its nostalgia, not quite reaching patriotism but maybe darn close to it, if I were to speculate on what incarnated patriotism would be like:

“From Colombia.” I usually respond to that question and sometimes I point at my wrist when I wear its colors.

Re-entering: From Here and From There Migration Experience

During the last couple of years, I have been spending more and more time in Bogotá than I ever have since the early 2000’s when I left. My mother’s health and increasing loss of memory called for it. Although no doctor would diagnose her with Alzheimer’s in her late 80s, that was the family’s narrative about that part of my mom’s life and our relationship with her still to this day. Her four daughters were no longer living in Colombia. My three sisters and I migrated to the U.S. at different times during our adult lives, for different reasons that required no explanation. Mom and dad raised us during the Colombian armed conflict, intensified by the international drug war and the U.S. intervention.

In a country living and enduring the ongoing wounds of war, poverty, and state neglect, as it is the case for many countries living through long-standing conflicts around the world, as I recalled, for many Colombians across various socio-political circumstances, since birth, the idea of leaving Colombia becomes part of what it means to live in Colombia, aspiring for refuge elsewhere. Violence humiliates the homeland and elevates the non-realizable promises of foreign land. Those of us who realized the idea of leaving Colombia represent the 6% of the population who currently live outside of the country—primarily in the U.S., Spain, and Venezuela. According to the Migration Policy Institute, Colombians are the largest group of South American immigrants in the U.S., representing 2% of U.S. immigrants. Colombian migration to the U.S. has increased three times as fast, from 144,000 Colombians in 1980 to 855,000 in 2022.

During our lives in the U.S., mom would come to visit for various periods of time, visiting with each one of us across states. My dad traveled once, which was more than enough contact with U.S. soil for him, given his politics. We would stay in contact through daily emails or texts, otherwise. Also, from time to time, I would travel to Bogotá for a long weekend or so for a visit. Before migrating, and all throughout the Covid pandemic, my oldest sister lived with and cared for mom in Bogotá until the impending heart-wrenching decision finally came knocking at the door to meet the four of us face to face.

The emotional intensity, and dedicated care my sister and her children had been providing mom with for the last few years had proven to be no longer sustainable for either of them. Con cabeza fría, we had to make the overdue decision, even against mom’s wishes that she no longer remembered. Mom needed to be relocated to a specialized nursing home for her proper care. She had outlived friends and close relatives. My father died back in 2008, and we heard that mom’s last living sibling, the oldest, Alberto, was still alive but bedridden in deteriorating health conditions. He died not too long after mom moved to the nursing facility.

My relatively advantageous immigrant conditions afforded me alternatives that only so many immigrants in the U.S. have in similar circumstances, with aging parents still living back in our home-countries. I began traveling to Bogotá regularly during the last year before mom died, spending months at a time with her while working remotely. My sisters would visit when able. Daily, morning and afternoon, raining or not, I would walk back and forth to visit mom at the nursing place in the north area of Bogotá from the small place nearby I rented during my stays. I would pick up on my way some kind of dessert for my mom’s sweet tooth that memory loss had forgotten to forget. I became very well acquainted with mom’s co-living folks and their visiting families; and also the nurses, aids, physical therapists, and cooking and cleaning staff, majority women, to the extent that exceptions for their visiting hours became the new visiting hours. It was through their lives—the only people I had close contact with at that point in Bogotá—that I re-entered a sense of living a life in Bogotá, although still having more than one foot in my immigrant life in the U.S., to which I remained virtually connected through a laptop.

Through life at the nursing home, I reintegrated myself to the familiar tensions of the Colombia Nation-State’ s sociopolitical heartbeat, revealing along the signs of the 24 years that have passed and have transformed both the country and my politics in the diaspora. The tensions were palpable. On the one hand, the advantageous circumstances of the families who could afford their relatives to live there were visible. And, on the other, so were the injurious sociopolitical conditions and longstanding neglect by the Nation-State toward the lives of the people working there. Although responsible for the care of the facility’s residents, they had to do so while undergoing living conditions that seemed to cry out in state neglect. This was one of the other jobs they needed for their survival and the survival of their family.

Some of their children were being educated under precarious conditions in public schools. Evictions from their home were more tangible month after month. The impeccable makeup of some of the women working in the kitchen kept hidden the marks of patriarchy’s hands from the night before, some of which was documented in futile police reports as well as in her self-defense fingernails imprinted on his skin. Their clothes served as curtains behind which their bruised bodies were concealed, while their bones would heal from their forceful impact against the wall, or the push down the stairs. Their children were their witnesses. According to the Colombian newspaper, El Pais, between May of 2023 and 2024, 149.017 family violence incidents and 630 femicides were reported in the country. Limping, the women would arrive on time at the nursing home after a 3-hours-long commute from the south of Bogotá to care for my mom with the best of dispositions possible. Story after story, the nostalgic Nation-State Colombia of the diaspora that I was so proudly holding tight to, wearing it on my wrist, and expanding my chest, started to melt throughout my body, transpiring through my skin, forming a polluted stream of outrage that took off running through la Avenida 19, running all the red lights, turning toward la Autopista Norte, eventually merging with Bogotá River, considered one of the most contaminated rivers in the world, according to WSP.

My relationship with mom that year was not exempt from a sort of re-entering experience. It was similar to how my re-entering to a life in Bogotá was. On occasion, mom would seem as if she could see in my face sort of a familial resemblance but not quite family. I was beginning to feel that way about everyday life in Bogotá although not linked to a matter of memory but migration. I recognized aspects of what I remembered was my homeland out of the unrecognizable features of the obvious changes since I left. I was able to discern some things but not others with my renewed borderland eyes as a Colombiana inmigrante en the U.S.

My life from when I lived in Colombia during the late 1900s met with my life as an immigrant living in the U.S. since the beginning of the 2000s only to discover they had already met over two decades ago and have become inseparable since. My memories from Colombia were never left behind. On the contrary, they carried me through the making of a new life in a new land. After all, we can’t separate ourselves from the history that makes us. I have been living both lives simultaneously, through a multiplicity unfolding either in Colombia or the U.S.

A sense of foreignness within the familiar, and a sense of familiarity within the foreign helped me discern the experience of dwelling in the borderlands, which my friend and her niece also brought out in the open during Christmas, when I reconnected with them months after mom died on March 29, 2023. The borderlands became a point for reflection on what it was bringing forth—difference—to ultimately transcend modernity’s definition of difference as fracturing borders or boundaries since the conquest of the Americas—the colonial difference. Walter Mignolo has written extensively on this topic.

The colonial difference refers to a hierarchy of separation (for control purposes) through the development of borders or boundaries that create races, cultures, Nation-States, identities, languages, genders, etc. Modernity’s colonial difference fractures the bones of the communal into hierarchical separate pieces whereby those lower in the hierarchy can be thrown down the stairs or against the walls of separation that it created. Thus, my friend nieces’ question about my origins, became a recognition of difference stemming from my 24 years in the diaspora crawling up my Colombian accent to renew it within a sense of plurality. My renewed accent marks a difference that does not have to be of borders, exclusion, fracture, or separation, but of relationality and connection out of what it means to live relationally, or in more than one world simultaneously.

I have heard many stories, mostly from Mexican, Chicanxs, Mexican-American, or Texanes, about their experiences when returning to their homelands in the Nation-State of México. They shared being made to feel that they do not belong on either side of the border: “not from here, not from there,” “ni de aquí, ni de allá [neither from here nor there].” I understand this to be a symptom of modernity’s logic of criminalization by difference and punishment when crossing the border. Anything that does not represent nationalism on either side of the border, thus promotes monolinguality, monoculturality, or singularity, is destitute and criminalized. On the contrary, from the borderlands of my experience, I am thinking about immigration interrogating the borders while being interrogated; thus, opening at the same time possibilities to rethink the fracturing premise of separation modernity promotes into being “from here AND from there, simultaneously, thus relationally.” This revised premise eases my body when facing the origin question by Colombians in Colombia.

Rendering the Familiar Unfamiliar: Radical Listening

More often than not, mom did not know exactly who I was, or when and where we may have met at some point in our lives. Only a couple of times, she recognized me as her youngest daughter, “marce,” as she used to call me. Although she never forgot her name, Gloria, she did not know where she was nor recognized her own image in the mirror. Sometimes I was her youngest sister, and other times, she would address me as her nurse or aid. When I would rub her hands, the touch would call her to reposition her hands and to start giving me instructions on how she wanted her nails done that day. When I would pass my fingers through her hair, sometimes she would address me as her hairdresser, or quite firmly in a tone I did not recognize, she would push my hand away demanding that I do not touch and mess her hair.

As much as mom did not remember that I was her daughter, I did not always fully recognize mom in the body and interactions of the 89-year-old woman living in the nursing home—except during her brief inconfundibles momentos [unmistakable moments] of humor here and there. This was not surprising to me, having learned about similar yet different stories from folks from various backgrounds with parents living with Alzheimer’s or dementia, not only in my therapy work. My family was now living through those stories but creating our own. Our story is also likely to be my story about possibly inheriting from mom a life with Alzheimer’s yet to manifest, at least as far as my memory can tell thus far.

Although not surprising, witnessing mom’s increasing experiences of discomfort, suffering, and loss of conversational abilities was at times hard. Yet, unexpectedly, under such unfortunate circumstances, not being remembered by mom at times opened alternative relational possibilities. But it required radical listening to recognize these as possibilities and through the rather overwhelming presence of Alzheimer’s. I have learned radical listening from various perspectives that I carried with me every day to the nursing home during my visits. These include perspectives on borders, memory, history, and aesthetics shaped by my lived experiences as a bilingual immigrant, my understanding of Narrative Therapy in English as a family therapist, and mostly by my engagement with the decolonial project from Abya Yala y el Caribe in Spanish and Spanglish as a member of the civil political society. These are perspectives that have shaped not only my family therapy work but my life as I write here.

Cognitively speaking, Alzheimer’s configured mom and I as strangers, no longer family. We became foreigners to one another. Most interestingly, however, it rendered us foreigners to modernity’s concept of the family. As an immigrant, working and living in community with immigrants in the U.S., questioning, revising, expanding, or delinking from the westernized idea of family has not been uncommon. Migration is a context for the necessary renegotiation of our ties and kinships within the context of voluntary or involuntary separation, and deportation. For example, during the current administration in the Nation-State of the U.S., during the last four years, nearly 4.4 million people have been deported to more than 170 countries according to the Migration Policy Institute.

Mom and I became foreigners to the western idea of the family settled and promoted in Colombia, and many other parts of the world, through Catholicism, heteronormativity, patriarchy, capitalism, and their institutionalization of relationships. As one of mom’s four non-adopted or non-in vitro children, our half a century-long enfleshed relationship was governed in great part by humanized fracturing assumptions of reproduction, motherhood, productivity, and gendered relationships founded on who gave birth and who was birthed to constitute a family. Thus, oddly, Alzheimer’s liberated us, not from accountability for all the headaches I caused mom over the years, rather, from thinking ourselves, and listening to each other, through the institutionalization of boundary-based relationships, its imposed social expectations, and Nation-State’s laws whereby the western family has been instituted as some sort of a social mandate. If I were to take a guess, these sort of institutionalized human laws and western concept of the family might be the sort of conundrums that would make la Pachamama, Madre Tierra, shake the earth. Mom’s forgotten aspirations for my life and my sisters’, which included growing up to become Colombian mothers, with good husbands, and decent, healthy, economically independent (from men), and hard-working women, were no longer shaping our relationship.

Deinstitutionalized by the unfortunate circumstances of Alzheimer’s, thus no longer being a Colombian mother and a Colombian daughter in the modern sense, we learned each other and cared for each other otherwise, sometimes minute by minute. The fracturing logic of the family boundaries planted by modernity was removed. Thus, I understood care to be instead about honoring the relationship with the person I owed my existence to in so many ways in addition to giving birth to me. As a family therapist, I am attentive to what the global and western concept of family imposes on relationships in an exploration of what sort of relationships are possible otherwise or in addition to.

My relationship with mom was unpredictable and in constant movement. It was to be discovered by dwelling in the moment of its expression. We had to discover who we were, a cada momento (every moment), according to the memories invoked and received as they came, no matter what. Was I the hairdresser, the woman who does her nails, her sister, one of my sisters, her nurse, or any other character out of my mom’s history? I could not arrive at the nursing home with certainty of who I was, but with clarity of where my existence—and my sisters’— came from. I became someone only through the act of being with mom and our memories, some of which we invoked together.

We connected through the ever-changing moment of the circumstances that brought to life some of the memories of what we were made of. The circumstances I am referring to were for the most part sensorial. The senses evoked sparkles of memories, interconnected with other memories, both hers and mine. The taste of the daily desserts, my touch, the temperature of my hand over hers, the boleros we listened to, the noise from the novelas on the TV we stared at, pictures of her younger life, the colors and textures of my clothes, my gray hairs, the co-living folks’ speech or appearance, the birds’ colors and their singing having Bogotá’s traffic as their symphony far in the background, as well as the colors of the flowers around us when we sat outside in the garden evoked memories intertwined. Those memories that have shaped, among other things, our half a century relationship, not only formed our lives but who we were to become moment by moment. I realized I was mom’s sister, por ejemplo, only in the brief moment that she saw me as her sister. Undoubtedly, we were radical historical and relational beings.

I can’t help to think about how social relationships, including relationships within the context of westernized therapy look like when we are to arrive at the encounter with someone else not with certainty (or doubt of) of who we are as therapists but with clarity about where we come from—as historical beings. This shifts away from the mainstream conceptualization of the therapist as an empty (no history) interventionist, solely performing according to the regulations of the institution and professional Eurocentric theories to be good or effective therapists. As historical therapists, instead, we become available to engage and receive the encounter with another, attending carefully to our histories, intentionalities and how we are shaped by the experience of the encounter. Thus, similar to who I became when visiting mom, who is the therapist is not independent from the encounter with who consults. The therapist becomes a therapist in the encounter with the person who is consulting. This shift requires an initiative to des-institutionalize the therapist, and to foreignize westernized therapy perspectives that situate an ahistorical therapist.

The Sensorial Grammar and Temporality of Memories

As mom’s cognitive abilities continued to deteriorate, it seemed as if for those of us around her, her presence in this world began to disintegrate into oblivion. She was talked about, no longer engaged with, her body moved from one place to the other, and words were put in her mouth, at times necessarily. Her existence was for the most part reduced only to her possibilities, or lack thereof in her present, in the here and now. Although her body was present, the growing absence of thought, reason, and the ability to access frameworks of intelligibility to express ideas in the present moment seemed to cast doubt on her very existence. Hence, if we were to recognize mom’s existence and vivid presence in this world, it required us—decolonially speaking —to overcome modernity’s spatial (here), temporal (now), universal assumptions. It also meant to cast doubt on the overemphasis on cognitive function, (capitalist) productivity, modern storytelling (or framework of intelligibility), and conversational skills as the only ways of being or existing. Then, it became more possible for me to continue to relate to mom, to learn from her, and to be transformed with her.

I came to understand that the sensorial had become the grammar of our communication, through memories. Mom’s life was unfolding through her bits of memories that situated us in their respective temporalities. Although evoked in the present, mom’s slivers of memories were transgressing modernity’s contemporary framework, its universalized linearity—past, present, and its spatial metaphysics that places the present as the monopoly for the principles of what is real and represented as real. She brought me into her life to take part in events that were happening before I was even born. When some of the aides or co-living folks would overhear our conversations at the nursing home, however, it was not uncommon that they would mistakenly “correct” mom’s temporality when instructing her about their (modern) sense of time—the time most of us operate under. They would persist in telling mom what year, place, and person she was, alluding to the calendar present even though it did not match the temporality of her memories. I could see in mom’s face deep concern and confusion by their efforts. She was in complete disbelief and shocked by how wrong and confused they were.

“What are they saying?” She would ask me.

Thus, even as an unborn person, unquestionably I was mom’s companion through the pieces of her history from a time that for folks in the nursing home and in the majority of the Eurocentrically educated world, was not chronologically feasible. Both of us experienced those brief moments often to resolve whatever concerns she may have had, at times involving her parents and siblings—my grandparents, aunts and uncles, all biologically dead—and her childhood home in La Candelaria, in Bogotá’s historic downtown. She worried if we had locked the house after we left, or if we had brought the keys with us, if we had enough time to eat dessert and get home in time before her younger sister, Estella, would get there, or Alberto, her oldest sibling, would pick us up. It seemed as though the sensorial grammar of our communication implicated mom’s entanglement with what decolonial theorist Rolando Vázquez calls a relational idea of time and space that doesn’t have either a geometrical, chronological, linear, or circular understanding of time like modernity marks reality.

I got a sense of the temporality of mom’s memories not by asking mom her age, since she no longer had reference to that kind of time-thinking. Modernity’s temporality—defined by calendar date, clock time, age, or generations—were not determinants for tracking her stories or a reference to time. Instead, it was the people who featured in that memory and its setting that gave me a reference to the time of the events, making them feasible. Her experience in the present was happening through her history—that is, through her memories from a time when her parents were alive, she was living in la casa de La Candelaria with her siblings, and I had not been born. Hence, there were no westernized life span or human developmental theories that would serve as frameworks to interpret her experiences.

Instead, the vegan cheesecake de maracuyá of La Despensa, the bakery around the corner of my rental, would bring to the surface memories that contained mom’s lived experiences with their own temporalities in no specific order. Events would unfold through particular relationships and their settings. Her memories jumped from one moment to the other according to what the cheesecake called for, and I jumped along. Following her memories was more helpful than listening to them from assumed theories of time, stories, and development. I would say, decolonially speaking, that relational time re-dignified mom’s existence that modernity’s capabilities of erasure through its overinflation of cognition, the contemporary idea of time, and the metaphysics of presence had rendered it suspicious. For modernity, Alzheimer’s had placed mom in an evacuated present time—with no history. She was seen as living in an empty time like Walter Benjamin’s because all that counted as a measurable reality was no longer mom’s reality. Thus, on the contrary, from de-modernity, I would say that by radical listening to the plurality of mom’s lived experiences in their own terms that modernity destitutes through erasure, the senses restituted.

Sensorial Invocation

One of the settings or temporal references that would come up quite a bit in mom’s memories was the colonial casa de La Candelaria of my grandparents. It was the house where mom and her siblings were born and raised until she married dad. This was also the house that kept many explanations of the scars still visible in my body—head, knees, and face by roller skating throughout the house from one patio to the other, running up and down, and playing with my sisters on the swing set by the large fig tree in the back patio still standing. Every weekend mom would take us to visit our grandparents. The house was finally sold to an Italian man much later after my grandparents died. He renovated it into a hotel, maintaining its colonial architecture.

Late afternoon on Sundays when Bogotá’s traffic would be more bearable, I would drive mom from the nursing home to la casa de La Candelaria. The first time we got there I was dying of anticipation for the memories and experiences we were about to live together and for what I was going to learn about mom’s history once she would see the house and the colonial neighborhood. I was hoping that seeing the material presence of the house we have visited several times, through her memories, imaginatively, from the nursing home, would call upon a flood of pieces of memories here and there, unleashed from Alzheimer’s and running loose through La Candelaria’s narrow streets, passing through la Catedral Primada were she married dad, right across from the presidential residence, el Palacio de Nariño.

Overjoyed, I would yell out calling and pointing out various landmarks of our shared history through the neighborhood. I had not been there in years! It was extraordinary to be back. To my surprise and quite a bit of disappointment, my persistence in calling upon mom’s memories was futile. The house we had been at through the memories evoked and configured from the sensorial grammar of our relationship was not the material house of la casa de la Calle 11 con 2nda in the year 2023, nor its representation. It existed in a different temporality.

Over a year after mom died, cousins on my dad’s side, my sisters, and I were finally able to arrange a time to meet in Bogotá and drive to my dad’s family farm in Sasaima, one hour away with no traffic, to bury mom’s ashes. She is buried next to my dad’s, my paternal aunt’s, and paternal cousin’s ashes. They are overlooking the mesmerizing landscape of the Andes mountains, surrounded by the farm’s variety of lush vegetation that my dad had a deep connection to. The scars on my body that la Casa de la Candelaria could not explain, the farm in Sasaima could from rolling down the hills, swimming, and barbecuing with my sisters and cousins during the various trips with dad’s family growing up. Unlike the scars of the women working at the nursing home, these were privileged scars of a life from the minority in Colombia also living in the midst of Colombia’s armed conflict. Privileged and all, even so, neither la casa de La Candelaria nor the farm in Sasaima were exempt from becoming sites for violence where kidnappings took place of an aunt and cousins on both sides of the family while I was still living in Colombia.

During our day or weekend trips to the farm growing up, at lunchtime the family would get together and sit around the large dining table to eat what the land offered–herbs, vegetables, and fruits among other foods. We were always served delicious vegetable soup with cilantro. In the diaspora, I have experienced being at that table and sipping soup with cilantro millions of times. Cilantro calls on that memory. In a split of a second, cilantro opens the door for me to enter into that moment although I am on U.S. soil. It brings me to the sensing of the taste of food, the light coming from the wood windows, the touch on my skin of Sasaima’s humidity in the mid 70’s, and the crackling sound of the straw woven mats. I can’t recreate that experience otherwise. I’ve tried. I can see static images but can’t experience the sensation of being there that cilantro brings to life.

Returning to the farm in 2024, I was amazed by being at the same table, eating the food of the land, and soup with cilantro. I couldn’t believe it. It did not take me too long to realize though that it was a different “coming back,” it did not feel the same as the experience of the memory from the diaspora. It was as if the memory linked to cilantro existed in a life with a different temporality, in a parallel reality, yet intimately connected to the material farm. Just like mom’s experience of driving by la casa de La Candelaria in 2023, the vividly sensed farm within my connection to cilantro also belongs to a reality that was embedded in a different temporality, and therefore a different relationality. It is a place I can no longer drive to on my own—no matter the traffic or the day —but I can taste my way to it.

In connection to a decolonial premise, I would say that la casa and the farm exist in memories that do not subscribe to an understanding of modernity’s contemporary, its linear temporality, and notion of reality as presence. Although I would say that our memories surfaced in the present as expressions from a relational time, relationally, not always on our own volition, but under certain circumstances, such as sensorial. According to Vázquez, these memories, like all our memories, live in a plurality that is always moving. Hence, memories are not chained to a particular date or someone’s age in a dead or static past, for example. In that sense, these memories are not representations of the material in the present—mom lived certain moments of her day at La Casa de la Candelaria while being at the nursing home, but could not recognize the material house on Sundays when we drove by.

Our lived experiences live in our memories and grow their own heartbeats, giving us life. We are made of memories, collective memories, with their own lives, sensings, and times. Our existence comes from those memories. Thus, it might be more suitable to say that memories are beside us. They are not deep in history but wide in history, next to us or in front of us, accompanying us, guiding us, and constituting our lives, even though they do not always show up in the present, unless relationally and sensorially called upon.

Like my memories, mom’s seemed to be interacting with other memories, perhaps being that the reason why it was possible for me to join her in a moment in her life when although I had not been born, memories of my aunt, uncles, grandparents and the house better helped me to be there for her and with her. Therefore, although mom’s ability to recall events that took place in the nursing home that morning, an hour ago, or last week kept dwindling, her memories interconnected to mine and our senses kept alive aspects of what she had lived, shaping how she lived, and continue to live through us, her four daughters’ memories and the memories of all she had contact with, perhaps even before she was born.

Her existence spilled over modernity’s placed boundaries of her skin to re-exist via her relational memories in a relational time that has kept her alive after her biological death. Mom got to re-exist, inadvertently putting doubt to and rendering suspicious for me modernity’s persuasive cognitive driven and over inflated perspectives that previously rendered mom’s life doubtful and suspicious, when her life was reduced to be only cognitively spoken about.

Re-existence: Restitution by De-institutionalization

After getting over my disappointment from my mom’s unexpected response to La Candelaria, I chuckled a bit and rolled my eyes while driving back to the nursing home before it got dark. “Really?” I thought. Although I had been experiencing and learning from the ongoing and uncertain movement of my relationship with mom, and attentive to what the unpredictability that each bit of memory would offer to us, my over-a-decade of experiences as a therapist, academic, and researcher—Eurocentrically trained—couldn’t help it but to show up.

I realized that I had begun to identify a pattern of response from mom to “study it” and identify its conditions or context. I tried to generalize it by manufacturing similar conditions for the sustainability of the pattern of response. I wanted to replicate it. In doing so, I was attempting to manipulate mom’s response at my will by driving her to la casa. Ugh! I was guided by my own assumption and best intentions to create a “happy” moment for mom. I am fairly confident in saying that this is somewhat similar to modernity’s logic of knowledge production in therapy.

Based on the therapeutic model’s theory of change—or what the therapist believes (based on research) makes people “happy” (well, stable, healthy, or problem free etc.), interventions are identified with expected outcomes (via research or clinical case examples) to be replicated (mostly to a homogenous population). Such interventions are technified or manualized for easier distribution, consumption, and implementation for others to use with the persuasive generalized promise of delivering an outcome of change to help a-historical people. I am afraid that by doing so, I was imposing a boundary between the subject (investigator) and object (mom) to arrogantly identify sensorial tools for change, to technify and manualize our relationship based on modernity’s arrogance to self-define what is good for others.

Very gladly so, unintentionally perhaps, mom sort of delivered a candid middle finger—not the first nor the second in her life—at my attempts at technifying our relationship. I received her delivery happily. I had re-institutionalized our relationship, losing sight of the possibilities that come from the borderlands, memories and their sensorial grammar, relational time, and defamiliarization from modernity’s logic of erasure.

Mom’s implicit middle finger reconnected me to our lived experiences to sense more clearly what institutional practices do and fracture, like the institutionalization of the land, bodies, relationships, healing, and histories. Thus better discerning deep connections—being from here AND from there—to my home-land, in various relational times, my languages, and relationships with the people I owe my existence to, the food the land offers, the Andes where my parents ashes are spread, la casa and the farm along with their explaining histories, the Bogotá altitude, the strangers in the street, the acquaintances of the bakery around the corner, and the long-time friends and the people they owe their existence to. These are the sort of experiences that contribute to de-institutionalizing my work as a therapist and training therapists, to begin conceptualizing our work first and foremost from the histories that make us.

Author’s Note: I want to thank Jill Freedman & Gene Combs at the Evanston Family Therapy Center and their 2024 training cohort for listening to my reading of an earlier version of this story, which helped me revise it. 

Why I Hate Alzheimer’s

Alzheimer’s is a Thief

As a therapist, to say I hate a disorder is a big deal for me. I specialize in personality disorders—narcissism, borderline, and anti-social—and have found beauty and giftedness where most see dysfunction. I don’t hate any of these disorders, even the ones that tend to be destructive for the client and their family, and exceedingly challenging to work with clinically.

But Alzheimer's is different. A personality disorder can be understood and even managed. Someone with a personality disorder can grow in their perception of how the disorder changes their perception of reality. They can learn new ways of coping and relating. But such is not the case when working with clients who struggle with Alzheimer's. Because people with a personality disorder tend to be long-term clients, I have the unique opportunity to see these clients, as opposed to Alzheimer’s patients, though many life stages, including the aging process.

“Alzheimer’s comes like a thief in the night”; except it keeps returning at random times during the same night and on nights thereafter for years at a time. Like a thief, it steals one item at a time—a memory, a possession, a skill—and moves around others, so they appear to be lost but are not. Sometimes it breaks things and leaves the pieces behind in unrecognizable forms. For the most part, it is sneaky, always moving and changing what is least expected. But in the end, it steals the whole house or the whole person leaving no remnant behind.

The worst part is not what it does to the person but what it does to the family and friends. The family remembers what was in the house and cannot forget what was lost or moved. With each visit from the thief, the family is traumatized by the stolen items or damaged goods. Bit by bit, the family suffers a new loss each time the thief comes. They cannot forget what is missing. They want to forget but are unable.
This is why I hate Alzheimer’s.

My Father’s Struggle

My dad had Alzheimer’s. Watching him fade away was one of the most difficult experiences of my life, both personally and professionally. It challenged my ideals, tested my patience, expanded my knowledge, and wore me out.

My dad was an exceptional person. He is credited as one of the pioneers of the computer age. He took the early building-size, main-frame computers and found practical applications for business such as the airline reservation system and the storage of security documents for the government.

His genius IQ, matched with a reserved but intense narcissism, made him a force to be reckoned with. In his personal life, he turned a paralyzing airplane accident into a triumph of brain over body. At 22 years old, he was told he would never walk again, but his determination, willpower and never-give-up attitude allowed him to walk until Alzheimer’s stole that ability away.

“No amount of brainpower, willpower, determination, or perseverance could stop the negative progression of Alzheimer’s”. As a therapist, I am trained to spot changes in a person’s behavior. But seeing them firsthand was difficult, and even more difficult was placing my father in a brain clinic to see how far his dementia had progressed. It was what I feared, and even worse was the realization that he was rapidly headed towards Alzheimer’s.

To test the regression, I asked my dad for a ride to a local grocery store that he had been going to weekly for over 20 years. He could not find it, he could not stay within the lanes of the road, he was driving extremely slowly, and he was yelling at the other drivers as if they were in the wrong. That was when I made the decision to take his driver’s license away. He yelled. He screamed. He threw a giant temper tantrum accusing me of trying to keep him hostage and imprisoned. I was just trying to keep him and everyone else on the road safe. But he saw it as an attack on his freedom and came after me for it.

Nearly every time I visited him, some other decision like this had to be made. He sent a $3,000 check to pay a $300 electric bill, so the bills had to be taken from him. He called old business partners and started telling them about a “new project” that occurred over 30 years ago. His phone access was then limited. He left the house in his PJ’s and we would find him wandering the neighborhood lost. An alarm was always set on the house signaling an open door. He lit a candle and nearly burned down the whole house. With each restriction came more attacks.

This was not my dad. Bit by bit, the independent, self-assured, if somewhat narcissistic, man I knew was transforming into a dependent, emotional shell of a human. Nearly every aspect of his personality was erased. I dreaded my visits to him and the realization that some new restriction would need to be placed for his safety and my mother’s. I hated what was happening to him. I hated how my mother aged 15 years in the span of three. And I hated having to make the hard decisions. I fell deeply in hate with Alzheimer’s.

The Thief Unmasked

Confusion. One of the early signs of Alzheimer's is confusion about family members, favorite locations or regular activities. In the beginning, it seems as if the patient is playing a joke about what they can and cannot remember. At first, the patient goes along with the laugh but later it turns to frustration and then anger or worse, rage. The hard part is that the confusion is different nearly every time. One day a family member is recognized and the next they are a stranger. It is terrifying for the patient to be told they should remember something that they cannot. Think of it as a wave crashing onto the shore, this wave of confusion will pass but another will be right behind it.

Anger. Also known as Sundowner’s Syndrome, the Alzheimer's patient becomes enraged late in the day resulting in temper tantrums that rival those of a two-year-old. It is as if the confusion of the day builds to a crescendo which is then released in outbursts that are uncharacteristic, intense and extremely hurtful to those around. Foul language, throwing things, abusive speech and physical aggression are common. It is often impossible for the caretaker, especially if this is a spouse or child, not to take these words personally. But that is precisely what needs to happen. It helps to disassociate by seeing the outbursts like an acting performance instead of words from a person they love. The words spoken are not reality-based, but rather exaggerations and extremes of delusional thoughts.

Disintegration. The negative progression of the disease means that one day the patient can push a button and the next, completely forgets how to do so. One day, the patient remembers to eat and the next, they do not. Simple, everyday tasks become impossible feats where everything takes much longer to complete than ever before. Like pieces falling away from a formed puzzle one at a time, such is the disintegration of the patient’s mind. This is difficult for the caretaker to absorb because the pattern of deterioration is unique to each patient. Sometimes it helps to see this process as a reverse of childhood progressions and accomplishments. As the disease progresses, the patient becomes more infantile in every way.

Delusions. One of the scariest parts of watching the progression of Alzheimer's is witnessing the impact of the patient’s delusions—on them and those around them. A patient can watch something on TV and be transported into that reality as if they were the ones experiencing the program. Or they might call a hospital a prison, identify a friend as an enemy, or walk out of the house unaware of their nakedness. The temptation for the caretaker is to point out the delusional thinking as a way of comforting the patient. But this can and often does backfire into an angry rage where the patient can become paranoid and believe that everyone is against them. As painful as it is to watch, it is far better to accept the delusion and play along until the patient is in a safe location or has settled down.

Fluidity. Occasionally, the Alzheimer's patient becomes lucid and fully aware of their circumstances to the point that they seem normal again, if only briefly. The fog from their confusion lifts, their natural mood returns, and they are thinking clearly and logically. When this happens, the caretaker gets excited, relieved, and begins to wonder if they were imagining the whole nightmare of deterioration. The caretaker questions their reactions and judgment, putting aside the negative experiences. This is where things can become traumatic for the caretaker. They can begin to believe that it is all over when suddenly out of the blue, the patient snaps. The unsuspecting caretaker is caught off guard as the Alzheimer's patient sinks to a new progressive low point. The discouragement and depression that transpires with each event take a huge emotional toll on the caretaker.

What I didn’t know then but realize now is just how those years traumatized me. It is a form of C-PTSD (Complex- PTSD) to have a parent who was never abusive act in a manner so inconsistent with their personality. It shakes the foundation of their house and yet they are not to blame. Alzheimer's is.

It wasn’t until a client had a dementia-induced manic episode that I realized the level of trauma I had experienced with my father. Listening to the client’s illogical rants followed by emotional outbursts inconsistent with the topic brought back my dad’s behavior. At least with a client, there is the ability to emotionally detach and disconnect in a way that preserves perspective and clarity of thought. But with a parent, it is different.

My dad said things that he would never say. I was adopted by him at the age of 12 and he always treated me like I was his blood child. But, in the last years of his life, he told me he didn’t want me and that I was a terrible daughter. Logically, I knew he didn’t mean it. Emotionally, I detached because there were so many decisions to make. And now, looking back, I see the traumatic impact. This was not my dad. This was Alzheimer’s and I hate what it did to him, to us, to our family.

Looking back, there were a few things I learned along the way that helped me to keep my perspective and not completely lose it during the crisis. I’m a firm believer in losing it after the crisis is over.

Important Lessons Learned

They are not lazy. Alzheimer’s patients are struggling to do even the most automatic routine. As Alzheimer’s progresses, the brain loses its ability to process, recall, reason, and function. What took seconds to register in the past, can now take minutes and even hours depending on the subject, time of day, emotional awareness, and significance. It is not laziness to struggle with matters such as buttoning a shirt, reading a clock, or remembering how to use the microwave. It is a result of the disorder.

There is no significance in what they do and don’t remember. Looking at an old photo album, my dad was unable to identify family members, but he could identify people he worked with. The brain organizes information in a variety of ways, almost unique to everyone. “Alzheimer’s attacks the brain in random ways with some areas of the brain deteriorating more quickly than others”. This makes the progression distinct for each patient, and the patient is not responsible for how any of these parts operate or worsen.

Their comments should not be taken personally. This is particularly difficult especially when the comments are hurtful and said in anger. Anger is a base emotion and is the easiest to express. My dad took his anger out on me. I preferred that over him taking it out on my mother, his caretaker. Alzheimer’s steals the house in pieces, changes the personality, and leaves mere shadows. When the patient speaks, they are rarely their true self. It is useful during these times to hold onto the comments that were consistent with past behavior and leave the other comments at the door.

They can perform when needed. Some Alzheimer’s patients can pull it together for a short period of time during certain special events, almost as if there is nothing wrong. This may cause family and friends to say the reports of the condition are exaggerated. They are not. Usually, after the event, the patient will become even more detached from reality and might even suffer a setback. The “show” is their survival instincts kicking in which can only be sustained for limited periods of time. Once their energy is depleted, they tend to retreat and shut down for a period of time.

They have delusions. As the disorder progresses, it is not unusual for an Alzheimer’s patient to watch something on television and believe it happened to them. These delusions are usually harmless unless they begin acting out paranoid thoughts. Think of the visions as part of an overactive imagination with no filter for what is real and what is fictional. If the fantasies are challenged, however, the patient can become unnecessarily confused, frustrated, agitated, and even violent. It is very important to remember not to challenge the delusions. Just go with them even though it might be painful to watch or hear.

They remember random events. Even the most significant days such as a wedding or birth can be impossible for an Alzheimer’s patient to remember. Showing pictures with names and dates can be useful with the expectation that it won’t work every time. The nature of the disorder causes memories to be recalled one day and lost the next, only to be recalled and forgotten again. Alzheimer’s patients are not in control of what is remembered when it is recalled, and what is not. Sometimes they assign great significance to minute moments and no value to major ones.

They still need visitors. It is easy to justify not seeing Alzheimer’s patients because they don’t remember, so there may seem to be no point in visiting. Stopping by to receive recognition, approval, or attention will not be rewarded with an Alzheimer’s patient. Often, the visits are very difficult and painful. However, it is precisely during these times that the character of a person is revealed. Spending time with them can be thankless but the internal rewards of determination, patience, and perseverance are worth the effort.

Their angry responses should be released. It is not uncommon for Alzheimer’s patients to become confused as the sun goes down, the aforementioned Sundowner’s Syndrome. As the disorder progresses, any change, including increased darkness, can be a source of uncertainty and fear. Anger is a base emotion and frequently is a go-to for anxiety, depression, loneliness, distress, and even terror. As the sun sets, the patient becomes fearful and reacts in anger usually forgetting the occurrence the next day. Holding onto the comments made in anger hurts the caregiver, not the patient.

They will not improve. This is a degenerative disorder for which there is yet no cure. Perhaps one-day things will be different as more research is conducted. The good news is that there is medication available to those who qualify to slow the progression. But there is nothing available to undo the deterioration of the brain. Hoping they will improve adds to the frustration for everyone, setting the stage for large amounts of disappointment.

They shouldn’t be compared. Each person is unique in personality, the associations they attach to an event, what they assign as significant and how they utilize information. In addition, Alzheimer’s impacts the brain in different locations at a variety of progression rates. This creates a distinctive experience for an individual. While it is helpful to be involved in a support group with others who struggle as caregivers of Alzheimer’s patients, it is not helpful to assume the journeys will be the same.

What was helpful for my family was a strong support network of empathetic people. My mother and I shared stories with each other and others who were on a similar journey. Today, we can be far more empathetic to others who are walking where we have gone. Seeking out professional assistance during this time to reset expectations, learn about the disorder, and process the difficulties is extremely beneficial.

Epilogue

As for my client with the dementia-induced manic episode, my ability to relate to the family’s experience was greatly improved because of the deep empathy I experienced rooted in the relationship with my dad and his disease. I found that I could better listen to their concerns, fears, and panic moments without judging, dismissing or overreacting. They knew, as I did, that they had shifted to a new normal and with each change, the grieving process evolved and deepened. We could work simultaneously in the present and future on behalf of the client, and of course, them.

My client will not get better. While the mania may pass, the dementia will remain, and her personality will transform into the same shell-like existence of my father’s. The thief has walked straight through the front door of their lives and begun cleaning them out, insidiously and ravenously, until there will be nothing left to devour.

I grieved when my dad was diagnosed, again when the restrictions began, once again when he had to be hospitalized, and finally when he passed. Each phase in the grieving process was familiar because it was the same issue and yet unique circumstances. What I didn’t expect was to continue my own grieving as I watched and witnessed my clients endure the same or similar loss.

But as I grieve, new insights and understandings form. I’m building a new house out of the remnants left behind by the thief. A house that embraces a new normal, gives allowances for grieving, sifts disorganized thoughts, and allows freedom of expression. And so, I am free as well. Free to hate Alzheimer’s.
 

Helping Caregivers Find the Kid Inside

After my father died, I became increasingly aware that my mother was suffering from dementia. She had never known how to turn on the air conditioner or the television, those were my father’s jobs. This was different. Each time I visited her, I found another piece of evidence. The kitchen table was full of crumbs and sticky from various meals; the refrigerator was full of spoiled food; her clothing had stains on it. I had no idea if she was taking her medication or not and she was not a reliable narrator. I did not want to take responsibility for my mother, but both my brother and sister were dealing with family and health issues. They did not want to know that my mother had dementia. Finally, I hired a geriatric social worker to come to the house and observe my mother for an afternoon. He verified that she had dementia and should not be left alone. I knew I had to take action. I was 55 years old, but all the feelings I had avoided during the years I was raising my children flared up again. I knew I was going to have to struggle with my feelings about my brother getting special dispensations because he is a boy; my wish to have my mother appreciate me; and anger at my mother for being so needy.

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Middle-aged caregiving is a stage of life that can be a painful re-enactment of old unresolved feelings about parents, or an opportunity to resolve them. In this stage of the life cycle, the major conflict is between acceptance and resolution of disappointments vs. repetition and holding on to old wishes. Ambivalence is central to the experience—and yet so many of us have difficulty tolerating our ambivalence. We love our parent(s) but feel angry at what we did not get from them; we want to help, but feel resentful about what we have to give up in order to do so.

Psychotherapists can help patients cope with this conflict by helping them tolerate their ambivalence, and resolve rather than repeat old patterns with parents. Patients may seek help because taking care of an elderly parent is making them depressed or angry. Of course being a caregiver may be a heavy burden under any circumstances. But many caregivers are suffering more than they have to because they are repeating dysfunctional patterns from childhood. The therapist needs to help the patient identify the dynamic that is being repeated. But, while there is a large literature about caregiver selection, there is little attention to the unconscious motives for caring for elderly parents.

These are four common patterns that make caregiving more difficult and painful.

  1. The co-dependent caregiver needs to be needed and is used to organizing her life around the chaotic moods and needs of a parent. While all caregivers have to make some sacrifices to care for their elderly parents, co-dependent caregivers sacrifice their happiness for others when it doesn’t require it. Typically, co-dependent caregivers are the children of alcoholics, drug addicts, depressed or mentally ill parents.
  2. Daddy’s girl wants to take care of her father and feels that she will do a better job than her mother. She has always felt that her relationship with her father is more special than the relationship between her parents. Caring for her father involves competing with her mother; she needs to show her mother’s inadequacy. Similarly, Mommy’s boy wants to take care of his mother in a way that his father did not. The triangular relationship, a remnant of early childhood, gets repeated in the caregiving experience.
  3. The angry/guilty child never felt loved or appreciated by her parent(s). Her caregiving is based on guilt and the guilt is a response to feeling angry. This is a repetitive cycle: the more she does to offset her guilt, the angrier she gets for giving so much to someone who never took care of her as a child.
  4. The child who was sent away or abandoned often experiences the parent’s inability or unwillingness to parent as a reaction to his/her being a bad child. For example, when parents divorce and one moves away, the child often feels that the parent left because she was bad. For some, middle-aged caregiving is an opportunity to be good and get the parent who left or sent her away to love them.

Paula is an example of a co-dependent caregiver. She complains that the time and energy she is spending caring for her mother makes her angry and depressed, but she feels she has no choice but to continue. Paula’s mother had re-occurrent breast cancer six years ago. She lives in independent housing, but her dementia is increasing. When her mother goes to the doctor, she cannot remember why she’s there. She’s safe right now, but only because Paula keeps her medication and gives it to her every day. Each time her mother is hospitalized Paula says she is going to put her in a nursing home, but she never does.

Paula says she always felt like she had to be the mother. She did the shopping and cooking because her mother was working or with a boyfriend and Paula was the oldest girl. When her parents’ marriage fell apart, Paula felt that she had to be even more grown-up.

So why is Paula taking care of her mother when her mother did not take very good care of her? Paula needs to be needed, but she’s confused about who needs her most. She is neglecting herself, her husband and her daughter in order to keep her mother out of a nursing home. Paula also cannot accept that her mother can be taken care of in a nursing home. Paula wants to feel indispensable—she wants help, but she resists changing.

Breaking this self-destructive loop requires time and patience. In my experience, the patient’s insistence that there are no alternatives can be intense because of the underlying unconscious dynamic. The patient may express rage at the therapist suggesting there are alternatives to staying in the same painful pattern, and the therapist may get frustrated at a patient who begs for help but refuses to change. Take heart and take your time.