Dementia, Ego, and Closure
What the Alzheimer's-riddled brain taught me about adaptability
To say that the brain is a mysterious and complex organ is a gross understatement. Joys, traumas, mundanities, an olio of factoids: everything we experience and absorb over the course of our lives gets crammed into a gelatinous, electrified blob the size of a small honeydew. This inscrutable spheroid goes on to curate all this, sorting according to countless factors.
A select few of us, like Taxi actress Marilu Henner, experience life as though their brain is a high-resolution security camera, complete with an archivist who can provide them with instant recall of any date in their history. Ms Henner and others like her amaze neuroscientists and the hoi polloi alike with their ability to demonstrate the outer limits of what the human memory can do. Where most of our memory centers are staffed by a harried, overworked, chain-smoking motel clerk who’s just hanging on until their shift is over, people with hyperthymesia (or Highly Superior Autobiographic Memory) have access to a tiny internal four-star resort concierge who will provide them with not only rote details of each day in their lives, but full recall of what they wore, who they were with, and how they felt.
Most of us, though, cannot possibly absorb everything our brains are tasked with storing, especially as our career, lives, duties as citizens, and sources of media seem to demand more and more of us at every turn. For us, we must triage any and all information we encounter: Will we need to retrieve this later, or can we forget about it? If we need to remember it, for how long? Should we write it down, or can we retain it?
The calculus changes based on myriad factors: our current mental health, our age, the type of information, and whether it’s something we naturally absorb or must use more focus to learn are all considerations. And as we travel the world (even if that’s only our hometown), gaining and losing hobbies/special interests, changing settings from home to school to work to recreation, our brains learn to focus on certain things more than others. Sometimes that’s with our awareness, sometimes it’s not. As someone who tends to recall numbers easily, at my first job at an Italian deli in the Bay Area I memorized the prices per pound of all the cheeses, and most of the sliced meats and side dishes, and could recall most of them for a few years after I left. That was useful (at least until I left and moved halfway across the country); my brain’s ever-present and uncanny ability to remember the relationship status of far too many celebrities and more than the zero Kardashians with whom I would like to “keep up” is an unwelcome drain on the processing power of my hippocampus.
Whoever we are and whatever our methods for making sense of the madness that is life on this planet, dementia and the havoc it wreaks on our fragile gray matter torpedoes our best efforts to retain new memories.
A writer and editor by trade and a poet at heart, my mom has struggled mightily with Alzheimer’s over the years since her first “senior moments” grew into something more. As I am neurodivergent (diagnosed ADHD and cPTSD), I recall the signs all through my life of my mom’s coping mechanisms to deal with all her responsibilities and the organization it required. As the combination of Alzheimer’s eating away at her brain and macular degeneration stealing her vision took their toll, Mom’s lifelong habit of writing lists adapted accordingly. The lists of U.S. Presidents, states, and their capitals she once wrote in her free time to keep her mind sharp gave way to lists of bills she had to remember to pay, and countless sheets of paper with my phone number—since smartphones didn’t enter the mainstream until soon after my mom’s macular degeneration had progressed to the point of legal blindness, she never did understand that my dad had already programmed several numbers, including mine, into her phone, nor how to access those contacts.
But the one thing my mother forever remains is stubborn. This was problematic in the early stages of her dementia, to say the least. For years we could not even say the words Alzheimer’s or dementia around her without her flying into a tirade. She threatened to sue the neurologist who diagnosed her—for what, it is unclear, as she was already retired by then because legal blindness, a limited understanding of technology, and editing for a medical journal are a rather tragic combination.
It was only in the aftermath of my dad suffering first a broken leg and then a stroke that Mom realized denial of her decline was futile.
And then, the healing could begin.
Mom’s stubbornness in light of steady cognitive decline has been a steady source of amazement to the nurses and aides in her care home, myself, and all her family and friends. When faced with moments where she knows she needs to have her wits about her, she has this preternatural ability to tap into some deep reserve, some tiny corner of her memory center that is still intact, still able to maintain lucidity. She dug deep for that when my dad passed away after a long battle with kidney disease, one week before Christmas and just over two weeks before she would contract the original strain of Covid-19. She became fully lucid two weeks before he passed, and for over a month after.
Once she came to a place of acceptance about having dementia, for the first few years most of the memory deficits I observed in Mom came in a form I liked to call “charmingly confused.” It was sad, yes, but she had a fairly good grasp on the most important things—how to call me when she needed anything, who her closest friends and family were, who still walks this earthly plane and who has already transitioned. She could still dress and groom herself without assistance, even though she could no longer cook or maintain her own medications.
Recent months, though, have brought worse changes. Despite my skill, honed from years of practice navigating her emotions, some days she has episodes where nothing I say or do can calm her down. Sometimes, it doesn’t matter how many tricks I or the nurses or aides have up our sleeves, nothing calms her, and we simply have to get her to stay in her room until her distress passes.
But as anyone who’s had a loved one with dementia knows, while it is a degenerative, ultimately terminal condition, the trajectory is not a steady slope down. The overall progress does slope downward, but there are days of brilliant lucidity, times of utter confusion, and everything in between. From the end of December 2021 through the end of March 2022, Mom and I talked nearly every day for 30-90 minutes, and although her deficits were obvious when I saw her in person in that time, on our phone calls, she was so sharp we could both pretend, as we recounted stories and cried and laughed, that she was normal, that things were normal. I was even able to tell her about global events—with her background in the medical field, the knowledge that Covid-19 and all its descendants are airborne helped her understand why we stick to phone calls primarily, and keep the in-person visits to a minimum.
As those phone calls continued, and I savored each deep, existential discussion Mom and I had, I came to an important realization: while conventional wisdom dictates that sufferers of Alzheimer’s or other types of dementia cannot retain new memories, Mom was and remains aware that she has Alzheimer’s. She’s not always cognizant of what that means, so she will sometimes call me in a panic, saying “I know I have Alzheimer’s, but this is different. I feel like I’m losing my mind. I can’t remember things!” Not sure how I feel about the theory that those with dark, gallows humor are more prone to dementia, but it does help that she and I both manage to chuckle when I say, “Yes, well see, Alzheimer’s is what causes you to forget stuff. That’s its whole shtick.” But the point of this realization was that by having frequent talks with my mom about her condition, what was “new” information finally made its way into her long-term memory. If her decaying mind was capable of this, what else could she do if we tried?
I’ve lost count of all the ways it feels like the world is ending, or at least heading toward a time of extreme upheaval. Because of that and the challenges of being the primary all-hours on-call emotional support for my mom as she transitions, I am extremely grateful to have access to trauma therapy, and I recommend it to anyone who can. It’s increasingly occurring to me that I’m unsure whether our current systems (in the U.S. or elsewhere) are capable of producing people who don’t live with the effects of trauma, both personal and generational. While I maintain a fervent belief that it doesn’t have to be that way, that if we built a world around caring for each other and not on “the economy” many of these worst ills would fade over time, that’s certainly not the world we inhabit now, and trauma therapy is thus more important than ever.
Part of this therapy has involved coming to terms with the ways my mom failed me. She was and remains a loving, doting mother who even now worries about the effect her illness has on me, but she, like everyone, was not perfect. As the child of parents who were impoverished preteens when the Great Depression hit, Mom dealt with her fair share of household trauma. A domineering, violent father and a mercurial mother who kept more secrets than friends led Mom to adopt a parenting approach of never striking me physically. But for much of her life, she did not see that verbal abuse was also abuse, and the pressure she felt to push me to academic greatness when I was a child and teenager led to poor choices in terms of her treatment toward me that chipped at my self-esteem when I was in greatest need of unconditional emotional support. Attempts to call her out on this would land dreadfully, with her offering loud proclamations that I’d “never seen abuse” because she’d never hit me like her father beat her.
As a result, when I processed these episodes with my therapist, I lamented the fact that I could not get closure with Mom on these issues. By the time I went in for my first therapy session, Mom was calling me several times a day, each one more emotionally draining than the last. That was a rough phase that lasted several months. Closure with Mom—true, restorative closure—seemed destined to take place once we both make our final transition to The Bardo.
Mom’s halcyon days in early 2022, however, presented us with the opportunity to achieve that closure here on the terrestrial plane.
While I took great care to ensure I did not direct any anger toward her, over the course of several heart-to-heart talks, I told Mom where I had needed better from her earlier in my life. Having processed these core memories in therapy, I had the clarity to tell Mom that I understood why she did these things—how she did the best she could with the information she had at the time, but these parental oversights affected me nonetheless. My fear, especially in the first of those discussions, had my body trembling. My heart raced, and I worried that once more, she would deflect.
But the most incredible thing happened instead. Each time, when I told her how these errors affected me, she’d take a deep breath, and say something to the effect of, “Oh, wow. I don’t know why I did that. Of course that harmed you. I’m sorry. You know I’d never do that now, right?”
Generations of traumas and pain and regret healed in these moments, for both of us. She quelled her ego enough to hear my pain, see how it impacted my life, and acknowledge the harm it caused. That was all I’d ever wanted. Just because you try your best doesn’t mean you don’t have to own up to your mistakes.
“Just because you try your best doesn’t mean you don’t have to own up to your mistakes.”
The United States’ societal and structural reliance on punishment has been a core symptom of our nation’s moral sickness since its inception. “Tough on crime” politicians like to point to recidivism rates amongst those unfortunate enough to wind up in the criminal justice system as a reason to impose ever harsher sentences, but what chance do prisoners have of true positive transformation when a series of confounding landmines await them upon leaving the extreme violence of prison? When employers don’t hire people with criminal records, and maintaining a job is necessary to comply with probation? When every term of probation comes with some sort of catch that makes it all too easy to wind up right back behind bars?
But this system also has deleterious effects even on those who don’t get caught up in it. When our entire concept of “justice” is violent punishment, who wants to own up to their mistakes?
But owning up to our mistakes is an undertaking we must all complete. Be that in our personal lives, or societally. From the original sins of our nation (genocide of Native Americans and slavery) to the echoes today:
The police state, with its historical roots in the runaway slave patrol
Continued slavery through the prison system
Continued marginalization and forced assimilation of Native Americans
The attempts to assert ownership over the bodies of women, girls, and uterus-bearers of other genders
The attempts to force transgender people off their treatments and back into identities that agree with a piece of paper but not a person’s true sense of self
The campaign to terrorize anyone who does not sufficiently uphold white supremacy into silence and complicity
We’ve all done things wrong. No matter our noblest intentions, we’ve caused harm whether we meant to or not. True healing can only happen when we a) acknowledge the harm without offering excuses for why it should be “okay,” and b) take concrete steps to ensure we do not repeat the same mistake.
Alas, it seems too many of us are too blinded by our egos to acknowledge our mistakes. We fear fiery punishment for mistakes, so when we find ourselves confronted with the harm we’ve done, we want to lash out, find some reason why our “error” was in fact justified. And we’ll contort our logic into all sorts of creative shapes to find a justification.
But what if we all tried owning up to our foibles? If we took well-informed advice, heard the criticism within, and decided to adapt in the process? What kind of world could we build if we shed our worst mistakes and everything that stemmed from them, and committed to building a society around community and healing and mutual aid and well-being?
Maybe we wouldn’t have to feel the dissonance that leads to such emotive reactions to accountability. Maybe we could see what really matters: that we all simply want to live our lives as our authentic selves, without having to fight to survive. Where we can hone our skills according to our personal callings, not on what’s “profitable.” Where we don’t have to be beholden to a system that depends on some people being too poor to survive, to serve as an example to scare everyone else into toiling without question.
Maybe we could find the transformational power of humanity would bring us far greater happiness than profit margins ever could.
Thank you so much for writing this!
Goodness, newsletters take longer to publish than I expected. So there were typos. I made some minor edits. Hope everyone enjoys this edition.