How My Loved One’s Dementia Turned Me Into a History Writer
All we have is the past.
Dementia. I wake it up, I cook its meals, I put on its bib, I zip its zippers, tug on its shoes, adjust its pillows and blankets and hats and sleeve length, only for it to plant its feet and re-adjust until it’s satisfied.
I take the salt shaker out of its hand when it forgets it’s been pouring for too long. I ignore it when it yells at me for taking the salt shaker. I make a new meal when it complains this one’s too salty. I walk in on it in the bathroom as it's putting on three diapers instead of one or taking a bite out of the soap bar. I burst into the kitchen from across the house as it’s sticking a fork in the toaster or pouring itself a tall glass of bleach. I put child safety locks on all the cabinets and hide the toaster up high.
I hide the scissors that it used to cut open all the button holes of her shirts because they must have shrunk if it can’t get her shaking fingers to do them up itself. “But you don’t understand,” it says in protest when it can't find the scissors, “I need them to cut my diapers off.” I spend hours, days, weeks, and months crouched in front of the toilet, teaching it how to pull the diapers down and lift her legs out of the holes, before I finally give up and hand it back the scissors. A week later, I discover strips of clothing clogging up the toilet. The shirt I let her borrow. The sweater we just bought.
I shuffle it out of the bathroom and mop the flooding waters while it yells for me to come and help it figure out how to turn on her reading light. When I do, she looks up at me with loving eyes, impressed I figured it out and wanting me to teach her. I kiss her head and walk away without saying a word. I’ve taught it how to turn on the light thousands of times.
I started writing seriously the same year I (naively) took on the full-time, live-in care of my grandmother. Since then, I've noticed a pattern in my writing. I call myself a "sassy history writer" but I've found that I especially like to write about statues — emotions so powerful someone deemed them worthy of being frozen in time.
For example, I love to write about why you see SO many variations of the crucifixion of Christ here in Europe:
I love to write about what compels people to commemorate war victories with public statues of half-naked women:
And how depictions of pain can reduce our own:
I love to write about statues that jump out of their own space-time and seem to acknowledge me:
Along with statues that move me to tears and change my perspective:
A famous sculptor who spent the entirety of a destructive civil war secretly preserving as much history as he could hoard:
The little dragon statue that gave me courage during the start of the pandemic, when my whole family was sick and we didn't know what that meant:
It was actually my therapist who noticed it. She doesn't talk much, preferring to let me talk my way around to what I already know. So when she does mention something she's noticed — patterns, hidden metaphors I've missed — I pay attention.
"Do you feel frozen in time?" she asked me one day. "Like a statue?"
Dementia has caused Nana to forget she’s mostly deaf. I get up from wherever I am, whatever I’m doing, every single time she attempts to talk to me from more than a foot away. Because if I don’t, Dementia will keep calling my name.
“Just a minute, Nana!”
“I’ll be right there!”
“I’m in the bathroom, Nana!”
I stop mid-stream, pull my pants up, resolve to flush and wash later, race out of the room, stand right by her side, lean down to her ear, and yell,
“I was in the bathroom!”
“I was in the bathroom!”
“Oh, were you in the bathroom?”
“Yes! Can I help you with something?”
“Can I help you with something?!”
Ok. Let's assess:
Coffee’s hot enough but not exactly to her liking, maybe that’s it.
She’s also got her cold drink – one hot, one cold, or else she won’t eat.
She’s got plenty of napkins.
The pillow she likes to balance on top of her feet (not below) is there.
The scarf she insists is a blanket hasn’t fallen off her elevated legs either.
Her hair’s not sticking out of her hat in that way that tickles her face and drives her crazy.
The electric heat jacket my mom got her is on, battery charged. She's perpetually cold no matter how high we turn up the heat.
She hasn’t taken her pills yet, but they’re in front of her…
What, then? What’s wrong?
“WHAT DO YOU NEED?” I yell. I enunciate. I simplify. I feel my blood pressure rising. I don't mean to sound angry but she hears annoyance and, somehow, because Dementia is a little shit, she can still recognize that.
”You know, you don’t have to yell.”
I bite back all the things I want to say. I want to say, “I wouldn’t have to yell if you would wear your hearing aids”. I want to say, “YES I DO!” I want to say, “Can I not pee in peace?! Can you not trust that I will come to you when I can?! Can you stop yelling from across the house and remember, for once, that you are deaf?!”
But I’ve yelled all that before. Hundreds of times. I’ve exhausted all the self-indulgent options, as well as all the seemingly obvious ones and all the brilliant, creative ones too. By now, I’m very practiced at hurting her feelings, at feeling bad about it and brainstorming solutions that don’t work, and, finally, at choosing the non-response. I breathe deep, reach out a hand and rub her on the back in a way that makes her take my other hand and squeeze. My racing heart melts a bit before I remember that I didn’t wash my hands. And that she forgot how to wash her hands a long time ago. I shudder and start planning a shower for when one of my parents gets home to relieve me of this watch.
“I don’t like this,” she says, gesturing to her food and at least looking sorry about it. She loved that exact same meal when I made it for her a week ago. Back then, she'd said she “could eat it every day”. But that was then. She hasn’t liked anything I’ve cooked her this week. It happens a lot, comes in waves.
“Try to eat a little more,” I say. “Then I’ll give you some ice cream.”
“I have to go to the bathroom,” she says, meaning she’ll be in the bathroom for an hour- using up an entire toilet paper roll (sometimes two) on every little drip and drop that comes out of her. She'll cut her barely soiled diaper off with a pair of scissors and then ask me to help her figure out what to do with it like she did yesterday and the day before and the day before and the day before and every day for the past five years.
“Take a few more bites and then go,” I say, not giving her the option. If she’s still hungry at bedtime, I’ll never get her into bed on time and I’d really like a decent night’s sleep before work tomorrow. “Here,” I say, focusing her attention on the plate, “One, two, three!” Counting and rhythm sometimes help. She responds well to them. Singing will do it too, it’s the one good thing her brain still remembers. Everything else is fight or flight.
“I’m already going,” she says desperately, meaning she’s wetting her diaper, meaning she’ll be in the bathroom for two hours instead of one because she’ll assume she needs to take off all her clothes. She doesn’t trust the diapers and she doesn’t understand the difference anymore between the sensation of cold and the sensation of wet. She thinks her cold clothes have all been soiled. I have the option of going into the bathroom with her to try to convince her to keep her clothes on and to physically assist in getting her diaper off at a snail’s pace while she yells, “Not so fast!”… or I can have two hours to myself to cook her a new meal, get some work done, or watch TV. Eventually, she'll emerge, naked but for the shoes that never come off and shivering loud enough that she knows I'm sure to come to her aid.
“Ok,” I sigh. “Let’s get up. Hold onto my arm. One, two, three!”
For the last five years, I haven’t had words for what Alzheimer’s and Dementia have been like. And I’m a writer so, you know… frustrating. Instead, I've been writing history articles, online educational courses, and a rock and roll memoir — stories that pull the past into the light of the present.
Meanwhile, I've been frozen in place, living with my parents and my grandmother, eschewing a love life and a social life in favor of desperately maintaining some semblance of routine and endlessly helping an old woman face her past as though it was the first time, every time.
Now the future's caught up with me. Five years after moving everyone to Spain for the healthcare (which is its own article), after helping Nana fight breast cancer, two strokes, sepsis, covid, broken bones, and past traumas, I’ve finally earned my Permanent Spanish Residency. The second I was eligible to earn a Spanish paycheck, I went out and got hired by a local IT company. I've been going to therapy and I'm saving up to move out/move on with my life while my parents continue her care. The cost of my freedom is that our little three-person team is reduced to two. They're already stressed and taking on extra shifts but they insist it's their job, not mine. I hate when they say that. I hate that they have to soothe my guilt on top of everything they're taking on.
Nothing's changed suddenly. It's been a creeping, gradual change. But the future feels almost tangible and the words have been coming to me on my walks home from work.
What I've been thinking is that it’s beyond non-instinctual, when moving on means accepting you can’t change something. You can’t save her from the demons you help her fight every single day like freaking whack-a-mole, only for them to pop right back up the next day — all progress erased and connection forgotten. Not to beat this metaphor to death, but the game doesn’t even register your high score. You find yourself asking, was it even really real if you're the only one who remembers? Your arm is sore as hell and you're exhausted and she’s sitting there asking why.
My entire childhood, Nana spoke about needing to write down her stories like it was one of the many chores she didn’t have time for. Her husband was perpetually sick and her children needed her to pick up their children from school. My goal, when she got sick herself, was to give her a beautiful end to her unwritten story because she deserved it. She never got to relax and let someone else take care of her. She never got to be a kid or have adventures because she was born caring for her parents and brothers, then her husband, then her kids, then her grandkids. I genuinely tried to give her the peace she'd need to reflect, but then a year turned into five and that’s, like, a thousand epilogues. And because I couldn't get her to write them down herself, it felt like my responsibility to find the purpose and themes of her life, the all-encompassing message for her to go out on.
The problem is that Dementia doesn't follow patterns like that. It’s not like in the movies, were the person is catatonic and disassociated with moments of total, epiphony-inducing clarity. Dementia is cruel, messy, monotonous, loud, chaotic, and highly interactive. It doesn't learn, it eats up moments of profundity and shits them out. For Nana, there’s no linear progress. And I’ve been under the impression, for the last five years, that that means there’s none for me either.
But that’s not true, is it?
I made progress when I started asking myself, “Who is this really for, Katie?”
Is it for the 86-year-old woman who would be happy or not happy regardless of my attempts to make her world make sense? Or is it for the 32-year-old woman who engages in magical thinking that one story has to wrap up before another one can begin?
Writing about history (and specifically the act of that) is the only way I know how to make sense of the present. Only in retrospect does the present contain patterns and metaphors. Trying to look for them in the moment can be maddening. Attempting to anticipate them even more so. What I've learned from dementia is that we retain the strangest and saddest things when our brains start to deteriorate — fear, shame, survival skills, coping mechanisms, bad habits.
I never wanted my beloved grandmother's story to be a cautionary tale about living your life while you still have the capacity to enjoy it. And I certainly don't want to compare what she retains to what we, as a society, retain, the stories that survive as entropy continues to deconstruct and complicate.
And so… like the only answer I've found acceptable for the biggest question there is, I can only remain agnostic and follow what lights my fire.
If it continues to be history and statues, I have good reason. If I can get those statues to come alive for you, it's in honor of her and in spite of Dementia. One day, someday soon, I won't be frozen anymore and it'll be because I released myself.
I like to think she would be proud of me.