caregiving – Lucy Bellwood

How It’s Been

A to-do list full of eight different links with "Blog this" written in front of them.

This is a fraction of the items currently in my to-do list app, which functions more like an underpass covered in graffiti tags these days than a tool for productivity. I’m passing through, jotting down names of people I meet, frantic reminders of deadlines, books to read, errands to check off. The chaos of it gives me shivers.

As my dad loses access to words, memories, faculties, ranges of motion, I lose access to inspiration, strength, sensuality, executive function. We mirror each other. My losses aren’t from infirmity, but from emotional exhaustion. Caregiving life is often a life of attrition, and the marathon is taking its toll. I got away for four days last month and came back with a deeper awareness of what’s actually been happening. There’s the kind of burnt out where you can still write about it, and then the kind of burnt out where you can’t. There’s no paper trail from these last few months. The calendar, the blog, my Patreon, my newsletter: all blank. This is how it is sometimes, but it can’t be how it is all the time.

That break was a full breath—an influx of oxygen that look me from 2% on Low Power Mode to a wedge of green battery. Not fixed, but functional. Maybe 38%. Enough to catch little pockets of joy with. Enough to open the “New post” tab and not just want to take a nap.

marlee grace says “I think Summer plays its cursed trick on me to speed me up when I want to go just as slow as October reminds me to.” It gives me chills to read that, because my body feels that way too. In summer I need stillness. The heat and the light and the chaos push me to overextend, when what I really need is five deep breaths face down on the ground, forehead to the earth, painfully aware of the size and shape of my nose as it mushes into the carpet. In the winter the studio is cold in the mornings and I want to dance and I love to dance and it’s not so hot that the idea of riding my bicycle makes my eyes water. But when I’m as tired as I am from a summer of doing Too Much, the movement is hard to come by.

Back to School energy is real, but/and it’s not the same as summer’s altogether-too-brightness. I’ve written here before about how school was often synonymous with spacious, silent mornings that stretched on forever. I can have both the stillness and the movement. I’m chipping away at the space for it. I am trying. I know my body remembers the moment I give it space to do so. (I feel like this is all I say these days, but it’s still true.)

I just saw a punchcard someone made for saying “No” to things the other day. I need to make one.

There. I made one.

Art, Illustration

Father’s Day 2023

Drawn in Procreate with my finger while feeding my dad supper.

I keep trying to look—really look—at all of it: what’s not here, what’s still here, how his face changes when he’s tired or alert or confused or happy. I keep thinking about cartoonists who have been in this position before me and the drawings I’ve seen them do of the people they love at the end, when it feels as if there’s no other way to stay present.

I am trying to stay present.

Sometimes (like this week) that means staying somewhere else, using the mild distance of a local housesit to recalibrate my understanding of where we’re at. My fatalism wanes at a distance because when I visit I see more of him. My presence becomes a novelty, and he perks up at novelty. I get to err more on the side of what’s here than what’s not.

This, too, is a gift.

Brain Food, Reading

In the Dark

Jacob wrote six very good sentences today about jealousy and being an artist. I needed them this morning because there’s nothing like moving back in with your parents and mostly disappearing from the face of social media and undergoing a massive gear shift in the trajectory of your career to bring up feelings of unworthiness and comparison; but that’s not what I wanted to write about.

The fifth sentence (“The purpose of an artistic star system is to undermine solidarity”) brought me up short because I interpreted “star system” as “constellation.” The constellation is one of my favorite metaphors for how creative people—all people, really—exist in the world. On these grounds his statement didn’t seem right at all. On second reading I realized he meant “star system” as “a system in which certain people are held up as shining exemplars while the rest fade into obscurity,” to which: absolutely yes. The dangers of worshipping celebrity.

I’m flying solo this week while my mum attends my godfather’s funeral in England, but I’m not really solo. We’re trying overnight caregiver coverage for the first time; something I advocated for because loss of sleep is infinitely more disruptive to me than structuring my days around changing my dad’s Depends and making him meals and bathing him and metering out the distribution of pills.

There are so many gifts to trying overnight care, but one of the biggest has been getting me back on my early to bed, early to rise rhythm. I’ve been waking up of my own accord at 5:30 or 6, feeling more rested than I have in months. It grants me a gift my dad taught me to love: an hour and a half of luxurious time to myself first thing in the morning.

Many of my happiest memories of being with him are around this time of day. In high school, we’d listen to Erik Satie on my boombox in the kitchen while he made me eggs. In middle school, we’d drive to the tennis courts at Libbey Park and hit balls back and forth under the amber sodium lamps until the sun came up. (Neither of us knew how to play tennis, but it didn’t matter.) Earlier still, I’d wake up to the sound of him tapping away at the keyboard with two fingers in the corner of the bedroom, writing.

Those hours felt like secret time. Sacred time.

I still treat it as such. This morning it was dark enough when I got up that didn’t realize the valley was shrouded in mist. Now I can see that the lawn outside my window is spangled with a galaxy of dew-soaked spiderwebs.

All this is to say that in the blissful hour I’d been granted this morning, I dove back into Recollections of My Nonexistence, Rebecca Solnit’s memoir. She writes a great deal about context, and the way subcultures and communities act as greenhouses for culture, so when I read Jacob’s post, the string layer came back online. Solnit writes:

In a way, this has been my life’s work, the pursuit of patterns and the work of reconnecting what has been fractured, often fractured by categories that break a subject, a history, a meaning into subcompartments from which the whole cannot be seen. […] The art of picking out constellations in the night sky has cropped up again and again as a metaphor for this work.

Elsewhere she quotes the poet Diane di Prima: “You cannot write a single line w/out a cosmology.”

I believe this with all my heart.

There is no content creation without context creation.

Reading

A Blaze of Kindness

The Terra Nova Expedition is the Millennials’ polar expedition. We’ve worked really hard, we’ve done everything we were supposed to, we made what appeared to be the right decisions at the time, and we’re still losing. Nothing in the mythology we’ve been fed has prepared us for this. No amount of positive attitude is going to change it. We have all the aphorisms in the world, but what we need is an example of how to behave when the chips are down, when the Boss is not sailing into the tempest to rescue us, when the Yelcho is not on the horizon. When circumstances are beyond your power to change, how do you make the best of your bad situation? What does that look like? Even if you can’t fix anything, how do you make it better for the people around you – or at the very least, not worse? Scott tells us: you can be patient, supportive, and humble; see who needs help and offer it; be realistic but don’t give in to despair; and if you’re up against a wall with no hope of rescue, go out in a blaze of kindness. We learn by imitation: it’s easy to say these things, but to see them in action, in much harder circumstances than we will ever face, is a far greater help. And to see them exemplified by real, flawed, complicated people like us is better still; they are not fairly-tale ideals, they are achievable. Real people achieved them.

I am leaping out of my chair and whooping and cheering and hollering about this passage from Sarah Airriess’s latest Patreon post. (The whole essay was released early for Patrons, so you can either become a supporter to read the whole thing today or just wait it out until it becomes more widely available in a month. Personally I’d recommend the former, because Sarah’s Patreon is one of the best around, but I’m biased.)

This talk originally accompanied the launch of The Worst Journey in the World, Vol. 1, Sarah’s graphic novel adaptation of Apsley Cherry-Garrard’s account of the Terra Nova Expedition. I’m holding my copy right now, and it’s one of the most beautiful comics I’ve ever seen. Again: my appreciation is probably heightened by the fact that I’ve been following along on Patreon for years as she’s shared the process behind every page, but even without that context it’s a beautiful, beautiful book.

A page from "The Worst Journey in the World" showing a view of pack ice from the rigging of a tall ship.

A page from The Worst Journey in the World showing two characters observing a beautiful sunset.

In the microcosm of caregiving, I’m learning this lesson over and over again: it isn’t the systems that make it bearable; it’s the people. It’s Gabriela texting to say she’s bringing over a rotisserie chicken. It’s Jim coming by in an hour to take my dad out for a visit to his favorite coffee shop. It’s Jen holding space for our cohort of young caregivers to show up and commiserate with each other over Zoom because she went through what we’re going through and wants to pay it forward. It’s Hayley texting a loving thought from across the country when I somehow need it most. It’s Sarah picking up my watch from the place in Ventura that I keep forgetting to stop at and then coming to help me build a bed frame. It’s also whoever left a free mattress in the parking lot behind Vons.

I think back on the way I lived through the first ten years of my career and it feels so different. I was bolstered and supported by community, it’s true. I was even asking them for help at every turn to make my books and my work possible! But somehow the ways I’m relying on others right now feel so different. I’m humbled so much more thoroughly by letting people in during this season of my life because it’s not just creative anxiety anymore. That’s peanuts. That’s easy.

This is the real shit.

It’s not freezing to death in Antarctica shit, but some days it feels real close. I’ve feared and loathed the thought of anyone seeing me like this for so long, but time and time again I see that people want to help each other. Or, at the very least, my people want to help me. And my dad’s people want to help me. And my hometown wants to help me.

I just have to let them in.

Blog

Sit.

In caregiver support group, someone says “I would like to sit longer with joy,” and my body responds with an instantaneous shower of chills.

There is an urgency to life right now. It feels like nothing can wait.

At dinner immediately after, I catch myself leaping out of my seat at soon as the last forkful of food has entered my mouth. I stop, sit back down, close my eyes, take a deep breath. More chills. I feel my gut unclench.

I did it again this morning at breakfast, jumping up like there’s a fire in the kitchen and I have to rush to put it out. But there’s no visible fire, just the slow, underground burn of his decline. Miles and miles of it stretching under everything.

But still.

I would like to sit longer with joy.

Blog

“You can be a carpenter this time around.”

A lovely short post by Dave Rupert about platforms and silos and what we’re getting out of being in online spaces. Having been largely absent from social media since becoming a caregiver, I don’t feel a lot of Loud Feelings about the implosion of Twitter.¹ I do feel the urge to encourage folks, as Dave does, to “pour a foundation for your own silo or home.” A personal website is a lovely thing. Nobody will buy this platform and use it as their personal plaything. No advertisers will boycott and send me scrambling to produce different content. No seed funding will run out overnight.

But as Robin said: “It’s not enough to make something and post it online; you must also inject it into some channel that will carry it to people.”

For now, that channel is mostly RSS, with the occasional direct share to Discord and Slack. I’ve contented myself with carrying these posts to far fewer people of late, and maybe that trend will continue. I’m toying with the idea of Dunbar’s Digital Number. How many meaningful online relationships can I maintain? The number shifts dramatically given what I’m doing in the rest of my life, and the fact is that I’m currently walking around with overwhelming emotions sloshing perilously close to my airways at all times. So I don’t let myself worry over what will become of Twitter, even though it brought me so many treasures and connections and friendships and opportunities over the years, because I’m doing as Dave suggests and pouring value into myself.

That’s enough for now.

^{1. This might change when it’s time to promote my next book and I emerge from the bunker to find tumbleweeds where my weird and far-flung online friends once stood, but that’s a problem for Future Lucy. ↩}

Blog

…After These Messages

I’ve become a person who says I’m going to do things and then completely fails to do them and it feels so intolerable to my sense of self.

In my support group for young caregivers we talk about the emergence of new selves from this season of our lives. How they’re unfolding in real time. How we haven’t fully met them yet, or learned what they really care about. What they’re capable of.

Past Lucy—or Portland Lucy, as I’ve been thinking of her—excelled at Doing Things, but Present Lucy isn’t up to the job. Past Lucy still says “Thanks so much for thinking of me. This sounds like a great project! I’ll get you those initial sketches by next Friday,” while Present Lucy says “Have I already taken his blood pressure this morning? How long has it been since he ate? Will I be able to sleep in my own bed tonight or are his legs still too weak to go up the stairs to his room? He needs a bath today. When did I last cut his nails? Is that the alert system going off? Oh he just got out of bed. The nurse is coming at 1pm. The phone’s ringing—oh shit it’s the lawyer. I was supposed to sign that engagement letter. What did we talk about at the appointment? I can’t remember. It’s already been a week. How long has it been since I ate? I need to change his Depends. Time to take the blood pressure again. The nurse said he shouldn’t sleep too much during the day, but the physical therapist said to be careful not to overdo it on the exertion. Should he be exercising right now? Should he be asleep right now? What’s this check I just found in my desk? Agh, there’s the package I told her I’d mail before the weekend. Last weekend? What day is it? I need to do laundry…”

(and on, and on, and on)

The friend I’ve been doing coaching work with looks at me sternly from our Zoom window. “You need to let go of the idea that you can work in an environment where you’re constantly being interrupted by a medical alert system.”

Okay, so I have to leave. Go to the studio. I’m lucky—so lucky—to have a studio. I just need to get there. To get there I need to have slept enough to get up early enough to go before he wakes up. To get there I need to get the ingredients to make the quiche to bring the food so I can stay long enough to work. To get there I need to get gas in the car to drive across town to be there on time. To get there I need to have enough executive function to put all the pieces in place, and we already know how well that’s going.

“I hope your dad’s doing better after his stint in the hospital!”

I parrot back platitudes, but I don’t know what they really mean. He’s recovering from three surgeries and adjusting to new medications and succumbing to mortality all at once.

He went in unwell and for a moment I entertained the fantasy that he’d come out better. Not cured, just improved on some level. And maybe he is. Maybe it’s hard to see beyond the fatigue and the confusion to the circulatory system beneath. The miscalibrated meds a mask for actual health improvement. But it doesn’t feel like he got better. It feels like he’s just getting worse, and we’re over here pushing so hard to try and stave off something inevitable.

Portland Lucy will be back after these messages.

(But will she?)

(And if not, who’s coming in her stead?)

Brain Food

Coach

I’m taking advantage of a chance to work with a new acquaintance who’s training to be a coach. I’ve never had a coach before! The idea of having someone—ANYONE—to look out for me is really appealing right now!!

But also: I’m suspicious of why I’m doing this.

Some things I know:

The way I was working pre-Pandemic brought me a degree of financial stability, novelty, recognition, and stimulation that was deeply pleasing to me
The way I was working pre-Pandemic spread me thin, encouraged me to keep playing the hits, caught me in a web of social media addiction that didn’t make me happy, took me away from developing deeper and more intimate relationships with the people closest to me
I have a big fat A+ Student complex and a Perfectionist streak a mile wide
I have at least five personal projects that all feel like they’re languishing at 89% completion and if I could just get them finished everything would change
I have a knack for translating complex internal experiences into stories that speak to people
I feel pressure to translate every complex internal experience I have into stories that speak to people
Making work that connects me with other people nourishes my soul
I used to believe that by pulling off impossible deadlines I was somehow training to cheat death
My life as a caregiver (and co-parent-habitator) is so different from any other life I’ve lived before
I live in a society that systematically devalues the kind of labor I’m spending the majority of my time doing right now
I live in a society that systematically valorizes the kind of career I was building before I transitioned to this season
Doing more will not ultimately protect me from the grief of slowly and inevitably losing my dad

I’m sniffing around the idea that I might be using a coach as a taskmaster who will “get me back on track” and help me recapture the cadence of my pre-caregiving life. Do I really want that? Or is it just my best guess at what will give me the good brain drugs, and I’m so hungry for something that feels better than the inevitable decline I live with every day that I’m scrabbling for it with everything I’ve got?

Blog

Events of the Week

Cross-posting from Patreon because I want to keep this stuff on my site, too. CW: this post talks about an ER visit, elder care, and grief.

Two days ago I was trying to explain to a partner how intense being a caregier is despite there not being very much “action”. My dad is stable. He doesn’t have a clear timeline. I just know that he is old, and often confused, and needs my help.

Yesterday that looked like agreeing to take him to The Farmer & The Cook, the local venue where the collage pieces we made together have been hanging for the last six weeks. That’s where I took this photo. He misses being out and about every day, greeting his public, watching people going about their business. It’s one of the things I struggle with most: I want him to be safe, and I also want him to be happy.

A photograph of Lucy's dad, Peter, wearing a blue tshirt and a sun hat and smiling at the camera. He's sitting on a patio in the shade.

It was set to be a scorcher, so I made extra sure he’d had breakfast and his smoothie before we left the house, tried to get there early in the day, parked him in the shade.

But maybe I jinxed it, talking about there being no action, because ten minutes after I took this photograph he had an episode—slumped over, drooling, unresponsive. His dentures slid out of his mouth one after the other in a slow-motion horror show I’ll never forget. I kept hoping he’d snap out of it but he didn’t. Someone got me ice. I found myself wondering if his insurance would cover an ambulance. I didn’t know what to do. I called my mum to come join me and asked her to bring the walker, because we’d gotten him into the car with the walker on other occasions when he got wombly, but in this instance it was totally laughable because the man was clearly unconscious.

He was gone.

She arrived, took one look at the situation, and called 911. I just kept holding his shoulders, patting him down with ice, trying to bring him round. It is awful to feel so useless in the face of a crisis. I knew he needed to drink water but he couldn’t drink. How was I supposed to get him to drink?

He looked so small when they put him in the ambulance.

A pen drawing of an elderly man in an ambulance surrounded by machinery and shadowy figures.

Driving the half hour to the hospital on the tail of the paramedics, there was no way to know what we were in for. Would he be paralyzed? Would he be dead? Would he remember? Would he be fine?

There’s a sick sense of relief bound up in an episode like this because we understand acute crisis. I can talk about “hospital” and “collapse” and “emergency” and people will understand—even if they’re just drawing from pop culture, they’ll understand.

But every day as a caregiver carries that load of uncertainty. It’s not as loud, so we can function, but it builds and builds. It ripples. It reminds me that it’s not just my dad whose life could change or end at any moment—it’s me. It’s everyone.

Even when nothing is happening, so much is happening.

I spent 9 hours on the sidewalk outside the hospital, waiting. It was 90º out and miserable. No waiting room privileges because of COVID. Mum had to be the one person allowed in the ED with him because she knows his doctors and medical history better than I do.

One impossibly kind nurse got me back to see him for three minutes, which wasn’t enough, but also was. I heard his voice. I saw his eyes open and smiling. I got to stroke his hair.

They kept telling us he was going to move to the hospital proper, where he’d be allowed two visitors, but when they finally did move him, four hours after that initial, tantalizing announcement, visiting hours were over. I had to stay outside.

I’m paying a lot of attention to labyrinths this year. I’d already been outside the hospital for two hours when I went to move the car and realized I’d been sitting twenty feet away from this:

A photograph of a labyrinth etched in a concrete patio at night.

I’ve stopped being surprised by this sort of stuff. I just start laughing and saying “Okay, OKAY I get it” to no one in particular.

I walked it when the sun finally went down and the temperature dropped enough to move in.

In ten minutes I’m going to drive back to Ventura to pick him up and bring him home, apparently no worse for wear. No stroke, no heart attack, just…age. Heat. Dehydration. Blood pressure. Who knows. And this makes me feel relieved and grateful and exhausted and also so angry. Because even if he’s fine, we’re left carrying the weight of how it could’ve gone. These pendulum swings of possibility.

I’m left remembering his teeth in his hat on the floor of the car, riding down the highway with us on our way to the unknown.

Comics

Hourly Comic Day 2022

Hourly Comic Day is an annual tradition in the comics community where folks set out to draw a panel (or two, or three) for every hour they’re awake on February 1st.

It took me a couple weeks to get through finishing my pages from this year because it was a) hard to fit in inking and watercoloring and posting around caregiving, but also b) just exhausting to deal with emotionally. Still: I’m so glad I did it. In 2021 I was right on the cusp of uprooting my life in Portland to move down to Ojai and look after my dad. Now I get to have a record of what the rhythm of these days has been like, and I’m sure I’m going to appreciate it more and more as time goes on.

There’s more to say but I’ve been formatting and posting these pages in various ways all day as I spread them across my internet haunts and I am wiped, so I’ll just get on with sharing them. If you’re finding this through an RSS reader, be warned that the gallery won’t work! Ya gotta click through to read it easily. (Also! An accessible edition with panel by panel alt text is available here thanks to a collaboration with various folks from the Friends of the Space Gnome Discord server. Blessed be their name.)

You can read previous Hourly Comic Day installments at the following links: 2021, 2019, 2018, 2017, 2016, 2015, 2014, 2013, 2012, 2011.