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.
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.
(Prefacing this post by saying I’m safe, just processing what’s happening and trying to keep tabs on what it all looks like on the inside. I’m too scattered to make art about it, so a list will do for now.)
I’m on a zero-to-sixty short fuse, which is uncharacteristic for me. Screamed at my phone when my bank wouldn’t let me log in for more than ten seconds before telling me my session had expired, scared myself.
I’m exhausted, all the time, tired even after nine hours of sleep.
Feeling pressure to return to “normal” and pick back up where I left off. Whiplash.
My heart arrhythmia’s kicking up. Usually I only notice it happening once every couple months, maybe less, but I had a real big one the other day that got my attention.
Hyper-aware of how little water my dad is actually drinking on a day to day basis, starting to roll new behaviors into my routine to make sure he hydrates. Resentful about how much work this is while also feeling guilty that such an obvious issue has escaped my notice until now.
Higher than average number of body chills. I’ve started to wonder if they’re a sort of micro-stress cycle completion attempt. I don’t know. I started trying to pay more attention to my body chills last year, because I get them a lot and they often feel like information—typically positive, or at least linked to allowing my body to really feel rather than clouding emotion with action.
Weird appetite stuff.
Higher-than-average need to control my work and surroundings, hungry for certainty and logic.
A lot of sobbing, often (like the anger) appearing and disappearing very fast. The feeling of a summer storm.
Spending a lot of energy reassuring people that my dad is okay, while deeply conscious of the fact that I am not.
Time doesn’t quite make sense, can’t grasp that the ambulance ride was five days ago. Doesn’t help that it was 90º the day that it happened and now it’s cold and overcast. Feels like another life.
A floating awareness from things I’ve read and friends I’ve helped support and experiences I’ve been through before that this is trauma making its way through my body in a completely natural way, but still feeling a sense of horror and powerlessness.
Just writing this all down helps me recognize the signs and patterns of a mental health downswing, and to understand that this will pass with time and a lot of care for my heart and my body, but also it sucks in the present. That’s reasonable.
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.
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.
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:
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.
Going through my father’s private papers and files after he died, a well-worn folder slipped to the floor. Faded to a pale blue, I could only imagine how thickly covered it was in my father’s prints. I picked it up gingerly and breathed it in – it smelled like Dad – a stab of grief. It was chock-full of pithy quotes written on various scraps of paper, match book covers and the backs of random envelopes; my dad had kept these over a lifetime. If my father had religion, then this was his bible and I was holding it in my hands.