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Waiting for the ibuprofen to kick in
I never planned to write a newsletter about elder care or spend so much time writing chronicles of how things are going with my mom. But this is what it is. She gets better. She gets worse. I spend an hour on the phone with the insurance company. Her caregivers need a day off. Right now she’s better than she was a few days ago, worse than she was a month ago, which was worse than the month before that.
When my mother was first diagnosed with heart failure, she spent five days in a hospital. She had a terrible time. She came out feeling better, on new medications that helped her breathe, sleep, and move around. But she also spent those five days in a bed, which caused her to lose her ability to walk without help. We got her more help—her caregivers’ schedules went from 30 hours a week to 24/7—and for a good while she was doing really OK.
She got an infection. We think it came from the hospital. Round after round of antibiotics didn’t help. She dealt with it, though, and her caregivers dealt with it, changing bandages and keeping her clean. Her legs swelled and reddened and constantly wept. Her daytime caregiver tells me that my mother never complains about pain, but now her legs were hurting her constantly. They went to the doctor. He sent her back to the hospital for an antibiotic IV.
The definition of heroic medicine is solving one problem at whatever the cost. The antibiotics cleared up the infection and wrecked everything else. Now she struggles to stand. Back at home, she came down with a stomach virus, then a respiratory infection, then the weather got cold. Only rarely in Miami does the temperature drop to 45 degrees. All anyone has is a space heater. She stopped eating. She refused to be moved from her bed.
Her daytime caregiver called me on Thursday. Instead of coming next weekend, she asked, could I come now? I took the baby—now almost a two-year-old—on a 5:30 a.m. flight the next day. Struggling to stand up has become a struggle to stay in bed without falling out of it. She can’t go with her caregivers to the grocery store anymore, or be left alone while they do her laundry or cook her an egg. I show up, but I’m useless: My mother and I are not close, she doesn’t want much for me to sit next to her and give her a hug, and with the baby around—who chases the cat, finds the litter box, plunges into it, runs back to the bedroom to talk to the dog, who is too deaf to hear her and loves my mother so much that he, too, now only rarely gets out of bed—I can hardly take care of myself. It takes half the morning to organize a mug of hot tea.
What I can do is put the baby in the stroller and walk up to Eighth Street and go to Sedano’s to buy her 12 sticks of cheese, which she’ll eat all at once if I let her, then walk down to a head shop and spend $98 on a dropper bottle of what claims to be pure CBD. My mother is on diltiazem, donepezil, eliquis, metoprolol, spironolactone, furosemide, Trelegy, Embrace, and now ondansetron, for the nausea. Of course she’s refusing to eat.
On the walk back to the house we find a swing on a mahogany tree in the swale between the sidewalk and street. It’s a big-kid swing, and the baby asks to go “sideways” on it, which turns out to mean on her belly. She hangs her head upside down and shouts “higher” and “faster” as I give her a tentative push, then squeals with more laughter than I’ve ever heard from her as I push her high enough to make the swing arc over street. She is tired. She’s delirious. She loves this. She almost falls head-first onto the mahogany roots—I catch her by the arm—and does not want to stop. Back in the stroller, she looks out for lizards and butterflies and waves hello to the dogs and cats that we pass. It’s warm in Miami—68 degrees now, in the last week of January—and all I want to do is stay out here with her. I don’t want to go back to the house.
We’re in Philadelphia now. Back home, with childcare, I can actually help. I rent a hospital bed. I talk on the phone with her nurse, who shares his worry that my mother isn’t drinking enough, then I talk to her doctor about stopping the donepezil. I tell him we’ve started giving her CBD, which he seems to have no opinion on. If we want to stop the donepezil, fine. At this point her memory is less important than how she feels.
She’s doing better now. Eating again. Not back to her bookstore, but back to sitting up again, back to doing her favorite thing beside selling books, which is looking at cats on her phone.
The ibuprofen thing
Until last weekend’s trip to Miami the subject of this newsletter was going to be my own health. I disclose so much about my mother that I owe it to someone to disclose a little bit about myself. Briefly: We got COVID last summer. In September the kids started at a new school. The baby promptly came down with hand-foot-and-mouth disease, which then spread to her brother’s class, causing one of the preschoolers to miss two weeks with an ear infection. I got bronchitis. I flew down to Miami for my mother’s 80th birthday. We took her to Crandon Park, which has free beach wheelchairs and a wheelchair-accessible beach. I caught another respiratory virus and continued to cough. I lost weight without meaning to. On a trip to see my husband’s parents in Oregon, the baby came down with a fever, and I caught that virus, too. The baby recovered in a couple of days, but I kept getting fevers. I coughed so much I thought I’d broken a rib. I went to a Portland ER. As the doctor wrote me a note that turned out to be useless to give the airline if I wished not to fly, I understood how many people must come there seeking opioids, and did not ask for anything stronger than ibuprofen, which by then I was living on. I got laid off. Which was fine—I was too sick to keep phoning it in anyway. The pain in my ribs spread up to my shoulder. The fevers persisted for the next several weeks.
Last fall was the season of viral revenge. We were joyfully back, back at work (if we had work) and back at school and the gym and wherever else, and we were bobbing for apples or making out with each other or doing whatever it is—I guess breathing—that keeps us sharing our germs. I lost so much weight that my new doctor in Philadelphia ordered tests for diseases I’d never considered. I spent a weekend determined not to google, then googling, their terrible names. That Monday the doctor called to declare that I did not have any of them, and said that I was, most likely, only suffering from a series of the usual germs. She said, “We’ve been seeing a lot of this with parents right now.”
Parenting is a job for which sick days do not exist. You get sick but the kids still need to be fed and dressed every morning, hoisted into their car seats and strollers and lugged off to school, then brought home and be fed again, be played with, read to, breastfed, and bathed, and if you take enough ibuprofen, I’ve found, it’s survivable. I am still vastly privileged here: I have a partner, he has an income, he can feed and dress the kids and entertain them when I need to collapse.
I am better now. I still cough but I’m no longer sick. I’ve been gorging on protein shakes, ice cream, cream cheese, and peanut butter, and have managed to gain back half of the weight.
This is where the meaningful kicker goes. Caring for children is incredibly hard. This is why we care for our parents, not so much because we love them but because we are obligated. That obligation, I believe, mixed as it is with so much ambivalence, is force more important than love.
Matt broke a story last week about a senior FBI official under indictment for taking money from a Russian oligarch. Rudy Giuliani makes a cameo appearance! The whole thing is quite sordid, and not to be read by anyone whose parents don’t let them watch R-rated movies yet. (To my twelve-year-old niece, this means you.)
I wrote a thing! It went online this morning in the Guardian and has super cool art. It’s about citizens’ assemblies, aka sortition, which are possibly democracy’s only hope.
Read, read, read
For anyone subject to illness, aging, and death, the New York Times had a story last week that’s essential: What if You Could Go to the Hospital… at Home? (Gift link.) The take is obvious: “Americans have been trained for 100 years to think that the hospital is the best place to be, the safest place. . . . But we have strong evidence that the outcomes are actually better at home.” The practice isn’t widespread in Florida, where my mother lives, but it’s a model of what we’re hoping for. As of yesterday, she now has a hospital bed in her room.
For a completely different perspective on aging, I can’t recommend Leonora Carrington’s The Hearing Trumpet highly enough. A surrealist classic written in Mexico City in 1950 but not published until 1974, it follows the adventures of a nonagenarian who receives a hearing aid as a gift—and overhears that her family plans to put her in a home. As the narrator puts it: “People under seventy and over seven are very unreliable if they are not cats.”
Sleeping on an airplane as a 23-month-old lap infant took 1.5 laps. Luckily the lady sitting next to us was OK with being our additional half.