My mother’s health took a turn for the worse back in April. I keep meaning to write about it, but it’s not easy to tell the truth about what happened without scaring the shit out of people. Or exploiting it, or myself, or composing a text wall that contains every detail but still fails to get at the truth. So here goes.
About six months ago my mother’s caregiver started to notice that she wasn’t looking so good. She has COPD and dementia, so she never exactly looks great, but it was starting to get even less so. Frequently out of breath, tired, that kind of thing. So she made an appointment with her doctor, sent me some texts that I read as I was wrangling the children while my husband made dinner, or while I was putting them in the bath while he washed the dishes (our one-year-old keeps taking craps in the bathwater, which gives our three-year-old yet another reason to resist taking a bath, and yes I’m aware that I am massively privileged here in, like, seventeen different ways). Anyway, the messages. Her caregiver texted me the next morning, from the doctor’s office. I was in a Zoom with my boss.
Hi, we are here at Dr. Fuentes
Sending her to the hospital her oxygen went from 90 to 88
It’s nice to think of a hospital as a place where sick people go to get well. We know it’s not true, but what we don’t know is how untrue it often is. Especially for an older person. We entered stage one: Tests ordered, then a scan, then hours and hours speculating about the results. It might be this, it’s not that. Stage two, diagnosis: Heart failure. Whatever victory is attained by receiving what feels like an accurate and exact explanation for her situation, along with any attendant hopes that this knowledge will yield treatments that might make her get better, are slowly but inexorably nullified by the hours that pass during which she does not improve. In some ways, she did: She’s on oxygen now. She’s awake. She’s also up all night, because the hospital is full, then another night. I start getting calls from a nurse. It might seem obvious that a hospital is not a place where the patients are permitted to smoke. It might also seem obvious that a patient’s repeated attempts to light a cigarette while she’s hooked up to oxygen will incite near-violence from the people charged with ensuring, among other things, that the place doesn’t explode. The first nurse told me that my mother had to calm down. My mother calmed down. Then she tried to smoke again. Then she called the police. Apparently the police actually came. I will not repeat what the second nurse who called said to me, only that it involved medical threats, and that my pleas to at least give her some non-flammable form of nicotine (she’s been a smoker since she was a teen) were not well received. Short version: Don’t smoke. There are a lot of substances that one can sneak in a hospital, but a lit cigarette is not one of them. It took 72 hours to get a doctor to prescribe subdermal nicotine, by which point we’d discovered that one of her neighbors, an outstanding person who’s been through some detox himself, was more than happy to go into that hospital and give her a patch. But all of this came too late. After that much time without a cigarette, my mother had received a classification of “difficult,” possibly “combative,” which comes with a requirement of overnight supervision, which caused the one thing she needed—to get the hell out of there—to be impossible. After five days in a hospital, confined to a bed, my mother was no longer able to walk. She needed to be discharged to rehab. But no rehab facility in the county, it turned out, was willing to accept a “difficult” patient. So she had to stay in the hospital until she was no longer “difficult.” Which my brother and I were not about to allow.
My brother was the one who drove her home. He lives in Miami. A nurse helped him lift her into his car. I couldn’t handle the part where he got her out of his car, alone, and up the steps to her house (I had to put down the phone), but somehow he managed to do it. He’d been up since four in the morning—he works a job that has hours I do not understand—and stayed up all night, keeping an eye on our mother while she compulsively looked for her cigarettes, which we’d decided to hide. Since she hadn’t smoked in five days, and because my brother and I were still deluding ourselves into thinking that she would be well again, we thought that maybe now was the time we would finally get her to quit. This seemed easier to deal with than the much larger problem that we were now looking at: That my mother, now no longer able to walk, and not able to remember, from moment to moment, that this is the case, could not be left alone.
So that was April. She’s OK. She can walk some, when she’s supervised, which is 24 hours a day. The caregiver we’d hired to keep track of her 30 hours a week now works 60. The neighbor who brought my mother a nicotine patch in the hospital has since taken a class for an HHA certificate, and stays with her at night. The combined amount that we pay for this help is $2,300 a week.
The main things here are, one, that my mother is home. In her own house, she can still be herself. She’s not hooked up to anything, not subject to threats if she does not “behave,” and she can smoke as much as she damn well wants. (She can also eat what she wants, which seems to be mainly dessert.) Her caregivers respect her, and look out for her, and are both able to put up with the behavior that turns me back into an angry teenager withing five minutes of seeing her, which as far as I’m concerned makes them saints. (My feelings about my mother are much like my three-year-old’s feelings for me. This week he me that he wanted to cut me in half and leave me in jail forever because I left him for five minutes to go feed his sister. The circle of life.)
Main thing number two is that she has the money to pay for this. After five months of bullshit, the good people of John Hancock Financial have finally started reimbursing her claims.
Main thing number three is that we don’t want her to go to a hospital ever again. Her mother was a nurse. She’s never liked nurses. Last year, after an X-ray turned up a foreboding mass, she declined her doctor’s recommendation to go in for a scan because, as she put it, she owes her good health thus far to “staying away from that shit.” So no scan. She still makes it out to her bookstore on occasion. She still has her cats and her dog. Her favorite thing to do is hang out with her neighbor and watch TV.
If you’re looking for a moral here, I’ve got a few of them. Don’t smoke. Don’t get sick. Don’t get old. And above all, don’t run out of money. Hope you live in country that has a meaningful social safety net and a functioning and humane healthcare industry if you do.
Resources: Better Health While Aging, by Leslie Kernisan. Anne Helen Petersen on infrastructures of care. And the phone number at Instacart for customers sixty and up.
Refunds for everyone
I’ve gone almost a year without writing much, so I sent refunds to everyone who’d bought a subscription last year, then had it automatically renew. Substack’s default is to do that, and I’m sorry about that. I think it’s fixed now.
Also, excuses: I started a new job back in January. The kids are young. Moving into a house—and fixing it up as you live there—does not in fact take a year. It is endless. This week I’m pulling up paving stones in the yard. (Yesterday our one-year-old helped with this task by collecting all the rocks we turned up under the pavers and putting them into a pot. Then she got bored with this, dumped them out, and ate some sand.)
Matt news
Yesterday Matt had a new story up about an FBI agent under grand jury investigation. It’s not paywalled, so have at it. If you’re one of his relatives and want to be sure you haven’t missed any of his recent writings for Insider, you can find it all here.
Also: We’ve succeeded in acquiring a mattress that satisfies both of us. We did not, as it happens, purchase it from a manager of a mattress store in New Jersey who moonlights as a seller of other mattresses, at substantial discount, from a storage shed, but we thought about it. That guy seems like a pretty good deal.
Read, read, read
Padgett Powell has a new book of essays out, Indigo, that appears to be wholly nonfiction but might be somewhat made up. It reads like his fiction, so it’s hard to say. If you’ve never had a chance to hang out with him and listen to stories from his personal life—mainly about arm wrestling, hawks, chickens, and snakes—you can get the next best thing by reading this. All of those stories are true.
I finally read Candy House, Jennifer Egan’s long-awaited sequel to A Visit from the Goon Squad, which won a Pulitzer Prize, and have been obsessed. So obsessed that I re-read Goon Squad with a spiral-bound notebook, writing down the name of every character as they appear, then read Candy House for a second time to see where everyone matches up. It’s been thrilling. (This is what I do with my time.) I’m not going to say that either one is a perfect book (for a perfect book by Jennifer Egan, read Look At Me), but I will say that they’re nothing short of incredible, and a lot of fun, and also I can’t stop thinking about human bodies with USB ports inside them, or a quick trip through 1970s San Francisco that gives Rachel Kushner a run for her money, and can only wish the Miami in the early 90s was as cool of a place.
My other obsession has been native plants. I’ve been read Doug Tallamy—starting with his recent hit, Bringing Nature Home—which is why I’m now pulling up paving stones. Tallamay’s writing is geared toward suburbanites with expansive back yards, whom he argues are North America’s last hope, but the same principles hold for even those of us with only space for container gardens. What I didn’t know, and what has me obsessed now, is this: We think of bird food as berries and seeds. We don’t think about insects, which some 90 percent of birds rely on for raising their young. (I’d assumed baby birds could eat whatever their parents barfed.) If you want more birds in the world, you need caterpillars. Most species of caterpillars can live only on native plants.
My mother was also obsessed with native plants in her 40s, and maintained a butterfly garden for years. So I guess what I’m doing now is unavoidable, some Freudian thing, but whatever. We ordered a blueberry bush. The weeds in our yard—which are snakeroot—have started to bloom.
A picture
What we do in the yard.
All good things to you and yours.