All about my mother: ‘It’s amazing what the living expect of the dying'

People who weren’t there like to say that my mother died at home surrounded by loving family. This is technically true, though it was just my brother and me and he was looking at Facebook and I was reading a profile of Hillary Clinton in the December 2009 issue of Vogue. A hospice nurse had been over a few hours earlier and said my mother was “very imminent”. She was breathing in that slow, irregular way that signals that the end is near. Strangely, I hadn’t noticed it despite listening for the past several weeks (months earlier, when her death sentence had been officially handed down but she was still very much alive, my mother had casually mentioned that she’d noticed this breathing pattern in herself and that I should be prepared to walk into the room and find her gone at any moment) but apparently it was here now and when I reached the third paragraph of the second page of the Hillary Clinton article (this remains imprinted on my brain; I can still see the wrap of the words as my eye scanned the column; I can still see the Annie Leibovitz photo on the previous page) I heard her gasp. Then nothing more.

“Mom?” I called out.

My brother got off the couch and called her name, too. Then I said, “Is that it?”

That was it. I found suddenly that I wasn’t quite sure how to identify a dead person – it didn’t occur to me in that moment that not breathing was a sure sign – so I picked up her hand. It was turning from red to purple to blue. I’d read about this in the death books – Final Gifts, Nearing Death Awareness, The Needs of the Dying – that I’d devoured over the last few months. Medically speaking, I’d found these books to be extremely accurate about how things progressed, but some put a lot of emphasis on birds landing on windowsills at the moment of death or people opening their eyes at the last minute and making amends or saying something profound. We weren’t that kind of family, though, and I harboured no such expectations. I had been slightly worried that when my mother actually died I’d be more grief-stricken than I’d anticipated, that I’d faint or lose my breath or at least finally unleash the tears that I’d been unable to shed all this time. I thought that in my impatience to get through the agonising end stages I’d surely get my comeuppance in the form of sneaky, shocking anguish. Perhaps I would rage at the gods, regret all that had gone unsaid, pull an article of clothing from her closet and hold it close, taking her in. But none of that happened. She had been suffering for months and I was as relieved – for both of us – as I’d planned to be. I picked her hand up a few more times over the next two hours while we waited for another hospice worker to come over and fill out the final paperwork and then for the men from the funeral home to take her away. I did this less for the sake of holding it than to make sure she still had no pulse. She’d chosen cremation but had said once that she feared being burned alive.

A woman worked for us during the last two months of my mother’s illness. She must have found us appalling. A week or so before my mother died, my brother and I started packing up the apartment right in front of her. I know this sounds grotesque, but we were haemorrhaging money and had to do whatever we could to stem the flow. It was late December and her lease was up on the first of the new year. If she died before then and we didn’t have the place cleared out, we’d not only have to renew the lease and pay another month of sizeable rent, but we’d also have to then go on to break the lease and lose her sizeable security deposit. She was unconscious, so “right in front of ” is a matter of interpretation, but her hospital bed was in the living room and we had to crouch behind it to remove books from shelves. My mother had a set of George Kovacs table lamps that I liked very much, and every time I look at them in my own house now, three time zones away in a living room she’s never seen, I think about how I had to reach around her withering body to unplug them, after which I packed them into their original boxes, which I’d found deep in her coat closet, walked them over to the UPS store, and mailed them off to California.

“You have to start sometime,” said Vera, the woman who worked for us. I’m almost certain she said this because she had no idea what to say but felt some obligation to validate our behaviour since we were paying her $17 per hour. Vera was a professional end-of-life home healthcare aide, referred to us by the hospice. She was originally from Trinidad and spent a lot of time listening to Christmas music on headphones. I assumed she’d known every kind of family and witnessed every iteration of grief, though later I learned she’d worked for only one other terminal patient in New York, a man who was dying of something other than cancer and whose daughter apparently cried all the time and threw herself on his empty hospital bed after he was taken away. Our family, as my mother might have said, had “a significantly different style”.

My mother died the day after Christmas. She was 67 years old. She lived on the Upper West Side of Manhattan, where she’d moved three years earlier after retiring from her job as a high school theatre teacher and director in New Jersey. She had an exquisitely decorated one-bedroom apartment that she couldn’t really afford, though, true to her nature, she had a number of business and creative projects in the works that she trusted would change her financial equation. These included theatre coaching for Broadway hopefuls as well as potentially mounting a play she’d written (her first literary endeavour) that she told me she felt could hit the big time if only she got it into the right hands. But in January 2009, after months of complaining of pain in her side and being told by her doctor it was probably a pulled muscle, she was found to have gallbladder cancer. This sounds like the kind of thing you could easily cure by just removing the gallbladder, which everyone knows is a nonessential organ, but it turns out the disease is not only extremely rare but barely treatable. Not that they weren’t going to try.

The week of my mother’s diagnosis, her own mother died, aged 91. This wasn’t as calamitous as you might think. “I don’t really feel anything,” my mother said when she told me the news. “I lost her so long ago.” Technically she was referring to the dementia my grandmother had suffered for several years but we both knew that the real loss existed from the very beginning. My grandmother was tyrannical in her childishness. She was stubborn, self-centred, and often seemingly wilfully illogical. Though she didn’t overtly mistreat my mother, I’m fairly certain that my mother saw her as a neglecter. Not in the sense of failing to provide food and shelter but in the sense that is knowable only to the neglectee, and even then maybe never entirely. I’m tempted to say that my grandmother damaged my mother on an almost cellular level. But then again maybe some of my mother’s damage was her own. She freely admitted that from the age of 14 until she left her parents’ house after college, she stopped speaking almost entirely when she was at home. In the outside world, she won piano competitions and twirled the baton, but inside the house she offered nothing more than an occasional mumble. I think the idea was that her mother was so unwilling to listen to her that she was no longer going to waste her breath.

As a very young child I’d taken the requisite delight in my grandparents; they had candy dishes and cuckoo clocks, plus they lived far away and I saw them only once a year at the most. But as I grew older and my grandfather died and my mother lost what little buffer had once stood between her and her adversary, the more I came to see the pathology that swarmed around my grandmother like bees. She was a mean little girl in a sweet old woman’s body; she spoke about people behind their backs in ghastly ways, sometimes loudly just seconds after they’d left the room. She spoke in a permanent whine, sometimes practically in baby talk. My mother, whose life’s mission was to be regarded as serious and sophisticated, recoiled from this as though it were a physical assault. She often said she believed her mother had an “intellectual disability”. For my mother’s entire life, her mother was less a mother than splintered bits of shrapnel she carried around in her body, sharp, rusty debris that threatened to puncture an organ if she turned a certain way.

We didn’t need to have my grandmother’s funeral right away, my mother said. It would require travel to southern Illinois, a ragged, rural place out of which my grandmother had seldom set foot and from which my mother, despite having left at 23, never felt she could totally escape. Like me, my brother lived in Los Angeles, though unlike me, it was hard for him to get away from work and no one expected him to just drop everything to attend his grandmother’s funeral. My father, though sort of in the picture in that he also lived in Manhattan and was still married to my mother, was not in any picture that would have required him to make this trip. My parents had been separated for nearly 20 years, beginning around the time my mother began to self-identify as a theatre person and potential single person, though they’d never bothered to divorce. The rest of us, though, would go the following month, when my brother could request a few days off and after my mother was recovered from her surgery and had gotten in a round or two of chemotherapy. It would turn out to be the last trip she ever took. At the memorial service, she addressed the small crowd of mostly eighty and ninetysomethings about how far she’d moved beyond southern Illinois but how she still appreciated it as a good place to have grown up. This was entirely untrue, since as far back as I can remember she’d blamed a large portion of her troubles on her hometown as well as on her mother. Also untrue was the notion, which my mother had let grow in her hometown some years earlier and never bothered to tamp down, that she was single-handedly responsible for the career of a famous actor who had gone to the high school where she’d taught. In truth, the actor had dropped out before she began working there, but my brother and I nodded and went along with it.

In our family, being good children did not have to do with table manners or doing well in school but with going along with my mother’s various ideas about herself and the rest of us. Mostly they amounted to white lies, little exaggerations that only made us look petty if we called her out on them so we usually didn’t. Or at least we didn’t any more. There was a period of at least 15 years, from approximately age 18 to age 34, when every interaction I had with my mother entailed some attempt on my part to cut through what I perceived as a set of intolerable affectations. The way I saw it, she had a way of talking about things as though she wasn’t really interested in them but rather imitating the kind of person who was. What I always felt was that she simply didn’t know how to be. She reminded me a bit of the kind of college student who’s constantly trying on new personalities, who’s a radical feminist one day and a party girl the next, who goes vegan for a month and doesn’t let anyone forget it, who comes back from a semester in Europe with a foreign accent. Not that she actually was or did any of these things. It was more that she always felt to me like an outline of a person, a pen-and-ink drawing with nothing coloured in. Sometimes I got the feeling she sort of knew this about herself but was powerless to do anything about it. She wanted to be a connoisseur of things, an expert. She wanted to believe she was an intellectual. Once, among a group of semi-strangers, I heard her refer to herself as an academic. Later, when I asked her about it, she told me she appreciated college towns and academic-type people and therefore was one herself. When I asked her what she thought an intellectual was, she said it was someone who “valued education” and preferred reading to sports.

What was my problem? Why couldn’t I just let it go, laugh it off, chalk it up to quirkiness rather than grant it status as a legitimate source of my barely contained rage? For starters, her need for praise was insatiable. And around the time of her emancipation from her old self, when she moved out of the house and seemingly took up permanent residence in the high school theatre, that need redoubled. We never gave her any credit, she said. We always put her down, didn’t take her seriously. And now that she “felt really good” about herself (for dressing better, for going blonde, for losing weight, for having a career), we couldn’t bring ourselves to be happy for her. That she was completely right about all of this only added to my rage. We couldn’t give her any credit, at least not enough. She just wanted it too badly. She’d ask for it outright. In heated moments, she’d practically order me to praise her as though I were a child being told to clean my room. “It would be nice if just once you’d just say, ‘Hey, Mom, you’re really good at what you do,’” she’d tell me. “If you’d say, ‘You do that so very well.’”

If you asked me what my central grievance with my mother was, I would tell you that I had a hard time not seeing her as a fraud. I would tell you that her transformation, at around the age of 45, from a slightly frumpy, slightly depressed, slightly angry but mostly unassuming wife, mother, and occasional private piano teacher into a flashy, imperious, hyperbolic theatre person had ignited in her a phoniness that I was allergic to on every level. I might try to explain how the theatre in question was the one at my very high school, a place she’d essentially followed me to from the day I matriculated and then proceeded to use as the training ground and later backdrop for her new self. I might throw in the fact that she was deeply concerned with what kind of person I was in high school because it would surely be a direct reflection of the kind of person she was.

Thanks to my own need to please others and draw praise, my life in high school became a performance in response to my mother’s performance. When I saw her approaching in the hall I’d grab a friend by the elbow and throw my head back in laughter so she’d perceive me as being popular and bubbly. When I did poorly on a test I followed her advice and didn’t let on to anyone. Meanwhile she copied my clothes, my hair, my taste in jewellery, so much so that I started borrowing her things (they were exaggerated versions of my things: skirts that were a little too short, blazers with massive shoulder pads, dangling, art deco–inspired earrings) because it seemed easier than trying to pull together my own stuff. In the years to come, my mother would become the go-to teacher for the sexually confused and the suddenly pregnant. But in the nascent stages of her coolness, I wasn’t allowed out past 10 o’clock. She found it embarrassing that I had a boyfriend. This was beneath me, an unserious pursuit, especially since he wasn’t involved in the arts. She didn’t want to be known as someone whose daughter would have a boyfriend in high school. She liked when I waited for her at the end of the day so she could drive me home, even (perhaps especially) if it meant my having to pace around the theatre while she finished up her business.

Kids whose parents are teachers in their schools are members of a special club. They have to build invisible fences. They have to learn to appear to take it in earnest when their classmates tell them how cool the parent is. They have to learn not to take it personally when they aren’t privy to the pot smoking in the boiler room. I never considered myself a member of that club. In those years, my mother seemed to have just slipped through the door as I walked through it on the first day of school. It was never entirely clear what she was doing. She had no theatre experience; her background was in music. It made sense that she was volunteering as a piano accompanist, playing in the pit orchestra, coaching singers. It made less sense that she always seemed to be there even after the musicians went home. Hanging out with the set builders, feigning disapproval when kids banged out pop songs instead of the assigned show tunes on the piano, giving more and more orders until everyone just assumed she was in charge.

In all the years that came before, when I was three and six and 10 and 14, my mother had cautioned me not to be dramatic, not to over-accessorise, not to be “the kind of kid who’s always on”. “That doesn’t show a lot of substance,” she’d say. Substance was one of her all-time most used words; in both of her incarnations she used it liberally, though her powers of appraisal were questionable. A man we knew who was brilliantly insightful, well-read and well spoken – a true intellectual – came across to her as lacking in substance because he told hilarious stories about what a screwup he’d been in college. She believed Barbara Walters showed substance on The View when she hushed the other ladies up and spoke her mind.

In the last 20 years of my mother’s life, I think I can count on one hand the times when she did not have a delicate, artisan-woven scarf tossed around her neck. In her entire lifetime I don’t think I ever once heard her laugh out loud.

There was no more clothes sharing after I left for college. During that time my mother moved out of our house and into her own place and I came home as infrequently as possible, staying with my father when I did. Her career in full throttle, she was usually too busy for family time anyway. She was out late rehearsing summer stock productions of Sweeney Todd. She had close friends whose names I didn’t know and would never learn. Still, my assignment from there on out was clear. For the rest of her life, what I was supposed to do was celebrate how little my mother resembled her own mother. I was supposed to accept that her old personality had been nothing more than a manifestation of various sources of oppression (her mother, her husband, the legacy of 1950s southern Illinois) and that what we had on our hands now (the fan club of gay men, the dramatic hand gestures, the unsettling way she seemed to have taken on the preening, clucking qualities of a teenage girl, almost as if to make up for skipping over that phase the first time) was the real deal.

I could not, however, manage to do those things. Even more cruelly, I couldn’t even fake it. She had a habit of picking up the phone in her office inside the high school theatre and letting the receiver hang in the air for several seconds as she continued whatever in-person conversation she was already having. When she did this to me I usually just hung up. On the occasions when I visited the theatre, I smiled silently when her students gushed about her superfabulousness. Several times I told her flat out that if I, as a kid (who had been instructed at the age of six to answer the phone, “Hello, this is Meghan Daum,” and then “professionally” field the call to the appropriate parent), had for even one second exhibited the traits of her new personality, her for mer personality would have sent me to my room for three months.

“I wish you’d been raised by the new me,” she said more than once.

The last time I saw my grandmother was almost 10 years before she died. I visited her with my mother. Arriving at her apartment, which was in a sterile two-story complex near the main highway of the town she’d never left, my mother and I were immediately taken into her bedroom and shown her latest collection of teddy bears. They were dressed in clothing that said things like “God Bless America” and “I Hate Fridays”. My grandmother’s speech had the thick, Ozarks-influenced twang endemic to southern Illinois – a “hillbilly” accent, my mother always called it – and as she cooed over the bears and pronounced this one “real purdy” and another one “cute as can be”, I saw my mother’s hands curling into tight, livid little fists. They were the same fists I made whenever I heard the outgoing message on my mother’s answering machine, which for the nearly 20 years she lived alone had somehow rubbed me as the most over-articulated and high-handed version of “leave a message after the tone” in the history of human speech.

(My mother told me that when she was a girl she secretly unwrapped her Christmas presents ahead of time and then rewrapped them and placed them back under the tree. The reason for this was that she didn’t trust herself to react appropriately to them. She had to plan in advance what she was going to say.)

My grandmother’s infractions went deeper than stuffed animals, of course; and while I might be able to cite my mother’s central grievance – that her mother didn’t recognise her accomplishments, didn’t appreciate the person she was, didn’t, in fact, see her at all – I’d be a fool to think I had any real grasp of the terrain of their relationship. During that last visit, while my mother was describing in detail the complexities of her latest theatre production, my grandmother interrupted her mid-sentence and asked, “Honey, do you ever wish you’d been a career gal?”

You’d think something like that maps out the terrain pretty well – “Jesus Christ, what do you think she’s been talking about?” I snapped as my mother fumed silently – but no one can ever truly read that map, maybe especially not even those occupying its territories. A lot of people knew my grandmother to be as nice as pie, just as a lot of people knew my mother as an incredibly talented theatre arts administrator and overall fun person to be around. Neither of those observations was objectively wrong, they just weren’t the whole story. But there again, what can you say to that? In the history of the world, a whole story has never been told. At my grandmother’s burial site, my mother broke away from the crowd and stood alone at the headstone looking mournful and pensive. I recognised my cue and walked over and put my arm around her, knowing this would create a picture she wanted people to see and would therefore console her. Not that anyone could see the real source of our grief, which was not my grandmother’s absence but the limited time my mother now had to enjoy that absence. My mother would die nine months later, and what most people don’t know is that of all the sad things about this fact, the saddest by far is that she did not have one day on this earth in which she was both healthy and free of her mother. All her life she’d waited to be relieved of the burden of being unseen, only to have that relief perfectly timed with her own death sentence.

My father understood this cruel twist, though at times he seemed to understand little else. He did not, at least to my knowledge, bother to look up gallbladder cancer on the internet when it first entered our family lexicon and see that the average life expectancy after diagnosis is five months and that fewer than 2% of patients make it to the five-year mark. Since he lived a 20-minute cab ride away and since their relationship, for all its animus, still extended to things like hospital visits and accompaniment to chemotherapy appointments, he did do his share of emptying buckets when she vomited and showing up at the emergency room when she had a crisis of pain or hydration. Our family was not one to shirk its duties, even if we did not always perform them warmly.

Curiously, though, my father did not seem particularly affected when, after eight months of aggressive chemotherapy at a major cancer centre that prided itself on beating the odds, the news was delivered that the treatment was no longer working – “longer” referring to the three months beyond the average my mother had survived. She would likely die within half a year’s time (it turned out to be two months). There were many ways my mother could have chosen to tell my father she was dying and there were many ways he could have chosen to respond. Their choices, as my mother lay in her hospital bed and I sat nearby in my usual visitor’s chair, playing around on my laptop computer as usual, were these:

“The timeline has been moved up,” my mother said. “I see,” said my father.

“So they’re talking months at this point.”

“Hmm. Okay.”

“So what else is going on?” my mother finally asked when it was clear he wasn’t going to say anything more.

“Well, actually, I have done something to my foot,” my father said. “I somehow stumbled when I got out of bed and stepped down on it the wrong way. And it’s been killing me.”

My mother said maybe he should have it looked at.

“He’s happy,” she hissed after my father left the hospital on his aching foot. I told her that wasn’t true, that he was scared. I said this not because I believed it but because it seemed like the kind of thing you should say.

I could try to go into the reasons why my parents never got divorced but I suspect that would fall into the category of trying to explain fully how things were between my mother and my grandmother or even my mother and myself, and that would be overreaching, moot, a fool’s errand. I could try to explain all the ways that my father is a good person who behaved the way he did partly because he lacked the “emotional vocabulary” to face the situation and partly be cause my mother, who’d hired a van and moved out of the house on a humid summer day in the early ’90s, could never make up her mind about what she wanted from him. For years, she’d summoned him when she needed him – to mark holidays, to suggest to out-of-town guests that their marriage was not exactly over but simply had “a different style” – and shunned him pretty much the rest of the time. When she got sick, a few ferociously loyal friends from her old personality came in from New Jersey whenever they could, though no one would have held it against them if they hadn’t. But the gay man posse, not to mention the friends my mother had claimed to have made since moving into the city (“a costume designer who has many inroads to theatre producers”, “a very interesting museum curator”, “so many former students who live here now but still want my advice”), were largely absent and so it was that she was forced to call on my father for help and he obliged, though not as graciously as she would have liked. When I hopped on a red-eye flight at a moment’s notice because it was clear she needed to go to the famous cancer centre’s urgent care unit but didn’t want my father to take her, my presence was tacitly understood as a polarising force. My mother felt grateful and vindicated. My father felt snubbed.

“You didn’t have to come out here, you know,” he told me as we loitered around the vending machines. “I’ve taken her before. I’m capable of it.”

He wasn’t capable of it. He didn’t know the code. Or, if he did, he refused to abide by it. I can’t blame him. The code had to do with not just showing up but actually being there, which was no longer really a part of their social contract. My mother didn’t want my father to be her husband but she still wanted him to impersonate one when the occasion arose. All around us were family members of other patients, people who sobbed in the hallways or set up camp at bedsides or emerged from the elevators carrying piles of blankets and needlepoint pillows and framed photos from home. One afternoon, en route to the visitors’ kitchenette to get coffee, I passed a man clutching the door handle of a utility closet and crying. He looked to be in his sixties. He looked weathered and hammered down, as if he’d spent his life doing manual labour. I assumed he was crying over his wife, though I had no idea. No one was crying like that for my mother. Occasionally I’d overhear family members of other patients using words like gift and blessing, words they seemed to be able to use without apologising for sounding sentimental. Our family had a significantly different style. We weren’t bringing anything up in the elevator except our own lunch. Occasionally I brought up flowers or a book I knew she’d never read, which is to say I understood the code enough to fake it.

The best line in this whole saga goes to my mother’s oncologist, who broke the bad news like this:

“Our hope for this treatment was that it would give you more time. Some of that time has now passed.”

One day some months earlier I had entertained a passing fantasy that my mother would get hit by a bus. The oncologist had just delivered the news that the chemotherapy was working. This came as a surprise, since an earlier therapy had failed and this was plan B, which I’d assumed stood even less chance. My mother was elated and shifted at once into one of her more dramatic gears, calling friends and telling them she was on the road to recovery, that it appeared she was a special case, that the doctors “were so pleased”. She was so happy that day that she actually ventured outside the apartment on her own to buy a frappuccino and I remember thinking to myself how great it would be if she were hit by, say, the M7 express on Columbus Avenue and killed instantly and painlessly. I knew from the internet that chemotherapy for gallbladder cancer works (when it works at all) for about one cycle before the body develops immunity and the disease resumes the process of ravaging it. She would never have a better day than this day. She would never again walk down the street feeling as hopeful and relieved and exceptional as she had when she strode out of the doctor’s office that morning, past the throngs of chemo patients and their families sprawled out in the lounge like stranded airline passengers, past the ever-friendly lobby personnel (trained, no doubt, to greet each visitor as if it were the last greeting they’d ever receive), and on to the street, where for the first time in weeks she actually hailed a cab herself and announced her desire for a frappuccino.

That night she drank half a vodka gimlet to celebrate and regretted it for the next several days. She vomited from the chemo through the rest of the summer until she landed back in the hospital with severe intestinal and bowel trouble. It was September. Autumn, New York’s most flattering season, was preparing to make its entrance. I had just got engaged to my longtime boyfriend, which had made my mother very happy.

“Our recommendation would be to transfer to another level of care,” the oncologist said.

Hearing this, I moved my chair closer and grabbed my mother’s hand under the blanket. I did this because I felt that if we were in a play this would surely be part of the stage directions. I was also afraid the doctor would judge me if I didn’t. If I just sat there with my arms crossed against my chest, as I was inclined to, the doctor would make a note in the file suggesting that I might not be capable of offering sufficient support to the patient.

I retrieved her hand from under the blanket and squeezed it in my own. She did not reciprocate. She didn’t pull away, but there was enough awkwardness and ambivalence coming from both sides that it was not unlike being on a date at the movies and trying to hold hands with someone who’d rather not. I think we were both relieved when I let go. The doctor said she would most likely make it through Christmas, so we should feel free to go ahead with any holiday plans.

For three nights in a row, my mother made me stay in her hospital room. She was dealing with incontinence (if you learn nothing else from reading this, learn that gastrointestinal cancer is not the kind of cancer to get; get any other kind, even lung, even brain, but don’t get carcinoma of the gut) and it had grown so severe that she was up every few minutes and sometimes didn’t make it to the bathroom in time. The people who came to clean her up were terse and tired and spoke mostly in heavy Caribbean accents. A few times she lay there in her own shit before they could get there. I know this because I was in the sleeping chair on the other side of the room, listening to it all while pretending to be asleep.

I tell myself now, as I told myself then, that if things had gotten really bad, if she had cried out in pain or called my name or if a serious amount of time had passed before a staff member came, I’d have got up and helped her. I tell myself that I closed my eyes to protect her dignity, that if she could step back from the situation she’d never want me wiping her shit, that there are some daughters in the world who would do this for their mothers but that we had never been that kind of mother and daughter and trying to pretend to be so now would only make both of us feel inexpressibly and inerasably violated. I tell myself I did it out of compassion but the truth is I also did it, as I had done so many other things where she was concerned, out of rage. I was enraged at her for her lifetime of neediness that she’d disguised as a million other things – independence, fabulousness, superiority – and demanded praise for. I was enraged at how this bottomless longing encircled her like barbed wire and that now that she genuinely and rightfully needed me I just couldn’t deliver. I was enraged that what I was doing struck me as so unspeakably cowardly that when I was finally allowed to return to her apartment and order Chinese food and drink from the wine stash she hadn’t touched in 10 months I wouldn’t even be able to call my fiance in Los Angeles and say what I’d done.

Later, when the horror of those nights had been eclipsed by other horrors – patient proxy forms, calls to an attorney, wrenching phone conversations with her friends – my mother was discharged from the hospital and my father and I took her back to her apartment in a taxi. I’d been in taxis countless times with my mother since her ordeal had begun, mostly taking her to or from a chemo session, and it seemed that invariably the driver was playing a talk radio station sponsored heavily by cancer treatment centres. This day was no exception. “I got my life back,” a voice earnestly intoned. “So say goodbye to cancer and hello to a front-row seat at your granddaughter’s wedding.” My mother would have no grandchildren. Neither my brother nor I had ever shown an interest in reproducing. I had a dog, which she sometimes called her granddog. The three of us sat in silence through this advertisement and several others – for weight loss, for acne scar removal, for adjustable mattresses. It was a cold, gusty day and tree branches scraped the car while we waited at red lights.

Back at the apartment, my father stood around awkwardly for a while, and finally left.

“Would you do all this for him?” my mother asked me. “Would you take care of him?”

One thing I did for my mother that I would not have done for my father was get married. That is to say, I got married pretty much right then and there, less than six weeks after getting engaged, so she could be in attendance. We spent three weeks discussing the wedding and five days actually arranging for it, which in retrospect I think is the perfect amount of time to plan a wedding. During the time we were discussing it my mother became fixated on hosting the event in her apartment and inviting her friends and associates. Due to limited space, this would exclude many of my and my fiance’s friends and associates. She also made it clear she did not want children in her apartment for fear of their knocking over her pottery or damaging her art. My fiance made it clear he didn’t want to get married in a dying woman’s apartment. He did not make this clear to the dying woman herself but to me during the countless hours I sat with my phone in the lobby of the famous cancer centre’s hospital trying to figure out how to handle the situation of a dying woman (a woman dying brutally and prematurely) who effectively wanted to turn her only daughter’s wedding into a funeral she could orchestrate and attend herself. Meanwhile my mother, who’d heretofore thought my fiance walked not only on water but on some magical blend of Evian, San Pellegrino, and electrolyte-enhanced Smartwater, began to say things like “Well, now I’m seeing a different side of him.” When I pointed out to her that he’d like the wedding to include his sister’s small children, she told me he had to realise he couldn’t always get what he wanted.

The discussion period ended when my mother realised she was too sick to orchestrate anything. She told me to wait and get married after she was gone – “It happens all the time,” she said, crying. This was one of our more authentic conversations because it so happened that I authentically wanted her there. My father, as far as I could tell, regarded marriage as a fatuous institution. In moments, he seemed to regard my wedding plans as yet another complication that had been thrown into the mix of our crisis. My mother was the only person on earth for whom my getting married really meant something. She was the only one for whom it wasn’t a take it or leave it kind of thing. I felt like it wouldn’t count if she weren’t there. It was the first thing I’d needed her for in a long time and the last thing I’d need her for from there on out. So on a Sunday in late October we rounded up every one we could and walked from my mother’s apartment to the park across the street, where we were married by a close friend who’d been ordained online the day before. Photos taken by another close friend later suggested my mother was in an extraordinary amount of pain. Wearing a wig, being humiliatingly pushed along in a wheelchair by my brother (with whom, a month later, at Thanksgiving, I would trade earsplitting obscenities as she lay in the next room after vomiting at the dinner table), she is wincing in every shot. In some, she’s not only wincing but also staring into space. After seeming relatively alert during the pre-show (champagne at her apartment, compliments on the decor), she appeared to unravel throughout the ceremony, shifting from barely living to officially dying in the time it took me to slip from lack of official attachment into wedlock. The next day, the four members of the hospice team came to the apartment to introduce themselves. When they asked her to describe her level of pain on a scale from one to 10 – one being no pain, 10 being unbearable – she told them eight. When we asked if she was really sure about that she said she wasn’t sure. She said she had never in her life been able to answer that sort of question.

A few times I saw Vera kneeling by my mother praying. I ducked away and pretended not to see but I appreciated the gesture nonetheless. Bedside praying wasn’t something I’d ever done myself, though when my mother was still cogent I’d told her a secret I’ve told maybe two other humans ever. I’d told her that I’d prayed most nights since I was nine years old (prompted by extreme guilt over a schoolyard incident in which I’d caused another child to burst into tears) and found it a useful tool for, if not speaking to a higher power per se, articulating that for which I was most grateful and that for which I most hoped (“Thank you for letting me pass the French test; please get me through math class tomorrow”). I added that I usually tried to send out a special prayer to some one who probably needed it (the girl I’d inadvertently made cry, the stray animals of the world), at least if I didn’t fall asleep first.

Given our belief system (atheist) and overall family dynamic (cynical, avoidant of confrontation yet judgmental behind people’s backs), this was an extremely vulnerable thing to share. It didn’t entirely pay off. “That sounds like a nice ritual,” my mother said before going back to staring at the television (in an echo of her own mother that would have horrified her, she never changed the channel and watched anything that came on: the news, the weather, The Price Is Right). Other times, when she seemed particularly aware of the irreversibility of her situation, I’d turn off the TV and try to get philosophical. I told her that as presumptuous as it might be to believe in an afterlife it was equally presumptuous to deny the possibility of one. Then, at the risk of mockery or at least disapproval, I said that I felt like reincarnation was at least something worth thinking about, that it felt clear to me that souls existed and that you could just tell from knowing people that some souls had been around longer than others. Plus, dogs obviously had souls, so there you had it.

“Maybe you’ll have a whole new life and it’ll be even better than this one,” I said.

“But I don’t want to be a baby again,” she said. Her voice sounded genuinely worried.

“Maybe you won’t have to be a baby again,” I told her. “Maybe you’ll be a bird. You’ll fly around and look at everything from up high.”

“I don’t want to be a bird,” she said.

It’s amazing what the living expect of the dying. We expect wisdom, insight, bursts of clarity that are then reported back to the undying in the urgent staccato of a telegram: I have the answer. Stop. They’re waiting for me. Stop. Everyone who died before. Stop. And they look great. Stop. We expect them to reminisce over photos, to accept apologies and to make them, to be sad, to be angry, to be grateful. We expect them to clear our consciences, to confirm our fantasies. We expect them to get excited about the idea of being a bird.

My mother’s official date of death was 26 December but the day she actually left was 5 December. This was the day her confusion morphed into unremitting delirium, the day the present tense fell away and her world became a collage of memory and imagination, a surrealist canvas through which reality seeped in only briefly at the corners. Suddenly she seemed no longer in pain. She was mobile, even spry, and given to popping out of bed as if she’d forgotten to take care of some piece of essential business. When I walked into her bedroom that morning, a painting had been removed from the wall and clothes she hadn’t worn in months were strewn across the floor. She’d thrown up, of course, and the green-brown vomit was dribbling down her pyjamas and on to the bed. Whereas the day before she’d have been flustered and embarrassed, she now seemed unfazed, unapologetic, even ecstatic. She wanted her purse, she told me. She needed to put some things in it. I recognised this impulse from my death books. Dying people often pack suitcases and retrieve their coats from the closet because they’re overcome with the idea that they’re going somewhere. My mother had a cane she used for the rare occasions when she got up – a tasteful wooden thing; she’d refused the walker sent over from the medical supply company – and now she had it in bed with her and was waving it around so it threatened to knock over the lamp and yet more pictures. When I leaned over the bed to wipe up the vomit, she put the end of the cane on my head and began rubbing my hair. She was smiling a crazy smile, her tongue hanging from her mouth like an animal’s. The gesture struck me as something an ape might do if you were sitting across from it trying to make it play nicely with blocks, a helpless molestation, a reaching out from behind the bars of a cage. When I managed to grab the cane she resisted for a moment before letting it go.

“Meghan,” she said solemnly. Her voice over the last few weeks had grown faint, her speech slurred and monotone. It was the sound of fog rolling in over a life.

“What, Mom?” I chirped. She could hear just fine but I’d taken to talking loudly, as if she were an old person who was going deaf. It drove her crazy. She was always shushing me.

“We need to figure something out here.” “What’s that?”

“I need to ask you something.”

“What?”

“How did we get kidnapped?”

The dying have their own version of dementia. They drift not only between the real and the not real, the past and the present, but also the living and the dead – and not just the dead they appear to be seeing but the dead the living want to believe they’re seeing. It’s like they’re living in six dimensions, at least two of which exist solely for the benefit of the people standing around watching and listening to them. (“Folks with dementia say the darndest things!”) “Is that Grandpa you’re talking to?” we ask when they murmur at an empty chair. “Is there someone up there? Tell me!” we plead when they lift their arms in the air and curl their hands over invisible shapes. Science says the grasping gestures are related to changes in brain chemicals as the body shuts down, but my death books said it’s because dying people reach up to greet those who died before them. A cat visited my mother regularly in her final weeks, at one point jumping on her bed and lying at the foot of it like every cat we had when I was growing up. In the beginning, I’d laughed and told her there was no cat, but with the dying you soon learn the folly of raining on a parade, especially one that might produce that holy grail of darndest things: insight into the afterlife.

“What kind of cat is it?” I asked, finally. “Is it orange?” “Black,” she rasped.

We’d had two orange cats, both named Magnificat and called Niffy for short. Niffy One and Niffy Two, both of which were friendly and affectionate. In between we’d also had a black tomcat that was an asshole.

My mother softened in senility. She developed a childlike quality she probably hadn’t had even as an actual child. Her head seemed perennially cocked to one side, her eyes wide, and with her hair now growing back in soft white tufts she looked like a perfect white frosted truffle. For the first time in years, she was without affectation. There was no trace of the drama queen. As feathery and ephemeral as she was, she seemed like a real person rather than someone impersonating her idea of a person. Though I never would have said it, she looked almost exactly like her mother, who, despite her fleshiness and thick glasses and suspected intellectual disability, everyone, even my mother herself, had recognised as being very pretty. For the first time in years, I didn’t merely love her. I actually liked her.

“Do you know why you’re here?” the hospice nurse asked her gently one day (unlike me, she knew not to shout). This was turning out to be a day of particularly acute agitation. There was a lot of picking at the sheets and furious murmuring. I’d long given up my philosophical lectures. My new best friend was Haldol, which was supposed to keep her calm and which I administered under her tongue through a syringe. There was a perverse and momentary pleasure in this act; it made me feel like I was a stern, efficient nurse, like someone who knew what she was doing.

Her words, barely intelligible, were like soft formations carved from her teeth and lips. Her breath could scarcely carry them an inch.

“Because,” she said, “my mother was here.”

This is an edited essay from The Unspeakable: And Other Subjects of Discussion by Meghan Daum, published by Farrar, Straus & Giroux

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