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“Igor's pet cemetery? Igor is out. Burying cat”: A memoir of living and dying

2020; Wiley; Volume: 18; Issue: 2 Linguagem: Inglês

10.1002/ppi.1526

1556-9195

Deborah A. Lee,

Memory, Trauma, and Commemoration

A man at work has blood trickling down his face. He walks slowly towards me, past me, eyes staring unseeing. He and his friend guffaw, because dress-up and play-acting for Halloween are GREAT FUN. I hear the ambulance but, of course, there has been no accident, and there was no accident. I called 999 only because his breathing was suddenly so frightening. I'd been saying that it was fine to go, darling; but choking is no way to die. “I'll stay with you on the phone until they're there.” We are an emergency, as if we can be saved. The consultant didn't even sit down; there was nothing he could do, no, nothing. Go home and deal with that, I guess. A perplexing conversation with a nurse about which days chemotherapy takes place—chemotherapy which won't be any use—and then we're back in the sweltering August heat. I'm wearing a blue poncho, he a white croquet shirt; there are Bakewell tarts in the bag. And we do deal with it, one way and another. “Is there anything for partners?” (Not carers, not yet.) “Leaflets, and you could have a referral to a clinical psychologist.” The GP gives a prescription for pills that make your bones break: “I want you to take one tonight.” Some people's timing sucks. A close friend promises to call and never does. I'm so angry that I ask for the car keys to be hidden: “How dare he do this to you?” “Hope it's not too stressful,” writes a therapist (a therapist!). At the worst time, a couple of people put the boot in and I retaliate: there's no way back for any of us. Some people are stars. Four friends will be loved forever. And we're stars. We do a complex dance of anticipatory grief and absolute disbelief, and we keep going. Our usual calls and responses: “I'm hungry!” “And I am the representative of the Czech Republic!” When he's not watching, I prepare the house for living and dying. And now it's August again. When the sirens are coming for you, they're deafening. (When they've been for you, they stay deafening.) I never saw the ambulance; I ran down and left the door open, ready. Five very young paramedics are in our bedroom, all wanting to help. It's so unlikely that someone so sharp until yesterday can't see me. “I want to get up”; “I want to get up.” But he can't. The leaflets tell you how to bulk up the sauce for the conventional dinners he'd never have eaten even when he was well; while the well-meaning bereavement counsellors' blogs chastise (what they see as) thinking cream buns will keep someone alive. The man in the cake shop (who doesn't know) jokes that I will be in again tomorrow. In time, Google searches start to offer “cachexia”; it's hidden under thick jumpers and trousers. We both strain to pull socks over swollen feet, to strap up weak ankles with wrongly sized bandages (the pharmacy hasn't got the right ones). It makes your head shrink. I can't get him what he wants today: morning hot chocolate with extra sugar, (a little bit of) jacket potato (with beans in a separate pot) from the deli for lunch, croquet scores to follow online, cricket on the radio, a chance to tease me for wanting to speak to the Occupational Therapist, for “always having something to say,” back and forth to and from the bathroom when he calls, gently steering him back to bed so that he doesn't quite notice what I'm doing, two new hot water bottles arranged just so each time, hair pulled from the bathroom sink, a scoop of ice cream from the sweet shop for afternoon tea. For a while, afterwards, I do my shopping on Sundays when everywhere but the supermarket is closed; I live on crackers, cheese, and tortilla chips. Writing instructions for a nurse, I realised the danger of our latest bathroom trips. That last climb up the stairs that could have killed both of us. If you've always been a bit melodramatic, it's easy to forget that you might not be able to make that final step. The commode, expected yesterday, didn't arrive (the occupational therapist made a formal complaint.) Shitting in a pad isn't for this man, no, never, even if I deal with it as he knows I will. He has his own mind, as they say. He narrowly misses “FUCK” being his last word. He′s going where I can't follow; I'm aware of standing back. They refuse to take away the paraphernalia of dying two days later. I'm “not a priority” as we didn't have a hospital bed. I have to hang up on a call centre operative, ring back and demand to speak to the manager. I'm asking them how they know the size of my house, what I can store there, if they know what it's like to STILL have the equipment after a death. “WELL DO YOU?” They didn't bring the commode, the commode that might have helped. I've eaten nothing, so while the paramedics (try to) work on his blood sugar, I work on mine. Iced coffee/chocolate. Then a quick text with a friend to say that we're in trouble. When you're a 24-hour carer you have to find ways of keeping going, no-one's coming to help (or if they are it's going to be over quickly). While you see death coming, you don't. It's weeks before I can stand to drink coffee. Cake makes me sick (but I don't lose any carer-weight). In fact, most things make me sick. I learn to stop saying: “I'm not Hungary.” I catch flu for the first time in years, breaking classes just in time to throw up. “Gradually his breathing will slow down, and then stop.” We're back there. He breathes in and out—strong, deep breaths—for hours. If he were speaking he'd be saying (as usual): “I'm not going anywhere, I'm going to turn the corner!” in his beautiful (he liked the word “mellifluous”) voice, the one for the small-hours politics phone-ins. While he was “Adam from Northampton,” I was always asleep. The lead paramedic stays, stays for hours. She's sitting there on the landing, on the pine dining chair the nurse hauled up there, the nurse who was going to come twice a week 10 pm–7 a.m. so I could have a sleep, the person for whom the medicine in the kitchen cupboard was suddenly not “anticipatory”. The medicine I carried back from the head-shaking pharmacist, that he brought home the prescription for (displeased), leaning heavily against the porch, hoisting his trousers up, out in his car (against my wishes, but he said he wouldn't drive if he really didn't feel capable). God, he hated that nurse, even the thought of her: “Maybe she can come another night, when I'm feeling better?” He′d been feeling sick, a new symptom, and I'd called for a doctor; she gave a prescription for nausea, asked if I had questions. They hadn't come when I'd rung previously, they'd questioned what I might want for this “brutal illness,” because there is nothing, don't I know that? Palliative care. A croquet friend rang and I'd said, while holding him up, “Can he call you back later?” Later, I fluffed the line “I am his partner” with an ominous “was”, feeling my cheeks burning with shame that I'd given the game away. If I had known it was his last night, I wouldn't have left his side. Not for a second. What use is sleep anyway? The pharmacist had advised against caffeine products, but I had them in mind. I was called at 2 a.m., for a bathroom visit. She wouldn't do it: “If you break your femur, I won't be able to keep you out of hospital.” But I am a soft touch, until it was clear that he couldn't stand. Someone asked me, later, if I thought she'd given him “too much” when he finally agreed, at 3 a.m., to take diamorphine. How can I say? I know I wish she'd woken me before she gave it to him, so we could have spoken properly before he died, so that my last words to him wouldn't have been the exhausted carer's “Be nice to the nurse or she might not come again.” She won't come again. A nurse comes (not, thank fuck, the one who asked him “So where are you on the journey from diagnosis to death?”, the one I escorted out of the house, advising him to be careful with his language, or the one who diagnosed death over the phone, and I only realised what she'd diagnosed when the “end of life” team marched in wearing plastic aprons, and started trying to talk over me). She administers more of that diamorphine, and then there's no more talking. I show her the photograph of him receiving his PhD, anxious but handsome (“Not too bad, thank you,” he would say, basking in his beauty). Wake up, darling, say something witty and wait and see if we'll get the joke, your eyes luminous with play. “What do you call a man working in a cake shop?” I'd asked people a few weeks ago. Only he knew the answer: “The boss”. A woman had come (“Is Dad upstairs?”) to sell us a device that you can press if you've fallen out of bed. I was pleased with the thought of it, in case I had rushed to the shop. She was very earnest and we both leaned in earnestly for: “Do you have any questions?” “Can I eat it? It looks like a sweet.” We both laughed in surprise; and as time goes on I notice that nobody at all is funny, and my face has taken on a new shape. The man who was to install the key cupboard to go with the device rang me the evening he died. “We've decided not to go ahead with that,” I said. “Right-oh,” said the man pleasantly. We. I hear a lot of We. People whose partners I've never met are part of the We who is “sorry” for me. We are a We, and You Are Not. I use his graduation photo for my second social media announcement of the day. Someone I quite like later tells me that he and his friends (some of whom I don't like) tried to guess his age from tweets. How much of a tragedy is this for him/them? Is this a tragedy that might visit us? (Psst, you can die at any age.) His friend from South Africa wrote later to say he was “timeless”; yes, he was, but his time came. He's dead now, at 1.45 p.m. on Monday 12th August 2019, and people are still “liking” a Tweet from the morning, where I say he's “seriously ill, send positive thoughts.” I've used a photo of him from before my time that I found in the bureau while the paramedics were upstairs. He′s at a croquet match he's won; there's the trophy; he's looking laid back, sated, all is well in his world. It feels bad not to tell them. But maybe they're right; maybe he's not dead. He loves sleeping, almost as much as he loves television, almost as much as he loves me (ranking the three, choosing between two, regular activities: “What's on the television?!”) He′s still here in the room, tucked up under the duvet, sweep's brushes caressing his cheeks. He′s still here in the room for a couple of hours as the GP on-call doesn't call. I'm clenching my teeth. I don't stop clenching my teeth. I haven't stopped clenching my teeth. I've faced dying and death and have to Keep. Facing. It. I haven't left his side since it wasn't anaemia, and I'm not going to now. When another GP does call, after the surgery is told the delay is unacceptable, he congratulates me on staying, seeing it through, as “you could have left.” I don't understand—we were together 20 years (where would I have gone?). I don't argue; you can't really, with your partner's dead body still in the room, can you? You can afterwards, of course, but you don't get anywhere, and you look ungrateful, deranged. And so began life after death, where this relationship, for some, didn't really happen, or didn't mean so much. A disenfranchised love, it has no piece of paper to certify it, not even the shared utility bills/mortgage statements that, apparently, prove that you were “committed,” “exclusive”—"a couple” even. I get asked who is the executor, told I'm not family, not the next of kin, that I don't hold power of attorney (all wrong). The neighbours are unpleasant, not realising that I am their new neighbour. It's not so long since the newsagent told him: “I don't like to think of you alone there, I know you've got that girl looking after you, but …” “That's my partner.” Pre-cancer, we had tended to be at my house. “Have you come to look after him?” “I'm his partner.” The only nice neighbour, after a particularly bad week of shouting/blaring horns at my decorators for parking in a public road, says that maybe they're worried about “whether an ambulance could pass through” … It's a bit early for that one. It's October, not August, and perhaps I'm no longer recently bereaved, if I ever was bereaved at all, so perhaps you can now shout at my decorators, the ones it takes all I have to let in. He hated the smell of paint. No one ever asked me if I was his wife while he was dying (I had worn a ring for hospital appointments, just in case). On the final night, I was asked my view on resuscitation. The cynic in me says it didn't matter then because I was doing all the work. They say end of life care is free, but it's not true. What they mean is that, if you need to spend a few days in a hospice (if there is one) when you're almost dead, then you don't pay, or if you need a carer to run in/out a couple of times a day, yes you can have that. A life ending takes longer than that, merits more than that. The company who deliver pre-packaged frozen desserts (he liked a jam sponge and custard) ring, as they haven't heard from us, and—chuckling—they hope everything's ok. While she chats away, digging herself in deeper, I have time to try out a few ways to tell her. I'm factual and kind, but she's mortified; her day is over. Mostly it's me who is mortified. Bureaucracy takes me from who I'd begun to think I was, someone who, if she could cope with the “journey from diagnosis to death,” could cope with, could do, ANYTHING, to someone Googling how many diazepam it would, you know, take. The registrar of births and deaths is in a nearby town that he didn't like (I'd never been there). It's a freezing August day; and while fruitlessly trying to find a shop in which to buy a jumper, I nearly ring him to say he's right, it's the pits, there are no actual shops. It's the first days of the relentless, exhausting “Why haven't I rung him?” loop. The sign-in panel isn't working and the receptionist looks me up and down: “Have you come to register a birth or a death?” I register a single man's death. The registrar is nice. It's pouring with rain so I sit down in the empty reception, but it's clear that now my business is complete I'm not welcome. An ashen-faced couple wait where I once sat; they've definitely come to register a death; what do I look like? I go through everything with one company, then ring back a couple of days later with a question, only to discover that they didn't record anything, nothing at all, and I have to tell them again that he has died. He has to die again. I complain on social media and an operative chastises me for posting personal data (which I am not). The same day I am trolled—not the worst, but ungenerous, unkind. After threatening texts that I don't believe, the phone is cut off, because they've updated their records to show my contact details but they're trying to take a payment from his closed account. It's all my fault, apparently, because I didn't register the death quickly enough. They talk me through the days between when he died and when I called. “We're sorry for your loss, but you should have … .” I must pay a reconnection fee if I want phone/internet again. After a 40-minute wait (twice, I was cut off the first time), and a long conversation, a worker finally realises what I'm saying: I didn't know when the payment date was. The gas/electricity company insist I can't cancel a policy because I've already started paying it, but I haven't, he did. They won't believe me (one instance, I suppose, where we were seen as a couple) and insist I have to pay now for a full year. “I'M PAYING YOU NOTHING MORE, DO YOU HEAR?” When I ring back and tell her manager that he just died, she's audibly shocked and authorises a £10 apology payment. I've got a few of those and I hate them. The tax situation is completely sorted through Tell Us Once, a service whereby you can inform a range of government agencies in England and Wales of a death. And then a letter arrives to my address, addressed to him, saying that he (not me) needs to do “one last” self-assessment, and needs to inform them if his “‘circumstances change in future.” If you're not dead in the future? Do a self-assessment for the year that you died? The automated voice asks why I'm ringing: “It's about a death,” I say. “A debt. You're ringing about a debt?” “A DEATH.” “You're ringing to pay a debt?” A real person tells me to ignore the letter, it's come out in error. “This would push some people over the edge,” I observe mildly, but I can't get an answer to how, why, the letter was even generated let alone sent; case closed, bye. Our solicitor is fabulous. The bank is nothing but helpful. It has a bereavement service. “Have you got a bereavement service?” “A what? Oh, no, we just deal with that here.” “We're sorry for your loss … .” “We're sorry for your loss … .” “We're sorry for your loss … .” Polly wanna cracker. “I DON'T CARE if you're sorry for my loss. You don't care. We both know you're just following a script … .” “He can't fill in a form because he's DEAD. Do you want me to go down the churchyard and ask him?” Sometimes I want to shock, because I am now beyond shocked. I have to bite my tongue, choose my battles; anger is physically painful. Once, just once, pushed way too far, I completely lose it; I'm threatened that the recorded call will be “listened to.” (Shit!) The same close friend wasn't there a second time; I'm neither angry nor sad—this isn't about me, and others have taken his place: I make two unexpected close friends in the aftermath. One comes to help me choose a cat, well two cats actually; they're older but with lots of life; the other asks after them (and me) from the Pyramids. The bureaucracy isn't over; but sequestration is (sort of) and I have to deal with more and more people who are acquaintances. “Have you got friends you can talk to?” (which means they think you might not have; you might be a bit of a loser in more than one way). “Hope you have friends you can talk to” (which means they don't care if you have or not but at least they've said something “supportive.” This one is stable-mates with: “Hope you're getting some support!”). Someone writes using the phrase “at this time in your life.” Her text gets deleted; it's not the only one. FUCK OFF (something I don't say). One person told me, with absolute conviction, that it's my job to tell people what I might need from them. Ah yes, another job for me, let's add that to the list shall we? The non-bereaved don't have to think ahead, the bereaved do. Personally, I'd sooner stick pins in my eyes. It takes me weeks to say that I can't do something, that I just can't, and I can't look the person in the eye that I told that to. Some people are never sorry for my loss, thanks for that; some hear about it weeks, months, later and then they're sorry, red-faced and awkward, a bit pitying—so it's never just October, it's also always potentially August. There are happenings that he would have enjoyed: “so she said … and I said …! And then they all, one by one, marched past the window carrying boxes and staring...” Things just fade away unexplored. A new landscape, not pleasant to look at. What I'm finding I enjoy (even more than before) is taking photographs of the local countryside, the area he chose, that I now live in, on my own. I get unexpectedly good at it, and am offered a paid gig! Anyway, it's Halloween; people are dressing up as the dead, changing their social media profile pictures to grey-faced corpses. I wonder if they know how your lips freeze and stay frozen when you kiss a dead person goodbye? What it's like when the undertaker asks if this is the last time you'll view the body (the second and last, when you've brought a photo where he's very much alive and—by coincidence—wearing the same tie as you chose for him now he's very much dead), because if so he's going to “seal up the coffin.” A panic attack on the bus, if you must know. When the doors closed. There's a class to teach whether I'm traumatised or not. People are told that #ItsOkNotToBeOk, but that's untrue. Once you've reported a death a few times you know in your bones that your feelings don't matter. Keep going, ride the waves of anxiety, try to look normal. And if anybody can't keep going, or can't just be better after some tea and a chat, it's “oh, complicated grief,” the preserve of “mental health services,” time to let “professionals” take over, not our job, nothing we can do, no, nothing. “Mental health,” “physical health,” neither reliably compassionate. Offered clinical psychologists, drugs, and leaflets, I'll always take the leaflets and run. The leaflets speak to me as if I'm thick, but they do tell me how to get a dead person off junk mailing lists. My personal therapy is self-funded, established, and cognisant of complexity: I don't have to answer to anyone for it. The class is for first years, who weren't even alive when our eyes met at a university interview … . There are three jobs on offer and I'm pitching for ALL of them. Interview number 13, and if this doesn't work, I am never applying for another job in a university. I've finally realised that my soul is being destroyed by rejection. We're sociologists but no one's told me we don't live in a meritocracy. I've done the “what I can offer to the Department” presentation (whatever you want, for fuck's sake). A man who has been asking very sticky questions sits back sated. Jesus, finally. And then he comes into view, looking for all the world as if he has fallen in love. (Oh, and the title of this piece? One of his favourite ways to answer the phone. Always funny. You need timing to say it. He had timing. Well, usually.) I would like to thank my first readers—Rose Barbour, Clare Shaw, Jonathan Wyatt, Tess Wyatt, Manu Bazzano and Gottfried Heuer. Deborah A. Lee is Senior Lecturer in Sociology at Nottingham Trent University, and a person-centred existentially informed psychotherapist. She is guest editor of this Special Issue of Psychotherapy and Politics International, and also associate editor and co-editor for reviews at the journal. With interests in sexual violence, psychotherapy training, critiques of psychopathology, and challenging the orthodoxy of case studies particularly via heuristic and autoethnographic research and arts-based, unusual presentations, Deborah has recently written for the British Journal of Guidance and Counselling; Asylum, Self & Society; Psychotherapy and Politics International; and the Journal of Gender-Based Violence. With Emma Palmer, she is co-editor of the new book #MeToo: counsellors and psychotherapists speak about sexual violence and abuse (PCCS Books, 2020). Deborah is a member of the Ethics Committee of the United Kingdom Council for Psychotherapy (UKCP).