The way she is now

It took me​ a long time to accept my mother’s brain was failing. I knew the usual pathways of her thought, the jumps she would make from this to that; these jumps were new. She’d always made her mind ours too. When we were teaching my little brother, Richard, to talk, to say ‘ta’ for a proffered rusk, my mother would stop me and my other brother, George, from speaking. We all knew what he was supposed to say, but if Richard was ever going to learn, we had to stay silent. The brains of mother and child aren’t separate. If he wanted it, he would have to say so. She would incline her head, lean over and say ‘yes?’ as if it wasn’t clear what he wanted, as if she hadn’t been giving him what he needed without him asking for it for his whole life.

I noticed that she was getting flustered more easily: going through the double border control at the Gare du Nord threw her, the getting out and the putting away of her passport – she had been the keeper of all passports, all birth certificates short and long. Sending me a document I’d left on the desktop of the family computer flummoxed her. I was 25 and she was 52: I idly concurred with an item on Woman’s Hour about the menopausal brain. I helped her when she seemed to need it: it wasn’t taxing, and I’d been doing the ironing, the hoovering, the chopping of vegetables alongside her my whole life. She was the mother and I was perpetually in training for something, if not motherhood itself quite yet then a certain sort of feminine competence that I secretly disdained as retrograde while mostly going along with it.

It was Richard who said we ought to do something. She’d gone on her own to visit him in Berlin, where he was living, and had had trouble getting her U-bahn ticket from the machine. But then who doesn’t have trouble with ticket machines in foreign countries? They’d gone to the Germany-Poland border, finding something appealing in setting foot in two countries, and as they walked they played a game they’d apparently played on the way to primary school every morning, of times-table questions they would pass back and forth. (I envied him in this: as the last child, he played many such games with her, which I glimpsed when I was home from university.) I remember thinking it was cruel to set Mum maths problems and then say there was something wrong when she couldn’t answer them. But I’d never heard about this particular game, and didn’t know it was normal for them, and abnormal when she giggled and answered with ‘I don’t know.’

I didn’t go with her to meet any of the doctors. Not the GP who referred her for the scan that showed blood wasn’t getting to her brain properly. (So there could be an operation?) Not the Austrian specialist who broke the news to her, whom my mother cried in front of, told she was ashamed of letting her family down, and then begged to see the following year ‘just for fun’. Not the neuroscientists in Queen Square in Bloomsbury who were interested in her because she was under sixty but without genetic markers for Alzheimer’s disease. Mum was 57 when she was diagnosed in 2013; the prognosis is three to nine years. I wanted to know whether I might get Alzheimer’s early too, but they say she doesn’t have the early onset gene. I don’t go and see the doctors now because I don’t see the point in talking to the doctors. They can do nothing for her. There is a drug that improves symptoms at the beginning, but otherwise there is nothing.

Most of what we know about Alzheimer’s comes from cutting up the brains of the dead: brains of people who have died from Alzheimer’s are visibly shrunken, and the deep folds of the brain lobes have filled out so that the surface is smoother, more ball-like. If you slice the brain and look at it through a microscope, you can see that plaques have built up around neurons, destroying them, and tangles of protein have accumulated uncontrollably inside cells. Drugs to clear away the plaques and tangles don’t seem to be able to improve the symptoms of the disease. Many other conditions have been put forward as possible causes: high blood pressure, lack of vitamin D, head injuries, depression, obesity, an unbalanced microbiome. It goes on. On the one hand, my mother was never very slim after she had three children, and she got a whiplash injury in a car crash in the mid-1990s, which was followed by depression; on the other hand, she had low blood pressure, was hardly ever ill, walked outside most days, read thrillers by the yard, knew French, could sew a fully lined and corseted ball gown, and drove and cooked and argued and organised all three of us through our childhoods. Sometimes the only cause that makes sense to me is my carelessness as a daughter: the times I drove across the country to visit a friend and didn’t bother to call to say I’d got there safely; the moment on my wedding day when she gave me a garter for luck in the loos and I didn’t wait for her so we could go back out to the wedding together. There are a thousand things like this and many days when I think them as good a reason as any to take a mother from a daughter. When her illness didn’t feel like my punishment, it felt, still feels, like a sword hanging over my future happiness.

The diagnosis did and didn’t seem to make sense to her. ‘My life is in fits and starts,’ she told me one day, and I felt too that my understanding of what was happening to her was in fits and starts. One of the last emails I got from Mum was in 2011, when she was 55, an apology for not finishing an embroidered cushion she’d wanted to make for me. ‘It was so difficult to remember how to do things last year,’ she wrote. ‘I feel so ashamed for starting things for you, and not finishing them off … This are my very personal feelings throughout last year, which was a bitch, look after them for me.’ We talked less often on the phone as words became harder for her to find: I would call and if Dad wasn’t there to mediate she would say things like ‘Can you ring back when there’s sunshine?’ We went shopping for clothes, and she chose an uncharacteristic cardigan embellished with multicoloured costume jewels, but when she went to pay, there was only a supermarket loyalty card in her purse. She stopped cutting her fingernails. Her bullets of red lipstick, always worn to a double-sided curve for being applied two, three, four times a day, were now stuck in their lids, mashed and jagged. She spent time arranging her jewellery boxes and handbags, mixing up diamonds from her married life and costume pieces from when she was a girl, or putting on and taking off a papier mâché bangle. If the thing had come from one of us children, or from my Dad – no matter if it was a golden-cased lipstick or supermarket slippers – it was ‘something precious’ and went in with the diamonds. She liked zips; she liked knotting and unknotting the belt of her trenchcoat; she would grab bluebells by the handful and bring them in from the garden. One day when none of her bras could be found and we started to wonder what the new French cleaner liked to do in his spare time, we found that she had put her best bra in a red handbag a friend had recently given her and put both under the bed. She wanted to go to the loo very often when we were out, and she needed help with unpredictable taps, hand dryers and flush handles.

When I was with her, there was always something happening. It would be days later, in the middle of my life in London, that I would find myself crying. I started to dread the day she wouldn’t recognise me. ‘Janet! Joannet! Janetta!’ she would call out, not quite finding on her tongue the name she had given me. Who am I if my own mother doesn’t recognise me, I wondered. Who was I anyway? I began to question everything: did I want to have this sort of life, be in this sort of marriage, even be this sort of writer? Did I want this sort of mother? I went home less often. I spent my time writing and rewriting the non-fiction book about working lives I’d taken on the year she was diagnosed. When the book was done, I went out a lot, and those evenings were many-Negronied. I got scared of her: she began having jerks which meant she would spill her coffee mid-cup; she got unpredictably angry and could not be soothed; she would cry and no one would know why. I didn’t enjoy my impatience in moments like these. I didn’t enjoy seeing her in confusion. ‘Why is it that anyone likes me?’ I remember her once crying out. I couldn’t see the effort she was making to talk, only that I couldn’t speak to her in the way I was used to. And there were moments when I experienced this loss as a kind of freedom. Freedom from criticism – she had once asked me if a university boyfriend had left me because I didn’t wear lipstick – as well as from certain pressures: she’d cried with joy when I told her I was getting married; she was hotly expecting a grandchild. (One of my thoughts after discovering she was so ill was that I should have the child I wasn’t sure I was up to having, while she could still be a grandmother.) But I knew the freedom to disappoint her was a cowardly one, because it was unearned; I wouldn’t have to defy her. When I decided I did want a different life, one that might have been unthinkable if she had been more present in mine, I worried that she wouldn’t still love me, changed as I was. Sitting on the foot of her bed and not sure how much she would be able to understand, I told her I was going to leave the man I married and wasn’t going to have a baby with him, and she said: ‘Your book’s your baby.’ It was as if her getting ill made me forget who she was, and what sort of mother she had always been. I realised, or remembered, that she had always wanted my happiness, even if it should take a shape unfamiliar to her.

No one my age had a parent with Alzheimer’s, but I did have a friend whose older partner had died of it. She told me something I didn’t believe at the time: that I could have another relationship with my mother, and that it would be something I would be grateful for in the future. She urged me to visit her more; so did my father. I had thrown my own life in London into chaos, but I started to go home to Dover every weekend. I am not proud that it took me so long to return to my mother the care that she had unthinkingly, unstintingly, given me – but then I didn’t know what caring for her would bring me until I started to do it. I visited in the furloughs of depression that followed my divorce, when I couldn’t see the point in getting up, but there I had to, because Dad was out and she couldn’t get up without me. I helped her in the shower, singing bad renditions of Madonna, Michael Jackson and Wham! songs when she got flustered with drying herself and putting on face cream and brushing her teeth and pulling up her tights. (Approximate versions of 1980s pop aren’t prescribed for Alzheimer’s, but music very much is.) I found new ways of being with her. In the summer, I read the Ischia scenes from the Ferrante novels to her as she dozed on a lounger in our sunny back garden. And I would read Camus and Beauvoir in French out loud to her too. (One of my first memories of my mother’s gloriousness is her arguing with a hotel manager in French one summer holiday.) We swung side by side on the swings in the children’s playground, her worrying that we would get caught. I put a bib around her neck, cut up her food and gave her a spoon instead of a fork. In the evening, Dad showed me how to put her in pyjamas, brush her teeth, give her her tablets, and sit with her while she fell asleep. She liked childish humour, and all of my Dad’s bad jokes – ‘You’re a princess,’ he’d say as he helped her on with her boots, ‘you get everything done for you’ – and banging the table to Nina Simone’s ‘My Baby Just Cares for Me.’

When we sat down as a family to watch a movie during Christmas 2016 and a parental advisory message came on the screen, my brothers asked her if it was OK if there was swearing. Her reply: ‘Fuck you!’ Before a walk that same Christmas, as I was helping her with her coat, narrating what I was doing as mothers do to children – ‘your son George bought you this dress’ – she said: ‘Oh, that’s why he likes me so much! That’s why he gives clothes!’ and I realised she might not know who I was. I don’t know why, in fact it now seems to me cruel, but on the walk I turned it into a game. Who am I, Mum? Am I your mum, Trixie? Or am I Richard’s girlfriend, Phu? ‘You’re kind and you’re pretty,’ she answered, and I laughed. In the two years since she said that, I’ve often thought it good enough for me. Even when she doesn’t know who I am I tell myself: she likes me. And I remind myself that a mother is always a mystery; she has lived so much of her life before you were even born.

The things I did at weekends were the things my father did every day. He had worked long nights and long days when we were children, and now he learned to take care of the house, the family and his wife. He and my mother had worked together in their own print business and he rearranged things so he could be at home more often. She couldn’t be left alone for long: if she had a brain-jerk while on the stairs she could fall (and did); she could walk out of the front door and not know how to get back (and did); unless food was put in front of her she’d forget to eat (and did). She qualified for the Personal Independence Payment of £117.05 a week but it didn’t cover what she needed – we all chipped in so that Dad could pay for help with the house and garden and concentrate on her care. On Mondays, she went to a group for people with Alzheimer’s run by a local charity, where they talked, made lunch and did puzzles together. Mum was the youngest there and the most ill; they kept her there beyond the point they and she could cope with it. I took her there one morning, and within an hour they had called me back to pick her up. When I arrived, she swiped at me with perfect angry fluency: ‘You shouldn’t have done that!’ She meant I shouldn’t have left her.

Dad advertised for help in the local newsagent: Kent County Council had agreed to pay for twenty hours of help a week but it was up to Dad to become an employer, get insurance, liaise with the council and find the carers. Carers left when Mum had angry episodes. The Alzheimer’s drugs, the doctors thought, had reached the end of their usefulness, and though we had resisted giving her the heavy-duty psychiatric medication prescribed to dull her symptoms (anti-spasmodics for the jerks, tranquillisers for rage and to help her sleep, anti-depressants for the crying), we now tried them. In the last six months things have started to become slightly easier, as Mum has qualified for NHS continuing healthcare, which funds one-to-one care at home from 9 a.m. to 5 p.m. on weekdays. And we have found carers from whom we learn. There is Jackie, who has been with us almost from the beginning. There is Zowie, who has kept horses all her life, and has taught me about reading body language now that Mum can’t tell us how she feels or what she wants. Lin is patient when Mum is angry or upset or just pissed off. And they deal with the soiled sheets when Dad and I can’t bear it any longer. Our family home is now a care home.

The family itself has changed too: Mum used to be the hub, and my father, my brothers and I were the spokes. Now it’s more like a cloud, or network: my brothers and I worry about my Dad (we take him to the football, and encourage him to go to his Labour Party meetings, and take him on holidays); my Dad worries about us; my brothers worry about me. Richard married his girlfriend and they had a son, Josh, in September, and the network rearranged again: in the unfairness of Mum not being able to be the grandmother she wanted to be, we knit around the lack, bringing memories of our childhoods to the way we look after Josh, as well as what we’ve learned from caring for her.

It is such a small, commonplace sentence, used of far too many things, but it is the one that most often comes to mind: I miss her. I missed her the day I engaged a solicitor to conduct my divorce; I missed her when I moved into a new flat on my own; I missed her when Josh was born. I most miss talking to her: she would have been deeply into Love Island; only a mother will listen to someone wonder about what denier tights she should really be buying this unseasonably cold spring. I have trouble letting go of things she chose for me, like the set of candy pink towels she sent me to university with, and I have a special new unwished-for role as Cassandra when friends moan to me about their mothers. But I also miss her the way she is now; I like to spend time with her. Our minds are more separate than they have ever been; even a request to raise her arms so that I can help her on with a T-shirt won’t be reliably received. She spends a lot of her day walking back and forth between a curtain in the kitchen and a curtain in the sitting room, where she will rearrange the sofa cushions, sofa covers and curtain itself again and again into an order that looks like disorder. Her walking does not seem purposeful to us, but it must seem so to her: if you get in her way, whether to say hello, bring her a drink or tell her someone has arrived, she walks straight past you to get to the other curtain. I join in the game; I put the sofa cushions back so that she can disarrange them again. On other days, she’ll sleep for hours. She has lost a great deal of weight, so we spoon dinners into her. She will nearly bite my fingers to get at an eclair. And there are flashes of her old self still. We watched Four Weddings and a Funeral together recently, and she giggled when Rowan Atkinson called on ‘the father, the son and the holy goat’. (That line is funny.) Last Mothers’ Day, just as I was leaving for London, she called out ‘Joanna!’ – which I hadn’t heard her say for months, maybe years. John Bayley wrote of the ‘lion face’ people with the disease can have, and this Christmas, in her gold paper crown, Mum had it: unfathomable yet majestic. Her laugh hasn’t changed; her smile hasn’t changed. Her smile is best when I go to get her up in the morning, and she’s forgotten I was there the night before.

When I was seven or eight, Mum nearly died one July in the South of France. She had gone out to sea on her own in a yellow and blue inflatable dinghy, and as my brother George and I played on the hot sand, my dad noticed that the boat had drifted out, so far out that he started to panic and went to find someone who could help him get her back. I remember seeing a yellow dot on the horizon, very far away, and in my memory I was calm. Maybe I didn’t believe she wouldn’t come back; maybe I was keeping my head while the adults were losing theirs; maybe I accepted fate. But he did get her back, and the next memory I have of that day is eating a coupe pêche melba as big as my head. From that point on, I had nightmares of losing my mother. I stand on the shore again, uncalm now, watching the losses mount.