Image: © Charles Eastwood
My dad’s got a gold tooth.
My dad’s got a broken nose.
My dad can do a hane goshi on you.
I boasted about him, trying to extend his protection to the playground.
‘What’s a hanny goshy?’ asked the boys who picked on me. We didn’t have a TV and Mum dressed my sisters and me in checked shirts and dungarees.
I told them, my dad knows judo, he can hook his leg around yours and throw you onto the ground in a flash.
My dad’s got a cauliflower ear.
‘Can you hear out of that ear, Syd?’
‘What?’
Four similar faces turned to him, laughing. Mum said we were variations on a theme. The theme being Syd. Neither of them could explain why we called him Syd and not Dad, but it suited him.
He told us terrible jokes just to hear us groan. He said that when he was a boy he had a cat which froze to death so he stuck its tail into the ground and used it as a bootscraper, and other stories we didn’t know whether to believe.
‘The secret of judo is like your eyebrows,’ he said, making us wait. ‘Invisible but very close.’ He drove a white van stacked with mats and belts and took us to the club he managed at weekends, piling up crash mats in the dojo for us to jump on. He taught us the two taps of surrender, and when he laughed and said, I’m going to rough you up and tickled us and we screamed, if we tapped him twice he would stop, straightaway.
He tied luggage to the roof rack with judo belts and drove in the slow lane at a steady 60 miles an hour when we went to Wales or Norfolk on holiday. He made us do crash practice in the days before seatbelts. ‘One, two, three…’ he counted, and when he said ‘Crash!’ my sisters, brother and I flung ourselves down into the footwells, a giggling tangle of limbs squashed against the backs of his and Mum’s seats. When we travelled by train or ferry or coach, he’d calculate, out loud, how he would rescue us in the case of a collision, or overturning, or sinking.
He prowled the house every evening, checking the window locks, making sure he’d pulled the bolt on the front door. He gave us advice, which was sometimes confusing. Only carry a weapon if you’re prepared to have it used against you. Hearing the crash and tinkle of a neighbour’s car window one night, he pulled on his tattered dressing gown and ran with an old fencing sword onto the street, scaring the burglar off.
When my siblings and I were older and off on holiday by ourselves, he made sure he knew the nearest airport so he’d be ready to jump on a plane if we got into trouble. Nightclubs were seedy places full of dodgy characters who might drug and abduct us, he told us when we started exploring the nightlife of south London, but he didn’t stop us going out. As we walked back from the tube later than we said we would, at two or three in the morning, we would see his dark outline approaching, too relieved to be angry.
He’d come upstairs and put his head round our bedroom doors when he got back from his club in the evenings. ‘Coming for a walk?’ And when I’d had enough of writing essays or making mix tapes or reading I said yes, and he put on his jacket and picked up his twisted oak stick. We walked arm in arm through the dark, our shadows lengthening and shortening under the streetlights, past the black space of the common and the big houses that backed onto it. He looked around as he walked, checking for anything out of place, and swished the stick in kendo moves, his clenched fist turning the wood this way and that. Every now and then I did a little dance with my feet to stay in step with him.
He’d speculate on how much the houses were worth, how much ours was worth by now. He’d talk about judo politics and his time in Japan, about his latest idea for turning a profit and the state of the economy. And when he paused for breath, I’d tell him I was thinking of doing Drama at University, or I felt down because a boy I’d given my number to at a party hadn’t called.
‘You know what I do with depressing thoughts?’ he said. ‘I imagine myself sitting on the side of a mountain, and every time one of those thoughts comes into my mind, I imagine it’s a stone and I throw it away, down the mountain. And I say, not wanted.’
We still met for our evening walks, long after I’d been to university – where he’d assessed my bedroom for its escape potential and insisted I buy a length of rope to tie to my desk and climb down in case of fire. After he and Mum divorced and got their own places. After I bought my first flat and he came round for meals or cups of tea. It was harder to fit the walks in when I moved further away to live with my partner, but we’d talk every day or two or Syd would text to suggest lunch at the greasy spoon.
He wrote me a letter when I went to the Isle of Wight for a week on school journey, aged 10. Absence makes the heart grow fonder, he said at the end. I’d never heard this before. I thought about it a lot.
*******
I stand with my brother by a blue door with a keypad. There is a low, wide window next to it, and through my reflection are the shapes of older people dozing in armchairs lined up against a wall. Washing powder and cooked meat wafts from a vent somewhere into the warm summer air. I scan the lounge for Syd and my heart thuds, fast. We haven’t seen him for two weeks, since our text messages went unanswered, since we knocked on the door of his silent house and no one opened it, not even his wife, since we googled and made calls, increasingly concerned, since we discovered that his undiagnosed dementia had escalated into paranoia and aggression and that he’d been taken to hospital and sectioned.
Max and I exchange a look, a look which says come on then, and I press a button on the keypad. We wait until a staff member in pale green overalls and a name badge opens the door. She glances warily at my seven-months-pregnant belly and hesitates, and for a moment I panic that I won’t be allowed in, that she thinks it won’t be safe for me, but I tell her we’re here to see our dad and she relents and stands aside, closing the door behind us. In a small, airlocked lobby she tells us to sign our names in a visitors’ book, then opens the door to the ward and we follow her into what looks like a waiting room, with a side office, a wall-mounted whiteboard saying today is Saturday and an oversized clock. And there, immediately, is Syd.
‘Ah, Max, Sash, you’ve saved my bacon!’ he says, beaming.
He is wearing a navy, cabled jumper I haven’t seen before. His thinning hair is sticking up in tufts all over the top of his head and his grey beard is wispy and untrimmed, but his hazel eyes are alight with love and hope, and as I look at his familiar face in this strange place with its pastel walls and locked doors and wipe-clean surfaces and scuffed floors, his dear, known face which says home to me, and safety, something in me cracks.
‘Well, are we off then?’ Syd asks.
Under the suspicious glare of two women sitting on a plastic-covered sofa, one wearing a sari, wrapped in a blanket, one clutching a black handbag to her chest, Max and I force ourselves to smile back. Behind Syd are pine tables and chairs and a food serving hatch where a member of staff is crashing cutlery into a grey tub. Through a window to our right is the garden our sister has told us about.
‘Let’s go outside for a bit,’ I suggest, and Syd follows us and we sit on a heavy bench, squinting in the dazzling sun, improvising, second to second, what we will say and how we will behave, now that we are here and the old order of things has been turned on its head.
‘Do you know what that means, being sectioned under the Mental Health Act?’ a doctor asked me when we’d finally tracked Syd down. I did know, because it had happened to a friend who’d suffered a breakdown when we were 17. I learned then that Section 2 of the Mental Health Act 1983 allows people to be detained in hospital for up to 28 days for the purpose of assessing their mental health, regardless of their will, if professionals such as doctors or police officers agree that they are likely to cause harm, either to themselves or to others. A person with dementia living on their own might not be able to prepare food or keep themselves clean, for example, and might not have the capacity to agree to being assessed – or their symptoms may cause them to be aggressive, as in the case of my dad. In 2017-18, a few years after Syd was sectioned, 1 in 1000 people aged 65 and older were sectioned in the UK, the majority of them with dementia.[1]
By its nature, sectioning is carried out as a last resort in situations which have become untenable – when the person or those around them need an immediate solution. When he tried to hit a police officer who had come to his house after reports of a disturbance, Syd was taken by ambulance to Henry Rogers Ward,[2] with time only to put a few clothes and a toothbrush into a plastic bag.
And if his dementia hadn’t caused him to become so confused and disorientated, if the police hadn’t been called, if he hadn’t lashed out, we wouldn’t be sitting in front of him now in a garden enclosed by a high, chain-link fence, a stranger asleep on the next bench, Syd wearing someone else’s clothes. On a later visit, when I arrive and find him in a T-shirt with ‘Ted’ written in indelible ink on the label sticking up at the back of his neck, I will ask a staff member why he’s not wearing his own clothes and she will explain, briskly, that all the patients’ laundry is done together and it’s not possible to separate it. This jumbling, this mixed bag, this one-size-fits-all is our introduction to institutional care, and we are spun and shaken with it. All we know is that Syd has had a brain scan and will probably be diagnosed with a rarer form of dementia. But we don’t know what to say to him, or what he does all day, or where his bedroom is, or how long he will be here, or how he will be cared for, and no one explains any of this to us and we are too shocked to ask.
‘How are you Syd?’ Max asks.
‘Ah, not too bad,’ he replies. ‘I’ve been down to the beach, the island is OK really. But what I really need is a pair of bolt cutters to get through this.’ He gestures to the fence surrounding the pleasant garden with its flower beds and paths and little wooden summer house. ‘Do you think you could get hold of some for me?’ Of course he is planning his escape, and our sisters will smile when we tell them later, but all I can do now is lie uncertainly and say OK. And I feel sick with the knowledge that I won’t help him, that I will be complicit in his detainment, I feel sick with shame that for all his care and protection, his readiness to rescue us, I can’t rescue him. Can’t tell the staff we’re taking him with us, can’t hold open the door and drive him away, shaking our heads at how this ridiculous situation could have happened in the first place.
‘I want to go home,’ he says, as if reading my mind, and Max changes the subject, asks Syd how he is sleeping and what the food is like. I tell him my partner says hi.
‘And how is he feeling about impending fatherhood?’ Syd replies, perfectly lucidly, as if the three of us are having lunch in the café by the common in the old world, before Henry Rogers Ward had anything to do with us.
A nurse comes out, wheeling a metal trolley. ‘Blood pressure. Give me your arm.’ She wraps a thick, grey nylon band around Syd’s bicep.
‘Do you know,’ he says to her, smiling mischievously, ‘with a bit of warning I can slow my heart rate down to five beats a minute.’ He looks at her, his lips twitching. The nurse’s face is blank. He’s making a joke with you! I shout inside. He’s trying to make light of all this, to make us feel better! I smile at her, willing her to smile back.
‘I’m like an elephant,’ Syd continues. ‘They can live for a hundred years!’ The nurse removes the band, glances at a list on a clipboard and pushes the trolley inside.
We haven’t planned how we will leave. Max and I murmur to each other about slipping out but Syd follows us right up to the door. We tell him that we have to go now, that our sisters will visit tomorrow.
‘You don’t have a spare mobile, do you?’ he asks, looking worried. He pulls a paper napkin from his pocket and tells me to write my number on it. ‘In case I need to get in touch with you,’ he says.
We have to say no, we don’t have a spare phone. We have to kiss him goodbye and walk back through the doors of the airlock and leave him behind, making his Stan Laurel now-I’m-in-trouble face in a last, anxious attempt to make us laugh.
I walk back across the lawn, back through the hospital gates, back to my work and my partner and our excited, nervous preparations for our first baby, back to my social life and my friends, who won’t be able to imagine any of this, and we have no way of knowing, my siblings and me, that hospital wards and nursing homes will now be woven into every day of our lives for years, that in the instant of our dad’s sectioning my family crossed into the hidden world of social care, which was there all along, on residential streets, by bus stops, in cul-de-sacs. We have passed the anonymous facades of these knocked-through houses and shiny new builds on our way to work or the pub or each other’s houses, ignorant of their purpose, innocent of the units and wings and bedrooms and offices inside, the bland rooms where our relationship with our dad will now play out until he dies.
*******
Just before Syd’s seventy-fourth birthday, his consultant, Dr Robinson, calls me to say that a diagnosis of frontotemporal dementia is confirmed. This kind of dementia primarily affects personality, behaviour and language, he explains, so Syd’s memory might not be as badly affected as in the more common forms of dementia like Alzheimer’s. A Mental Health Tribunal has been held, Dr Robinson continues, and found that Syd’s needs cannot be met at home. Because his stay on Henry Rogers Ward has exceeded 28 days, he is now being held under Section 3 of the Mental Health Act – which, we will find out later, has the unexpected but welcome legal side effect that all his future care costs will be paid for by the state. Dr Robinson tells me that when a suitable place is found for him, Syd will be moved to a care home.
If Syd is moving to a care home, I think, that means he will not be going home. He will live at the care home. He will never go home.
I think of him pottering around his house. Boiling a pan of water on the stove for tea. Sitting in his office, ‘tap-tapping’ on the computer to write his novel, making an uummmph noise as he gets up from his chair. Drawing the blinds in the living room and checking the locks on his way to bed. In my own kitchen, leaning over my bump to reach the washing up in the sink, I think about Syd’s illness and what I know lies ahead for him, and I shake with sobs. At night, as I haul my bump from side to side, trying not to disturb my partner, I picture Syd awake, alone, unable to contact the people he loves. Not wanted, I whisper to my thoughts, trying to throw them down the side of the mountain, in darkness, but they are cold and stick to my hands.
By the time my due date comes and goes, two months after Syd is sectioned, it has become routine to drive to the hospital every few days, to sign my name in the book in the airlock, to find somewhere to sit and produce a packet of biscuits from my bag. Situations I couldn’t have imagined begin to feel run of the mill. One afternoon when I’m sitting with Syd in the main lounge he abruptly calls a meeting to order. He thinks he’s at his judo club, where he was manager, then chairman, and calls out to other patients, puzzled and then disapproving when they don’t join us. Assuming I’m the secretary, he turns to me and asks what’s next on the agenda. I make up items that might seem plausible.
‘The broken showers in the men’s changing room?’ I say. ‘The date of the next AGM?’ He takes my suggestions and runs with them, satisfied. The meeting goes on for an hour, until I feel too tired to continue and say, ‘It’s just any other business now, Syd.’
We walk slowly around the garden, hand in hand. A patient stands in one of the bushes, just the top of his head showing, watching us, but it doesn’t seem strange. Syd and I talk about the trees in the garden of the family house where the six of us lived, before he and Mum split up; the pear tree, the apple, the olive, the mulberry, and he remembers them all. The comforting feel of his hand, padded and big, takes me back to an even earlier time, to the bedsit in Baron’s Court which was my first home. Suddenly he says, ‘Right madam, off you go to your cosy red brick house. Snug as a bug in a rug, sharp as a razor.’ He lets go and walks off.
When my baby is finally born, as the long heatwave ends in a swirl of dried leaves, Syd has lived on Henry Rogers Ward for nine weeks. On the last day of my partner’s paternity leave we take our son to meet him for the first time. A staff member looks at the carrycot my partner is holding and points us wordlessly to a visitors’ room. ‘No one told me you were pregnant,’ Syd says, when he is led in. He looks exhausted.
A month later he is moved to a cramped, stuffy dementia unit on the second floor of a care home half an hour’s drive from the hospital. A narrow corridor connects his new bedroom with a tiny living room crammed with furniture, and ends in a locked door to a stairwell which leads down to an inaccessible garden. There is nowhere for Syd to walk. He becomes agitated and wild, and days after he arrives the staff call an ambulance, put him in it and dump him in A&E. When Syd is sent back to Henry Rogers Ward, the overriding feeling my siblings and I experience is relief. And perhaps it’s as familiar to Syd now as it is to us, because he is calmer immediately. We’ve even started to wish he could live there permanently.
Sometimes he is sad, sometimes funny. ‘Stand aside, you scurvy dogs!’ he shouts when I arrive one day, grinning defiantly. ‘I feel smudged,’ he greets me with another day. I know where the quiet lounge is now and lead Syd there with one hand, holding my baby in his car seat in the other. The lounge has stained, soft green sofas and its own door, and while the baby sleeps Syd and I play disjointed card games with the incomplete set I find on a bookcase, soft at the edges, dirty and slightly sticky. ‘Snap!’ I say, and Syd looks at me blankly.
*******
Six months after he is sectioned, in the middle of winter, Dr Robinson rings to share the good news that a room has been found for Syd in one of the small number of care homes willing to accept residents with ‘challenging behaviour.’ We don’t ask why Syd has acquired this label, although we wonder if it’s because he squared up to a male patient harassing a woman on the ward, or because of his distress at his first care home. Later I will learn that agitation and aggression are common symptoms of dementia, affecting 30-50% of people with the disease,[3] and I’ll understand that these symptoms would have been noted on Syd’s medical records, putting off many of the care home managers who read them. Although it was clear to my siblings and me that the unsuitability of Syd’s first care home contributed to his unhappiness and restlessness, this wasn’t mentioned by hospital or care home staff until we brought it up. It was Syd, not his environment, who was deemed to be the problem.
Twelve years on there is greater awareness that disturbed behaviour in dementia patients is often an attempt to communicate unmet needs. The Alzheimer’s Society website currently lists dozens of possible triggers for agitation, from emotional to physical to pathological.[4] But in the winter of 2013, as I look up the address of Pinhill Care Home on my phone, as I pack our smart new nappy bag and buckle my four-month-old baby into his car seat, I don’t know what to expect. It’s hard not to feel a little afraid of the state Syd might be in, hard not to imagine a grim, chaotic establishment where intimidating staff restrain violent and unpredictable people.
I drive my son through parts of London I haven’t heard of before to find a place surprisingly near. Manor Road. North Road. The High Road. Unfamiliar roundabouts and junctions, a road skirting an overgrown common, then a row of pubs, barbers and charity shops. I turn into a cul-de-sac with gates at the end and enter the code we’ve been given, which will allow us to let ourselves into the building whenever we like. The unassuming, single-storey building which will house Syd for almost four years, containing him as securely as the disease which grips his brain.
A woman with Reyna on a name badge sits in a reception booth inside, a phone receiver wedged between shoulder and ear. She waggles her fingers at my son and points to the visitors’ book on the counter as she talks, then scribbles another code onto a scrap of paper and hands it to me. The home is made up of two units, one for dementia care and one residential, and we’ve been told it was purpose-built for people with dementia. This is the third strange place I’ve found my dad in since he was sectioned, and the unit where he now lives is to the left, through double doors bearing a blu-tacked notice saying KEEP CLOSED AT ALL TIMES. I press the code into the keypad and carry my baby into his grandfather’s new world.
The walls of the brightly lit unit are magnolia and peach, the floors are pale wood laminate and there are windows in every direction. Straightaway, this home feels better than the last one. Instead of narrow hallways, dead ends and locked staircases, all of its rooms – lounges, bedrooms, nurse’s office, bathrooms and dining room – are arranged around a wide, circular corridor. I hold my son’s warm, small body to mine like an amulet as I walk slowly along it. We pass the dining room, where staff pause and turn at the sight of a baby, and stand on the threshold of the large main lounge. It’s almost homely, with its floral-patterned wallpaper and satin curtains, if not for the ubiquitous plastic armchairs clustered round coffee tables. Nostalgic objects – a typewriter, a rotary phone, a teddy bear – sit on a cabinet and a Magic FM presenter talks to himself through a wall-mounted speaker. Syd sits by the window. I walk over, lean down to kiss his cheek, assess his face and eyes for his mood. I ask a carer where his bedroom is and hook my free arm through Syd’s to take him there. When he’s settled I drag another chair in from the lounge and I close the door and breathe with the relief of being able to spend time with my dad in private, screened from an audience of strangers at last.
Syd’s new room has an adjustable bed, a pine desk and wardrobe and an ensuite shower. My siblings and I try to make it feel like a room he might have chosen. We bring in a photo book we’ve made about his life, large cheap frames filled with more pictures which are hung on the walls, and new, labelled clothes to put in the wardrobe. We make the best of things, busy ourselves with these small tasks as if they can make what has happened easier to bear. And to our relief, Syd settles in almost at once. The O-shaped design of his unit means he can walk round and round the corridor for as long as he likes, never meeting a corner or a bolted door, and now that he is able to move his body the way he wants to, when he wants to, his ‘challenging behaviour’ disappears and doesn’t return.
My journey to Pinhill becomes a ritual. A new route on the map of my relationship with my dad, to a place almost entirely separate from the rest of my life. Week in, week out, as my baby’s small fingers squeeze his plastic teethers and aim them clumsily for his mouth, as his tongue forms first syllables, as he learns to sit up, wobbling precariously, we visit Syd. I never know what we’ll find. Will we catch a glimpse of Syd walking ahead of us, vanishing round the curve of the O, or asleep in a chair, his chin and chest studded with dried porridge, or wide eyed and clean shaven, greeting me with a cheery Hi Sash? I sit next to him and jiggle my little one on my knee, distracting him with toys or bunches of keys, I hold Syd’s hand and stroke his big knuckles with my thumb, I breastfeed my baby and take him to the accessible toilet to change his nappy on a mat laid out on the floor.
I get used to the constant hum of my concern for my dad. It is there at the back of my mind all through the day and in the middle of the night when my baby wakes. It’s there when my phone rings and my heart lurches, every time, at Pinhill’s name on the screen. It’s there as Syd gradually worsens, his walking more erratic, his body thinner, his eyes less focused. Even on the better days, it hurts, every single time, to see him in the care home. And there’s a kind of dull shock when he looks particularly well and like himself. It’s just like seeing a ghost.
‘Come on, let’s go home,’ the ghost says to me as I’m gathering my stuff to leave one evening, and tears spill down my cheeks. On the days when I can’t stop myself crying, I wipe my red, wet face and leave, and none of the staff I pass on the way out meet my eyes, or lay a hand on my arm, or ask me if I’m OK. And I’m embarrassed, as though I’ve dropped something with a loud bang or walked around with my skirt tucked into my knickers. My feelings don’t belong here, I learn.
Outside Pinhill, my partner and I start looking for a new house. Now that we have a child we want a garden, more space for our son to grow up in. We view a rundown, converted bungalow in an odd little patch of suburban south London. It’s crowded with furniture, a pair of reading glasses still on the side table by the settee, it’s filthy with thick dust and spatters of dried parrot shit, but the house is spacious and the road is tree-lined and quiet. I stand in the wood-panelled kitchen and look out at the long garden, an overgrown mass of green. All I can hear is birdsong, and goosebumps prickle across me from head to toe.
We complete on the sale, we move our furniture in, we scrub the grey grime from the kitchen and bathroom, strip the floors and paint the walls white. Before long I’m a member of the book club and our toddler has acquired a surrogate granny who lives a few doors down. We choose a kitten from an animal rescue charity as if to complete the picture, and when she gets stuck at the top of a tree in next door’s garden, half a dozen neighbours come out to get her down.
I climb the hill of our street at night, under the streetlights, turn left or right to continue. I carry what has happened to Syd with me, and how he used to be. He hasn’t been to our new house and this makes it feel less like home. Sometimes I wonder, like a child, how he’ll find me there. My shadow lengthens and shrinks. I wonder if my dad is dozing in front of the TV, or if one of the carers gathers his legs in their arms as he sits on the side of his institutional bed, swinging them up and onto the mattress until he rests on the pillows. I peer into lit windows. I’m not scared, although I’m alone. When I get back, I tread softly round the house and lock the doors.
[1] https://www.thetimes.com/article/9062b63e-f745-11e8-a7ad-f292e75f50c3. The numbers were similar in 2021-22, the most recent dataset, when 9028 people aged 65 and older were sectioned (approximately 1 in 1100) https://digital.nhs.uk/data-and-information/publications/statistical/mental-health-act-statistics-annual-figures/2021-22-annual-figures
[2] Some names have been changed.
[3] https://www.alzheimersresearchuk.org/news/making-the-case-for-treatments-for-agitation-in-people-with-alzheimers-disease/
[4] https://www.alzheimers.org.uk/about-dementia/stages-and-symptoms/dementia-symptoms/aggressive-behaviour-and-dementia
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Sasha Neal is a writer and audio-visual content producer. She has made short films for organisations including the Arvon Foundation, Pop Up Projects, Booktrust and the Poetry Society and collaborated with poets including Liz Berry and John Hegley. Sasha recently co-directed the ‘Who Cares?’ oral history project, recording and editing a podcast series about the life stories of care home residents. She is currently writing a book about families, ageing and social care, and posts life writing and other essays on Substack. Sasha grew up in south London, where she now lives. dementiasdaughter.substack.com