Gotta Get Theroux This: My Life and Strange Times in Television

I took the step that felt as though it changed everything – bringing the possibility of a way of working that was, for me, unprecedented, and opening up new frontiers of programme-making – in 2011.

We’d made a series of programmes – about kids on psychoactive medication, Miami Jail, and Americans who keep tigers and chimpanzees as pets – and we were once again casting around for ideas.

A book called Leisureville had come out, an immersive piece of reportage about life at a vast retirement community in Florida. With extensions in people’s age, many American elderly were now leading a kind of second adolescence, filled with sex, video games, and drugs. I wondered if it might be an idea for us. I persuaded myself it would be a welcome return to a lighter, funnier style of story, though I also worried it was too soft, that there wasn’t enough to get my teeth into. We discussed including people suffering with Alzheimer’s and dementia, to give it more weight. But that seemed a bit of a mismatch of material, and from there we drifted towards thinking about a show exclusively about Alzheimer’s and dementia.

We ordered up a few programmes from the BBC archives. They were rather off-putting. One of them, an experimental documentary made in the eighties, featured a mixture of real dementia patients and carers who were played by actors and who sang songs about their work. ‘It’s been three weeks since he recognized his wife / what a life!’ (That’s not an actual quote since the usually dependable Google Video search has failed me on this occasion, but take my word for it, it was pretty odd.) Others were dull-but-worthy exposés about UK facilities where the residents didn’t get enough activities and the staff had to pay for their own toast. My series producer, Emma Cooper, having watched a couple of these, began having misgivings about the whole idea and sent me an email saying, ‘It better be more than Louis taking Doris to the loo.’

And then there was a deeper question, one that brought the project into doubt on a more fundamental level. My exec, Nick, raised it early on. Who exactly was doing anything questionable? Who was I going up against? It was the first time in my entire career of making programmes that I had taken a subject in which potentially no one would be doing anything the least bit ill-advised or wrong-headed or silly. I thought about this and realized it could be a serious stumbling block. For as long as I’d worked in television – going back to TV Nation days – I had looked for stories in which I was in some small way arrayed against someone. Who was that here? For a while I tried to persuade myself that there was a background question to do with the medical establishment making people live too long, warehoused in care homes. But even I wasn’t quite sure whether I believed it.

Still, we needed to make something and I hoped that, despite the absence of a broader question of injustice or strangeness, there might be a story in the set of dilemmas faced by the loved ones of the family members with dementia: what were one’s responsibilities to someone whose personality was dissolving? A wife who no longer recognized you and was pursuing relationships with other people? A parent who was becoming a liability – getting drunk, taking the car, becoming physically violent – but who didn’t wish to be locked up? What were one’s duties to a parent who was seemingly incapable of any thought, expression, or recognition?

That was the idea. But I think we were all aware that we were venturing into new terrain.

It was agreed that we needed a residential facility where we could do the bulk of our filming while making sorties out to pick up other dementia-affected characters if needed. Given the bleakness of the condition itself, the brief became finding a positive supportive environment that would relieve some of the grimness of the subject and possibly teach us something about the newest best practice when dealing with those with dementia.

An AP, Gavin Whitehead, who’d recently come off the show Top Gear, did the research. Bit of a change of pace but it’s still basically elderly people and wheels, I suppose. We settled on a place in Phoenix, Arizona, called Beatitudes. Gavin and a director called Dan Child went out and shot some recce tape, which we watched in the office. There were still some questions about how interesting it all was. When projects are slow, I am sometimes paralysed by the thought that we are, as a production, nominally free to pursue any idea in the world, and yet we ended up here, looking at tape of old people with Alzheimer’s drifting around in grey corridors. But there was also a subtle poetic dimension, to do with the sadness of life’s final stage. Recalling the myths of the ancient world, I was struck by the similarities between dementia and the waters of the river Lethe, in Hades, which, it was said, when drunk would cause the souls of the dead to forget their lives on earth.

One contributor jumped out, a dentist in his sixties, known to everyone as Dr Gary. Dr Gary was affable and funny and, depending on the fluctuations of his condition, believed himself to be living at an army base thirty or forty years in the past. He had a wife called Carla, some ten or fifteen years his junior, who still lived in the family home. But Gary no longer remembered being married. He recognized Carla only as a friend and junior colleague – and he was in relationships with a couple of other women at the facility.

The film ended up centring on the strange world of Dr Gary.

‘This is my workplace,’ he told me the first time we met.

‘Doing?’

‘Dentistry or working on something dental. Whatever they put me to. I don’t care. It’s not really a medical building . . . But here we are. I don’t ever leave it. It’s kind of strange that way.’

His situation was at once fascinating, bleak, and also in its way heart-warming. He clearly enjoyed having a camera crew around. He liked making jokes and passing on esoteric bits of information. He was, most of the time, content to be berthed at the vague military base he imagined he was at, wandering the corridors, doing quizzes, the object of the many ladies’ attentions. For a while he’d been stressed out about not having a wallet – he thought he must have lost it – so staff had equipped him with a dummy wallet, a prop with meaningless cards inside. He was living a curated reality in a benign matrix.

Sometimes, of an evening, he would experience the confusion and distress known in the world of Alzheimer’s as ‘sundowning’. He’d pack his bags and announce it was time he was moving on to his next posting, or he’d hover around the emergency exits, expressing a desire to leave. At these times, he would need ‘redirecting’. The commonest way was to tell him your teeth were bothering you and ask for a quick check-up. This would distract him and soon the urge to leave would be forgotten.

I tried this one time when I noticed him loitering by an emergency door.

‘ “Push until alarm sounds”,’ he said, reading from a notice on the door. ‘ “Door can be open fifteen seconds”.’ Then, with a tone of perplexity – his hands out palm up, expressing incomprehension, he added, ‘That’s a siren going for fifteen seconds. You can’t use that! That’s ridiculous! What can I do?’ He looked at the camera now for help. ‘I’m screwed.’

‘Someone told me you used to be a dentist,’ I said. ‘Would you take a quick look at my teeth? They’re not very clean, though.’

‘Well, you’re a Brit, aren’tcha? You guys don’t clean your teeth like we do. Bite down. You’ve got good occlusion. Cross-bite back there. I wouldn’t do anything about it cos it’s not going to hurt you now.’

And he was away.

The first week of filming seemed to go well enough. We flew back to look at what we had shot, and it was in watching the rushes with the rest of the team that I got a queasy feeling.

Some of the material with the dementia patients was somehow not quite right. It was a finely judged thing. When I asked questions like ‘How are you?’ ‘How do you like it here?’ ‘I understand you’ve been having some memory issues?’ it felt OK. But any question that appeared designed to elicit frailty felt very wrong. Anytime a resident’s loved one or close carer was not present, the conversations could also feel problematic. But conversely, when a loved one was around, and when the dementia sufferer was part of a three-way conversation, with the vulnerable affected person included, the conversations were enjoyable and natural, and the foibles and funny phrases became part of a genial and warm expression of fellow-feeling. One was licensed to laugh and find them funny, which in turn created a sense of release, all the tension that went with the sadness of the affliction and the sense of embarrassment of not knowing how to talk about it was dissipated and replaced with a wonderful feeling of connection.

This became a rule of thumb in later years when doing stories involving people with disabilities: to always include the affected party in the conversation – even if it’s a person in a coma or in a non-responsive state to attempt to make contact with them – and in general always to be aware of who is in the room and has a stake in whatever is being discussed, especially when it’s someone who might be overlooked: children, the vulnerable, even animals.

The most touching encounter I had at that time was with a couple named John and Nancy Vaughan. They were ninety and eighty-nine years old respectively. They’d been married sixty-odd years, and in old photos they came across as a glamorous pair, a little like movie stars. Both were still healthy in body but, while John was mentally present and correct, Nancy had profound symptoms of dementia. Without children, it had fallen to John to be Nancy’s main carer, a task as physically demanding as it was emotionally wearing.

Their house backed on to a golf course and the road was lined with cactuses and succulents instead of the usual lawns and trees. John came to the door wearing a nametag, a reminder for Nancy. He ushered me into the front room to meet Nancy. She looked me up and down and gave me a little tap.

‘You’re beautiful,’ she said.

‘Thank you,’ I replied. ‘So are you.’

‘Ah! We’re beautiful and beautiful.’

In the kitchen, we talked some more. Nancy was charming and friendly, playing host, using intonations and inflection that were appropriate. But her words were a different matter. They came and went or were half-made-up. When John asked her her first name, she struggled to recall it. Asked her second name, instead of the correct one, ‘Johnson,’ she said a little uncertainly, ‘Bread.’

The overall effect was of someone being present, enacting forms and rituals in a way I recognized and that felt honest and warm, but that was also, in a way, illusory, and it was hard to tell how much I was projecting onto her of what I imagined she might mean.

Having, as I saw it, hit it off with John and Nancy, on our second trip we arranged that I should spend an afternoon with Nancy on her own. She was a feisty character who didn’t hesitate to show her impatience with me, and my own feeling was that it was here – in being one-to-one with an unpredictable albeit charming and likeable dementia sufferer – that I would be tested. This was me, in a sense, ‘going up against’ someone, being challenged and experiencing the central dilemma of our story – the complexity of personal relationships with a dementia sufferer – at first-hand.

It was also, I should add, part of a solution to a problem of storytelling. Our documentary needed progression. In other stories, I had followed the ups and downs of my contributors, their dynamic trajectories, while also deepening my own journey, getting closer, understanding more, challenging more assertively. With dementia, the illness only goes in one direction, downward, at various inclines. So the afternoon with Nancy was also a helpful destination for the film, a moment of climactic participation, in a third act that otherwise threatened to be uneventful and dispiriting.

John had invited me to take over. For him, he said, it would be a welcome break, and also a valuable illustration of what he was up against. His break was semi-fictional in that we had arranged that he would be on stand-by in a back room in case Nancy needed the bathroom. In the event the day passed relatively peacefully. Nancy and I went for walk and got about twenty yards outside the house when she told me she’d had enough and wanted to go back. I made lunch but Nancy seemed to forget how to eat. Then she forgot who I was and what I was doing there, though without it causing her any distress. I tried to put some music on, grappling with a stereo on all fours on the floor. ‘What are you doing down there?’ she enquired with a little impatience. Then we looked at old albums of photographs in the front room and she fell asleep leaning on my shoulder.

I took an elegiac pleasure in her company and her contentedness. She was still beautiful, still kind and self-possessed, still present, while also being reduced, hollowed out, like a grand old hotel that had seen better days. The satisfaction she still took in life was evident. When John returned I thanked him and told him and Nancy how much I had enjoyed the afternoon.

‘How much of Nancy is still here?’ I asked.

‘Thirty per cent,’ he said. ‘But all of it is still in here.’ He pointed at his own head. ‘My memories of a great sixty-one years and an oath that said we were going to be with each other until death do us part. And it hasn’t parted us yet.’

It seemed an almost philosophical question about quality of life. I’d heard people assert their preference for death over the addled existence created by advanced dementia. Later I would make a film about assisted suicide in which a contributor expressed his firm conviction he would prefer to be dead than alive with dementia. But I also wondered: by what right does a person claim to make decisions for a future self, a self who may have their own ideas about dignity and quality of life?

On an upper floor of Beatitudes was a residential area for those with the most advanced dementia. One woman, sixty or so years old, would wander the hallways uttering a continuous stream of noise that sounded like ‘gulla-gulla-gulla-gulla-gulla’. Once a week, her son would visit. He’d follow her and circle around her, eliciting no recognition. We filmed as he waved photographs of her younger days, trying to register some small moment of reaction. There was nothing, or next to nothing.

‘My sisters don’t come any more,’ he said. ‘Because this is hard.’

He described a mother who had been a nurse, a caring person but also a worrier, self-conscious, assailed with self-doubt. In this telling, his mother’s dementia – her slow departure – had also, in certain respects, been a release, mitigating her cares and anxieties. And then, as he was saying this, his mother paused, took his face in her hands and rested her eyes on him for a moment.

‘And that’s why I come,’ he said. ‘Because sometimes that happens.’

It would be hard to overstate how much of a sense of release it was, making a film that was engaging and funny and entertaining and which at the same time featured only good-hearted people doing their best in difficult situations. It felt like I’d arrived after a long circuitous odyssey at a place I never quite dared to dream existed. Imagine: a film you could show contributors and not worry overmuch about their reaction. Films that were filled with strangeness, awkwardness, awfulness, distress, nightmarishness, but which were basically supportive of their contributors, sympathetic to their situations, on side with them in seeing the unfairness of what they were having to endure. Not that I imagined it was the only way I would work from now on, but it seemed to open up new seams, new possibilities, story ideas I’d nursed for years but never imagined I might be able to actually do.

Not long after we finished the dementia film, we started one on autistic children and their families. I’d heard a documentary on Radio 4 called ‘Letting Go of James’ about a family with several children, one of whom – the eponymous James – was autistic, non-verbal and prone to physical assaults on those closest to him. The documentary followed the ups and downs of the family as they came to the decision to put James into a full-time residential facility – the heartbreak of saying goodbye to one’s own child, the love mixed with more complicated emotions. I was aware that much of what people commonly understood about autism stemmed from films like Rain Man and books like The Curious Incident of the Dog in the Night-Time, which tended to focus on protagonists less prone to physical outbursts, and whose challenges were compensated for by almost supernatural savant abilities. This struck me as not just a little distorted – taking the broad sweep of autism and its manifestations – but also unfair on those families involved with the more difficult types of behaviour, as if it was assumed they all had mini-Rain Men running around, memorizing phone books and helping them to win millions in gambling.

We ended up making the autism programme and putting it out alongside the dementia one as a two-parter. In an attempt to acknowledge the shows as being about families and relationships dealing with extraordinary sets of emotions caused by neurological conditions, we called it Extreme Love.

In the years afterwards, I toggled between stories that were more obviously about weirdness – a porn follow-up; another about sex offenders living surveilled lives in south Los Angeles – and human-interest subjects about ordinary people making difficult decisions in impossible situations: families tempted to keep piling on expensive, often painful, medical treatments for loved ones with life-threatening conditions; clinics for people with brain injuries or dealing with profound addictions or assailed by baffling mental health problems.

It is a privilege to be able to document some of the most intimate and harrowing moments of people’s lives. I’m aware that may sound a little glib, or just ghoulish. I tend to see it as the opposite: an opportunity to make connections in the most unlikely places, a chance to find the comfort of friendliness and laughter in the dark.

When we were filming with dementia patients, several times their families and loved ones told me that the change of routine and the excitement of having a crew around had given them a new zest for life, lifting them out of the doldrums of an unchanging routine and a slow decline. Clearly that’s not why I make programmes. I am a journalist, not a social worker. I am there to get the story. I am curious about life. I am fascinated by the awfulness that life throws at us and in awe of the resourcefulness ordinary people show in toughing it out. By bringing out the story, I hope to spread truth and understanding. But I also like to feel that where possible we do not make situations worse – and that, where vulnerable contributors are concerned, we are mindful of their need to be protected from further harm. And over the years I’ve been struck that people who are going through extraordinary, often awful experiences are grateful for the chance to share their travails with an outsider.

Sometimes I have the sense that I am trying the patience of the audience. No one has said to me, ‘Why can’t you go back to making funny programmes?’ but I sense it, on occasion, in the reactions of friends or on Twitter. ‘Why don’t you make some more Weird Weekends?’ people say. ‘I enjoyed your programme – if enjoyed is the right word.’ Very occasionally I get: ‘Oh, too dark for me. Too depressing. Gloomsville.’ It preys on my own mind, too, the idea that I may stray into terrain that is self-indulgent: ‘I don’t care if it’s boring, it’s important.’

My own feeling is that a subject should only earn its stripes by being engaging, watchable – and, yes, enjoyable. I never want or expect viewers to come to a subject out of a sense of duty. Is it a good watch or not? Is it shocking? Is it powerful? Is it wrenching? I enjoyed watching Joshua Oppenheimer’s The Act of Killing. I enjoyed reading If This Is A Man by Primo Levi. I enjoyed Gitta Sereny’s biography of the death camp commandant Franz Stangl, Into That Darkness, and also her account of the child murderer Mary Bell in Cries Unheard. I enjoyed Nick Broomfield’s fly-on-the-wall film about a youth-offender institute Tattooed Tears and also Kurt Kuenne’s documentary about a child murder, Dear Zachary, and other films and books – too many to mention – that look with intelligence and sensitivity on subjects of profound sadness and darkness.

I read a phrase the other day: the heartlessness of optimism. To look on the bright side is counted as a virtue, but to do it in an unthinking way can be also unkind and uncaring, especially to someone who is experiencing pain, who is feeling lonely and unheard.

Accept that life is unbearable and awful for many people at least some of the time. Laugh about it if you can. Look on the dark side and make the best of it all.