Every Third Thought Read online

  Here she slips into an affecting personal recollection. ‘My dear father had dementia for the last eighteen months of his life. It was absolute torture for him – and for my poor mother. He had a variant which meant that a lot of his faculties were fine. He could discuss issues of global inequality, or the failings of American foreign policy. At the same time, he also believed that my mother had vanished, and that he was living with an impostor. This was something that caused him the deepest distress. He’d phone me to say, “I’ve lost the only woman I’ve ever really loved – can you please find her for me?” And my mother would be in the room next door. It was hell for both of them. Suddenly they were lost to each other. Occasionally, he would weep in desperation. He was not actually mad, but’ – this part of our conversation seems suddenly difficult – ‘I could never conceive of a situation in which I would kill him.’

  Looking into the future, Carol continues, ‘By the time I’m old, I hope a doctor would make that choice for me.’ She becomes almost indignant. ‘I think it’s a travesty of what life is about that we should keep people alive through these vacant years. We know that old people are often not treated well. Carers get fed up with mad old people. As a society, we’ve got our priorities so topsy-turvy. Why pour all these resources into the miserable and pointless ends of people’s lives? It makes no sense.’

  It seems to me that such a well-educated family would surely have discussed the right to die. In his lucid moments, I wonder, did her father ever discuss euthanasia?

  ‘He did ask me,’ she replies, with a kind of sorrow, ‘but I could not do it. I could see that it was the right thing to do, and I wish the system had allowed it.’ Carol describes how, after a bad fall, her demented father’s life had been prolonged by the well-meaning intervention of the local hospital, a source of further agony to her mother. ‘He could have died within days,’ she says, ‘and everyone would have been happy.’ With a certain finality, she adds, ‘That’s as much as I think about death. Even when I consider the statistics of breast cancer, and how they might apply to me, I principally think: “What a delicious, and dramatic, statement this could make.”’ While I marvel at her fearless and thrilling egocentricity, Carol goes on: ‘What I think about dying is that I think I’m immortal, though of course I know I’m not.’

  There remains her anxiety about suffering her father’s fate, and Carol comments wryly that we seem to have reached a stage where longevity begins to seem worse than death. ‘When my brain starts to fade,’ says Carol, ‘if I seem at all doolally, and my brain has gone, please get someone to kill me.’

  This, finally, is the clincher: Carol has endured the torments of chemo, and has lived with the imminence of mortality for years, and remains resolutely unfazed by death, yet can be visibly disturbed by the prospect of neurological degeneration.

  When we come to reflect on how we die, it’s longevity combined with a neuro-degenerative disease – Parkinson’s or Alzheimer’s, for instance – that has become the dominant preoccupation of an ageing population. According to Andrew Lees, Parkinson’s is ‘the commonest neurological cause of chronic physical handicap in the elderly’. He concedes that its cause is not really known (intriguingly, it’s twice as common among non-smokers). The disease will often begin with maladroitness in one hand, and feelings of tiredness. It’s the emergence of a tremor that cannot be ignored and usually leads to a specialist referral.

  That was how Max, a sixty-seven-year-old retired journalist, found himself in Andrew Lees’s consulting rooms, and faced with the news of a condition that would, ultimately, kill him. By chance, this was a diagnosis I’d encountered several years before, with my own father’s Parkinson’s.

  12

  WHERE ARE WE GOING?

  ‘No man amongst us [is] so sound, of so good a constitution, that hath not some impediment of body or mind.’

  Robert Burton, The Anatomy of Melancholy.

  When my father, Michael McCrum, died on 16 February 2005, aged eighty-one, his was an archetypal good exit. He passed away with incipient Parkinson’s and a dormant cancer of the prostate, but it was a case of ‘with’ not ‘from’, an all-important distinction. Remarkably, indeed, when he had first told his family about the Parkinson’s diagnosis, he had even predicted this outcome; and I don’t think he ever intended to live into extreme old age in a state of progressive debilitation. At the moment he collapsed in the living room of the terraced house in Cambridge to which, after a distinguished academic career, he had retired with my mother, he was felled by catastrophic cardiac arrest, not the illness once known as ‘palsy’. My father’s condition as a Parkinson’s sufferer was still in the early stages: his symptoms were under control, his magisterial presence as commanding as ever, and his brilliant mind fully alive, as it always had been. I think he was lucky. Wholly in character, he made a quick getaway, as he always preferred to do when alive. When I was recovering in hospital in 1995, he would sit at my bedside and read aloud from P. G. Wodehouse. I miss him still, and think of him every day.

  These were the moments that came flooding back when I first went to meet Max – known to his friends as ‘Mack’ – at the end of 2015, taking memories of my father’s final months.

  And yet, I was surprised to find only the faintest echo of those afflictions. At his home in West London, overlooking Richmond Park, Max was a picture of serenity, and even well-being. It was only as I got to know him better that hints of his condition began to emerge. Rather typically, Max had given his illness a nickname – ‘Parky’s’ – and had also been reading up on its history like the good reporter he is. This, I recognized later, was part of his coming to terms with the sombre truth of his affliction. Unlike Kate, or Carol, here was a man who had to make peace with the idea that there is no cure—a sensible strategy.

  It was in 1817 that Dr James Parkinson, a London physician, published On the Shaking Palsy, the first essay to identify and describe the symptoms of what is now known as Parkinson’s disease. Dr Parkinson’s account of his patients’ characteristic tremors and their distinctive hurrying of gait and speech was not exactly new. In Brief Lives, John Aubrey had already given a description of the ‘shaking palsy’ suffered by the great English philosopher Thomas Hobbes. An inveterate gossip, Aubrey was not breaking much new ground, either. As Oliver Sacks writes in Awakenings, such symptoms had been described by ‘physicians back to the time of Galen’. Crucially, it was Dr Parkinson who ‘first saw every feature and aspect of the illness as a whole, and who presented it as a distinctive human condition or form of behaviour.’

  For Max, the diagnosis of Parkinson’s identified a fundamentally conventional version of the illness. At this early stage, on our first meeting, his symptoms, which were barely detectable, were being treated by daily doses of Azilect and Sinemet. To anyone who did not know him, Max might have seemed elderly and deliberate in his movements, but otherwise unimpaired. I suspect that any of his friends who had not have seen him for a few months would have noticed a slowing-down of Max’s vigorous younger self, but not much else.

  Max was born in December 1945 to Australian parents, who had moved to Britain with the coming of peace. He is a lifelong metropolitan who enjoys a comfortable retirement not far from the Thames as it winds through waterlogged meadows towards Hampton Court. He has three grown-up daughters, and he now lives with Jacky, his American partner, a globe-trotting journalist who has made their London home a sanctuary of elegance and tranquillity. Max describes himself as a broadcaster, but during his long career in the media he has also been a journalist and screenwriter, film director and TV producer. Above all, he is renowned for his documentary reporting.

  Max’s family are Scots-Irish, as mine are, which perhaps explains some of our affinity. When we talked together in his upstairs sitting room with its distant view of the river, I think we both valued sharing the experience of cerebral deficits, comparing stroke with palsy. In his company, I recognize a gritty determination not to give in which I cannot help but
admire. During my own convalescence, after 1995, I had adopted a ‘no surrender’ approach to ill-health that Max, who is a stranger to self-pity, seems to share. The ‘Mack’ I have come to know is a warm, witty, and engaging family man, a sharp raconteur with a strong sense of the ridiculous combined with an instinctive delight in the human comedy, especially the works of P. G. Wodehouse.

  Max’s diagnosis of Parkinson’s did not come out of a clear blue sky. His appointment with Andrew Lees simply confirmed, and finally acknowledged, his suppressed anxiety about some unexplained and niggling new symptoms. During one of our conversations, he described how he had always wanted to go skating at Somerset House at Christmas. It was years since he’d done any skating, so he had enrolled in a couple of lessons. That was when he first discovered his body betraying him. ‘I found that it didn’t matter how many times I went to practise,’ he said. ‘I would always have this shaky sort of unsteadiness.’

  For Max, this ‘unsteadiness’ (typical of Parkinson’s) was a new and troubling sensation. ‘Fit?’ he queries. ‘I had always been completely fit. Blessed, really. At least until 2015. That was when everything went wrong. I realize now that I must have been getting Parkinson’s the previous year.’ The onset of this disease is slow. Characteristic symptoms of the ‘shaking palsy’, described by Sacks and others, were now becoming present in his life, but not yet distressing. Manifestations of Parkinsonism at this stage could be checked by drugs. Compared to the remorseless cruelty of Alzheimer’s, as Lees had advised me during our conversation in his lab, ‘there is always something you can do to help a Parkinson’s patient.’

  Max is neatly dressed in khakis and a white shirt, and looks perfectly well, until you notice how stiffly he is sitting on the sofa, and how awkward his movement when he rises. ‘There were other, odd little symptoms,’ he says, ‘but I’d ignored them. I remember going for walks on holiday that year, and I would keep falling behind Jacky. Yet, in the past, I had been a speedy, vigorous walker, steaming ahead on the path, and having to wait for everyone else to catch up. And then I started to get where I couldn’t remember a word, or would get held up on people’s names. That’s what comes back to each now, when I think about it.’

  I suggest that it’s a typical human response to hope for the best while privately preparing for the worse. Max nods. With hindsight, he concedes that he did not want to confront his anxieties, or the possibility of becoming disabled. He admits, ‘I had always been a little bit impatient with disabled people. Very arrogant, but there it is.’

  *

  At first, Max’s response to the diagnosis of the long-term death sentence of Parkinson’s was characteristically phlegmatic. ‘No,’ he continues, ‘I wasn’t particularly appalled. Maybe I was expecting it.’ He’d already had several consultations with his GP, followed by a visit to a specialist, before his appointment with Professor Lees. Finally, when the news came, he says, ‘it was no big surprise.’ Except for this: such infirmity was new to him. ‘I had always taken my health for granted.’

  Like Carol and Kate, and in a manner typical of this generation, he met the challenge presented by Parkinson’s with a good measure of natural confidence. ‘I don’t remember being panicked, perhaps because I’d been very well briefed by people early on. The local NHS Parkinson’s nurse, for instance, has been quite brilliant. There’s a wonderful support system in Richmond. Round here, they have regular monthly meetings, for Parkinson’s sufferers, which I have to admit I don’t go to. That’s partly because I don’t feel I belong there. Yet. Everyone seems so old and shaky and doddery. The medication I’m on is quite successful, though I’ve no idea how long that will last.’ He adds, with what I come to recognize as characteristic determination, that his New Year’s resolution is ‘to read more, think more, and exercise more’. Now he’s a man with a plan. ‘I’m going to make my Parkinson’s my number one job.’

  Max is nothing if not a realist. When we talk about his response to ill-health, he is quite frank about the possible outcomes. Parkinson’s is a neuro-degenerative disease he is likely to die from. He knows what this means, and confides en passant, as a kind of afterthought, that his father had also suffered from it. A discreet pause punctuates the conversation. ‘Jacky knows, of course,’ he says. ‘But I haven’t told my daughters yet.’ Pressed, he does concede that he has been ‘a bit of a coward about this’.

  Our conversation falters again, and then he adds. ‘This diagnosis has come ten years sooner than I would have liked.’

  Max is practical and stoical. ‘I don’t think “Why me?” ’ he remarks, of his fate. ‘I mean, “Why not me?” These things happen to millions of people. Why I should be immune to common experience? So, it’s a case of keep going – KBO, keep buggering on. Isn’t that what Churchill used to say during the war?’

  As a teenager, Max experienced Britain’s post-war recovery. Looking back, he remembers the Fifties. ‘In my school, we used to have playground fights – Elvis Presley versus Tommy Steele.’ He smiles: that was a world of infinite possibility. For him, it’s now a world that’s become almost extinct, a loss in his life that’s echoed by his condition.

  As a Parkinson’s sufferer, Max has been growing alert to the smallest signs of ageing. ‘I notice that my hair is thinning and that I’m getting what Jacky calls “angry old man” eyebrows. What spooks me more than anything is that while I’m shaving or cleaning my teeth in the morning, I’ll find myself stooping until I’m almost bent double. I have to tell myself to straighten up.’ He smiles wistfully. ‘Straighten up – and fly right.’

  *

  Death has been an intimate part of Max’s life for several years. When he was in his fifties, he suffered the loss of his wife to cancer and he has spent much time reflecting on fate and mortality. Now, faced with his own endgame, Max is resigned to fighting this battle on his own, and was glad to speak about his inner preparedness. ‘It’s odd,’ he says, ‘to use the language of war. How can you fight a battle you know you’re probably not going to win? Where the odds are so dramatically against you? Is that even the best way to think about it? It’s not a battle, it’s a progressive kind of surrender. As English patients, we are so conditioned by the clichés of resistance.’

  Max, the stoic, admits he does not quite know how to tell his friends, and dreads the inevitable moment of disclosure. ‘They notice I’m slower, and I know they ask Jacky, “Is he all right?”’ Max sighs, as if burdened by a heavy weight. ‘To begin with, I just didn’t want people to know. That’s my family’s basic instinct. We don’t like to talk about personal matters.’ He sees his condition, and its progress, as something he has to deal with, but does not want to inflict it on anyone else. Max has a rationale for this approach. ‘I don’t want to destabilize my family, so it remains an unresolved problem. But now’ – he sighs again – ‘I’m coming to the point where I think I should perhaps let people close to me know.’

  In the ebb and flow of this conversation, we are talking about art, possibly inspired by the lovely Japanese prints on the sitting-room wall. I remember that Van Gogh, in a famous canvas that’s now in Boston’s Museum of Fine Arts, asked three things: ‘Where Do We Come From? What Are We? And Where are We Going?’∗ Today, these questions seem rather pertinent. In response, Max concedes that his Parkinson’s has not only brought such existential matters into a new and sharper focus, but has also added another poignant query of his own: ‘Pessimists say that human life is both horrible and senseless, without meaning. If that’s so, then why must we die slowly, as I am likely to do?’

  Time: during the endgame, when everything gets reduced to the essentials, Time becomes a priceless commodity, more golden than any corporate handshake or pension. This, I think, is the nub of Max’s predicament: like any sixty-something, he recognizes that Time is the one commodity he’s running out of. He also knows, in the vaguest terms, how and when his final days might play out: he doesn’t want to die slowly. How, I wonder, does he deal with that? Does he have an
y interest in psychotherapy?

  ‘No.’ Max dismisses the idea of counselling with mild derision. ‘I mean: what would they tell me?’ He refuses to concede weakness, an Ulster Protestant trait. ‘I just don’t want people to write me off. Do I still feel young? God help me, I think I do, though I am aware of changes emotionally and physically. Perhaps I do look different to people, other than the way I feel.’ When Max speaks of his resolve and his future therapeutic strategies, he sounds like a man of resolution.

  Max remains a child of war. Memories of austerity linger. Together we recall how, as children, we endured a diet of shepherd’s pie, toad-in-the-hole, and fried fish. How, at school, institutional menus featured Spam, corned beef, mountains of lettuce, and ‘salad cream’. Kia-Ora orange squash was a juvenile luxury that we both remember, but Max insists with a smile that ‘water always came from the tap’. The shadow of World War Two and its colossal slaughter hangs over Max and his generation now as they make their rendezvous with oblivion. Does he, I wonder, defaulting to my ‘third thought’, think about dying?

  ‘Every day, actually.’ Max laughs. ‘I’d rather not, but it’s unavoidable. In my condition, and at my age, you can’t help it. I’m sorting out my will.’ He looks round the room. ‘Things like who gets the Japanese prints and who gets the contemporary art?’ He focuses again. ‘Dying?’ He pauses in thought. ‘I’m not scared of it, though I don’t welcome it.’

  What does he think dying might be like?

  ‘I haven’t got a clue,’ he replies. ‘Sudden would be good. A quick exit.’

  At ease with himself, Max has fulfilled most of his dreams. He has no Bucket List. ‘I’ve been to most of the places I wanted to go to, and done what I wanted to do.’ Now he has to make peace with his immediate future. With sequestered thoughts, we share a moment of reflection. ‘I’ve not many regrets. I’ve had a good life. Perhaps I’ve fallen short in some ways, but there’s nothing I can do about that now. I could have done some things better, but it’s too late to make amends. That’s the benefit of getting older. I don’t feel things quite as intensely, and I have more perspective.’