The Last Ocean

by Nicci Gerrard

  ‘You have to be tough to be old,’ she says to me. Or perhaps: ‘You have to be old to be tough.’ Both, I think.

  But really, strong or weak or wise or foolish, you just have to be old to be old. For the rest of us, it’s a foreign country that we travel towards and will if we are lucky come to in our time.

  3. THE BRAIN, THE MIND AND THE SELF

  ‘the marvel of consciousness – that sudden window swinging open on a sunlit landscape amidst the night of non-being’

  ‘Something is wrong,’ my father said to me, before he could no longer say anything. Sitting on the side of his bed and staring down at his unlaced shoes: ‘I don’t know what’s wrong. Something. What?’

  What does one say to such a question? Nothing is wrong? (Everything is.) There is such an urge to reassure: You’ll be all right. (You won’t.)

  Or this: There is something wrong with your brain. You have a complex brain disease. There is no cure.

  * * *

  • • •

  ‘Do you want to hold it?’

  I nod. The room is bright and cool, full of stainless-steel surfaces, large fridges and freezers that mildly hum, white plastic tubs and Tupperware on shelves in which pieces of the body float in liquid. It looks like a canteen, but without any ovens.

  I take the brain. It is heavier than I expected, softer: a gelatinous, pale mass. This soft, inert thing used to be the seat of a self; it contains around 86 billion nerve cells, a dot the size of a sugar grain containing about 10,000 and each one connecting to about 10,000 others, avidly consuming energy and giving life and meaning, magnificently plastic and connective and dynamic, never asleep even when we are, a miracle of perpetual motion with the body as its battery.

  It’s usually compared to a walnut, Shakespeare’s ‘nutshell’. It looks like a foetus, like two clenched fists. It looks like slimy coils of tripe, bloodless, folds within folds. It’s impossible not to think of food. And when Steve Gentleman takes a long knife and cuts the brain in half (two observers at this point leave the room, rustling in their paper robes), it looks like a cross-section of cauliflower florets, but with a texture like spam or tofu.

  With immense delicacy, Steve Gentleman carves the brain into thin slivers, laying them side by side along the surface.

  Here is the left hemisphere; here the right. Here is the hippocampus, named after the seahorse for its curled shape, where long-term memories are stored, and also the memory of objects and people. These holes aren’t really holes (there aren’t holes that our memories fall through), but shrinkages so that the ventricles become larger. Here at the stem is the crucial medulla oblongata, which controls involuntary functions (breathing, controlling blood pressure). This is the cerebellum, responsible for balance and for voluntary tasks (like reading and writing). Here’s the pons, the bridge between the upper and lower brain. This gluey blob that looks a bit like a white tadpole is the olfactory nerve. This is the amygdala, responsible for the memory of emotions, especially fear. Here is hunger; here is desire; here is speech; here is spatial awareness. Here is music, imagination, intuition, creativity, insight. Here is reasoning, logic, analytic thought. Here is damage. Look. The blade points. And here.

  Here is loss.

  * * *

  • • •

  Steve Gentleman (the name is accurate), Professor of Neuropathology in the Department of Medicine at Imperial College London, is a detective of the brain. He looks for disease, shrinkage, hollows, hardening, white lesions in the limbic system, amyloid deposits. I ask him if he ever feels – I struggle for a right word, can’t find it – odd about dissecting brains: odd because of what it tells us about identity, and because in the end all the urgent business of being human, all the despair, anxiety, appetite, terror, love and joy, resides in this piece of flesh.

  He smiles and shakes his head. He has no faith – perhaps it would be hard to if day after day you slice brains, scalpel out morsels of executive function, episodic memory – but he is full of wonder at how infinitely complex, subtle and plastic the brain is, and how it is still mysterious to us. Because, after all, we are not just our brain: our brain is in a body, is part of it and in the community. There’s no end to its possibilities.

  Alzheimer’s disease leads to nerve-cell death and tissue loss in the brain. Abnormalities include beta-amyloid plaques, tangles of the protein tau, loss of connection between the cells and inflammation. The cortex shrivels up and the ventricles grow larger. Over time the brain shrinks dramatically until every area is affected. Yet some brains, when dissected, show no sign of dementia even when the person has been diagnosed with the illness, while others are badly damaged even though the person seemed not to have shown signs of cognitive impairment. The link between observable deterioration in the brain and the way a person acts, feels and communicates in the world is not straightforward, and this is because the brain lives and works in a network of reciprocal connections. Looking at the brain cannot tell us all we need to know about the brain: it is so much more than itself – a brain in a body in a particular life. Part of Steve Gentleman’s research is to compare the brain that he observes with the lifestyle of the man or woman to whom it belonged, to seek out patterns that will begin to explain why it is that some people are swiftly demolished by the illness when others are able to withstand its attacks for longer. Exercise, diet, geography, career, mood, the state of a relationship: all these things may make a difference to the way a person responds to what is happening in the intricately folded labyrinths of the brain.

  The brain on its chopping board is inert, a lifeless beige thing, but neuro-images of the living brain display its fizzing connectivity, its marvel and mystery. Functional magnetic resonance imaging (fMRI) measures brain activity by detecting changes associated with blood flow. The images – still and moving – are like the Northern Lights, like coral reefs or trees in blossom, in kaleidoscopic flux. It may seem, looking at these iridescent patterns, that here’s a brain in love, in fear, in envy and in a clutch of hope. But brain-scan images are not straightforward photographs of the brain in action; they are representations of the areas that are working at their hardest. It’s a bit like looking at New York City from a helicopter and seeing how the crowds move through the streets: you learn a lot about the movement of people over time and in response to events, but you don’t really know what it’s like to be in New York. And the brain is not the mind.

  Nevertheless, the image of a brain damaged by dementia is dismaying: dead grey patches amid the glorious colour.

  * * *

  • • •

  ‘I do not like the term “dementia”.’

  I met Professor Martin Rossor in his room overlooking Queen Square in London, with windows from floor to ceiling. He is the National Institute for Health Research National Director for Dementia Research, Director of the Queen Square Dementia Biomedical Research Unit, Professor of Clinical Neurology and Consultant Neurologist at the National Hospital for Neurology and Neurosurgery. He’s tall and slim, with grey hair and a courteous manner. His cleverness is unintimidating; when he talked to me, he was pragmatic, precise and kind.

  ‘“Dementia” is a catch-all phrase. It’s powerful, but it’s unhelpful for clinicians and scientists. It just means cognitive impairment that’s so great that the person is badly affected.’ There is not a ‘uniform’ breakdown of the brain but ‘islands of breakdown’.

  Dementia is a syndrome. It describes a set of symptoms of impairment in memory, communication and thinking caused when the brain is damaged by disease and is an umbrella term for a great range of progressive conditions that affect the brain. As Martin Rossor was at pains to emphasize, there are multiple forms of dementia and so there are multiple indicators of the disease. Alzheimer’s is the dementia that people are most familiar with and accounts for over half of those affected by dementia. It is a neuro-degenerative disease that sweeps inexorably through the brain: the build-
up of tangles and sticky clumps known as plaques used to be thought the cause of brain dysfunction, but scientists now think they may instead be like ash after a fire. Alzheimer’s tends to develop gradually over time and is strongly associated with memory loss, poor concentration, confusion, the decline of everyday living skills. Other dementias – such as vascular dementia, which develops when arteries delivering blood to the brain become blocked, commonly after a stroke – frontotemporal dementia, or dementia with Lewy bodies, have different causes and different effects. Frontotemporal dementia, for instance, affects behaviour and personality, sometimes bringing about disinhibition, inappropriate social behaviour, anxiety, stress, even psychosis. And dementia can be a trigger for other mental-health conditions – such as depression – that can too easily be missed.

  Even within a particular form of dementia, there are huge variations. Martin Rossor used the example of Alzheimer’s: it commonly presents itself as loss of episodic memory and threatens the sense of selfhood that comes from a feeling of continuity between the you of ten or twenty years ago and the you of today. Yet there is a form of Alzheimer’s in which memory is largely preserved but visual processing is damaged. Colours extend beyond their boundaries; things seem upside down; you can’t locate objects; can’t find the door. Often people feel that they are standing at an angle. Or they see a small puddle and think it’s a hole. Or, standing at the top of an escalator, they stare down a gushing waterfall. Or reach out to grasp a handle that is in fact several metres away. ‘I had a friend who had dementia who would grip on to things very tightly: it wasn’t, as people assumed, resistive behaviour but because he thought he was falling.’

  There are a bewildering number of cognitive impairments that come under the umbrella term of ‘dementia’, in part because there are so many kinds of memory, as Steve Gentleman demonstrated with the tip of his knife. (In one book, I read that, at the last count, there were 256.) Take the loss of semantic memory, Professor Rossor said: frontotemporal dementia is a ‘horrible degenerative disease’ in which a person loses the memory of the ‘meaning of things’. Pick’s disease, on the other hand, brings about the loss of verbal memory.

  ‘Let’s imagine you have a verbal semantic memory impairment. You would remember coming here, crossing the square. You’d remember I wore spectacles for reading. But if I asked you what spectacles were, you’d have no idea what I was talking about.’ This incomprehension spreads until ‘there is no comprehension of the human word or any output of language’ – and with this pouring away of meaning, empathy will also go.

  Other people may lose the memory for visual semantics. They ‘understand the word “spectacles” but they have no idea what they are when they see them. They would know what a toothbrush was, but they might clean their teeth with the toothpaste tube. The world is breaking selectively around meanings.’

  Symptoms can encompass great areas of loss, or be viciously precise: for instance, there’s a dementia that can cause anosognosia, where people who are cortically blind nevertheless believe that they can see.

  I asked Martin Rossor if he believes that a self is ever wholly lost to the disease, and he pondered. ‘Perhaps when all empathy goes,’ he replied eventually. ‘Perhaps then.’

  I asked him – as I will ask all those I speak to who witness the ravages of the disease – if he was scared of dementia himself. He hesitated and then answered that he was not and looked slightly surprised at the answer.

  I asked what he makes of advance directives – the legal documents in which a person specifies what actions should be taken for their health if they can no longer make decisions for themselves because of illness or incapacity – for those who live with dementia. He nodded, frowned. ‘How can I dictate to my future self?’

  * * *

  • • •

  ‘Every death is terrible but we have to die. Your last years of life: how do you want to spend them? As the person you were or as a person who wouldn’t recognize that self any longer? Who takes their child for their brother or sister – at their good moments? My life is the life of a thinking person. That is me. If that ends, my body should also end . . . That’s why we made our living wills.’

  In a tall, lovely old house in Utrecht, gable-roofed and full of flowers, every wood-panelled room lined with books, rich yellow light falling through the high windows, Gerard de Vries and Pauline Terreehorst talk to me about their decision to appoint each other in their living wills as the one who – if necessary – will confirm to the doctor that they want to die in dignity, should the conditions they have specified in their living wills manifest themselves. She was once a newspaper journalist and columnist and is now a successful director of an arthouse movie theatre; he is a distinguished philosopher, recently retired, who used to advise the Dutch government in The Hague. They are calm, dispassionate, carefully precise as they talk about their arrangements, which are already in place. Assisted dying for patients who are enduring unbearable suffering with no prospect of improvement has been legal in the Netherlands since 2002, provided the doctor complies with the ‘due care’ conditions set by the law. Among other things, he or she has to be sure that the patient’s request for euthanasia is voluntary and well considered. Increasingly, it is acknowledged that not only physical but also mental suffering may be unbearable.

  Of course, it’s a controversial issue, regarded by many as the slippery slope that can end in the murder of the old – above all because of the issue of voluntariness. How can a person with dementia make an autonomous decision about ending their life?

  ‘There is no un-clarity,’ says Gerard firmly. ‘In the later stages of dementia, the notion of a “voluntary, well-considered decision” is void. So, the wish to die with dignity should have been articulated well before those stages, in the limited time slot between being diagnosed with Alzheimer’s and the stages in which one will have become mentally incapable.’

  ‘I am sure, quite sure, that I want this,’ adds Pauline. ‘Our life was and is the life of thought. When that goes, well – it’s no longer our life.’

  As we talk through the evening, sitting first in their living room, then over a meal in their kitchen (fish baked individually in foil, like little gifts), they pass the conversation about their end-of-life between each other, following threads, correcting any imprecision. They both have a dread of incapacitated and impaired old age, and in part this is because of their very different personal experience of it. Gerard’s father did not have dementia, but he had a serious stroke.

  ‘He lay there, unable to speak, but he clearly signalled non-verbally he wanted to go. The doctor provided palliative care and let him die.’

  His mother lived for many years more, her final ones in a home where she was well cared for, much visited, but her world was shrinking until, at some point, says Gerard, she must have thought, ‘We’re done here’. When, two weeks shy of her ninety-third birthday, she got pneumonia, she declared that she did not want to be treated.

  ‘She wasn’t depressed; she was clear in her mind. She said it to me and she said it to my brother and my sister: she was adamant that she had reached the end of her life and now was simply sitting, waiting to die. It was hard – but at no point did I try to make her change her mind. She was brave. And she died when she was still in control of her life.’

  She said her goodbyes – she told Pauline to take good care of Gerard, her boy. And then she slipped away.

  Both of Gerard’s parents decided when they were ready to go. Neither of Pauline’s parents did. When she talks about them she is tense with emotion. Time has not smoothed over the memories.

  Pauline’s father – with whom she had a complicated relationship after he and her mother divorced, although when she was little she adored him and he her – was sixty-five when he started showing signs of the illness. He was forgetting small things but was able to cope for a while. Bit by bit, he slipped through the stages of dementia.
He spent the last six or seven years in a nursing home – ‘an awful one’ – where he shared a room with another man.

  ‘He had nothing left,’ Pauline says. ‘There were just a few photos around his bed. And he was –’ She pauses. ‘A plant. I would say that, yes. He lay in bed. He could do nothing. His wife visited him; we visited him. It was a Christian nursing home. In some places, he would have been allowed to die, but there, life was sacred. He was nursed to the bitter end.’

  Pauline’s mother is still alive; in fact, she is in a home just a few minutes’ walk away from this house where we sit in the dusk, drinking wine. Her dementia started about ten years ago, although the symptoms were horribly muddled up with the difficulties in her marriage. Her third husband had suffered a stroke, which had changed his character. He could not cope with Pauline’s mother’s disease, her absent-mindedness; their final years together were filled with ugly minor quarrels, a sense of life tangling up and become disorderly. Pauline’s mother used to be a member of the Union for Euthanasia and had always insisted she would like to die before dementia took its grip on her. But the window of opportunity for such decisions is very small: she missed her chance and is now in the deep darkness of the illness.

  ‘It’s like she’s the living dead,’ says Pauline. ‘A long time ago, I lost her. I talk, and there’s no reaction. Sometimes, when she laughs, or something in the tone of her voice – then I recognize the way we were twenty years ago. You fill in the gaps and the memories. Then she leaves again. You say goodbye all the time.’