‘He was a man who used to notice such things’?
That poem puts the dead person beautifully in the past and shuts the gate behind him, but there was a sense during his funeral that our father was present: in the room, in our minds, our memories, our hearts. And he wasn’t demented any more, he wasn’t helpless and ashamed and scared and lost. He was smiling, strong, full of health. He was happy again. This was good grief, rich and full and clear, very different from the harrowing wretchedness of the past year.
Siegfried Sassoon once wrote to a bereaved friend, ‘You are rich in all you have lost.’ We are rich in all that we lose. The more we have, the more we lose; and the more we lose, the richer we are. Grief is a torment and a blessing.
* * *
• • •
So the old man in Alive Inside will swing around the lamp posts once more, taking his daughter to school.
So the old woman I saw lying slack in a hospital bed will also be the young woman in the photograph, standing hand in hand with her beau on a seashore, smiling.
So Denis East can pick up his violin again and play Mendelssohn and Bach and Beethoven’s Opus 131.
And Rebecca Myers’s mother can dance with her adoring husband again, and Rebecca can lay her head on her mother’s shoulder and tell all her troubles.
And Jenni Dutton’s mother can be knitted up, her face emerging from the skein of loose threads.
And Theresa Clarke can be Teasie, and the boys all want her to come and play football; and she will be at peace in her ashram, and at the source of the Ganges, where she always dreamed of going; and her mother can tell her she has the heart of a lion.
And Tommy Dunne will see his Joyce and think that the sun rises when she does.
And William Utermohlen can wander around the museums and art galleries of the world with the woman he loves, staring at paintings that he stores inside his head. And he can pick up his brush again. The scribbled face on a flat white background, the wild empty eyes and the nose like a beak of a bird, will transform. The anxious sadness will ebb away. Colours will seep back, and perspectives; walls will straighten and the vertigo of distress be banished. The lonely figure on the edge of a group, looking on, will sit at the table again, among the conversation and the laughter.
* * *
• • •
And my father can listen to the dawn chorus again. He can walk around his garden, watering the tomatoes in the greenhouse, pruning the roses and feeding the small brown songbirds. He can tie knots deftly and mend china so you can’t tell it was ever broken. Drive a car, read a map, sail a boat, solve a crossword clue, paint a watercolour landscape, fork the compost, tease his grandchildren, stare intently at an insect on a leaf, drink a glass of good red wine, dance the foxtrot again and the waltz, sing carols and folk songs, laugh with friends, light bonfires and look at stars, hold my mother’s hand, set going the grandfather clock that stands in the hall and hear the steady tick of time passing, close the curtains and turn off the lights, blow out the candles, walk up the stairs and climb into bed, say goodnight and close his eyes, dream his dreams.
So many selves that death releases back into the world; ghosts that do not haunt us but accompany us, or we accompany them, as we go towards our own endless night.
The bright day is done. We all come to darkness.
To reach the end. To end with love.
NOTES ON SOURCES
‘Abyss has no Biographer’: from Emily Dickinson’s letters (‘To attempt to speak of what has been, would be impossible. Abyss has no Biographer’), quoted by Lyndall Gordon in Lives Like Loaded Guns: Emily Dickinson and Her Family’s Feuds, p. 7
Beginnings
‘Oh the mind, mind has mountains . . .’: from one of Gerard Manley Hopkins’s great Sonnets of Desolation, ‘No Worst’, in Poems and Prose (London: Everyman’s Library, 1995):
O the mind, mind has mountains; cliffs of fall
Frightful, sheer, no-man-fathomed. Hold them cheap
May who ne’er hung there . . .
‘disease of the century’: from the Introduction to Dementia and Ageing: Ethics, Values and Policy Choices, ed. Robert H. Binstock, Stephen G. Post and Peter J. Whitehouse, p. ix
‘the story of suffering’: from ‘Seeing and Knowing Dementia’, by David H. Smith, in Dementia and Ageing: Ethics, Values and Policy Choices, p. 49
Dementia is . . . ‘profoundly disrespectful of patients, carers, health systems, social care . . . it doesn’t fit into the structures we’ve created’: from my interview with Professor Sube Banerjee, Professor of Dementia and Associate Dean at Brighton and Sussex Medical School
The world ‘is given to us in common’: from an interview with Judith Butler in the Other Journal, issue 27, 26 June 2017
This page: Mary Warnock made her remark in the Church of Scotland’s Life and Work magazine, as reported in, for example, Telegraph, 18 September 2008
‘the endurance of the soul’: from Atul Gawande’s Being Mortal, p. 231
Dante’s image of a boat lowering its sails (‘to furl our sail and take our rigging in’): from The Divine Comedy, Inferno, Canto 27, ll. 79–81
This page: Sally Magnusson uses the image of a boat going into the mist in her memoir, Where Memories Go: Why Dementia Changes Everything, p. 91
‘a sailing vessel that is becalmed . . .’: from Out of Mind by J. Bernlef, p. 54
This page: Erwin Mortier’s desolating and beautiful Stammered Songbook is made of metaphors and is in part about the impossibility of language to capture its own disintegration. For the metaphors quoted here, see pp. 10, 11, 19, 50, 65, 107 . . .
‘To be human is to have a voice’: the ethicist Carol Gilligan eloquently articulates the central meaning of the human voice in her important book, In a Different Voice: Psychological Theory and Women’s Development
‘I write partly to make a confession’: Oliver Sacks made this remark in an interview with Drouwe Draaisma, Professor of the History of Psychology at the University of Groningen, in the Netherlands. It is quoted in Draaisma’s The Nostalgia Factory: Memory, Time and Ageing, p. 112
To write is to ask for forgiveness: the French philosopher Jacques Derrida wrote extensively (and influentially) about death, mourning and forgiveness. Whereas Freud viewed mourning as normalizing work, a journey through grief to relinquishment and consolation, for Derrida it is a great, always unfinished work in which we continue to talk to the dead. See, for example, his Adieu to Emmanuel Levinas, or Nicholas Royle’s discussion in In Memory of Jacques Derrida
1. Facing Up
‘I am! yet what I am none cares or knows’: ‘I Am!’ by John Clare, from John Clare
This page: The acronym ‘GOMERs’ was first coined by the pseudonymous American doctor Samuel Shen in his 1978 novel House of God
This page: For the story about the ninety-five-year-old man who tried to kill his wife, see, for example, the Guardian, 25 April 2017
Dementia . . .‘seriously jeopardizes the faculties we ordinarily define as uniquely human . . .’: from Robert N. Butler’s Foreword to Dementia and Ageing: Ethics, Values and Policy Choices, ed. Robert H. Binstock, Stephen G. Post and Peter J. Whitehouse
‘What it is that dementia takes away? . . .’: from Andrea Gillies’s Keeper, p. 11
2. Getting Older
‘Oldness has come . . . the heart is forgetful’: from an Ancient Egyptian scroll, quoted by Carmelo Aquilino and Julian C. Hughes in their essay, ‘The Return of the Living Dead’, in Dementia: Mind, Meaning and the Person, ed. Julian C. Hughes, Stephen J. Louw and Stephen R. Sabat, p. 143
‘you will be old for longer than you were ever young’: from Drouwe Draaisma’s The Nostalgia Factory: Memory, Time and Ageing, p. 6
This page: The statistics on population ageing are taken from the UN Report, ‘World Population Ageing 2015’, the UN Department of Economic and Social Affairs, Popu
lation Division New York
‘them’ rather than ‘us’: see Simone de Beauvoir’s Old Age
‘temporal vertigo’: from Lynne Segal’s Out of Time: The Pleasures and Perils of Ageing, p. 4
‘the contradiction between inner and outer of a different order to anything we have previously faced’: from Helen Small’s The Long Life, p. 12
Montaigne’s ‘special favour’ and ‘privilege’: quoted by Helen Small in The Long Life, p. 2
‘Please, please, don’t talk about old age so much . . . You are giving me the creeps! . . .’: from Words in Air: The Complete Correspondence between Elizabeth Bishop and Robert Lowell, p. 779. Elizabeth Bishop was only sixty-three when she wrote this, and Lowell fifty-eight!
‘alacrity’: quoted by Helen Small in The Long Life, p. 2
‘abundance’: see Annie Dillard’s book of that name
‘touch the ceiling’: from Words in Air: The Complete Correspondence between Elizabeth Bishop and Robert Lowell, p. 681
‘The story of ageing is the story of our parts . . .’: from Atul Gawande’s Being Mortal, p. 29
‘something is not quite right’: from Drouwe Draaisma’s The Nostalgia Factory: Memory, Time and Ageing, p. 1
This page: Tad Friend’s article, ‘Silicon Valley’s Quest to Live Forever’ appeared in the New Yorker issue of 3 April 2017
This page: Ezekiel Emanuel wrote about his decision to receive only palliative treatment beyond the age of seventy-five in the Atlantic in October 2014
‘The body ages. The body is preparing to die . . .’: from John Berger’s And our faces, my heart, brief as photos, p. 36
3. The Brain, the Mind and the Self
‘the marvel of consciousness . . .’: Vladimir Nabokov, quoted in Brian Boyd’s Vladimir Nabokov: The Russian Years, p. 11
This page: Drouwe Draaisma gives the figure of 256 in The Nostalgia Factory: Memory, Time and Ageing, p. 33
‘transient electrochemical dance, made of myriad bits of information’: from Henry Marsh’s Admissions, p. 267
This page: For the full story of the life and death of Sandy Bem, see the long piece in the New York Times, 15 May 2015
This page: Peter Singer’s list of indicators for personhood, as given in Stephen G. Post’s The Moral Challenge of Alzheimer’s Disease, p. 15
‘Neither cogito (I think) nor ergo (therefore) but sum: I am’: ibid., p. 3
‘the socially outcast, the unwanted, the marginalized and the oppressed’: ibid.
4. Memory and Forgetting
‘All this goes on inside me, in the vast cloisters of my memory . . . ’: from St Augustine’s Confessions, p. 215
‘Life without memory is no life at all’: from Luis Buñuel’s autobiography, My Last Breath, pp. 4–5. At the end of her life, Buñuel’s mother had no memory left, and the fuller extract reads: ‘to begin to lose your memory, if only in bits and pieces, [is] to realize that memory is what makes our lives. Life without memory is no life at all . . . our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.’
‘the world glides through you without leaving a trace’: from J. Bernlef’s Out of Mind, p. 41
The ‘permastore’ of long-term memory: from Drouwe Draaisma’s The Nostalgia Factory: Memory, Time and Ageing, p. x
This page: For the many metaphors of storage, see Charles Fernyhough’s Pieces of Light: The New Science of Memory, p. 6
‘If only this could be your memory . . .’: from Drouwe Draaisma’s Forgetting: Myths, Perils and Compensations, p. 1
Memory is an ‘an activity, not a vault . . . a process not a place’ and ‘like an orchestra’: from Andrea Gillies’s Keeper, p. 228
memory is ‘a seamstress, a capricious one at that . . .’: from Virginia Woolf’s Orlando, p. 49
‘there are no “read only” files’: from Drouwe Draaisma’s Forgetting: Myths, Perils and Compensations, p. 8
forgetting as the ‘minus sign . . .’, and the lack of a verbal equivalent of memory: ibid, p. 1
This page: For an account of HSAM, see the long article in the Guardian, 8 February 2017
the ‘garbage heap’ of memory, from ‘Funes the Memorious,’ in The Total Library: Non-fictions, 1922–1986, by Jorge Luis Borges, p. 96
This page: Patrice Polini’s psychoanalytic analysis of Utermohlen’s art is found in his essay ‘Conveying the Experience of Alzheimer’s Disease through Art: The Later Paintings of William Utermohlen’, from Looking into Later Life, ed. Rachel Davenhill, pp. 298–318
5. The Diagnosis
‘We have heard the chimes at midnight’: from Henry IV, Part 2
This page: Michael Kinsley wrote his defence of denial in Time Magazine, 9 December 2004
‘courage to be’: from Stephen G. Post’s The Moral Challenge of Alzheimer’s Disease, p. 1
6. Shame
‘Pray, do not mock me . . .’: from King Lear, Act IV, Scene vii
‘crucial part of self-respect is respect in the eyes of others . . .’: from ‘A Critical View of Ethical Dilemmas’ by Harry Moody, in Dementia and Ageing: Ethics, Values and Policy Choices, ed. Robert H. Binstock, Stephen G. Post and Peter J. Whitehouse, p. 90
‘sound in oneself of the voice of judgement’: from Bernard Williams’s Shame and Necessity, p. 89
‘that of being seen, inappropriately . . .’: ibid., p. 78
‘The other sees all of me, and all through me . . .’: ibid., p. 89
This page: For an exploration of the connection between shame and death, see Carl Schneider’s Shame, Exposure and Privacy
‘The contradiction between inner and outer . . .’: from Helen Small’s The Long Life, p. 12
7. The Carers
‘How far that little candle throws his beam’: from The Merchant of Venice, Act V, Scene 1
This page: The statistics on carers are taken from Carers UK, ‘Facts about Carers 2015’; Alzheimer’s Research UK’s Dementia Statistics Hub, ‘Impact on Carers’, 2015; and the Family Care Giver Alliance, ‘Caregiver Statistics: Demographics,’ 2016
This page: Frédéric Compain’s short and beautiful film is called William Utermohlen: Vision intérieure de la maladie d’Alzheimer
‘She has possessed me and I am diminished’: from Andrea Gillies’s Keeper, p. 237
This page: Sally Gadow is quoted by Richard J. Martin and Stephen G. Post in ‘Human Dignity, Dementia and the Basis of Caregiving’, from Dementia and Ageing: Ethics, Values, and Policy Choices, ed. Robert H. Binstock, Stephen G. Post and Peter J. Whitehouse, p. 57
This account of Jane English’s question ‘What do children owe their parents?’ is taken from ‘Human Dignity, Dementia and the Basis of Caregiving’ by Richard J. Martin and Stephen G. Post, in Dementia and Ageing: Ethics, Values and Policy Choices, ed. Robert H. Binstock, Stephen G. Post and Peter J. Whitehouse, p. 60
filial obligation can serve as a ‘maleficent ideological warrant for the destruction of daughters’: ibid., p. 61
8. Connecting through the Arts
‘And hand in hand, on the edge of the sand . . .’: ‘The Owl and the Pussycat’ by Edward Lear, in The Complete Nonsense of Edward Lear
9. Home
‘You can go home again . . .’: from Ursula Le Guin’s The Dispossessed, p. 48
Home is ‘at the heart of the real’; to be ‘shelterless . . . undoing the very meaning of the world . . .’: Mircea Eliade, quoted by John Berger in And our faces, my heart, brief as photos, pp. 55–6
‘the raw material of repetitions turned into a shelter’, memory as the ‘mortar that binds the improvised home together’, ‘return to where distance did not yet count’: ibid., p. 64
‘a precise and uncomplicated conviction the world was available to me . . .’: from Hisam Matar’s The Return: Fathers, Sons and the Land in Between, p. 126
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sp; This page: These statistics about abuse are taken from the Nursing Home Abuse Guide
This page: For the statistics of elderly abuse by carers in the UK see, for example, the Telegraph, 28 February 2017, or the Guardian, 2 March 2017
‘We end up with institutions that address any number of societal goals . . .’: from Atul Gawande’s Being Mortal, p. 77
‘we shall not cease from exploration . . .’: T. S. Eliot’s Four Quartets, ‘Little Gidding’, Part V
‘searing’ homesickness for the site of ‘psychic security’, ‘abandonment and dread’: from ‘Only Connect’ by Margot Waddell, in Looking into Later Life: A Psychoanalytic Approach to Depression and Dementia in Old Age, ed. Rachel Davenhill, pp. 194–5
This page: At death, men apparently long for their mother; women for the time when they were the mothers of young children: from Drouwe Draaisma’s The Nostalgia Factory: Memory, Time and Ageing
10. The Later Stages
‘I’m all these words, all these strangers . . .’: The Unnameable by Samuel Beckett, p. 104
This page: Atul Gawande’s article was in the issue of 30 March 2009
12. At the End
‘We possess art lest we perish of the truth’: fragment 822, Book 3 of Nietzsche’s Will to Power
‘To have a voice is to be human . . .’: from Carol Gilligan’s In a Different Voice: Psychological Theory and Women’s Development, p. xvi
‘they are ignorant of self . . .’: from Helen Small’s discussion of Ronald Dworkin in The Long Life, p. 130
‘I–Thou’. ‘Speech does not reside in man . . .’: from ‘Seeing Whole’, the opening essay by Julian C. Hughes, Stephen J. Louw and Steven R. Sabat, in Dementia: Mind, Meaning and the Person, p. 26
‘ruins of grammar . . .’ from ‘The Hard Words’; ‘forever in my mouth/ and forgetting’ from ‘Left Brain’; ‘dirty taste of gone’ from ‘Right Brain’: all from Sarah Hesketh’s The Hard Word Box
This page: This account of Swift’s last years and of his death comes from John Gray’s article in the New Statesman, 14 November 2016
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