She went to a course that promised ‘powerful tools’ that would help carers – and it turned out that really the most powerful tool was simply: ‘Do something for yourself, every day.’ The thing that she chooses to do for herself is to go to the library. She also goes to an Italian class and she continues to write, although the hours that belong to her are increasingly rare. ‘But sometimes, when I walk out of the door, I feel as if I’m handing Reeve over: “You take over, Nanny.” That doesn’t feel good. But if I didn’t do it, I’d be wholly absorbed in that world. And I mustn’t be.’
Her father had dementia at the end of his life. He was a ‘very difficult man, and his dementia made him more so’. Her mother had a terrible time of it and then she ‘dumped’ him in a home. ‘The cruelty was desperation. She was trying to save her own life. I don’t ever want to become so desperate that I would be cruel like that.’
So she acts with care and thought, is not reckless or self-destructive, trying against the grain of her character to be patient, trying always to be kind although acutely aware of the frustrations and the diminishing returns of intimacy. She is making sure her commitment is sustainable and durable, portioning out her time and her energy. ‘And I still have him. My loss is not a mourning so much as a letting go – of the past, of opportunities. It’s very painful. Now I know that I have to move ahead and do those things alone that we had planned to do together.’
A few months later Mary wrote me an email from Italy, where she was doing a month-long academic-writing residency. She had postponed and then almost cancelled the long-planned and eagerly anticipated trip that they had originally been going to make together, until her husband fractured his hip. She had agonized about leaving him, even though he had accepted he would be well cared for by their son. And at last, after all the postponements, the anxieties and doubts, she arrived and could sit and look out at the sea, hear the waves pounding the cliff, write and think and feel. It was like ‘a long draught of cold water, opening up my mental horizons, with the space and time to think; intensely creative space . . .’ she writes. ‘I feel as if I’ve regained my own life and mind.’
Yes, she is acutely aware that she regains her life by – briefly – absenting herself from his. She knows that she is someone who has held on to not being paired, part of a duo: she has travelled on her own, done her own things, ‘reserved (not preserved, reserved)’ aspects of her own life. ‘Maybe it’s a lifesaver, but it’s also been a problem.’ Because the carer of someone with dementia lives between two grave dangers: of withdrawing in order to protect the self, and of becoming extinguished by the needs of the dependent other.
To have one’s own life back, if only for a while; to care and yet to psychically survive. How much should one give? Everything? One’s whole self? It’s always too much; it’s never enough.
* * *
• • •
The second woman prefers to remain anonymous. I had never met her before I went to talk to her about her experience of being the carer for her husband, who has dementia, but I felt that I had – or at least felt that she had spoken to me – because I had read and re-read much of what she had written over a long and rich academic career. I love the way she can open doors on to ideas and thoughts that had seemed inaccessible, make connections between things that had seemed unconnected but which under her guidance spring into new life; the way she can think feelingly. Also, she is – like Mary Jacobus – a woman who has thought much about the passing of time, about death, about what it is to be a woman, with a woman’s voice, and what it is to be silenced.
She and her husband live in a lovely house with a large garden where spring is just beginning to show, buds pushing through and colour returning. She is in her early eighties now, though age has not dimmed her clarity. We sit in the kitchen, the heart of the house, where there are objects everywhere: books and papers and games and high chairs (she has grandchildren) and mugs and flowers; paintings on the walls: a pile-up of domestic pleasures, of things you look at, read, use. Before we talk and after, I meet her husband, who is thin, a bit stooped, with a lined and nervous face, a kind smile and a courteous manner. He shakes my hand, welcomes me. In his time, he too has been a distinguished academic and writer: he has lived for most of his life in his head. They have been married for over fifty years and have three children. It feels obvious to me, sitting in this place of hospitality and warmth, that they have built up a good life together.
At the beginning of 2016 he had a planned operation for an aneurism that was worrying him. Now of course, with the curse of hindsight, she wishes he had not had it. He was old, he had slowed down somewhat, but he was still functioning and he had just started writing a new book. Later, one of the psychiatrists they saw asked if perhaps there had been a brief stoppage of blood to the brain during the operation. ‘Well,’ she says, ‘I’ve no will to enquire.’
Whatever the reason, the onset of his dementia was sudden. When he first came home he was more or less all right but quite quickly became very confused and his speech was slurred. After that he was in and out of hospital with urinary infections, and he contracted C. difficile, an infection most often spread in hospital whose symptoms include diarrhoea and nausea. ‘By March he was in a really bad way, both physically and cognitively. His speech was so incoherent I rang the doctors and got an emergency assessment: they discovered his kidneys were shutting down. He was put on a drip and returned to a reasonable state. But he was enfeebled. At the beginning of this decline, he would sometimes ask: “What is our future?” and “What is going to become of us?” There was one particular day when he showed that he foresaw his future. Now, he can’t read. He can’t write. He can’t follow a narrative. He can’t watch DVDs. He can’t go to the cinema. He’s so hampered.’
When she looks back she can see that there were signs of cognitive impairment two or three years before he had his operation. He no longer enjoyed going to the cinema because he could no longer ‘follow the syntax’ of a film. When he had his diagnosis, in March 2016, his previous difficulties were disclosed. ‘I think he perhaps compensated for them to a degree nobody had understood. Or why had it come so very quickly?’ She grimaces. ‘And his tax affairs. Aaaargh!’
She talks with a tender respect of her husband, kindly and with sadness. She is looking back over a long life together, talking always of what used to be. ‘He was always very calm and quite silent. You’d have to get through that to know him. If he knew himself what was happening in those years, he didn’t indicate it. He was conscious, however, that his long career was in a slow downward arc.’
When he was diagnosed, first in hospital and then at home, he seemed to take no notice at all. She doesn’t use the word ‘dementia’ very much (their Dancing with Dementia class is just their dancing class), and she talks to him of ‘an illness you’ve got that makes it difficult to see how things hang together’. He is no longer continent but seems unperturbed by that – ‘he has dissociated. He has coped with shame by making these dissociations and, actually, it’s rather successful for him. If I get frustrated he says: “I don’t know what you’re talking about.” He’s blocked that whole side off.’
This dissociation goes very deep. ‘He has always been very good at it. He has lived so much in his mind. He has been a very devoted writer. All his life, he wrote almost every day. Now he never goes to his writing shed. He doesn’t even look at it. I don’t think it’s conscious, but when he is in the garden he does not glance to the left as he passes it. He has lost that part of his life and he never talks of it. Never.’
A carer comes in the morning to shower and dress him, and again in the evening to wash and undress him. All the rest is her. ‘A friend reads to him, but he drifts off to sleep. Music is the thing – he listens to CDs all day long: Schubert, Beethoven quartets, Bach. Mostly chamber music. As soon as one ends he goes on to the next. The grandchildren are a gift: the two-year-old can get through to him: that im
mediacy is still there. He is polite; he still has a social presence. He still talks a bit, although he has to be prompted all the time. He still laughs. But sometimes he must think he’s lost. He is baffled, and he says, “I don’t know what’s going on. I don’t know what this is all about.” And once the carer said to him, “Are you OK?” and he said, “No.”’
All this time, sitting in her kitchen with mugs of coffee and outside the day brightening in the garden, she has talked of him and never of herself: the wife of over fifty years who has become the carer. I ask her how she manages.
‘I’m not sleeping much,’ she says mildly. ‘He has this habit of poking me. We still sleep in the same bed; we always have done. The most difficult thing is not feeling any physical pleasure, any easy closeness, always having to work at it – because I have other functions now. I’m cleaning him, cooking for us, making arrangements. We were always equal partners.’ (I think how painful the past tense is: something irrecoverably gone.) ‘Domestic life was very important to us. And we always had a reciprocal relationship. Once, we travelled the world together, visiting other universities, sometimes as the principal and sometimes as the spouse. There was equality. I think of all the things we will never do together again: the theatres, the concerts, the holidays.’
Like Mary Jacobus, she is conscious of needing to hold on to the things in her old life that are precious to her. Although she turns down invitations all the time, she does try to do the things that matter most. (She has just done a ‘radical thing’ and booked two tickets to the opera.) But she doubts if she will ever write a book again.
Her daughter-in-law said to her recently: ‘What if it had been the other way round?’ ‘If it had been the other way round, I would have gone into a home. It wouldn’t have been feasible for him to do for me what I’m doing for him. I think about that.’
Now she knows that the time might be coming when she will no longer be able to continue as his sole carer and her husband will have to go into a home. ‘People say he might enjoy it, and the two of us might be able to enjoy time together, if it wasn’t twenty-four hours a day.’ She tells me of a recent episode when her husband had a terrible seizure. She thought that he was dying. The ambulance arrived, blue lights flashing, and took him to hospital. He was there for a week and ‘I had the experience of “another life”’, which was in fact like the life she used to possess. ‘I got up when I wanted. There were no carers in the house. I thought: “God, there is all that world out there still.” I went to two lectures, to a concert. It was like Mephistopheles saying, “All the world is yours.” You only have to reach out and grasp it. And then I have a moral reaction: should I?’ There is always guilt.
I ask her if she feels she has lost him and she pauses and considers. ‘I’m losing him in the sense that I’m turning into someone closer to his mother – and he didn’t get on particularly well with his mother! He was always trying to escape her. I am chivvying him. I’m getting him to do things he doesn’t want to do. My own mother also had dementia at the end of her life. I was deeply affected when friends of hers said that the real woman had vanished. I thought, “No! She is still my mother. She is still that person.” Most of her memory had evaporated or become skewed and partial, and in a sense they were giving themselves permission to sign off on her. But it wasn’t true. She was still there. Somewhere.’
Her husband is still there and will always be still there. Somewhere. ‘The personhood of a person persists past coherence and past logic. It is in our frame; inside of ourselves.’
We have to be able to bear sorrow – not to turn away from it, nor to absorb it or enter into it, but to bear it. Sorrow is a heavy weight.
* * *
• • •
‘I’ve come past despair,’ says Pat Utermohlen’s good friend Disie Johnson, who is the sole carer for her husband. ‘I have been absolutely despairing. I tried and I tried to keep the person he once was. Now I don’t. I’ve accepted the new one. I’m at a plateau of acceptance, although recently I’ve started not to enjoy his company. In a way, acceptance is a defeat. I guess the disease has won.’ Her husband is, however, ‘very happy. I suppose I’m one of the lucky ones. He’s in a state of bliss! I seem to be keeping him in ecstasy.’ Disie feels ‘completely surrounded’ by the illness: her ‘almost-mother’ is in a home with advanced dementia. Her brother and ‘greatest pal’ has early-onset dementia: not yet seventy, he lies in bed, immobile, his eyes closed, alive and not alive. She talks about her feelings with candour and spirit. She wants to behave properly and she also wants to survive.
For both her and her husband, it was their second marriage, ‘unbelievably happy and successful’ after their ‘disastrous’ first ones. He was an economist, an ecologist, a talented amateur painter; handsome, great fun, clever, extroverted, full of conversation and energy. ‘We married as soon as we met, we adored each other and we were –’ She hesitates, not wanting to sound vain. ‘I guess we were a bit of a golden couple for a while.’ He was diagnosed when he was seventy-three, when they were living in Italy. Their world – all their plans for the future – was ruptured. ‘If he had known what was to become of him he would have –’ She slices her hand across her throat. ‘Early on he would sometimes say, “Something is wrong; something is terribly, terribly wrong.” But now he has absolutely no perception of the seriousness of the situation. He has no connection whatsoever to his dementia. If he sees a programme on television about it, he’ll say, “Oh, the poor things.” People come in and look after him occasionally, but he has no idea why. He gets a bit worried that I’m having to make all these decisions: “Darling, what can I do to help you?” he’ll say. Or, “Darling, do let me carry that case.” Or: “Darling, can I come too?” He’s always been quite dependent on me – I think women have spoilt him throughout his life – and now he’s completely dependent. He says: “You’re so good to me; I know it must be a bore . . .” I think he’s entirely forgotten the person that he used to be. He loves going to bed: he gets in and he says, “This is heaven.” He says he wants to live until he is ninety.’
They used to talk all the time, and her husband was a ‘man of great richness of language’; now he uses stock phrases or doesn’t talk at all. ‘There’s no chat in our lives any more. That’s almost the hardest thing: it’s gone. There’s silence – and thank God for Radio 4. And music.’ They have a roof terrace in their tiny London flat that she has filled with flowers, and they can look out at red London buses, at trees just now coming into leaf. He sits there and listens to Monteverdi and she reads him poetry and he feels very contented. He has a state-provided carer for one three-hour session a week and anything extra has to be paid for. ‘I go out as much as I can. I have to. I have to. Do I shout? Of course I shout! And he just smiles at me lovingly says, “Come and sit with me, my darling.” He doesn’t like me to be at home and not with him. It’s oppressive. But we still laugh – about his memory, about the way I shout at him, everything. And I think: “If only this was as funny as you think.”’
She glares at me: ‘I’m jealous,’ she says. ‘That’s the truth of it. I’m jealous of friends, of the ones who go out whenever they want, of all my contemporaries. I am not living a normal life; there’s nothing normal about it, except the carapace you put around yourself. None of my friends really accompany us through it. People like us are shut out from ordinary life. And of course you resent it. Heidegger said that boredom is when you sense the passage of time – passing time. How could you want that? What life is that?’
She smiles wryly and drinks some of her wine, adding: ‘The problem is that he is so very happy – though he doesn’t say that, he says, “I am the happiest of men” – and I, well, I am the most miserable.’ She sets down her wine. She has a beautiful, strong face; of course they were a golden couple, the world at their feet. ‘Miserable and exhausted and desperate. Disjunction is the name of the game.’
Disie is formidable and she
is kind. She has undertaken this hard task and is determined to do it well and see it through. At the same time, she knows her own limits and she mocks herself and her failures, mimicking her politely furious voice when she gets impatient (she never mocks or mimics her husband): ‘“Darling, get up . . . Darling, could you get up? Darling, I’ve brought you tea . . . Darling, you haven’t drunk your tea . . . Darling, what about getting up now? . . . Darling, change your pants . . . You need to change your pants . . . They’re under the basin . . . Darling, you haven’t changed them . . .” An hour and a half later it’s still going on and for God’s sake.’ She will not be swallowed up by the role of carer. ‘Brain work,’ she says. ‘That’s the thing.’ She goes to opera courses, language classes, Pat Utermohlen’s art classes; she sees friends. When she is at home she gives herself a set of rituals – cooking something nice for lunch and dinner for them both, making their flat pleasant, reciting poetry to her husband, hearing her own voice echo in the silence she has come to dread. She tries to hold the sorrow and the anger and the fear at bay, but every so often she admits to a sense of isolation and hopelessness. She is scared of her own ability to remain equable, scared of losing him even more, this man who she loved so much; loves. ‘Which of course I will.’
‘I don’t remember if I shouted at Bill.’ Says Patricia Utermohlen quietly. There’s a small pause. She adds: ‘I don’t want to remember.’
The Last Ocean Page 13