Six years after his diagnosis, my father is a husk. He can no longer speak intelligibly. He barely opens his eyes to sip from a cup or be fed. He is incontinent and wears pads. He drools from his medication. His utterances are gobbledegook, mostly noises, sometimes rising in volume and resembling the revving of a car engine. When he sees me, sometimes these incoherent sounds become more urgent and deliberate, as if he is straining to say something important. He grips my hand, crushing my knuckles. From the cadence of these unformed utterances I recognise that he is asking me about money, the urgency of his tone exactly the same as it would have been when he could articulate concern about my use of credit cards and levels of debt.
Once I left home, the opening gambit of our conversations was never ‘How are you?’ but ‘How’s your bank balance?’ or ‘How’s the mortgage?’ or ‘Have you paid off your credit card?’ Instead of praise for anything I had published he would say, ‘I hope they paid you well.’
When I was a student and first began managing the monthly allowance my father gave me, he required me to undertake an audit whenever I came back to London. I was expected to show evidence that I could balance my chequebook, presenting the stubs for scrutiny just as I had once had to present my bitten nails. If I overspent he would quote Polonius from Hamlet—‘Neither a borrower nor a lender be’—and chastise me. Then, once I promised to do better, he would top up my account. There were annual lessons in budgeting that I tuned out of with showy yawns, resenting these demonstrations of control. Later, he signed me up to investment policies I did not request, committing me to long-terms saving plans without consulting me. I protested his interference by pretending to be cavalier about earning and spending.
My mother was totally financially dependent on him. Until my father became demented she had never used her credit card to pay for a meal. Now in her eighties, she was suddenly forced to disentangle his complicated arrangements and multiple squirrelling of gold coins here, bonds there. My father’s savings were byzantine in their complexity and scattered through dozens of different portfolios. Partly due to bad luck, they yielded disappointingly little for all his efforts, his dream of wealth and of passing on a large sum never realised. He knew this before his health failed him, and it was the cause of gnawing bitterness and corrosive regret. If one word were to sum up the second half of my father’s life, it would be ‘disappointment’.
My mother’s unflagging devotion to the shell of her husband earns the admiration of the carers at Nightingale House. She visits every second day without fail, greeting my father with a cheery ‘Hello, HB’ though he fails to acknowledge her in any way. She combs my father’s few remaining strands of hair, kissing his forehead, holding and stroking his hand, feeding him, making a fuss when he has not been shaved or dressed by lunchtime or is wearing someone else’s clothes. She is ferociously vigilant of his dignity, and vocal about any aspects of his care that are neglected or substandard. Always searching for a way to unlock my father, she reads all the literature on the latest research into dementia and buys him a soft toy to cuddle, hoping it might give him pleasure. It soon falls from his lap, but she tucks it back into the crook of his elbow, over and over again, lifting his hand to stroke its synthetic coat.
It is soul-destroying to watch and is taking its toll on her. She is increasingly frail, fearful, frugal and yet still capable of moments of ferocity on my father’s behalf, like a tigress suddenly roused to snarling anger in defence of her cubs. Her world has shrunk to the scale of necessity, reduced to bare basics. In moments of devastating candour, she admits that she is lonely and has no confidence socially. She joins a carers’ support group in the hope of meeting people in similar circumstances. I admire her bravery and praise her for venturing out on this late quest. A few months later she is jubilant on Skype, announcing with great pride that she has made a friend and cannot wait for me to meet her. The implied need for approval in her voice echoes my own, many years before.
I think back to her petty jealousy of my friends when they got too close and threatened to steal me from her. Her dislikes were sudden, irrational and ferocious. One minute she was enthusiastic about Sabine, a sparky, outgoing girl I met at university, because she was French: she enjoyed hearing her language being well spoken by a compatriot from a cultured Parisian family; it soothed her homesickness to compare notes with Sabine about Britain’s failings and strange customs; they bonded over shared frustrations, such as the lack of minced veal at British butchers. But then, one holiday, when Sabine came to stay and her large, boisterous personality filled the house (and for once, charmed my father), my mother announced without warning that Sabine would have to leave, immediately. She could not stand to have her in the house one second longer. Going upstairs to tell Sabine, whose family had extended open-ended hospitality to me in Paris on several occasions, that she was no longer welcome and must pack her bags was one of the most awkward moments of my life. Now I ask myself why I didn’t refuse point-blank to do my mother’s bidding or tell her to do it herself. Why I didn’t march out of the house with my friend and not come back? I was too compliant, like a Stockholm syndrome hostage.
My friendship with Sabine survived, strengthened by her forgiving nature and persistent efforts to win my mother over. Ten years later, in tears, my mother apologised for her juvenile jealousy. Her pride had been wounded when Sabine teased her about her French being out of date, and she had lashed out in revenge.
I am determined to like any friend my mother makes. I watch with almost parental delight as this fellow carer becomes her confidante. At the age of eighty-three, she is discovering that it can be more fun to go to the cinema with someone than on your own and that going out for a pizza can be the highlight of your week.
As a long-term resident of the nursing home, my father is one of the first to be moved to a new wing and given a brighter, more spacious room with a view of the gardens to which he never looks out. It is the equivalent of an upgrade to a suite in a posh hotel.
‘He won’t notice,’ says my mother with a shrug.
From the very beginning of my father’s institutional life, she has refused to bring anything personal from home to decorate his walls and shelves in case it gets stolen by other wandering residents. As a result, his bedroom is bare and spartan by comparison with those of others, whose families have brought in cushions, furniture, photographs and tchotchkes to add homey cheer and personality to counter the nursing-home decor. She tracks his few possessions with the fervour of a drug sniffer dog, retrieving them triumphantly from other rooms and constantly sewing name tags into new clothes, as if sending him off to boarding school, fearful lest one sock go missing.
Now, there is to be a memory box outside each room, to give a sense of each resident’s identity and interests. A small lockable perspex container with a single shelf and a light so that its contents can be clearly seen even at night. My mother struggles to find things to put in it, worrying that they will be misplaced.
‘I’m not sure it’s secure,’ she says, as if a safe or strongbox were preferable for his few modest possessions.
I come up with a list of objects of little or no value, to illustrate my father’s few tangible enthusiasms.
‘What about a Toblerone, the giant ones he liked to buy in bulk?’ I suggest via our daily Skype call, remembering the way he could eat a whole block in one sitting.
‘He has no teeth anymore.’
‘No, I mean just the packaging.’
‘Maybe …’ she says, resistant to any purchase.
‘And a CD of one of his favourites, Bach or Beethoven?’
‘He never played them, he didn’t know how to turn on the machine. And besides, someone will pinch the disc.’
‘Well, just the box then,’ I say encouragingly.
‘Or a photograph of us at Buckingham Palace when he got his MBE?’
I wonder if that was his proudest day. At lunch afterwards in a restaurant on Park Lane in his pale-grey morning suit, his top hat tucked under his chair, he could not stop beaming. ‘Not bad for a refugee,’ he said softly, almost to himself, as we raised our glasses of champagne in a toast.
‘Perhaps …’
‘What about a couple of maps and a Michelin Guide?’
She does not argue with this. Instead it prompts a suggestion of her own: his passport. A poignant document, proof of an identity remade and now lost. No visas necessary for where he is now or will eventually be going.
What would I put in my box? A pair of earrings, seashells, a poem and an artwork by David, a luggage tag, my wedding ring, a phial of saffron threads to remind me of sunny flavours. The condolence-card reply from Jackie Kennedy. Photographs of my parents, images of friends. This book.
Possessions say so little, in the end. We cherish them, invest them with meaning, but their eloquence becomes muted with time. At a certain point, the things you want are not things. They are people and sensations. The sound of rolling thunder approaching, the folding ripple of a small wave in a sheltered bay, the feeling of large warm drops of rain on your forearm, the smell of basil, coffee, garlic, baking bread. Laughter. Love. Friendship. Beauty. Kindness. Music. The creative spark and flair of making a bouquet of flowers, or a meal eaten in fellowship, or finding the right words to put on the page.
While we haggle over the contents of the memory box, I notice that my mother is more graciously resigned to my father holding her hostage than I expected. Ever hopeful that he will respond with some small sign of appreciation, she makes sure he is taken on outings with other residents, hoping to stimulate any part of his brain that remains undamaged. She pushes his wheelchair through parks and gardens and points things out to him from the window of the Nightingale bus, returning exhausted but often uplifted by the tiniest sign. ‘I think he really enjoyed himself,’ she says later, and I am amazed at her new capacity to find the positive in even the slightest flicker of his eye.
‘He seems to like the hand massages,’ she says of a program of new treatments being trialled, though he still chews his fingers raw in unchecked compulsion. Therapists confirm her observations, saying they have glimpsed fleeting smiles. He is less agitated, more peaceful. There are still flashes of anger, rare outbursts that appear out of nowhere. Being pushed along an unfamiliar corridor to the terrace, he cries for no apparent reason, as if suddenly afraid. While he is visibly declining, my mother is ageing more imperceptibly. No one notices because her skin remains unlined and her child-like manner deceives strangers into believing she is a decade younger.
And that’s not all. At Nightingale House, she receives unexpected compliments. When a carer describes her as ‘good with people’, she repeats the phrase to me frequently. She has also learned to see comedy in her visits and its absurdities. One day she see my father holding hands with a woman. When my mother bends to kiss him on the forehead, the woman asks tartly, ‘And who are you?’
To which my mother replies, ‘I’m Harry’s wife.’
The woman, who is rather well groomed and nicely dressed, becomes rattled: ‘No, you’re not. I’m his wife.’
Instead of arguing, my mother laughs. ‘If you say so.’
On her next visit, she discovers she has an admirer of her own. A resident in the same wing greets her with a polite salutation, and then, moving along rather faster than propriety would suggest, touches her on the breast and announces himself as her husband. Instead of getting flustered and offended, my mother recounts the episode with a flirtatious smile in her voice. ‘So now I have two, too,’ she says.
I could not do what she does. I’m ashamed to admit that on some visits to my father, I found the experience such an ordeal that I just sat in the car rather than face what waited for me on the second floor.
Forty per cent of the nursing home’s residents have no visitors whatsoever, and are entirely dependent on the goodwill of volunteers who do not reach everyone on their rounds. When my mother sees a new face, she has the confidence to approach in greeting, setting aside her natural timidity and reserve. She is stronger and steelier than either of us knew.
Which comes in handy. In an attempt to reduce costs due to severe budget cuts, within days of my father’s move to the new wing the NHS threatens to withdraw the funding for his care.
Just as I fought the system to get him admitted, my mother decides she will take up the struggle to keep him there. Energised by defiance rather than cowed by officialdom, she swings into action with method: she studies all the official literature to understand the assessment criteria and launches a carefully considered counterattack in a comprehensive report stating her case, rebutting the arguments with calm reasoning and judicious observations from staff.
The wait for a decision stretches over two agonising months, during which she eats less and sleeps little. On Skype I notice that her cheeks are hollow. Her world shrinks to one and only one concern. She is under siege. Every decision, however small, is put on hold. ‘I can’t think about that now,’ is her stock answer to any question. Finally, an official letter arrives. To everyone’s amazement, she’s won.
The triumph in her voice via Skype is almost palpable. The confidence boost acts like a power surge, prompting her to quit the antidepressants she has been taking since my father was admitted. Bursting with pride, she cannot wait to tell me that other carer visitors at the facility have asked if she would be an advocate on their behalf.
As a tentative mature-age student who never completed a basic education, my mother dreaded writing essays when she took high-school level Russian exams in her fifties. It put her off studying for a degree, despite her natural aptitude and her passion for the literature. Now here she is, in her mid-eighties, able to mount a cogent argument and defeat a powerful authority. It is never too late for victory.