James Black faced a dementia diagnosis at just 57. NULA SUCHET, his wife recalls his final days

At the care home, there's a woman of strange and ethereal beauty. Usually, as soon as she sees me in the corridor, she walks up to me and says: 'I knew you would come.''Hello, Bonnie,' I reply, wrapping her in a gentle hug. She gives a shudder and smiles, lifting her arms up to cover her chest as she giggles nervously.Bonnie's room is just two doors away from that of my husband, James. She often wanders in and sits on his bed, just listening to our chatter and smiling.She looks at the pictures on the wall and says: 'Is nice, nice.' And she helps herself to handfuls of James's chocolates, eating them casually in front of us.Sometimes, I take them to the coffee shop and get Bonnie a cup of hot chocolate, her favourite. When she's cold, she gives a shiver, her signal for me to wrap a pashmina around her.We have similar colouring, Bonnie and I, so new staff often ask: 'Are you related?'We aren't of course. In fact, it's Bonnie's husband who brought her here. And I can't help thinking it's strange that, in all these months, I've never once bumped into him…James and I don't have children. It's always been just him and me, and we've been everything to each other.It's hard to pinpoint when the changes begin — it's more of a growing awareness that he's no longer on top of things. He isn't tidying away things in the kitchen, and he's forgetting to clean his teeth or pay the bills.He lives and breathes his work, writing screenplays and documentary scripts, so why is he forgetting to return important work calls?Maybe he's stressed, or maybe he's simply getting a bit scatty in his old age. But the thing is that James isn't old: he's only 57. Surely he shouldn't be losing his keys and glasses quite so often, or leaving his favourite jacket and valuable wristwatch on a film shoot, or his passport on a plane?I'm working harder than ever at keeping my international interior design business running smoothly. James seems unconcerned that we have a large house to maintain. It's as though money has ceased to mean anything to him.Little things are multiplying daily. A few weeks ago, I came home to find our dogs, Spanny and Lucy, desperate for food and their water bowl dry. What's going on? James dotes on them, particularly Lucy, the stray whom he nursed back to health after we found her on the roadside, emaciated and starving.We go to London for a meeting with a producer. It's about James's latest script, a comedy about a student who becomes a sperm donor to raise money for a trip on a Harley-Davidson along Route 66.The producer, David, tells us that a major film company is interested. He leans back in his chair and says: 'Tell me more. How do you see it? Who do you see playing the characters?'James and I have spent weeks talking about the script, so I wait for him to burst out with all kinds of ideas. But he sits in silence.David tries another question, then another. It's as if a strange language is being spoken, one that James doesn't understand.I'm confused. This isn't the James I know. Normally, it would have been impossible to get a word in edgeways.'What's the matter?' I ask, but he doesn't seem to understand the question. Is he joking? This is an amazing opportunity!David turns to me, bewildered. 'Is James feeling all right? Is he on something?'He walks around his desk and stands over James. 'What the f*** is going on? Are you OK? I want to make this film, but so far you've not uttered a word!'James makes a few sounds that make no sense. I stand up, flushed with embarrassment.'I'm so sorry, David. When James gets his head together, we'll come back and see you.' Outside the building, I lose it. 'What was all that about? Why didn't you say something?' I rage on and on but James says nothing.He left me gifts of sweet peas - the only way he could still show his loveBack home, he retreats further and further into himself. I seem to be losing bits of him every day.I can't believe my luck: I've been asked to go to Tanzania, Zanzibar and the Seychelles for work. It will be a welcome break from the endless worrying about James.But the trip is tinged with sadness because Africa holds such a special place in our hearts. It's where we met, two decades ago, when I was the artist commissioned to create drawings and sculptures for Early Man, a four-part documentary that James was directing.Over six weeks' filming in Kenya, I became more and more drawn to the tall, handsome director and his beautiful way of thinking and talking. He had striking green eyes that shone with enthusiasm, and spoke with the softest hint of a cultured Northern Irish accent. He was so secure in his own skin, totally confident and completely unaware of his good looks.On the final day, he invited me out to dinner. When we met in a little restaurant, we couldn't stop talking. We shared a love of life, literature, films and writing.Outside the restaurant, he kissed me. We were locked in an embrace for so long that people started to cheer us on. I knew I'd fallen in love.At our wedding a year later, James leaned over and whispered: 'I will treasure and love you for the rest of my life, my darling Nula.' It was the happiest day of my entire life.Our friend Rita, a retired doctor, tells me squarely but kindly that she thinks something's not quite right with James. She suspects he has a tumour, or maybe an internal bleed, and says I should get him to a specialist.I don't want to believe her. In his working life, James has always been under pressure — surely it's stress that's making him behave so strangely?Not long afterwards, he picks me up from the hairdresser's and drives home, but approaches our driveway unusually fast. I shout at him to slow down.I'll never forget Lucy's loud yelping cries. I jump out of the car to find her lying on her back, struggling, unable to get up.The vet kindly drives me home after Lucy has been put down. James looks on like an innocent child as we place her in her basket and cover her in her favourite rug. The vet must presume he's in shock. What's really strange is that James doesn't seem even to feel sad. As I bury Lucy in the garden, wrapped in one of my old cardigans, he just stands there like a statue, cold and emotionless.In early 2004, I take Rita's advice and book an appointment with a Harley Street consultant.As we sit waiting to be called, I think how odd it is that James hasn't asked me why we're here. He's followed me, smiling, like a compliant child.Despite this, I feel naively optimistic, but the consultant's questions are bizarre. 'James, who is the Prime Minister?' And: 'Can you count back from 20?'James just mumbles and stammers incomprehensibly. The consultant sits back in his chair and gives me a patronising look. 'I think your husband has some form of dementia,' he says, going on to explain what this means.What is he talking about? I'm not taking anything in.'There's no cure,' he says. 'I warn you, the prognosis is grim.' And then he twists the knife again: 'He may not have more than a year.'Dementia? Isn't that what old people get? Not my James. I think I'm going to be sick.A second opinion confirms that James has Pick's Disease, a rare form of dementia that affects the frontal and temporal lobes of the brain. Patients can live for anything between one and 12 years, the consultant tells me gently.His disease is untreatable. We are told not to bother booking another appointment.'As James's dementia is Pick's,' the consultant adds, 'it will allow him to have a small window of awareness for a time. But it's a very, very small window.'I wail out loud. The idea of losing him, of navigating a future without him, is beyond unbearable.James laughs, as if he's just been told some wonderful news. My witty, funny, super-bright James is travelling at speed, further and further away from me.After the shock wears off, I focus on the one positive thing I've learned: James will have a window — a limited one — but a window nonetheless.So I decide to make the best of the time we have left before the disease engulfs his mind completely. I'm going to travel with James, do things he'll love, squeeze the last drop of happiness from our time together.Over the next five years, I take him to the cinema, the theatre, the opera and to concerts. I order his favourite food in restaurants.I bring him with me when I have to travel abroad, giving huge tips to hotel porters to keep an eye on him when I visit clients. When I return, he greets ...Read more

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