James and I (pictured at a friend’s wedding in 1998) don’t have children. It’s always been just him and me, and we’ve been everything to each other
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.
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. james (pictured filming for Panorama in postwar Vietnam in 1987) isn’t tidying away things in the kitchen, and he’s forgetting to clean his teeth or pay the bills
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 love
Back 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.
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. Pictured: Nula and James at a care home in 2012
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.’
It is confirmed 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
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 me with outstretched arms.
There are still glimmers of the old James, but it’s becoming all but impossible to engage in even the most basic conversation. Then we go to Paris, and while we’re sitting in our favourite restaurant, he stuns me by speaking in fluent French to the waiter — once more the debonair, clever, charming man he always was.
Moments later, we’re back to a mixture of words that make no sense, a new language that I struggle to decipher.
James has always been coolly romantic. He’d make love to me before taking me out to dinner, then buy the best bottle of wine to have with it, to celebrate our good luck in having each other.
He knew I didn’t like shop-bought flowers, so he’d go to great efforts to get me wild flowers on my birthday.
Oddly, he’s never been much of a gardener, but he’s recently planted some sweet peas in the garden. As they grow, he becomes obsessive about watering them daily.
When I get home from work, I find sweet peas all over the house: in vases, cups, mugs, jugs. Most precious of all, but also most heartbreaking, is when I leave for work the next day and find little bouquets of sweet peas on the seat and dashboard of my car.
It’s James’s only way of telling me that he loves me.
I realise I need help, so I hire Irina, a kind, hard-working Lithuanian with peroxide-blonde hair. One day, she comes by to collect a few hundred in cash, which includes her Christmas bonus.
I offer her a drink and pass her a bottle of vodka. After a long conversation about her family troubles, I suddenly realise she’s drunk most of the bottle.
Worried, I ask James to escort Irina on the five-minute walk to the taxi rank and he willingly obliges. What happens next is a story worthy of a Carry On film.
In the street, they’re spotted by two policemen on patrol, who assume that the peroxide-blonde Irina and the conservatively respectable James are hooker and client. One of the policemen asks my husband his name. James is silent. Irina, in her inebriated state, tells the cop to ‘p*** off’.
They’re bundled into a squad car and driven to the police station, where Irina is charged with being abusive and James with ‘using the services of a prostitute in a public area and refusing to give his name’. It doesn’t help their case when an officer finds Irina’s bundle of cash.
Before long, one policeman realises that something isn’t quite right. Finding my card in my husband’s coat, he calls me — and the matter is quickly cleared up
James is brought back home by two mortified policemen.
My husband is losing all inhibition. When we’re out shopping, he tells a girl wearing ripped jeans: ‘You can’t wear those!’ Even worse is when a large man passes and James bellows: ‘You’re too fat!’
I book tickets for Glyndebourne, but it’s a nightmare. James starts shouting when his food arrives, and I cringe with embarrassment as every flinty eye in the place turns to stare.
I pull myself together. ‘Sod this,’ I think. ‘All that matters is that James is getting some enjoyment from the day.’ We continue to visit as many places as we can, filling James’s bucket-list before the window closes.
There’s very little chatter any more. James watches a DVD of La Boheme over and over again and sobs. Dementia is destroying everything. As James’s window closes, I don’t want the world to see him this way — so to protect him, I stop going out. We become ever more isolated.
I’m hardly getting any sleep. James gets out of bed at 3am to make toast, or he appears at our bedside in the middle of the night with a breakfast tray of inedible food. I learn to turn off the electricity at night. But now James has taken to waking up in the night and getting dressed, then coming back to bed. I’m too exhausted to object.
Sometimes, he reaches over in an attempt to make love, but then forgets what he meant to do. The old, passionate me has lost all desire.
I just lie there and replay all the good times we’ve had, feeling guilty that I haven’t tried to give him this one last pleasure.
Finally, social workers and our doctor intervene: ‘You cannot manage him any more,’ they say.
Driven to the brink of collapse by sleepless nights and the daily stress of dealing with James, I’ve lost over a stone in weight.
The only solution is to put him into full-time care. It’s the cruellest, toughest decision I’ve ever had to take.
I’m given a list of care homes. The first two are shocking: they smell of urine and boiled cabbage, with old people huddled in sodden chairs.
As soon as I enter the third home, I know that it’s probably the best there is. It’s small and intimate, and smells clean. There’s music playing, and art classes are going on.
Still I waver. Then Sara, the nursing manager, points out that it’s important for staff to get to know the real James before dementia completely claims him. I sign on the dotted line.
James and I spend our last two nights in a country-house hotel we used to love, and go for walks in woods smelling of autumn. I fill my pocket with chestnuts, and James offers them to strangers as if they’re precious gifts.
We have our last dinner together. I order his favourite food and the best wine. In bed, I wrap my arms around him. James, now lost in dementia, is unresponsive and pushes me away. I’m suffocating in sadness.
I’ve already made a huge effort to make his room at the care home feel familiar and comfortable, making sure he has his favourite chair and CDs, and covering the walls with enlarged photographs of our past life.
James looks around and is bewildered. A little later, Sara draws me aside and whispers: ‘When you leave, don’t say goodbye. Just walk away. It’ll be less confusing for him.’
I put on The Marriage Of Figaro. On hearing his favourite Mozart opera, James gets up from his chair and begins to conduct the music, a huge smile on his face.
At the door, I look back to see him still conducting, oblivious to my departure.
Once outside, I break down completely. The knowledge that we’ll never again live together annihilates me.
I reach out to dementia helplines. I sound like a child sobbing down the line. They are very kind, these people, but most of them are the adult children of dementia patients who are in their 80s.
The thought of suicide hovers over me like a black raven. I’m saving the tablets my doctor gave me, and plan to take them with James’s favourite bottle of Montrachet wine. The only thing that stops me is the thought of abandoning him.
On my next few visits, I realise that dementia has claimed even more of him.
He can’t lift a fork or a glass to his mouth now. He doesn’t know who he is.
Sometimes, he smiles and points at a photo — filming in America and Africa; skiing in France; fly-fishing on a loch; pets we’ve loved and lost.
He laughs and says: ‘Me, you, me. Love love, love, me, f***, f***, f***.’
So far, he’s letting me bathe him, change his soiled clothes, trim his hair, cut his nails. Doing his personal care preserves the closeness between us, and for a second I can pretend that this is all a terrible dream.
I’ve also been meeting the other residents.
There’s the retired naval officer who says endlessly: ‘Bit choppy out there today, eh? There’s a fine swell.’ Barbara, the retired headmistress, walks her dolls in a pram every morning.
And then there’s Bonnie, who appears to be content in her twilight world. She sits on James’s bed, chatting in a nonsensical way: ‘Yes it is. I know it. Yes it is. I know it can be.’ And she smiles.
The huge care-home fees force me to sell the two properties we own. My James, once so articulate, is now reduced to single-syllable words. He’s taken to wearing two ties — this is the man who always hated to wear one at all.
Does he have any memory left? I’m not sure. I play him all the music he loves — Mozart, Verdi, Leonard Cohen, Chris Rhea, Fleetwood Mac. Sometimes he smiles, but is he enjoying the sounds?
I’ve descended into a zombie state, with no desire to do anything except visit James.
It’s at this point that there’s a kind of miracle: Bonnie’s husband arrives in my life at precisely the right time. From our very first conversation, I see him as the best sort of friend, because he’s experiencing the same things as I am.
For the first time in years, I no longer feel alone…
- Adapted by Corinna Honan from The Longest Farewell by Nula Suchet published by Seren Books, £12.99. © Nula Suchet. To order a copy for £10.40, call 0844 571 0640. P&P free on orders over £15. Offer valid until July 29, 2019.