FALLING IN LOVE... RACKED WITH GUILT
As her darling husband faded away with dementia, Nula found solace with TV star John Suchet...whose wife was in the same care home. In the final part of her soul-baring series, she describes the maelstrom of emotions they faced as they grew ever closer
YESTERDAY in her heart-breaking series about her husband’s descent into dementia, NULA SUCHET described her anguish as she watched his health deteriorate. In this final extract from her moving book, she reveals how — in the depths of despair — she found friendship and comfort in someone who knew exactly what she was going through — broadcaster John Suchet . . .
When the love of your life has earlyonset dementia, it’s surprising how people can melt away. Some talk as if my husband is already dead, or they avoid mentioning him. But he’s still my darling James, even though he now lives in a care home, unable to feed himself or communicate. The longing to see him never ceases, not even when there’s no glimmer of recognition in his beautiful green eyes.
Sometimes I think no one can truly understand my despair. The other visitors to the home are mostly children of very old people with Alzheimer’s — but James was just 57, a brilliant scriptwriter and TV director, when he began succumbing to a rare form of dementia. Then, unexpectedly, I find someone who really
does understand. The first time I meet [the broadcaster and author] John Suchet is at a lunch organised by the home for relatives of the patients.
The nursing manager at the home engineers the introduction. ‘Like you, he’s not coping all that well,’ she tells me. ‘he’s got a similar background to James: he’s worked in television, too. I reckon you might have a lot in common.’
She’s right: John’s wife, Bonnie, also has early onset dementia, and lives just two doors away from my husband in the care home. I’ve come to know her quite well, as she often wanders into his room.
During lunch, John and I talk and talk, sharing our pain. As he describes his feelings of loss and heartbreak, it’s as if a light has been switched on in my soul. Suddenly, I’m not the only spouse travelling this lonely, desolate road.
‘I’ve got to know James very well while visiting Bonnie,’ he tells me. ‘She likes to wander in and out of his room and look at the photos on his wall. Bonnie was diagnosed three years ago. She was the love of my life. It’s been hell going through it and heart-wrenching to see her here in this alien place.
‘We’d made so many plans before dementia claimed her. To see her going further and further away from me just rips me apart . . . It’s been my worst nightmare.’
his heartbreak mirrors my experience exactly. There’s instant recognition, an instant connection — and enormous consolation in knowing that John’s feeling
Suddenly, I’m not alone on a desolate road
exactly the same as I am. I’ve made a new friend.
We exchange emails. In the first, he writes: ‘I realise I am not very good at being alone — the legacy, I suppose, of more than 20 years when every experience, every thought, was shared with the woman who was the love of my life.
‘I find myself using the past tense, because although that woman is still here living with me, the woman I knew has gone. I sense it is the same with James . . .Writing this email and just knowing you understand is a help.’
In another email, he speaks of hosting a black-tie awards dinner, at which three massive photos of him and Bonnie were projected onto a wall. ‘I walked onstage, saw the photos, tried to speak and couldn’t. ever seen a man choke in front of a roomful of people?’
I write, too, telling him about the day my friend Colette visited James. Over lunch, he kept taking out his wallet and producing his television ID cards, laying them in a row to show her who he once was.
Later, Colette asked him, ‘Where’s nula?’ — and James just laughed.
‘I am in tears when she tells me,’ I confide to John. ‘he hasn’t said my name in a long time, but he still does say “loves, loves, loves” when he sees me. It doesn’t get any easier, does it?’
Finally, after months of correspondence, John and I arrange to meet for dinner. To my distress, it turns out to be awkward.
‘I don’t want you to think I’m looking for another relationship,’ he tells me. ‘I’m not. I’ve had the best and it could never be repeated. I’m now perfectly content to be alone.’ And in case I haven’t got the message, he repeats himself: ‘ What I had could never be repeated. It was beyond perfect.’
Weren’t we supposed to be meeting to talk about our mutual experience of having a spouse with dementia? Why is he laying down ground rules? What does he think I’m looking for?
Uncomfortable, I find myself pulling back. I talk at length about my ‘irreplaceable’ husband and tell John that I’m not looking for a relationship either.
Furthermore, I say, all I want is to share with someone who’s in the same situation, nothing more — and had you been a woman, I would be meeting her tonight for the same reason.
‘Would you really?’ he looks at me, surprised; he clearly didn’t expect me to say that. Then it’s my turn to be surprised, as he gets out his diary and suggests casually: ‘Shall we do this again?’
We agree to meet in a few weeks. next day, John texts me: ‘ Carpe diem, and let’s take one fr***in’ day at a time.’ It’s exactly the language James would have used.
Our friendship is soon back on track. every month or so, we go to operas, music recitals, tals, theatres or the cinema. ema. In between, we visit James and Bonnie at the care home.
neither of us questions sti s or analyses our situation. We just appreciate the companionship, and don’t expect or ask for anything from each other.
At the home, I sit for hours with James but can tell him nothing of where I’ve been or what I’ve done. There’s a wall of silence now as he
‘James would be so glad to see you happy’
stares blankly into the distance. I feel rudderless and long to ask him: ‘What should I do? My life without you is a mess. I’m not sure who or what I am, or where I’m going.’
On new Year’s eve, John and I meet up at the care home and drink to James and Bonnie. When Big Ben chimes midnight, we hug each other and agree it’s the best new Year either of us has had in seven years. Then he invites me to Vienna for a weekend.
Bad choice: I’m suffused with memories of my honeymoon with James in this very city, like the time we came in from the freezing cold and he massaged my whole body to warm me up. It was such an intimate time. now I’m here with a man I hardly know. Guilt climbs onto my shoulder and sits there for the whole weekend.
Still, I need to face up to the fact that John is becoming the new man in my life. A few weeks later, he joins me for dinner with James’s sister, Maureen, who helped carry me through the early days of my husband’s dementia.
At the end of the evening,
I want to run away, but fear makes me stay ‘We’ve saved each other,’ John tells me
Maureen hugs me and whispers: ‘James would be so glad to see you happy. He’d be cheering you on . . . I know he would have liked John.’
James, meanwhile, is getting increasingly difficult for the carers to handle. Not wanting to stress him further when he’s abusive and difficult, they often leave him unshaven and unkempt.
Bonnie, too, is deteriorating: she’s stopped feeding herself. Often, I lean across and feed her when the carers are too busy. My regular visits have built up a sort of bond between us.
She often refuses to let the carers bathe her or wash her hair, for instance, but as soon as I suggest having a bath, she says, ‘And so it is, yes it is’ — and follows me, smiling, to the bathroom.
It’s strange that I’m a comfort to Bonnie while I’m becoming close to her husband. Dementia is doing weird things to all of us.
John asks me to go on holiday with him to Greece. But as soon as we arrive on Samos and settle into the villa, I’m apprehensive. How am I going to manage living in this small space with someone I’ve known for only a short while?
I have ample time to think on the island. Am I being disloyal to my husband, I ask myself? Going out in public, while James and Bonnie are in a care home, is still difficult for me emotionally. Now in my late 50s, I know I’m getting deeper and deeper into this relationship with John. Yet I feel an awkwardness about our situation and remain unsure about how to play my new role.
Even my daily calls to the care home matron, who always reassures me James is fine, don’t assuage my guilt. There are four of us in this relationship, and not for one moment can we forget this.
And how can I hope to live up to John’s perfect goddess? I guess I’m wanting emotional reassurance, but it’s way too early for that.
One evening at dinner, over a glass of wine, I ask him a silly, girly question — and as soon as it’s out of my mouth, I regret it. ‘How do you feel about “us”?’
John responds in an honest, male way: ‘Let’s take this slowly. I don’t want to be hurt again. Losing Bonnie has devastated me. I never want to go through that pain again. Not letting myself fall in love too quickly is the best way to protect myself.’
I wasn’t expecting this response. I’ve been naïve, I realise, to assume we have much more than this. Outside the restaurant, John puts his arm around me and whispers: ‘Let’s just live in the now and take one day at a time.’
But it’s no good — as the days in Greece pass, our relationship becomes decidedly chilly.
On the Greek mainland, we visit Delphi, site of the ancient Oracle which could apparently predict the future. According to custom, people make a wish at the shrine — and mine is: ‘I hope my friendship with John will continue.’
It isn’t until a year later that I discover what John has wished: ‘I want to live with my darling Nula until the end of my life.’
When we return from Greece, I rush to see James. I kneel in front of his chair, take his hands in mine, and tell him I love him. He smiles. But when I wrap my arms around him, his body is unresponsive.
John has been moving into a new flat. Understandably, he’s filled it with Bonnie’s Portmeirion china, her lamps and vases, photos of her in her youth. There’s even a plaque that says: ‘Bonnie’s Kitchen.’ I want to run away. I probably should. But the awful fear of facing dementia alone compels me to stay.
The strange thing is that I feel like a mistress. I’m having a relationship with someone who, while not living with his wife, still sees her as very much a part of his life. And I feel I cannot come anywhere close to her perfection.
With my emotions in turmoil, I tell John I’ve made up my mind that we should stop seeing each other. ‘ I feel I’m treading on Bonnie’s past,’ I tell him.
He is stunned. ‘You’re right! I just didn’t think!’ he says. ‘You saved me, we’ve saved each other. I want you in my life every second, every minute — no matter what . . . I love you very much and want you in my life forever.’
We cry and hug; I agree to stay. Days later, he dismantles the shrine, leaving two photos of me with James and him with Bonnie.
By the end of 2013, our relationship has moved into a better and more secure place.
We have met each other’s families. Old friends have ‘celebrated our luck’ at finding each other.
John and I talk about how strange it is that we continue to care for two people who haven’t acknowledged either one of us for nearly ten years. It’s also becoming clear that neither of our spouses have enjoyment left in anything. Not long afterwards, I notice that James’s swallowing reflex is going. I wish I had the courage to put a pillow over his head. Society is kinder to sick animals.
Then one day, I’m sitting next to James’s bed, gripping his hands when I notice he’s holding my gaze. We’ve connected. I’m sure of it. Oh my God, I can’t believe it!
It brings back something I heard as a child growing up in rural Ireland: that when someone is near to death, they get a momentary awareness. Can it be true?
I scrabble in my handbag for my earphones, and put them into James’s ears. The music is by Mozart, his favourite composer; he’s even written a six-part TV series about him. He reacts immediately, his eyes filling tears that slowly trickle down his cheeks. For the first time in years, we are united — by the music. I hug him over and over and kiss away his tears.
Some days later, I’m shopping in a supermarket when I get the call: ‘Come as soon as you can. James isn’t going to make it.’
When I arrive at the care home, he’s shaking violently. I ask the doctor to do something, please, to ease his suffering, but he looks at me, aghast. ‘Are you asking me to murder him?’
I stay with James for several days and nights, and he lingers. John tries to ‘be there’ for me, but I refuse his efforts to console me.
One night, he takes me out to dinner, knowing I’ve hardly eaten anything for the past week. I pick at the meal, but the food is like sawdust in my mouth. I can’t even keep up a conversation. John is upset. Back home, we ignore each other for the rest of the
evening. Later, he tries to talk to me. ‘We’re in this together, Nuli.
Whatever happens to James or Bonnie — when it’s their turn to
go — we’ll be there to comfort and love each other through it.’
I’m not sure I can do this: love in the present when I’m grieving for my past with James. But John is insistent and holds me tight. ‘Please, please don’t push me away. Don’t let bloody dementia win!’
I start raving like a lunatic: ‘It’s already won. We’re unable to give James and Bonnie any words of comfort. We can’t even say goodbye — and as for us, it’s smashing us, too.’
For the next few weeks, I don’t leave James’s bedside. He’s going through a nightmare cycle of crisis after crisis. As death creeps closer, I can’t sleep. I stroke his hair and tell him how much I love him and will never stop loving him.
In the end, the bastard dementia takes James on the only day I go home to get some rest. Over the phone, a nurse tells me gently: ‘Sometimes they don’t want you there. Maybe your not being there allowed him to leave.’
James is still in his room when I return. I lie on his body, nuzzling his face and howling. When the undertaker comes, I’m incapable of saying goodbye.
Five months later, it’s Bonnie’s time to go. So soon after losing James, it’s hard reliving the emotions. At Bonnie’s funeral, John and I break down at the sight of her coffin and hug each other.
The closing song is Joan Baez’s Farewell Angelina — a much-loved favourite of Bonnie’s — and strangely the first LP I ever bought as a student.
It strikes me that this gives me a connection to her even after death.
In the weeks that follow, I’m hit by a tsunami of sadness. I cry for days, replaying all the happy times, chats, and journeys I shared with James. I want to run far away from John and all the reminders of dementia.
A month after Bonnie’s funeral, I decide our relationship is over. Dementia brought us together, but there’s now no need for us to continue.
John agrees: Our relationship has run its course. Over the weeks, however, he texts and emails me — nothing intimate, just everyday chat. Then he remembers we have an appointment at the Apple Store to sort my computer out.
He says we shouldn’t let it go — we had to wait long enough to get it — so we meet up again. We have lunch afterwards in Covent Garden. I look at him across the table. How could I think of leaving this man? We’ve shared so much pain and sadness. Our lives are intertwined.
Surely it was OK to begin a new journey with him? I love John, for Christ’s sake.
After lunch, we get a rickshaw ride and laugh at the craziness of it all, and embrace for the first time in weeks.
For weeks, the ashes of Bonnie and James lie beside each other in John’s flat. In a way, it’s a huge comfort to have the four of us together. We include them in our conversations. They will always be part of our lives and we will never, ever forget them.
In 2016, John and I decide on a break in India. As we settle into our flight, he turns to me, smiling. ‘I have something to ask you. Will you marry me?’
My eyes fill with tears. A passing stewardess asks: ‘Are you OK?’ John laughs: ‘I’ve just proposed to her. She said yes.’ The stewardess returns with two glasses of champagne.
We marry on July 7, 2016. That September, John has a new book published — Mozart: The Man Revealed. He dedicates it to ‘Mozart lover James Black’.
n ADAPTED by Corinna Honan from The Longest Farewell by Nula Suchet (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.