They’ve lost Daddy. I can’t bear for them to lose me too
Their father died last week, mum is under the shadow of cancer – but prepare to be mesmerised by this astonishing interview
IT’S LUNCHTIME and the children are heading for Pizza Hut, expressing their delight in ear-piercing whoops. After wrestling them out of the car and through the restaurant door, their mother Clare Coulston requests a table for six. That’s a seat for her, the two children, me, our photographer – and Clare’s husband Paul.
Clare stops short and puts her hand briefly to her mouth. ‘I’m not thinking,’ she says, trying not to get upset. ‘I expect I’ll be doing that for a while.’ Her mistake is understandable. It is just four days since Paul, Clare’s husband of 15 years, and father to Finlay and Evelyn, died suddenly aged 40 from the effects of Motor Neurone Disease (MND). He had been fighting the muscle-wasting illness since 2012.
But more poignant still – heartbreaking in fact – is the prospect that one day soon the children may lose Clare too.
She faces a death sentence after being diagnosed in 2009 with cancer of the oesophagus that spread to her lymph nodes.
The family’s situation touched not just their community in Ulverston, I fought to stay alive for them while Paul was ill Cumbria, but the heart of the nation too, when, last week, Paul’s death was announced alongside a beautiful family portrait (above) taken just after Paul was diagnosed in 2012. It went around the world.
Now that Paul has gone, Clare’s thoughts have understandably turned to her own future, which remains perilously uncertain, and that of her family.
‘It’s bad enough to lose one parent; the thought of the children not having a mum either doesn’t bear thinking about,’ she says. ‘I so don’t want to leave them. I just can’t imagine them growing up without me. You never get another mum.’
Death is not a subject that is readily discussed in modern life. But Clare, 39, is determined to face up to and describe the reality of what awaits her – and all of us.
Her insistence on keeping things ‘as normal as possible’ for the children is clear from the moment I arrive at their four-bedroom home.
It’s 8.30am, breakfast time, and the children are glued to their iPads and the television, squabbling over which channel to watch. Clare’s mother Sue attempts to extract breakfast requests from them.
Paul’s presence is everywhere – from his electric wheelchair parked in the conservatory, to the sympathy cards and bouquets of flowers lining the windowsills.
A funeral service guide sits on the coffee table alongside Evelyn’s multi-pack of nail polishes. Upstairs a stuffed dolphin, a souvenir from their family holiday to Disneyland in Florida, sits on Paul’s empty bed.
When Clare, a part-time police sergeant, emerges she looks drawn and tired. She was given just a 30 per cent chance of survival when her cancer was diagnosed. The fact she is still alive today is a little short of a miracle. But if the disease resurfaces she has been told she’ll be dead within a year, leaving the children orphaned.
‘There’s not a day that goes by when it doesn’t cross my mind that the cancer could come back,’ Clare tells me over a cup of tea.
‘I really didn’t think I’d be here today. I can’t quite believe that I am. While Paul was ill I needed to be here for him and the kids. It was a fight to stay alive.
‘You can’t dwell on it though. If I sat and thought about what we’d been through I’d go under.’ As the morning unfolds, her phone rings almost non-stop with calls from friends, family and acquaintances all wishing to express their sympathies and ‘if there’s anything I can do’ sentiments.
But there’s also the business of death to attend to. The district nurses call. They will come later to pick up any unused supplies. The funeral director will visit this afternoon to talk through the service.
For the children, their father’s death has still not really registered. But when they do remember they speak openly, often providing light relief. Clare reveals that Evelyn, seven, has suggested a ‘good song’ for Paul’s funeral: Dumb Ways To Die by Tangerine Kitty, a catchy tune that was a hit on social media.
‘Have you heard it?’ Evelyn asks me excitedly before dragging me into the living room and putting the video on YouTube. She and Finlay, aged nine, dance around and sing.
‘Dumb ways to die. Set fire to your hair. Poke a stick at a grizzly bear,’ Evelyn shouts.
‘Eat medicine that’s out of date. Use your private parts as piranha bait,’ Finlay adds before they both descend into fits of giggles. Clare can only laugh at the dark humour of the situation. ‘I’m sure Daddy would see the funny side,’ she says.
AT 10.30AM and, after much protest, the children get dressed and we get in the car to register Paul’s death in nearby Barrow, something Clare is clearly dreading. The appointment is not until 2pm so they decide to show me nearby Walney beach – which also has a park – where the couple first lived.
‘Mummmm. Are you single now?’ Evelyn pipes up from the back seat of
the car before exclaiming how ‘awesome’ it is that her father’s funeral is tomorrow – so she can enjoy an extra day off school.
‘Daddy was going to take me to gymnastics next week and now he can’t,’ she says almost angrily as we pass breathtaking mountains.
‘Oh, I know,’ Clare soothes. ‘But Daddy will be watching everything you do now ,won’t he?’
‘How do you know that Dad stopped breathing, Mum?’ Finlay says while we’re stuck in traffic.
Paul’s diagnosis in 2012 with ALS, the same form of MND that Profes- sor Stephen Hawking has, seemed scarcely believable after Clare’s cruel illness.
When Clare, a fit and healthy woman who didn’t smoke or drink to excess, went to her doctor in 2009 complaining that she couldn’t swallow, Evelyn was just 12 months old and Finlay was a toddler. In the space of six weeks Clare lost 2st.
Her GP told her five times that she was suffering from depression. She was eventually referred for tests after collapsing.
She and Paul were horrified to be told that an enormous malignant tumour was blocking her oesophagus. ‘I thought that’s it, I’m going to die,’ Clare says.
Paul, then deputy headteacher of St George’s School in Barrow, took a year off work to care for the children while Clare had chemotherapy and surgery on her oesophagus and stomach in 2010.
She was told her tumour was grade three (grade four is terminal) and that the cancer had spread to her lymph nodes. Despite four more bouts of chemotherapy, she was given just a 30 per cent chance of surviving past five years.
‘Deep down, I thought I wouldn’t make it. Thinking about the kids was awful. What got me was the number of things I would miss.
‘I’d miss their 18th and their 21st birthdays, the marriages, getting out of school. It went through my mind that I’d never be a grandparent. We told them Mummy was poorly, but they were too young to understand.’
We drive past Furness General Hospital. ‘Look! That’s where you lived, Mummy,’ Evelyn says cheerily. It is also where Paul died last Saturday.
Clare was just starting to recover in 2011 when Paul’s illness emerged. ‘His right thumb was floppy – he didn’t have the strength to grip anything,’ Clare recalls.
‘I remember he couldn’t help me paint the kitchen because he couldn’t grip the brush.’
MND was diagnosed the following year. Paul was told he had between three and five years to live.
‘The kids adapted to it quite well,’ Clare says. ‘It’s not like Paul went from being able-bodied to being in a wheelchair. It’s been a hand, a leg gradually getting weaker and then needing help standing to being unable to stand.’
Clare and Paul fell in love while students at Lancaster University and married four years later. ‘He liked his football and rugby so I noticed his legs first,’ Clare recalls.
‘It was heart-breaking to watch him go from being so active to not being able to do anything.’
After getting over the shock of his diagnosis, they started to focus on the children.
‘We knew Paul was going to die. There was a chance I was too. We needed to get our act together and agree on what was going to happen with the children.’
It was decided Clare’s parents would move in with them to bring up the children. Trustees were put in place to handle the children’s finances.
When we get back home, Clare tells me about the first and only time she spoke to the children about Paul dying. The conversation came during a family holiday to Greece in May. ‘Evelyn and I were walking on our own. She suddenly said, “Daddy’s going to die. He can’t eat and he’s not going to be able to eat for much longer so he’s going to die quicker, isn’t he?”
‘I didn’t want to lie. I told her yes and that’s why we need to make the most of every day with him.’
Evelyn says matter-of-factly: ‘I tried to warn you, Mummy. But you didn’t listen to me.’
Clare is saved by the district nurses and funeral director arriving just after 4pm, alongside one of her best friends and her mother.
Paul didn’t request any special arrangements for his funeral.
‘He wouldn’t talk about it,’ Clare says while her friend packs up bottle after bottle of the liquid food he had to take. ‘Paul was very much live each day as it comes. I was more practical.
‘When he was first diagnosed, I knew we needed a wet room and a lift so he could get upstairs. Obviously, if you’re not at that stage it’s very hard to deal with, so we had a few disagreements about it.’
Clare had been planning to dress Paul in a grey suit but Evelyn had other ideas.
‘Evelyn had a favourite pink T-shirt for him. Every time the carers were here, she would get it out and say, “This is Daddy’s favourite T-shirt” and “Daddy, this is what you’re wearing today”.
‘So she’s painted “My Favourite Tshirt” in big letters on the front. She’s also painted his socks.’
While Clare is talking to the funeral director, Evelyn draws a picture of her and Daddy in his electric wheelchair at the park. She liked to ride on his knee when they went out, she explains.
The family had just returned from a glorious holiday in Northumberland last weekend when Paul, who at that point was unable to move and losing the ability to speak, complained that he couldn’t breathe.
‘He’d never struggled to breathe before,’ Clare says after the funeral director leaves just after 5.30pm.
When he got worse, an ambulance was called.
‘I think I knew he wasn’t going to pull through,’ Clare says, tears streaking down her face. ‘I held his hand, rubbed his leg and told him that he would be all right. I told him over and over that I loved him.’
Once at the hospital the family were told Paul would be gone within hours. Clare made the difficult decision not to let the children see their father. ‘Part of me wanted them to have the chance to say goodbye. But I did not want the last memory of their Dad to be that,’ she says.
‘You just don’t know if that’s the right decision. I rang them and they were put on speakerphone.
‘They each shouted, “Night night, Daddy, we love you”. They didn’t know it but they were saying their last goodbye.’
Clare told the children the next day in nearby Fell Foot park. ‘It was the hardest thing that I’ve ever had to do,’ she says, fighting back tears once again.
She is, though, refreshingly honest about his death.
‘I really think it was the right time for him to go. I don’t think he would have been able to speak in a month’s time. That was the thing he was dreading. He’d had such a good couple of weeks. He was happy and in high spirits.’
Clare is now in favour of assisted dying, which is due to be debated in the Commons on Friday.
‘It wasn’t something Paul would have chosen, but seeing him in that situation has made me realise that I would like to have the choice.
‘If this cancer comes back I wouldn’t have chemotherapy again and I just don’t see the point of being knocked out with drugs when the pain gets so bad.’
Clare is, for now, clear of cancer after passing the five-year mark in February, but it could return at any time. Her future remains horribly uncertain but she is determined to stay positive and strong for the children. She can’t help but be nervous about being a single mother.
‘I’ve got a lot of support, but when I close that front door in the evening it is just me and the children.
‘It’s solely up to me and that does scare me. When they’re older and know what cancer is we will have a conversation about how important it is not to let trivial things worry them in life. Before all of this I wanted them to do well at school, go to university and get a good job. Now I just want them to be happy.
‘I can’t believe what has happened to us. I’ve got to cling on to the fact that we are still half lucky. I’ve still got two amazing children. My focus now is them and staying healthy. I want us to start living, not existing.’
I leave her at 6pm with the children playing out, surrounded by her mother and her friends who have brought a bottle of wine.
Her husband may have gone, but Clare is far from alone.
They told him, “Night night, Daddy, we love you”