Neil Cole was a 6ft 7in-tall ‘typical Yorkshireman’ who loved rugby and going swimming with his young son Jonny; the mental health support worker juggled work with taking on many responsibilities at home because of his wife Jo’s multiple sclerosis. But in what should have been the prime of his life, Neil died of a sudden heart attack. He was aged just 51; Jonny was just eight.
Jo, who lives on the outskirts of York in the village of Wigginton, says today that the period after Neil’s shock death in September 2013 was hugely difficult for her and their son.
“You kind of go into auto-pilot,” she says. “It is shock for a lot of it. Children grieve differently to adults. Whereas for adults it is a constant, like standing in a river and the waves coming over you, for children, it is more like jumping in deep puddles. They will be beside themselves one minute and wanting to go out on their bike the next.
“To start with you are just getting by. I had my physical problems to cope with as well – Neil used to do most of the driving, cut the grass and used to cook most of our food.
“When he first passed away, one of the first things Jonny said was ‘Who is going to cook?’
“I had to write out seven meals I could do and say it might be egg and chips one day but we will survive.”
After gradually coming to terms with their new reality – and subsequently coming through a period of illness herself – Jo decided to start looking for bereavement support for Jonny but could find little suitable for him in the local area.
“With my particular condition, I wasn’t in a position to do anything for a while and I had become quite unwell a year after my husband died. But I had it in my mind there should be something.”
Jo was helped by a national charity called Widowed and Young and met other parents in a similar situation to her. But she says it was difficult to find a suitable outlet to help her son process his grief.
“It is very isolating being a bereaved child. I just thought if you could put them in a room together and do activities, things like arts and crafts, it could help. It would not necessarily be about talking about the person that had died, I wanted to have books and those kind of things available.”
In spring 2016 and still mulling over the idea, Jo went to a Costa shop which had a community room in the neighbouring village of Haxby to ask if there was any scope to book something in at some point in the future. “They got out the diary and all of a sudden I had this date booked in three weeks’ time. I booked it on a Saturday afternoon and did some crowd-funding on Facebook and raised a little bit of money. I wondered if anyone would turn up. But the first session had six kids and at the end, someone asked ‘Are we going to do this again?’”
The meetings became monthly, with children involved in making memory books and boxes, as well as playing games together. The group became an official charity called Bereaved Children Support York in February 2017 and in May that year moved to larger premises at The Storehouse centre in York, where there were activities like table football and table tennis, as well as an Xbox, for the children to use.
The charity’s work is not just limited to children who have lost a parent, but for any young person who has suffered a significant bereavement in their lives. In the two years since it was first launched, the charity has had 90 local children come to something it has arranged, including trips to the theatre and trampolining. The organisation’s scope has also expanded, working with three bereavement practitioners who provide separate one-to-one sessions with the bereaved children. Training days have also been arranged for schools, while Jo says her next mission is to come up with new ideas that appeal to older teenage children.
“It is a huge thing to have someone to talk to,” she says. “If you are reacting to grief as a child, it is a lot to process. Sometimes, you just need somebody to talk through how you are feeling and you might not want to upset the surviving parent. Just giving them that space and having that neutral face is important.”
Jo’s achievement in establishing and running the group is even more impressive given she has been living with MS for 21 years, which has recently moved into a stage where disability steadily gets worse. “The MS means I have to do the charity within my own limitations,” she says modestly. “Because I’m not working, I can work around my symptoms.”
Jo met Neil when she was 20 and he was 33 and they were both students in York; Neil studying nursing and Jo training to become an occupational therapist. The couple got married in May 1997 – but had received devastating news just a week before their wedding when Jo was told by a doctor it was highly likely she had multiple sclerosis after suffering with symptoms of a tremor and extreme tiredness. “It made the ‘in sickness and in health’ part of our wedding vows a bit more poignant,” she says.
At the time, there was little treatment available on the NHS for MS and Jo became involved in a successful national campaign for a drug called Beta interferons which lessens MS relapses to be made available on the health service from 2002. But Jo became so unwell with the condition, she had to give up work in 2003. Two years later, the couple had much happier news when Jonny was born.
Jo says life is still hard without Neil – but public understanding of the grief process for people like her has recently been helped by bereaved celebrities Rio Ferdinand and Simon Thomas openly sharing their experiences.
“The first year, you just struggle from one thing to the next,” she says. “You think I will get through the first Christmas, the first anniversary and then everything will get better. But the second year is often hard because you realise it is as it was before. With a lot of our parents, there is a financial implication or a job implication – if your partner was the main breadwinner, what do you do? And if your partner was the main childcare provider, some people have to give up their jobs and get a job with school-friendly hours even if it is not their area of expertise.”
Jo has also established a parents’ group who meet without the children. “When you lose a partner, all of a sudden you have to take all of these decisions, you have got no one to bounce stuff off. Sometimes people think after a year you should be over it but grief is a long process.
“But sometimes when we get together we talk about the football and Britain’s Got Talent. It is a bit like the children, sometimes you don’t have to talk about what has happened. But equally, if someone is facing a significant anniversary or something has happened with their child, it is a safe space to have a chat.”
Bereaved parents ‘must be kind to themselves’
Jo says her advice for bereaved men and women whose partners have died is to not be afraid to accept help from relatives and friends who offer to assist.
“I found it really hard; it is difficult because many people will offer and write something in a card – it is knowing who means it,” she says. “But when your grass needs cutting or your shopping needs picking up and someone does help, it is priceless.”
Jo adds the many demands on parents who have to look after children after a loved one has died, means it is important people are not too hard on themselves. “Sometimes, if you get up and get dressed, it is an achievement.”
For more information about the charity, visit www.bcsy.org.uk.