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Joel McKee and his family’s lives changed totally just four years ago when his wife Laura suffered what she thought was a terrible migraine attack.
She has been bed bound ever since, diagnosed with a rare condition, and the family has been on an emotional rollercoaster that Joel, a senior leader at Lloyds Banking Group, has tried to manage by breaking it down into solvable things he can control and which help the family to cope.
Lloyds has supported him as he has sought to do so – not only that, they have helped him to support others by speaking openly about his experience.
Joel is Head of Data Infrastructure & Quality Control, Group Operations at Lloyds Banking Group and has been with Lloyds for over 17 years. He and Laura have two sons, aged 13 and 11.
Laura was diagnosed with constant chronic migraines nine years ago. The migraines would leave her wiped out at the weekends and her job as a primary school teacher meant she was doing long hours which didn’t help. Then around four years ago she had what the family thought was a severe migraine attack. It got worse over the next weeks and months. Laura would pass out from the pain and Joel had to call an ambulance for her on one occasion.
Eventually she was diagnosed with a very rare condition – intracranial hypertension, which causes a build-up of pressure around the brain.
The condition causes loss of mobility and “brain fog”. Joel says Laura found it difficult to speak in more than monosyllables. She couldn’t cope with light or sound and her balance was poor. “Any exertion caused an increase in pain. She became bed bound,” he says.
If she did try to get downstairs from her bedroom to the ground floor she had to crawl down. It would take 40 minutes to get down the 14 stairs because she was in pain all the way.
Eventually Laura and Joel found specialists in Cambridge who had been doing research into the condition. They said they could help Laura by removing some of the bone in her skull to give her a better quality of life. They are the only team in the world treating the condition in this way.
Laura was put forward for clinical trials and she was all ready for surgery when Joel got a call while he was on a business trip in the US to say that the operation was off because the number of people taking part in the clinical trials had been capped. “It was really difficult to come to terms with,” he says.
Over the last three years the family have been on a rollercoaster as they have gone through a more gradual process aimed at improving Laura’s quality of life. Last January she had some bone removed which helped with some of the brain fog she was experiencing and meant she could have a two-way conversation. In the autumn she had a stent put in the left side of her head which has improved the regularity of the pain spikes.
More operations are planned. “Until she can get on top of the pain she cannot know if her mobility will come back,” says Joel, adding that Laura has to take a lot of drugs, some of which have side effects that mimic the condition.
Joel, meanwhile, takes care of the family. In the morning he gets breakfast for everyone, makes sure Laura has her emergency buzzer on and does the school run. Laura stays in bed till midday until her carer arrives. The carer stays for an hour and a half. Joel picks the children up from after school clubs and friends’ houses. He says he is ruthless at managing his time and tries not to think about business challenges out of hours. “I do not take my time for granted any more. I don’t work in the evenings as I need that time to talk to Laura. It is a lifeline to her,” he says.
One of the biggest challenges has been Laura’s mental health. “I can take care of the physical things like looking after the kids and housework, but only she can manage her emotional wellbeing,” he says. “Having been a teacher and engaging with the wider world to suddenly be isolated at home and in bed crippled with pain, not able to communicate effectively is a huge deal.”
Joel says Laura needed something to boost her feelings of self worth. Before she was sick she did a silversmith course so she has set up her own online shop and joined an online community for chronically ill people. “It gives her great solace,” he says, adding that she also writes a blog, Laughing while you’re crying, which distracts from the pain.
“She has to try and deal with it positively or it could crush her as she has lost so much,” says Joel. The family has had to adapt too – there are no holidays abroad, even an evening out cannot be planned in case Laura is in pain. She can now get downstairs as a stairlift has been installed, but it still causes her pain and make her dizzy.
Joel, meanwhile, is trying to keep everyone together. He has gone about it by using his management skills, coupled with Laura’s teaching experience. They hold monthly family meetings so the children can talk about how they feel about the strategy for managing their behaviour and support Laura in coping with her condition. “It gives them a sense of ownership,” says Joel. The family has a cream tea once a month instead of going out. To keep everyone feeling positive the kids write down one positive thing they have achieved every day and put it in a jar so that if they have a bad day they can take a thought out of the jar and remember a more positive time.
“It’s the little things that remind us that things have not stopped. That it is still possible to create positive memories and experiences,” says Joel. On the way to school in the morning he asks the kids what they hope to achieve that day and on the way home he checks whether they did achieve it. “It’s how I work with teams at work. I have been a leader at work for years and done a lot of coaching and mentoring. I ask people what they think success looks like, how they can measure that. At home it is less corporate and more accessible. It allows the kids to talk about how they feel. It sets a framework for how they can cope with adversity and as they cope more they can thrive,” he says.
He adds that the support from Lloyds has been “brilliant”. He has had agile working throughout his career. He compressed his hours when his eldest son was born and for three years after then went back to traditional hours when he was promoted. He is able to work remotely if he needs to and this has been very useful. “When Laura has been very low and depressed, I am able to be around. If I have meetings all day I can take a break and have a chat with her and it brightens her day. It can change her perspective,” he says.
He never starts any meetings before 9.15 because of the school run and he doesn’t take a lunch break, instead choosing to leave early when he needs to. To cover holidays he banks care hours so the carer comes for four hours and he can work from home more as well as using his holidays.
Lloyds also put him in touch with a charity that has paid for eight sessions of family therapy with Relate. He also had two weeks of fully paid compassionate leave when Laura had her bone surgery.
What about his own mental health? Joel has set up his own music studio in the garden shed and practises with his band who he met through the man who installed Laura’s emergency buzzer. “It’s my therapy,” he says.
But what has helped most has been the way Lloyds has given him opportunities to support others, for instance, through speaking at conferences about his situation and at mental health awareness events.
“They have given me licence to talk about what has happened and to celebrate carers and that has been massively powerful. It is rare to find an employer that promotes and celebrates the different challenges people face as well as providing practical support. Everyone will likely be a carer at some point in their lives and I feel very proud to work for an employer that sees that bigger picture,” says Joel. Because of his experience he was invited to co-chair Lloyds’ Family Matters network and to be the voice for carers. The network has 9,000 members and hosts sessions on issues ranging from being a working dad to caring. Joel has also fundraised for mental health charities and mentors for the Lloyds Bank Social Entrepreneurs Programme, delivered in partnership with the School for Social Entrepreneurs. He supports his mentee as he builds ‘The Dad Course’ enterprise in Brighton that builds skills for through a course for dads to be.
The support from Lloyds has meant he feels much more loyal towards the company. He believes his experience as a carer has also made him a better manager. “I definitely empathise more with people. I know myself better,” he says. “Everyone has their own story and challenges and if they are feeling stressed you need to find out the reason. It is important for us to listen to each other, to respect people as human beings.”