Sometimes the line between partner and carer can become blurred, and that’s certainly the case for Josey, who’s married to Chris but has felt more like a full-time carer than a wife since his mitochondrial disease diagnosis.
When Chris was a teenager he had hearing problems and was also very slim. Other than that, when Josey first met him he was like any other twenty-something. Then one night in 2017 he had a seizure, followed by another a couple of weeks later. He was in and out of hospital and eventually the neurologist diagnosed two strokes, for which he was put on blood thinners, but the seizures continued. The doctors narrowed it down to either mitochondrial disease, a brain tumour or motor neurone disease, and after an agonising 8-week wait for test results, the mitochondrial disease diagnosis was confirmed. The next day Chris was sent home.
The couple had never heard of mitochondrial disease, but Josey resisted the urge to do loads of research. “Google often presents the worst-case scenario,” she reasons. “The internet is really good for some things and not so much for others.” But she found The Lily Foundation’s video explainer invaluable. “It was amazing. It explains the disease better than anyone!”
After his diagnosis, Chris was ok for a few years and normal life continued, until he had six more strokes. That was the catalyst for a huge decline in both his physical and mental health. He temporarily lost the use of his right hand and right leg, lost the ability to read and write, couldn’t grasp who people were and forgot their names. He also forgot all his passwords, and Josey suddenly found herself looking after the family finances as well as coming to terms with his rapid deterioration.
Dealing with the symptoms of mitochondrial disease
Today Chris struggles with his mobility; balance issues mean he falls over a lot and he has to use a wheelchair. He’s registered partially-sighted because the signal from his eyes doesn’t get to his brain – often he’ll have a full-blown conversation with the cat, thinking it’s Josey, because it’s sitting in her chair! He suffers from mitochondrial disease-related epilepsy and also has extensive eating problems due to his stomach not being able to break food down properly. He loses weight quickly, often refuses to eat, and regularly needs to rely on high-calorie, nutrient-rich milkshakes.
Josey does pretty much everything for Chris – washing him, dressing him, feeding him. “He can eat two bites but after that I have to physically feed him, or cut food up for him,” she explains. Then there’s his multitude of daily tablets to be organised, some of which need to be stored in the fridge. He’s also diabetic – due to the mitochondrial disease – meaning Josey has to administer daily insulin injections. “I constantly check his sugars – that’s something I can control. I have to judge each morning whether he’s going to have a good day or a bad one as to whether or not I give him insulin.”
There’s no respite for Josey after dark either, as Chris suffers night terrors which often cause him to scream at the top of his lungs. And sometimes he just wakes up in a bad mood for no reason. When he was first discharged, his behaviour could be a little challenging for Josey to deal with at times, but medication has helped to keep him on an even keel since then.
At times Chris slurs his words and Josey has difficulty understanding him. “You can’t have a rational conversation with someone who has severe brain damage,” she acknowledges. “Sometimes he doesn’t even know who I am. I’ll hold his hand and he’ll say, ‘That’s very kind of you but I’m happily married!’”
Josey applied to social services for help, and was allocated 10 hours for a paid carer, to which she contributes part of the cost. However she knew Chris would only let certain people help him… step forward Josey’s mum. She’d worked in a care home before and was already helping the couple out. “Unlike a lot of people, Chris has a great relationship with his mother-in-law,” Josey laughs. “There aren’t many men I know who are so close to theirs!”
No time to herself
Despite this precious extra help, Josey gets very little time to herself, especially following the birth of their daughter, Winter, last year. “If one’s asleep the other one’s not. Then there’s the housework to do, the never-ending dishes. I might have to move to paper plates! And having a bath or going to the toilet by yourself goes out the window when you have children! Sometimes when I’m boiling the kettle I just take a moment and breathe.”
But the couple are incredibly grateful for their daughter, especially as Chris was told years ago that he’d never have children. Five failed rounds of IVF followed, and then one day Josey had to go to hospital for a biopsy in a cancer scare and instead the doctors discovered a baby! “Until the day I had her I was in shock, and I’m still in shock now. We’re very lucky to have Winter so I’m grateful for any time I get with her, and if Chris is able to join in then even better.”
It’s the little things that get to Josey, like not being able to ask Chris to pass the wet wipes when she’s feeding Winter or fetch her drink from the other room. “But he’s still Chris,” she acknowledges. “He’s still the man I married. When I have my bad days he’s always there. Sometimes I have to tell him that I’m crying, but when I do he’ll always ask why. He knows if I take my glasses off I need a cuddle. He knows that means something’s wrong.”
A carer, not a wife
Josey hasn’t felt like a wife for a long time now. “I remember thinking we could easily just be two people who happen to live in the same house. He’s dependent on me completely. But we took our vows and I love him. He always says, ‘But you like giving me a shower, and you like getting me dressed.’ And to be fair I quite enjoy it and we have a good old natter, and of course I’m going to do it for him. But he thinks I do these things because I want to, not because I need to because he can’t. I’m very much his carer. Which is ok though because I still get to spend time with him. He’s got a wicked sense of humour, he makes me laugh a lot.”
“Everyone asks me how I cope and I always say it’s like being a single mother to two. Everyone has their challenges, but we always try to look on the positive side – Winter is lucky as she has two parents at home who love her very much.” One of Josey’s friends once called her a superhero and that made her really uncomfortable. “No, I’m definitely not.” She shakes her head. “I’m not doing anything anyone else wouldn’t do for their husband or wife or mum or whoever.”
It’s only natural that there are times when Josey gets overwhelmed though. “Sometimes I have a bit of a cry, and then as my mum always says, I need to put my big girl pants on and it’s ok. Everyone has meltdowns. We’re lucky that we’re all still together. Sometimes I just need to go and stand in the kitchen or out in the garden and take a deep breath.”
Josey is very pragmatic about the somewhat unusual turn their marriage has taken. “Chris used to joke that he’d never cheat on me because I’d have to drive him there and get him undressed! We don’t have any of those worries other marriages might have. I’ll say to him, ‘As long as you look after me, I’ll look after you.’ We’ve always said that. Sometimes he’ll ask me if I’m going to leave him, and I’ll always tell him not today. I keep him around because his blue badge gets me the best parking spots! We say that a lot. We’re lucky because we still quite like each other even though we’re together 24/7.”
This Carers Week, please consider helping families like Josey and Chris, who are dealing with mitochondrial disease on a daily basis, by making a donation to help us continue our work supporting anyone affected.