For Rochelle Bugg, becoming a carer in her twenties was not something she ever expected – but it was a decision she made quickly and instinctively, after hearing that her mother, Shirley, had suffered a stroke. At the time, Rochelle (now 35) had just moved to London to start a new job in marketing, when she received the phone call from her younger sister, Olivia, that changed everything. She returned to her family immediately, with the gut feeling that something wasn't right.
It later transpired that heartbreakingly, the doctors had got it wrong: Shirley had a terminal brain tumour, which would eventually see her need full-time care. The revelation came about after Rochelle pushed for a second opinion – in making that choice to be closer to Shirley (and her two sisters, Hannah and Olivia), Rochelle says she was able to spot the signs that the doctors had dismissed (fatigue, difficulty walking, hiccuping, blurred vision and forgetfulness).
Rochelle's father, James, had sadly already passed away from cancer when Rochelle was just fourteen. "Because of what we'd been through as a family with dad, my bond with mum was such a close one. Moving back in with her wasn't even anything to consider," Rochelle says, when explaining her transition from average twenty-something to full-time carer. "I could get another job, another flat, but I couldn't get another mum."
She adds that she feels fortunate to have been in the position to be able to do that, but that she soon felt the pressures of her decision, "When we first heard mum's diagnosis, I had Hollywood-esque visions of bucket lists and of receiving letters from beyond the grave, like in P.S. I Love You. But the reality of being a young carer is very, very different."
The reality of being a young carer
In a short space of time, Rochelle's days were spent finding disability parking spaces at hospitals (while taking Shirley to appointments), cleaning up sick, dispensing tablets, cooking, battling a mountain of paperwork and admin, advocating for her mother in the presence of doctors (who often used medical jargon, which could easily throw many people off) – all while trying to create special memories, many of which she says she now realises happen during the most seemingly insignificant day-to-day moments.
"You think it'll be the big holidays and events that you'll miss, and you will, but it's also the 'smaller' things, like how your loved one smells, what holding their hand feels like," Rochelle shares. "I wish I could remember what my dad's voice was like. With mum, I'm so glad I took so many photos and videos to capture her."
Focussing on creating memories and taking on a new shedload of responsibilities saw Rochelle initially go into autopilot mode, she says. "There was little time to stop and consider the impact that taking on those duties, almost becoming a parent rather than a child, would have on my own mental health. The focus is on the person who is ill, and I'd be asked countless times a day 'Are you Shirley's carer?', forgetting my own identity and losing my own voice in the process."
The financial aspect was extremely tough too. Caring is a full-time job with little to no holiday, and it saw Rochelle receive just £55.55 per week (which she split with Hannah, who also shared the work with her). Today, she would receive around £67.25 per week, equating to an equally low 75p an hour – and yet, each carer saves the UK economy over £19,000 a year. "That's a staggering £132 billion per year in total," Rochelle points out. Research from Carers UK shows that eight in ten carers feel lonely or socially isolated too, and 72% say that their mental health has suffered.
"I wish I'd asked for help sooner, with both practical tasks and my own mental health," says Rochelle. "With a terminal diagnosis, you get 'buy one get one free' on grief as it's almost like you lose your loved one twice, watching them deteriorate. But I was still so determined I could do everything by myself while dealing with all those emotions. Of course, no one person can do everything."
The second her mum was diagnosed, Rochelle says it felt like a ticking clock appeared above her head. "I didn't want to miss a second with her. Even though taking her to the supermarket with me meant it took three times as long and was more stressful, I'd feel so panicked going alone." Her social life took a hit too, as Rochelle didn't want to be more than a few metres away from her mum. "I cancelled plans, feeling anxious at the thought of a night out and I didn't have the emotional bandwidth to listen to my friends talk about their new boss, or dating."
Rochelle adds that although people often use the example of 'Put your own oxygen mask on before helping others', she prefers to think of it like a phone in need of charging. "That oxygen mask metaphor never worked for me, I just thought 'I'll hold my breath while sorting mum, then take care of myself'. But really, like phones, it's okay for a carer to take time out to 'recharge'," she explains. "Be that through taking a walk, having a night off, crying, screaming, whatever you need to do to feel better is okay – you're never going to feel normal in an abnormal situation."
You have to be gentle with yourself too, Rochelle adds. "You're never old enough to lose a parent. It changes your whole world view, suddenly the grown-up who has all the answers, doesn't anymore. It's a hard truth to face, the feeling of losing your safety net, so don't rush the mourning process and recognise how strong you are."
Reaching out to organisations connected to your loved one's specific illness can be game-changing too (for Rochelle, that was The Brain Tumour Charity). "St Elizabeth Hospice were brilliant at anticipating our needs as well, especially with things like equipment, and Marie Curie sent a nurse to us the night mum died, seventeen months after she first fell ill, who guided us through the final hours and gave her the medical support she needed." Carers Trust have plenty of useful resources too.
Writing also helped Rochelle to process the deluge of emotions that come with caring for a terminally ill loved one and she started a blog detailing her experiences, which became the basis for her newly released book, Handle With Care. It contains practical advice for carers, as well as being a beautifully written (and at times humorous) memoir about grief and learning to live again after a painful loss. It comes highly recommended:
As well as the points shared in her book, Rochelle has the following advice for anybody who is supporting a friend who is a carer.
How to support a friend caring for a loved one:
Rephrase any offers to help
Rather than saying 'Is there anything I can do?', try messaging with 'I'm free on Tuesday night so I'll come and collect your ironing (unless you tell me otherwise)' or 'I'm dropping you over dinner on Friday'. "When you're already dealing with so much, having to think of specifics is just another thing to go on your endless to-do list," says Rochelle. "I was so grateful when people took the initiative."
Avoid recommending 'self-care' tips
There's a big difference between self-care, which can help maintain a good sense of mental wellbeing, and somebody who is already dealing with actual ill mental health. "Green juices and candles won't fix serious mental health struggles," says Rochelle – but supporting somebody in going to the GP, or helping them to find local support services (such as hospices), will make a genuine difference.
Don't pretend you understand
It's hard when friends can't relate, Rochelle notes, but it's worse they try to pretend they can, or say nothing at all. "I had someone on Facebook message me saying 'I know what you're going through, my mum has high blood pressure and my dad has gout', which is in no way the same." If you don't know what to say, just be honest. "If people didn't reply to me, I worried it's because they thought I was boring or depressing," says Rochelle. "Instead, saying 'I can't imagine how hard this must be, I'm here whenever you need me. No pressure to reply either, I know you have a lot going on' will go a long way."
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