Last September, I became a carer to my 73-year-old mum who was diagnosed with myeloma, a rare and incurable blood cancer. In the months before, she had been suffering from bone pain, fatigue, and finding it hard to breathe. Initially, she was misdiagnosed by a doctor at our local hospital with angina. But we knew this wasn’t right as the medication made my mum feel worse and she nearly fainted after getting pain on her left side whilst at work at the time.
I escalated this to PALs (a complaints process) to finally get the right diagnosis, and five months later they found out it was myeloma, through a specific blood test which showed high paraprotein levels, but a lot of bone damage had been done by then. I remember waiting with my mum in the haematology department and being called in by the doctor to hear: ‘It’s blood cancer’. I nearly fainted and my mum just cried. It broke us. I’d never seen my mum cry before.
My mum’s diagnosis changed our lives completely. My mum was signed off on sick leave and I had to give up my job as a journalist, something I’d only recently plucked up the courage to switch careers to a couple of years prior. Using savings from my previous full-time employment to get by, I had to take on all the responsibility at home – my mum's appointments, cooking, cleaning, shopping, helping her around the house as she was too weak on her own, and everything else that comes with being a full-time carer – while dealing with the emotional turmoil of watching my beloved mum deteriorate. I had to watch out for any side effects from the chemo medication, lenalidomide, and the injections she has at the hospital like a high temperature and sickness, and we’ve spent many days back and forth to A&E.
If you feel lonely at this time of year, even if you're surrounded by people, you're not alone.
My mum was always a very fit woman; she would run, walk, swim and lift weights in the gym. She would go into schools to teach children to hula hoop. She got me into fitness. We did the London Marathon just five months before her diagnosis. She was fiercely independent, working as a sales assistant in Harrods for 20 years. Suddenly, as if overnight, the roles reversed and I became her carer. Luckily, I already lived at home with mum, but we have very little support from family and friends. I also couldn’t afford any caring support from local organisations. It was a huge shock to my system.
Christmas 2023 was hard. My mum was three months into her weekly chemo treatment and she was increasingly at risk of infection, so we couldn't make a plan to do anything for Christmas. We couldn’t even head out to the shops. Mum was so weak that she’d sleep most days. I remember friends talking about plans with their families, seeing people on social media going to Christmas parties and after-work drinks, none of which I could do. Instead, I was at home looking after mum and watching the occasional Chritsmas movie. This year, not much has changed. My mum is thankfully in remission but has lost a stone in weight. She still suffers from bone pain, fatigue and is so weak that she still can’t do many of the things she used to, though she is back to swimming and walking, trying to build her strength back up. She has to have monthly injections and chemo medication for life.
As isolating and lonely as it is, mum and I try to make the best of it. Instead of going out, we bring the festivities home by decorating the house with a lot of tinsel, bright lights and a small illuminated tree that changes colours. On Christmas Day, I’ll wake up early to make mum a cup of masala chai and breakfast of her choice (normally oats with cinnamon or toast and honey). Then I’ll prepare the Christmas dinner, a big vegetarian roast of roast potatoes, vegetables, plant-based burgers and stuffing. I also wrap up mum’s Christmas presents and hide them all around the house for her to find, a bit like an Easter egg trail. Although it will only be us on Christmas Day, I love spending time with mum, building memories with the person I love and care for. It’s all these little things that help us remember it’s a time of joy.
“Christmas is meant to be a time of joy and celebration but can be stressful for carers, as caring responsibilities often increase even further,” says Kirsty McHugh, CEO of Carers Trust. “Christmas can be a huge financial challenge. Two-thirds of carers have had to cut back on paid work or leave employment because of their caring role, driving many into poverty.”
Women typically bear the brunt of caring responsibilities, with the last census in 2021 showing that 10.4% of women provide care in England and Wales, compared to 7.6% of men. And it’s not just a burden being carried by the middle-aged either. In the UK, there are over 215,300 women under 25 providing unpaid care, and over 250,600 under 30.
From that one auntie who keeps pressing about your love life, to your prodigal sibling who hasn’t lifted a finger all year.
“Caring is 24/7, 365 days a year and it doesn’t stop for Christmas,” says Helen Walker, Chief Executive of Carers UK. “This Christmas, we encourage communities to come together and offer help to unpaid carers – a small favour could make a huge difference to someone struggling.”
Kirsty adds: “Carers need to know they’re not alone and there is support out there. Our network of local carer organisations offers vital advice and support all year round. To find your nearest one, visit the Carers Trust website.”
Life as an unpaid carer can be very lonely and challenging, but I try not to let that get in the way of the magical moments. Christmas is a time of love, giving and reflection, and I am grateful that I can share some of that magic with my mum, my best friend, this year.
If you're an unpaid carer and are struggling with any of the issues raised in this article, you can find support online, via email or over the phone atCarers Trust. If you are in the UK you can contact them on 0300 772 9600.
