A look back at being young carer for a parent with cancer
Date: 16 Mar 2021
Jess was 19 when her mum was diagnosed with cancer and sadly passed away shortly after. Jess shares her experience of caring for her mum and how she found the support from Marie Curie and Macmillan Cancer Support invaluable.
When someone you know gets diagnosed with cancer, it’s a shock. When it’s someone you love, you start to worry. When it’s a parent, and you’re the person they turn to for their care, it’s a huge responsibility for anyone – regardless of their age. When you’re a child or a teenager, it can very quickly become overwhelming.
I was 19 when my mother battled cholangiocarcinoma, and she passed away within 7 months of her diagnosis. A series of events at the start of her journey quickly led to me being her sole carer, and looking back, ten years on, I feel privileged to be able to discuss it openly and offer insight and advice to those who might be experiencing something similar right now.
At 19, I was arguably better equipped than most young carers to manage the emotional and physical responsibility it placed on my shoulders because believe it or not, I was old for a ‘young carer’. Many young carers are well under the age of 18, meaning even very young children can end up taking on the role of primary care givers.
Not only are young carers often involved in hospital visits and administering and monitoring medication for their loved one, but they have to pick up the slack within the household. For me, this meant supermarket shopping, school runs for my two younger siblings, helping with homework, laundry, cleaning and anything else you can imagine to make a household run smoothly. Staying up throughout the night to administer medication became my normality, as did becoming my mother’s confidant and personal assistant. This meant arranging all of her medical appointments, and coordinating her social life too. I was responsible for keeping friends and family up to date with her condition and organising visits around her chemotherapy cycle, so she would be at the top of her game to enjoy tea and cake with loved ones, and ultimately say goodbye.
Cancer is a cruel illness, affecting the entire family – not just the person directly battling it themselves. Throughout this time, there are two charities that really stood out. Charities with exceptional individuals that went above and beyond to support my mother, myself and our family.
The above video explains simply what Macmillan Cancer Support does. The phrase that hit home the most for me is ‘they know I’m a person, not just a patient’. This epitomises my experience with this exceptional charity. We didn’t need to find them, they approached us at the hospital during one of my mother’s chemotherapy sessions, and from there they stayed by our side until the very end and beyond.
I’d urge anyone experiencing cancer to visit the Macmillan Cancer Support website. It is a treasure trove of information, for the person battling the disease, as well as their friends and family. It covers everything you could possibly think about and I have every confidence in saying that this charity will be able to answer any question you might have.
After mum passed, I became much more involved with the charity, and helped to write the first edition of their Young Carer’s guide. Back then, it was called ‘Let’s Talk About You’. You can download the latest copy of Macmillan Cancer’s Support’s guide for young carers here.
The charity offering the most sensitive support was Marie Curie. In the final days of my mum’s illness, a Marie Curie nurse would arrive in the evening, stay overnight and leave in the morning. Our NHS district nurses had become increasingly worried that I wasn’t sleeping, and as a result, they referred us to Marie Curie, who were able to provide support for the whole family in the most practical and thoughtful way.
Specialising in end of life care, they were highly trained in recognising breathing changes just before death. Therefore, they were on watch throughout the night, ready to alert the family should the time come. Staying at home and being surrounded by family was exactly what my mum wanted, and it was this charity that made it possible. For that, I’ll be eternally grateful.