This week marks Carers Week 2020, a week where we as a community can make visible, and celebrate, the often unrecognised labour and experiences of those in our community who care for others. In collaboration with NEST (the network for parents and carers at King’s), the EDI Function presents several blogs written by carers. You can find out more about NEST here. The first of our contributors is Isobel Ige:
I am an unpaid carer, one of an estimated 8.8 million adult carers in the UK. According to Carers UK, unpaid carers providing regular unpaid support for a friend or family member due to illness, disability, mental health problems or an addiction, save the economy £132 billion per year. There are approximately 5 million people in the UK who juggle a caring responsibility with work, which is a staggering 1 in 7 of the workforce. This means that many of your colleagues around you will have some form of caring responsibility, much of which will go unnoticed or unrecognised. Yesterday marked the start of Carers Week 2020. Carers Week is an annual campaign to raise awareness of caring. The theme for this year is ‘Making Caring Visible’ and to contribute to this, NEST (the network for parents and carers at King’s) is making visible some carers from our King’s community. To kick things off, here is my story.
I’ve worked at King’s for over 18 years, all of which have involved me being a carer in one aspect or another, firstly as a parent and latterly as a live-in carer for my mother, who has mobility issues and dementia.
I became a carer to my mother about 3 years ago, when dementia was confirmed after a couple of years trying to get a diagnosis. Dementia is a cruel disease and affects people differently. The stages of dementia are not defined – there’s no timeline, no cure, no ‘typical’ response.
To me the word ‘carer’ or ‘care-giver’ gives mixed messages. It implies devoted people, who’ve made selfless sacrifices to look after their loved ones. It also implies low pay, poorly valued work that is undertaken by those who don’t have many qualifications. I’ve become an unpaid carer to my mum by default, really. I have a sister, but as mum and I live together, the full caring responsibility has fallen to me and I just have to deal with it. I’ve got no say in the matter.
One thing I didn’t expect was the change to both of our personalities after the diagnosis. Mum was fiercely independent, a single parent, a teacher and very self-sufficient. However, she has now become clingy and doesn’t like being left (not just alone, but also by me). She can also be very stubborn and aggressive, which makes it hard to want to be with her.
However, it has also changed me as a person. I’ve become distant from my friends, I’ve stopped going out after work, I’ve become angrier. I shout more than ever (even more than when I had a teenager at home). I cry.
I used to consider myself lucky that I got to go to work every day, to ‘escape’ the situation, rather than being an ‘at home’ carer, looking after mum all the time. Going to work kept me sane and able to deal with the change in my feelings towards my mum. However, in the situation we all find ourselves in now, where I’m at home 95% of the time, it’s been more challenging than ever.
I often feel ashamed of my feelings and how I’ve dealt with the situation I’ve found myself in. I love my mum and I’ll continue to look after her in our home for as long as I can, but I don’t like her anymore. I don’t like the person she’s become, and I don’t like the person her dementia has made me.
School Programmes Manager (UG), School of Global Affairs
NEST Committee Member