Do I have a carer? And if so, who?
For some disabled people, it’s easy to answer this question. My friend Imogen is a single person who lives independently, supported around the clock by two carers – one week on, one week off. For those of us who require more support, however, it’s a grey area.
I don’t call any one person my carer. It varies; if I go to a gig I always take advantage of the deal for disabled people and get a free ticket for an “assistant” or “companion”. After all, I need help manoeuvring especially when I’m tired, and will need someone to fetch and carry from the bar for me throughout the event. The person who comes with me is usually my husband but not always; it depends which band’s on. I had a number of female friends competing to be my carer when I had tickets to see Robbie Williams!
At home, I struggle to define who is my carer. I receive disability living allowance (DLA) at the middle rate for care, which means I need assistance throughout the day, and this is true. But £49 per week doesn’t go very far. For that I can buy 5 hours of time from my wonderful cleaner, Lena. She spends Thursdays sorting the house out, doing all the housework that I’m ashamed not to manage; everything from emptying the bins, through hoovering, to several loads of laundry. Anything which involved bending down or lifting more than a small weight is a no-no for me.
I call Lena my cleaner. Sometimes I check myself and call her my assistant instead; she will do other tasks such as rearranging the crockery cupboard, helping me sort a box of items, gardening, or just fetching a jumper for me from upstairs. In fact, to my knowledge Lena hasn’t refused a request yet, although she does sometimes offer to do too many things – I draw the line at letting her walk my dog!
But in fact, the help I need IS throughout the day and certainly throughout the week. I’m always asking my husband to fetch things, join me to prepare a meal, even to help me stand up. Social services refused me any help because I have a husband who can do it, although they offered me a list of carers that I could pay. But that’s not the same; if I was single, I’d need care and while I’d have to give up my DLA care allowance towards it, I’d need several hours of external support, ideally every day.
And this is the thing. Many partners become carers in a way that is not officially recognised. They do not identify with websites or support groups for “carers” but they are quietly there, assisting, whenever they are needed. They are the ones who are expected to be strong. They are the ones who can’t take time off with ill health. DLA could not even begin to cover the wealth of work they do. It’s a gesture but no more.
Although I have Lena as a formal assistant, it’s my husband who takes the role of my carer, going above and beyond his usual role as my partner. But if you ask either of us to name my carer, I bet we’d say Lena, or no one at all…