I don't often talk about my caring role, especially in public where my daughter is likely to see it, as I respect her privacy too much to do that. But as it's Carers Week (and with her permission), I'm going to make an exception to that rule just this once. You see, as the full time carer of a loved one, I don't see what I do as a job or a chore. I love my daughter, and I do it because I'm her mum and that's what mums do. The fact she's now 23 and still has to rely on me for so many things doesn't even come into it. She's my little girl. And I'll be here to take care of her for as long as I'm able to (but that is an issue for another day).
But. Yes, unfortunately (as much as I hate it) there has to be a but.
That love is what the UK government relies on. It knows that we're never going to give up on our loved ones, no matter how poorly we are treated. Being a carer is hard. My daughter has complex disabilities that most people don't understand, not even those closest to us really understand most of the issues she has to cope with.
I think most people believe that as I don't go out to work every day, I just sit on my backside doing nothing. They don't see the lifting and handling, the physical help needed to get in and out of bed, to get dressed, to wash and shower, to take care of toileting needs, or the help with personal care issues that can be required at any time of the day or night. Just because we don't complain about it, doesn't mean it isn't happening.
And it isn't just physical support. It's emotional support, financial support, the day to day routine of every day life, trying to ensure she leads as full and as active a life as possible. And it's bloody hard! Especially when outside help is practically none existent. Luckily I have a great husband (that works full time), who will always help out whenever he can, but the majority of her care is down to me and me alone.
My daughter needs support in so many aspects of her life that other people take for granted. It can be a lonely life, both for me as her carer and for her as a young person who has a disability. And that care needs to be available 24/7, 365 days of the year. When we go away for a few days, my caring role doesn't stop. My daughter's disability doesn't go away. It's just relocated to a different place.
And just because I'm a carer, please don't think that I'm a saint. I have good and bad days the same as anyone else. I don't always have a beaming smile on my face and neither does my daughter. We're only human and sometimes the situation we're in can become too much for both of us. We argue and bicker just the same as any other mother and daughter, only with the added pressure having a
disability and being a carer can bring.
The love and respect we have for each other is what helps us through the hard times. We smile and laugh (sometimes at things that would bring other people down to their knees), and yes, sometimes we cry. Life is hard, but it isn't all bad. We're mostly happy.
But do you know what would make us happier? If people could understand that living life as a person with a disability isn't easy. It isn't a lifestyle choice, and neither is being a carer. We're not 'scroungers', as people with disabilities are so often labelled these days. We're just people who are making the best of the hand they've been dealt. All we want is to be treated fairly and with a little bit of respect.
Please don't treat us as though we don't exist, or that our lives are not as important as anyone else's. Allow us to be visible in our communities, to be valued members of society. Please let our voices be heard.
Thank you for reading.