This story about a young man is fictional, but based on real-life contacts the writer regularly makes in her work, voicing the views of Learning Disability Family Carers with BCP Council Adult Social Care and local Health Services.
I spoke to a lovely young man last year. We spoke about fear, dreams, life, love, laughter, and tears. We spoke about supporting someone else, putting them first, in this instance for many years. All out of love. He did not see himself as a “carer”; just caring for his family.
We talked about how having a good personal life and social life can be challenging. Working and trying to learn new things or having a hobby can be even harder – just having the time and the energy. Sometimes, not wanting to explain everything to strangers, yet having to, time and time again.
There was so little support, but he gave everything to his loved one, regardless. He worried about what would happen if he could not help them one day. We spoke about what the options would be.
Caring can be a joy and it can be hard: harder than anything else. From beginning to end, it is about using one’s love, knowledge, time, patience, motivation, and more, to give to another person. To make their life better.
He told me about how sometimes professionals make you feel like you are being stupid or not listening to things that are very important to the happiness of the person you care for. He said that nobody seemed to have time to guide him through the various applications or becoming an employer for a personal assistant. He felt he was crashing through it all and just hoping for the best. Becoming an expert at it: more knowledgeable than most professionals, for nothing in return.
Sometimes he feels like nobody hears or understands… “like you’re banging your head against a brick wall … and then you go back for more…” as he once said.
“Being a Carer should be a proud thing!” I shout from the rooftops, but… then you ask, “Who cares for the carer?”
It is important to be seen and heard. To be recognised, and valued, so that your community, local authority, local health services and government see YOU and the contribution YOU make in its rightful place, as one of the founding pillars of our community.
At the end of the day, without you, the carer, who exactly (with paid-carer shortages and a fumbling economy) would provide all that support to those who cannot manage without it? And how much would that cost? Who would pay it? And what would that care look like? What would we need and want it to look like?
Carers – what do YOU need to continue to provide the amazing support service you are an expert at?
Written by Sini Lucas – Dorset Advocacy – BCP Family Carers Representation Coordinator
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