Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face and recognise the contribution they make to families and communities throughout the UK. It is also to help people who don’t think of themselves as having caring responsibilities, to identify as carers and access support. (Carersweek.org).
Changing Places campaigner and carer, Sarah Brisdion, regularly contributes to our blog. Here she shares her feelings about Carers Week and what caring looks like for her and her family.
How do I feel about Carers Week?
For me, Carers Week can feel like an empty gesture. People and organisations jumping on the ‘we support you’ bandwagon, giving us a ‘thumbs up’ on social media and being vocal in the press about how much they value carers, but doing NOTHING to actually physically or financially support us.
We’re offered meet-ups to hang out with other carers that we can’t attend, because we’re caring or working (or both). We’re encouraged to read online resources that quite frankly, we just don’t have the time to think about let alone look at, even if they were of help to us!
We’re thanked, for everything we do, for saving the country billions in care costs (trust me, we KNOW and we’re exhausted from it!). I can’t speak for everyone, obviously, but I am yet to meet a carer who does it for the recognition on social media! People care for their family members or friends because they LOVE them and have compassion and because there is often no other choice! I don’t need thanking for caring for my disabled child, of course I am the one to be the primary care giver. I adore him and it’s my privilege to be his mum. But I do need and deserve equality and fair pay to be able to do it properly.
The outburst of support this week won’t magically conjure up a week of respite for those who are precariously close to the edge. It won’t give anything to carers that is immediately useful. And the reality is, we’ll be forgotten again by most in a week’s time. But out there amongst the ‘bandwagon’ stuff, are voices that need to be heard. I really believe we need to amplify those voices so that change does (eventually) happen. We may feel powerless, but we must keep talking. Keep sharing our stories. Keep on keeping on. Because the truth is, it’s pretty much all we can do.
What does caring look and feel like for me?
I describe my caring/working life like trying to spin too many plates at once (and I know I am lucky), trying to make sure the ones I drop are not the wellbeing of my disabled child, which is a constant source of anxiety and guilt. But dropping any of my work plates also has consequences that I can’t financially afford. Being awake and alert enough to recognise which plate is which is also hard work!
I feel like I’m constantly failing. Failing my family, my friends, my clients (and myself). Nobody gets the best of me! I am unable to have any structure to either caring or work routines. Working late at night and on weekends is a common theme to ensure I am at my son’s aid when he needs me and so that I can attend the numerous medical appointments he has. Apologising constantly to everyone around me is also a big feature.
Having any kind of personal life is a struggle. I am so lucky to have great friends (they know who they are), who make sure I do get out and enjoy myself from time to time. But they literally organise everything for me – lifts, paying for tickets, making sure I have something to wear! I love them dearly and do not repay their devotion anywhere near enough. If it wasn’t for them, I’d probably never leave the house except for school runs.
I can count the number of times in the last few years that I’ve been out with my husband without our children, on one hand. Because let’s not forget the caring duties fall to him too. He is as much part of this picture as I am. If one of us is not here, the other HAS to be. There is no respite care that we have access to. There isn’t a local babysitter that is trained in our son’s care. And it’s getting difficult for our parents to step in as much as they could when our children were younger. They are all getting older and have their own health issues and other responsibilities.
I know we should look into personal payments to try to get our son a PA we could use. Funnily enough, I’ve not had time to do this and it can be (you’ve guessed it) a lengthy, soul-destroying process that is not guaranteed and one that I’ve not had the energy for yet. Mainly because other soul-destroying, lengthy forms such as Disability Living Allowance renewal and fighting for amendments to my son’s Education and Health Care Plan have had to take priority.
My health is rubbish. I have chronic pain from lifting injuries. I am so tired I struggle to get over one illness before the next hits me for six. Something that appears to be getting worse the older I get, naturally. This is something I know I need to prioritise sorting, but nothing winds me up more than people saying, ‘you need to make time for yourself’. We all know how important it is. But it isn’t that simple. Please give us that magic 48 hour day!
I often wonder what would happen if we all carers took Carers week off? People would no doubt die. That sounds dramatic, but I believe it. I think to say that carers are undervalued is possibly the biggest understatement in history.
Yes, there are organisations out there doing great things, signposting to the correct support and helping with applications. And there are places that do offer respite. But these are supporting all year round, unthanked and unnoticed.
So what can you do if you want to show your support for carers this week? Perhaps visit a family member or friend who cares for a loved one. Ask what you can do to help them. Ask employees that care if they feel supported and what would help them manage work and caring better. Everyone’s answer will be different. But to make a difference, you need to be prepared to take action.
I’m really grateful to Closomat for allowing me to use this platform to give me a voice.