For Carers' Week 2020, the theme is 'Making Caring Visible'. During our virtual cuppas, we discussed what this meant to each of us unpaid carers. What we've discovered is that there are many different meanings and layers to being 'visible'.
External Visibility versus 'Self' Visibility
Firstly, there is visibility amongst different 'external' audiences. For example, visibility with our friends, the local population, local services and with our Government. And what this type of visibility means for us.
Ultimately, it directly impacts how we're regarded and supported, emotionally, practically and financially.
But interestingly, what also came out of our chats, is that there is also visibility amongst ourselves, or 'self-visibility'. Many of us shared stories of not realising we were in fact a 'carer' for a long time with it usually taking a GP (or similar) to point this out. After all, we're also a wife, a husband, a parent, a son, a daughter, a sibling, a grandchild, a neighbour.
This undoubtedly means there are many people still out there, who are not aware of their carer status, and so excluding themselves from support. And this is one (of many) reasons, why visibility is valuable. The more visible we are, the more visible the role of a carer is, the more other people will recognise themselves as carers. Making it possible to seek support sooner.
"Unpaid carers as a whole are invisible. I was one for so many years and didn't know I was one, I thought of myself as an intelligent person, working etc - not a carer."
In addition to this, the word 'carer' can be emotive for some of us. Indeed, for a significant minority, 'carer' is not in fact a word we want to identify with.
"I'm not a carer, I look after someone."
"I always say I'm a wife, I'm not a carer, I'm a wife. I hate the word personally."
The word 'carer' carries different meanings for us all. For a wife or husband to suddenly find themselves as a 'carer' to their spouse, has perhaps a different impact to say a parent 'caring' for their young child.
We all come to this role with a different meaning associated to the word 'carer', and that's absolutely fine. We've stuck with the word 'carer' through this blog, for simplicity, but it can also mean 'someone who looks after/supports/helps' - whichever resonates with each of us.
"I 'care' for all my children, so being told I was a 'carer' to one of them was really strange at the time."
Words can be emotive. Good or bad.
Putting aside the linguistics however, what does greater acknowledgement and visibility of being a 'carer' or 'looking after someone' give us? It must be important. After all, it has been chosen as the theme for Carers' Week 2020.
What would greater external visibility give us? And what does it look like? Here are some of the thoughts we have been having within our cuppas.
"Give me a badge", "I don't want a badge", "Acknowledgement of everything we do is important", "More people would recognise they are in fact a carer", "We would be recognised."
So there is something around personal recognition. And with that, easier access to services, in our recognised 'carer' role.
It seems to us that perhaps the economic value of the work we each do, is still overlooked. During the lockdown, we have been clapped for the NHS (and rightly so). But an article in The Guardian, posed this;
"There are approximately 6.5 million unpaid carers in the UK. That’s more people than are employed in the army or work in the NHS. But we are not valued, we are just ignored. When you think about it, if there are up to 6.5 million carers, that means there are 6.5 million people being kept away from hospital."
In the past, the value of the work unpaid carers do, has been related to the equivalent of an entire second NHS. Let's just pause and think about that. Think about it in the context of the profile our work has.
When we put it like that, it's hard to believe we are 'seen'.
Now, that's not suggesting we all want to stop caring and use the local hospital and respite facilities full time! What it does do however, is demonstrate the value we provide to the economy. And while we are caring, many of us will have our income impacted, where working becomes untenable for many of us.
But there aren't just financial implications. There are emotional and wellbeing implications too, which largely go unsupported.
It would seem that the longer we remain invisible, the longer we remain underfunded and unsupported. It's clear that the Coronavirus gave the NHS the visibility it needed. And that perhaps it will now get the financial support and recognition it needs to continue sustainably.
But what about unpaid family carers, propping up an under funded adult (and child) social care system? How long can we be left to cope alone? What is the final last straw? What then, for those needing care and for the economy?
"You can't pour from an empty cup."
A saying we use a lot, when considering our own self-care. But we might say it's equally applicable to the 'system'.
"The cup is empty and let's hope 'visibility' will fill it."
Without identifying ourselves as carers (or having carer responsibilities), we can't even begin to realise the level of the additional work and responsibility we have taken on. Or to access the support that will keep it sustainable.
"My GP calmly ticked a box on his computer to add me to the practise carers register and asked me if I had considered respite care. It was quite a relief to be given the label of carer. It helped me understand I was dealing with more than I had realised and needed to think about the support I had around me."
A sense of duty often keeps us from seeking help or admitting we need it.
But it's more than that. There is no clear communication out there, helping us to readily identify ourselves as unpaid carers. It relies on us picking up a leaflet in the Doctor's surgery or perhaps an un-rushed GP pointing it out for us.
The more visible we can make 'carers', the more easily other 'carers' can identify themselves and the support they need.
And so, we're beginning to see why the theme 'Making Caring Visible' was chosen.
The Mobilise community have been fantastic at articulating what that means at an individual level.
What can we do?
Carers' Week is not just one week for us - it's every week and the purpose behind everything that we do. So let's get visible. Let's talk on Zoom by joining our Virtual Cuppas, available from Monday through to Friday, on social media, and in the streets.
Simple ways to get visible:
1. Join our Mobilise Facebook community and share any caring questions or posts.
2. Invite a carer friend to join a Mobilise Cuppa.
3. Share this blog on social media - links are at the bottom of the page!
4. Follow us on our Instagram account!
"Let's get our invisible army, visible."