“ I think what you do is amazing” “I couldn’t do what you do”
We are normal people ( well fairly normal in my case). We do it because we love those we care for. We aren’t all lovely and naturally nurturing. More often than not we are “assertive” and “difficult”.
“God never gives you more than you can handle”
Bollocks. I passed the “more than you can handle” stage about 4 years ago. Hmm is there anyone I haven’t cried at?
“God only gives special children to special people”
Fuck off. Half the time I’m an absolute twat- which my husband can attest to.
Seriously I get the comments, I understand the positivity in the intent behind them but it’s not helpful. It perpetuates the superhero carer identity myth and although I could quite fancy a cape or anything that brings me closer to Captain America ( I’m looking at you Chris *wink*) attitudes like these throughout society can be harmful. They suggest we can always deal with whatever is thrown our way, putting unintentional pressure on us to just keep on going. It also cleverly takes the onus away from the budget holders who could make a difference to carers by providing the right sort of support such as respite and paid carers. If carers are so amazing and wonderful and oh wow etc surely they don’t need help...
Boris says we are “inspirational”. Well Boris can fuck right off.
The stark reality is that “non working” carers or those earning below £128 per week are given £67.60 per week in carers allowance for proving often 24 hr care. It’s not a lot. These are people who struggle to fit in work due to their caring commitments. The person you care for always comes first. Meetings, reviews, appointments, deliveries and assessments are time consuming and the assumption is always that you are available. And that’s if they are well. Frequent or prolonged hospital stays put another wrinkle in the working plan, and why I myself gave up working back in 2012. If life becomes (more) difficult as a carer professionals may be quick to suggest you work less or actually give up work to make things “easier” on yourself. For some of us this isn’t an option for financial reasons. For others working is a break from caring, and provides the human contact that can be missing from our lives, caring can be incredibly lonely. Also why the very fuck should we give up working? All ( ALL!!!) we need is flexibility and better access to services and support.
With carers nationwide already donkeys on the proverbial edge COVID came along and took an already tenuous support system and fucked it over. “Due to COVID” is a most excellent all encompassing get out to explain away delays in so many things.
The general population have struggled with lockdowns and isolation away from their support networks. These feelings are multiplied for carers shielding relatives and friends due to their vulnerability. It’s been terrifying.
Returning to my point about social media. It’s not enough to post your praise and respect for carers. We are stressed, medicated, and broken.
So what can you do to help? You can support us by supporting the people we care for. Make their lives better.
Broaden your knowledge of disabilities including hidden disabilities.
Be mindful in making your businesses and services more accessible. If morals and ethics aren’t your thing think of the profits. People with disabilities and carers spend money too. You will reap the benefits as good reviews spread like wildfire in the SN and disabled communities.
Be a friendly ear.
Object to cuts in budgets around health and social care. Push for recognition of paid carers too who do a highly skilled brilliant job for crappy pay. Support an increase in carers allowance.
Think about your friends who are carers when making plans. Sometimes with a bit more notice we can attend events and happenings. Coming to us can make things so much easier too.
If you are a health or social care professional recognise that carers can be unsure about what to do. Our decisions ultimately are huge, especially for those of us caring for people who can’t advocate for themselves. We are terrified about making the wrong decision. We second guess ourselves constantly. You will likely get a different opinion from us on different days. We may change our minds. We may be tired and sometimes a bit of an arse. We may be uncontactable and then struggle to call you back. We may forget things- believe me we have more than a few things to remember. We have so many appointments that we can’t be sure what we’ve already told you. We get confused about who’s done or said what to who, and what we said we would do. Meetings can often feel like an exam I haven’t studied for. And unlike my finals I can’t get up and leave half way through to go to the Students Union for a pint...
That’s about it really.
A word fart blog post and now this “amazing inspirational wonderful brave noble and selfless” human is off to bed, hoping to wake up valued visible and supported.
Beautifully put. Since cancer surgery disabled my husband i've discovered how much this is true. And it sucks. Cash is much more useful than platitudinous nonsense about how "strong" you are. I see you.
ReplyDeleteOmg I'm howling laughing, your brilliant. Yep get it all. Inspirational my ass, Jesus I'm inspiring mad woman who cannot take a break, because noone can help or look after my daughter and noone really gives a shit when they close their own hall door!
ReplyDeleteI too feel the general fatigue that comes from looking after a special needs boy for 20 years. I sometimes look with envy at those who can just drop everything or persue their dreams.
ReplyDeleteI am also aware of the enormous cost of respite and any form of residential care. So much so, that if you could offer me £1 million to look after my son for the rest of his life, I'd refuse it, it wouldn't cover the cost. So far from telling the PM to fuck off or any other MP for that matter, there is a part of me that is very grateful to be living here in the UK. Yes, there's always room for improvement but not for complacency but when I look around the world, I am clearly one of the lucky, undeserved winners.