When we asked this question in the Mobilise community of carers, it was one of our most ever replied-to posts. It seems there is a lot that scares us, AND that there is a lot of common ground over what scares us.
While we sadly can’t solve all those fears. We hope we can provide empathy among carers, share some great advice (written by carers), help us manage our fears and feel a little better.
If any professionals happen to read this, then you may be able to identify some simple things you can be doing to help unpaid carers manage these fears.
The ‘top six’ fears of unpaid carers
1. Who will care when I’m no longer able to
This came ‘top’ of this ominous list. The fear of who will keep on caring when we’re no longer able to. Where the person we care for will live. Who will be their champion and ‘hold it all together’.
“This isn’t just something older carers worry about. I’ve been worrying about it since my daughter was born. It hangs in the back and sometimes front of your mind. It can feel very heavy.”
There’s the emotional worry that a ‘stranger’ could never care as much as we do. But there is also the very practical worry around funding.
This takes a big toll on carers’ wellbeing.
How can we help ourselves?
While we can’t entirely remove this fear, carers share there are things we can do, to be as prepared as possible:
Creating a One Page Profile
2. Finances and money
Worries around money came second, particularly what will the financial situation be as we get older. What happens if we're no longer fit to be a carer or we become hospitalised/sick for a few days? Who will be the one to be on top of payments?
These are all very real worries. Whilst our situations will vary at different points in time, we've created a handy benefits and savings toolkit to ensure we're all getting what we're eligible for.
Knowing what financial support we're entitled to early on can give us some peace of mind and help us prepare a little beforehand.
3. Unexpected phone calls
From our phone ringing in the middle of the night, to unexpected calls from our social worker. From seeing the school’s phone number flash up on our screen to a paid carer calling to cancel.
It would seem that many of us have a default mistrust and fear of unexpected phone calls.
Of course, not every phone call is bad news. However for many of us, there have been enough difficult phone calls, for us to have developed a negative response to receiving an unplanned call.
“Every time the school phones I expect bad news. I don’t really know why, as 90% of the calls are for trivial reasons. It’s definitely helpful when their opening line is ‘Hi there, nothing to worry about…’ as I breathe out a sigh of relief”
How can we help ourselves?
Like the carer above says - not every unplanned phone call is bad news. Taking a moment to notice when phone calls are not bad news, and possibly even ‘good’ news, can help us to build a new belief.
“When the phone rings, I try to take a breath and think ‘it might be OK’. It stops my mind raising and my heart rate elevating (quite as much!)”
4. “Can you just…?”
Those three innocent words! Sometimes hidden as “would you mind…”. They often appear when our bottom is about to have a rare moment of sitting on the sofa.
Of course, the timing can’t always be helped, but it can feel incredibly frustrating.
How can we help ourselves?
Carers share that ‘accepting this fate’ can be helpful. Rather than setting ourselves up for the inevitable disappointment.
But that’s only half the picture. We absolutely need to be finding those “bottom on sofa” moments of self-care. Whatever they look like. It’s also helpful to notice those moments when we do have them - it’s so easy to 'not notice' that ‘cup of tea in peace’. Especially as these moments can be ‘blink and you miss them’. But by pausing to notice them, we really can help ourselves to feel a little better.
We discuss how to take care of ourselves, when there’s no time to take care of ourselves. Focussing on the small things we can do in and around our busy days.
5. Brown envelopes
Ahh the ‘innocent brown envelope’. Bringer of DLA forms and DLA decisions. Along with many other forms, decisions and endless ‘admin’ tasks. All which require far more than just ‘time’ (of which we have precious little). The tasks within these brown envelopes are plentiful and emotionally draining.
How can we help ourselves?
Well we wish there was a way to reduce the paperwork. But in the absence of that kind of magic, we can share some more practical measures…
Fixing our ‘to do’ lists and getting more time for the things we love
6. Not being ‘good enough’
That we might forget something or muddle up medication. That the feeding tube may end up in the lung, not the stomach. That we might run out of mediation. That we may miss an appointment. That we’re not providing enough home therapy or entertainment. That we’re not feeding them well enough. That we can’t ‘fix’ their mental health with love.
These are just a snippet of the things we worry we’re not good enough for.
How can we help ourselves?
As carers we can hold ourselves up to an impossibly high standard. Something we can really only ‘fail’ when measured against. So let’s start by cutting ourselves some slack.
Ask ourselves - what would we say to another carer who felt they weren’t good enough? Let’s start by applying that same level of love and compassion to ourselves.
We’re doing a phenomenal job in incredibly challenging circumstances.
7. Our own mental health
For many unpaid carers, there has been a big impact on our own mental health.
Whether our caring started after a ‘crisis’ moment, or it crept up on us. Many of us eventually get to that point of carer burnout, where our adrenaline has worn off and we’ve been running on the stress hormone cortisol for too long. Burnout is a very real risk and lived experience for many carers.
How can we help ourselves?
So simple and yet so hard. We need to know that ‘we matter’ and we need to prioritise ourselves. This can be incredibly challenging, when we are both time poor and exhausted. But if we want to be able to continue caring, then it’s help to remember that:
“A car without petrol gets us nowhere - we all need refuelling so we can carry on the journey.”
Some things that may help:
What's next?
Why not start right now? Look out for a moment in your day when you can pop the kettle on. Take a ‘bottom on seat’ moment and have a read of our articles, on looking after ourselves.
Find something that inspires you and make a small start. If you need support, our cuppas is brilliant place to pop into.
We look forward to meeting you. ;)
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