Something we often see carers talking about in the Mobilise Hub are the day-to-day common caring challenges we face, along with tips on how we can get through them. And the community has shown time and again what a great wealth of knowledge we have collectively, as carers with varied lived experiences. Sharing how we have each found ways to overcome, or manage, the challenging aspects of our caring roles.
In our latest ‘Mobilise Moment*’, we asked our community of carers, what type of tasks have felt the most challenging over the last week.
“Over 38% of us said we found emotional tasks, such as advocacy and emotional support the most challenging.”
Nearly two hundred carers shared insights into which, and why, certain aspects of our caring roles can feel more difficult. Along with their top tips and words of wisdom on ways to combat these common challenges.
Caring can impact us in a variety of ways, big and small, we explore this further in The impact of caring. But there seem to be some common challenges we all struggle with.
We explore these below, along with survival tips from other carers, and links to useful content. Not all of the advice will feel right for everyone.
We can treat this as a selection box, and pick out what works best for us.
Emotional and mental health challenges with caring
Over 38% of us find it hard to manage the emotional tasks of caring. If the person we care for is experiencing some big emotions or perhaps a change in their personality, that can have a huge impact on us.
They (and we) may be coming to terms with a diagnosis, a terminal illness, or a degenerative condition (to name a few). Certain conditions will bring about a change in their personality too. It’s hard work looking after our own emotions and showing up for someone else, whilst keeping all other aspects of our lives ticking over.
We may also find ourselves feeling resentment towards the person we care for, or struggling with mental burnout from always ‘being on’.
What carers said felt hard about the emotional side of caring
“Maintaining my own mental health”
“The emotional toll”
“Having no one to talk to”
“Keeping upbeat and positive all the time”
“Remaining patient and encouraging”
“That it’s relentless”
“Never knowing what's going to happen next”
“The expectation that I will be available at any time’
What carers say can help with the emotional challenges of caring
It can be hard to take advice from others (particularly if it involves the words ‘stay calm’ or ‘just breathe’), but when the advice is coming from other carers with lived experience - then that feels different. Where appropriate, we’ve linked through to further content that may help.
“Stay calm”
“Allow time and space for your own feelings. It’s OK to feel sad and upset”
“Work on our mental and emotional resilience”
“Sleep”
“Don't put pressure on yourself. Carer's guilt doesn't help you, or the one you love”
“Have a sense of humour”
“Take time to unwind”
“Remember how vulnerable emotionally and physically the person you are caring for feels”
“Try and remember that it’s the disease, not the person”
“Try not to internalise their mood”
“Count to ten”
The physically draining side of caring:
Voted as the second most challenging part of our caring roles, at nearly 20%, it is clear many of us struggle with the physical demands of caring.
Be it lifting the person we look after, pushing their wheelchair, or just always being on our feet and on the go, we can really start to feel the impact on our energy levels and strain on our bodies over time.
We might want to look into options for adaptations we can make to our homes which could help take some of the strain off, such as chair lifts, or handles for getting in and out of the bath or shower.
What carers said felt hard about the physical side of caring
“I’m exhausted”
“Not having any energy”
“It’s physically difficult, especially lifting wheelchair in and out of car boot”
Ways to look after our physical health when caring
“Do muscle strengthening exercise and look after your back health”
“Do daily light exercises to build up strength”
“Little and often. Do a bit, rest a bit”
“Bend your knees, not your back”
“Look after yourself, you only have one body”“Take time for your health too”
“Don't let yourself deprioritize your own personal care / ringing the GP for yourself, etc”
Admin and time management challenges with caring
15% of us felt that admin was our biggest challenge. As carers, our admin load can be heavier than most, so it’s no surprise that some of us are struggling.
With extra emails, regular appointments, forms to fill out, and a minefield of financial paperwork, admin can take up a big chunk of our lives. Pair this with never-ending to-do lists and it can end up feeling like we are chasing our tails all day.
What carers said felt hard about the admin side of caring
“Time to do all the admin and phone calls needed”
“Chasing other people”
“When each task seems to create two more jobs to add to the 'to-do' list”
“Never enough time”
“The never-ending work”
“Finding the time and then actually wanting to do the task whilst feeling emotional"
“Working full time and frequently asking boss for time off for their appointments”
Time management and organisational tips the carers found helpful
“Do tasks straight away and don't let them build up”
“Break tasks down into smaller manageable ones, and tackle one at a time”
“Take control of the important paperwork and file it safely out of the way”
“Don’t beat ourselves up if we don’t do something every day, e.g. teeth brushing”
“Use a phone calendar with reminders for yourself plus a week per page diary for the person you are caring for”
“You can only do what you can do”
“If you cannot do things today, there is always tomorrow”
Decision-making and long-term planning:
Decision fatigue is a real thing and can become an increasing issue, especially when paired with already feeling mentally burnt out. Low mood can also lead to decision paralysis. And actually we may just be weary of making so many decisions.
As carers, there are many decisions we are confronted with each day, big and small, which can all take their toll. A lot of these decisions might subconsciously be tied to heavy emotions. Particularly when thinking about the future of the person we care for, but also their response to decisions we’ve made on their behalf (it’s a huge responsibility).
It can feel like a lot of pressure to be responsible for making these choices for someone else, but it might be helpful to recognise we are not alone in feeling that way. Knowing our legal rights as carers and where to go for additional help and support might be helpful when it comes to making decisions.
What carers found hard about decision-making and planning
“Making decisions, and being concerned if I'm making the right ones”
“Thinking about the future”
“Having to make all the decisions”
“Financial terminology and long-term planning”
“I’m always worried about getting things wrong”
Carer tips for combatting decision fatigue
“Don't rush or make knee-jerk decisions. Ask for advice and take time to think things through”
“Take your time so you can fully understand what’s needed”
“Perseverance!”
Understanding the system and getting support:
Navigating the world of carer support and all its options isn’t always easy, and we can end up feeling like we take one step forwards and two steps back each time we start a new process.
We are certainly not alone in feeling this way. But, if we can get through it, getting additional help with our caring role can make such a difference. If we haven't already, registering as an unpaid carer is a great place to start.
What carers found hard about navigating the system
“Researching, so I can advocate properly”
“Not knowing what support is available to us”
Carers tips on getting more support
“Try and find people in similar situations as yourself”
“Tell GP that cared one is housebound so that home visits are offered”
“Don’t be hard on yourself, this is hard”
“Don't give up!”
Reading what others in similar situations are struggling with can feel hard, but sometimes it can be comforting to know that there are others out there who are finding these things challenging. That we are not ‘bad’, ‘weak’, or ‘wrong’ in how we feel. And that other people are out there who understand, even a part of, what we might be going through.
Hopefully, this has given us a few things to try. Or reminded us of coping strategies we already knew, but might have forgotten to prioritise when sucked into the constant daily rush of caring. At the least, hopefully hearing others out there are going through similar situations, and feeling similar emotions, makes us feel a bit less alone.
This is where joining the Mobilise Hub might be helpful, connecting us with a community of unpaid carers from around the UK.
Want more content like this?
If you would like to take part in our next Mobilise Moment and receive bespoke support in your caring role, sign up to receive our weekly email. Or head over to our Mobilise Hub to connect with thousands of others also caring for someone.