Father running with disabled son in wheelchair

Carers: a 360 guide to better living

Caring for someone with a disability is a unique experience, which is why advice from other carers can be incredibly valuable. In this article, we share some top tips direct from carers, about how you can look after yourself, find support and juggle work responsibilities alongside being a carer. 

Recognising whether someone is a carer

There are 6.5 million carers in the UK. However, not everyone who’s a carer recognises that they are, so they may not be accessing all the available support.

Carers UK, in partnership with the Carers’ Trust, has developed a tool called The Carer Passport Scheme. The project is designed to help local areas introduce Carer Passports in five key settings: hospitals, employment, community, education and mental health trusts. A Carer Passport is a record that identifies a carer and sets out an offer of support, services or other benefits in response. 

Identifying yourself as a carer is often the first step towards accessing support networks and taking steps to look after your wellbeing.

Staying motivated and alert

One issue that carers can face is tiredness, as they may feel like their energy is being focused on lots of different things and feel overwhelmed if they don’t have enough time to rest.

Emma Baylin runs a singing group called Shared Harmonies, a not-for-profit company for people with conditions such as Parkinson’s, Dementia, and Long Covid. Carers are encouraged to attend as this can be the best way to ensure attendance of the person they care for, and it’s a great way to come together through the joys of music. She believes that singing can be an effective way to relieve stress and lift your mood, which makes your day more manageable.

“Singing is a lovely way to have a positive interaction between carer and the person they care for. There’s lots of evidence singing is beneficial. It reduces stress and releases endorphins, known as the ‘happiness’ hormone. This rebalances the nervous system, taking us out of the usual fight or flight response to stress. Start every morning with a song and you’ll find it far easier to cope,” says Emma.

Accessing support

Tania Taylor, a carer for her brother who has schizophrenia and autism, says: “Don’t be afraid to ask for help. Try and have a friend or family member pop round once a week for half a day so you can have a relaxing bath, nap, read a book, or go shopping. If you or the person you care for is struggling with
technology, contact your local council to ask about any support on offer.”

Vicky Borman has a 30-year-old brother with autism who she helps to care for with other family members. Her brother has a Motability Scheme car, which she says is an “absolute godsend”.  She adds: “It gives him the security of having something just for him. It’s his independence and maximises his living potential.” 

Good to know

The Motability Scheme enables disabled people to get mobile by exchanging their higher rate mobility allowance to lease a new car, Wheelchair Accessible Vehicle, scooter or powered wheelchair. Because lots of Scheme customers don’t drive, the lease includes insurance for up to three named drivers so the Motability Scheme car could be driven by a family member, friend or carer, it doesn’t have to be the disabled customer.

Therefore, as a carer, the Scheme can help by allowing you to become a named driver, appointee or nominee for the disabled person in receipt of the mobility allowance. Find out if the person you care for can join the Scheme with our eligibility checker.

Carving out free time

When you are a carer for someone else, it is also important to take some time to make sure that you are also looking after yourself. As Borman says, “try not to feel guilty about doing normal things.” Taking time out for yourself is not just beneficial – it’s necessary to maintaining your wellbeing as a carer. 

“You charge your phone every day. Think of something achievable that you can do every day to recharge yourself,” suggests Taylor.

Ana Louise Bonasera has four sons and eight-year-old twins with autism. Even with such a full plate, Bonasera makes sure she has some time for herself. “I recently joined a gym. This is my little bit of peace that helps me recharge so I can function and be patient when it’s challenging.”

Sarah Brooks, author of I Am Simple Natural Life,  has a disabled daughter with Cri du Chat, a rare genetic disorder, and three other daughters, one of whom has autism. She says: “Finding time for myself is challenging, especially as I juggle being self-employed and home educating. For many years when the girls were young, I was waiting for someone to recognise what I was dealing with and say ‘you must be tired out, let me take over and give you a rest’ – but of course no one did! The lesson I learnt is that the only person who can prioritise your needs is you. So I started doing small things every day that would show myself some care.”

Juggling work and caring

It’s vital you let your employer know that you are a carer. This is because co-workers and line managers can’t provide support if they don’t know that you need it. Letting colleagues know can be really beneficial, because people are often more than happy to help. The Carer Passport Scheme offers good ways to do this.

Jen Mellor is a carer to her 16-year-old son who has autism, Tourette’s and some physical health issues. She runs a health and wellbeing business, and advises carers who are juggling their role with work not to try to do it all: “Remember everyone’s circumstances are different and never compare your family to anyone else’s. It’s ok just to do enough. No one needs a show home, perfectly made-up face or immaculately ironed clothes.”

Planning for an emergency

There are also things you can do to ensure that should anything happen, you will be able to manage the situation as best as possible.

Mary cares for her husband who has Parkinson’s, and suggests some good ways to stay prepared:  “Have several ICE (In Case of Emergency) numbers keyed into your phone. Appoint people who will help you in an emergency. Consider the worst-case scenario such as a fall, and plan in advance how you can deal with this. Make lists of what needs to happen in an emergency, as it’s much easier to plan ahead than when it actually happens. Assume the worst while hoping for the best.”

These practical tips can help you plan things out ahead of time, so that you are more well-equipped to deal with them should they happen. This will help you as a carer manage the situation at hand, while ensuring that the person you are caring for receives any help that they may need.


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