Being a carer of someone with a learning disability or autism can be a hugely demanding role, and one of the most difficult aspects for carers can be feeling able to take a break. It might be tricky for you to see yourself as a priority when your main focus is on caring for someone else who needs your support, but taking care of your own needs is vital. Looking after yourself means you can sustain your caring role in the long term, and this is especially important for carers of people with lifelong conditions like autism and learning disability.
One way to do this is by accessing respite care, and here we explore what respite care can look like, and how you can make it work for you.
Respite is also known as ‘respite care’ or ‘short break care’ and is time away from your caring role so you can rest and recharge. You could view respite as a crucial component of your carer’s toolkit, there to support your ongoing health and wellbeing, and enabling you to support the person you care for most effectively. Respite care sometimes involves someone else stepping in to support the person you care for so you can have a break, or book time to relax and re-energise. At other times, respite care might involve the person you care for enjoying a short break or receiving residential care outside the home. This would give them the opportunity to socialise with others, as well as giving you as their carer some time to relax. In every situation, respite is about creating a positive experience for everyone involved.
Accessing respite care doesn’t always seem easy or even possible for carers, and you might feel this, especially if you are caring for someone with autism or a learning disability who may find change and a break to their everyday routine very challenging. However, regular respite can be part of supporting the person you care for to adjust to someone else caring for them should you ever not be able to care, and so be part of their journey towards greater independence. Respite is also an important form of self-care, allowing you to make sure your own physical and emotional health needs are met and so help you avoid ‘carer’s burnout’.
A break can also support you in feeling better able to balance your caring role with other life commitments, like nurturing your other relationships, or spending time developing your own goals. Inviting family and friends to get involved sometimes and empowering them to support the person you care for can also help them feel more involved and strengthen the bond between them all in very positive ways. So, respite can be important for everyone, and even if it might seem difficult to imagine how you could make this work right now, it is possible.
Why might respite be more challenging when supporting an adult with a learning disability or autism
Respite means a break from regular routines and familiar faces, and changes like this can be especially challenging for someone with a learning disability or autism. You might feel that others wouldn’t be able to meet the complex needs of the person you care for if you were to take time away, or you might worry about the cost of respite and feel on balance that it simply wouldn’t be worth it. There might be some emotional barriers there for you too. Perhaps you feel that you would miss the person you care for, or feel constantly on alert, worrying about them too much to enjoy yourself? Perhaps you feel too guilty to go and have some time alone?
Some carers also find that when they do decide that respite is a good idea, they don’t feel able to access what they need due to long wait lists for respite services, or lack of services in their particular area. However, by reframing what we think of as respite, and getting creative, there are always opportunities available for you to access important time for yourself.
Types of respite
Respite can take many different forms. You might access respite independently or through a service, and this respite can vary in length, from a couple of hours each week, to a weekend, or even several weeks at a time. Respite might look like support inside your own home through a paid care attendant or sitting service, or through asking a trusted friend or family member to step in to give you a break. It might be that the person you care for could receive respite care themselves within a residential setting, having the support they need whilst you spend time at home. This is a longer-term option to them spending time at a day centre or being supported to enjoy other activities outside the home. Depending on the services on offer in your area, befriending and ‘buddy’ schemes mean a trained volunteer could take the person you care for somewhere they would enjoy, like a concert or other fun activity, leaving you time to do something different.
Overnight breaks are possible too, and there are a number of organisations, like CareFree breaks, that offer overnight respite services for carers.
Emergency respite means that if you were suddenly unable to be there for the person you care for, perhaps due to health reasons, a family emergency or accident, emergency respite would be available. Emergency respite is short term care, and although it is not strictly ‘respite’ for you as the carer, it is designed so that someone else would step into your caring role and the person you care for would continue to receive the support they need.
You might have already drawn up an emergency care plan, with a named contact who would be ready to take over if you were unable to be there. Talking through different options with your family and your care team can be a good idea, and bring peace of mind to everyone. Our article on Emergency Care Planning goes into more detail and supports you in drawing up your own simple emergency care plan.
Building respite into your routine
Planning ahead and scheduling in short breaks can give you something to look forward to, boosting your mood and helping to prevent fatigue from building up. Accessing shorter respite opportunities on a regular basis can also be more beneficial than waiting for a year to spend a single week away, reducing stress levels and boosting your overall wellbeing. Weekly, monthly or even daily micro-breaks all count, like a walk round the garden, a dance in the kitchen or just three deep breaths in another room.
It’s also worth highlighting that many carers share that thinking about taking any time for themselves can make them feel guilty. This is perfectly normal and it is important to balance out those feelings with the recognition that taking time for rest not only benefits you but the person you care for too. Our article on carer’s guilt goes into more depth on this and will help you understand that those thoughts and feelings should never hold you back from taking breaks and accessing respite when you need it.
Accessing support and funding respite
Requesting a Carer’s Assessment can be an important step in receiving extra support for yourself as a carer. As part of the assessment, you will be informed whether there is any financial support to fund respite through your local authority. The assessment team will also be able to recommend respite activities that might be appropriate for you and the person you care for, and connect you to local support groups and other helpful organisations.
Provision does vary from area to area, so if there isn’t financial support directly available, there may be other ways for you to access respite, and your council will be able to share advice and connect you with the right organisations. You may also be able to access help to fund respite care through your GP and social prescribing team, your local carer organisation, or through a respite service, like Carefree Breaks.
In recognising the importance of respite, you may also be interested in our articles on looking after your wellbeing as a carer, and our monthly Self Care for Carers online programme. This is our invitation to you to pause, reflect and share with other carers what it is like to be a carer, how caring for someone with autism or a learning disability impacts your life, and what you can do to make taking care of yourself more of a priority.