Respite breaks for carers and taking time out
When you’re caring for someone who is terminally ill, taking time out is important for your health and wellbeing. If you’re unable to leave your family member or friend on their own, someone else might be able to look after them.
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A respite break simply means taking a temporary break from caring. While you’re having a break, someone else comes to look after your friend or family member in their home. Or they might go to a care home or a hospice.
What sort of break you have, and for how long, is up to you and the person you’re caring for. Some carers prefer a regular few hours’ break every week. Others might want less frequent but longer breaks or a holiday. You could plan this time to enjoy a hobby, get some exercise, meet friends, or catch up on some sleep.
Caring for someone who is terminally ill can take up a lot of time and energy. You may spend most of your time every day caring for your friend or family member. One study found that carers spend on average 70 hours a week caring for someone in the last three months of their life. And, even at night, you might not relax completely. Some carers describe themselves as ‘sleeping with one eye open’, alert to the needs of the person they’re caring for. If you’re not getting much sleep or it’s interrupted, you might get very tired. Having some time to yourself and respite breaks can help you to relax and feel better.
Respite breaks are also an opportunity to catch up with friends and family. Day to day you might be so busy you don’t have time to socialise or speak to friends. Having regular breaks could help you feel less isolated and lonely.
Sometimes family and friends may be able to sit with your ill friend or family member for a few hours or longer while you have a break. See our page How family and friends can help for more information.
Many carers prefer to have someone come to the ill person’s house while they take a respite break. It can be particularly helpful to have respite care overnight so you can get a good night’s sleep . In some areas, Marie Curie Nurses can provide overnight care for terminally ill people. This is organised through your GP or district nurse.
Some hospices and hospitals have day centres that your friend or family member can attend. It may also be possible for them to go to a hospice or nursing home for a short stay. When you arrange respite care, you’ll have a chance to talk about how and when you wish to be contacted while you’re having a break.
If you want to know what respite care is on offer, your local social services will have a list of places offering respite care. You can also go to the Carers Trust ‘Find services near you’ to see what’s available locally.
You might start by talking to the person you’re caring for about taking a break and what would work best both for them and for you.
You can then speak to your GP or district nurse about the most suitable respite care for your friend or family member.
Organising a respite break through social care services
You need to contact the relevant council (or trust in Northern Ireland):
- In England and Wales, GOV.UK has a database to find your local council
- In Scotland, Care Information Scotland has a map to find your social work department
- In Northern Ireland, Health and Social Care in Northern Ireland has information about your local health and social care trust.
Social care can assess your needs and those of your friend or family member. You can find out more about assessments on our pages about care and support needs assessment for the person you care for, and carer’s assessment for you.
Social care will ask at the assessments about your need for respite care.
Access to respite care can depend on the care needs of your friend or family member. It will depend on what services are available in your local area. For example, whether it’s possible to arrange for someone to come to their home, or if there is room for them in a local hospice or care home.
Organising a respite break yourself
You and the person you care for may choose to organise and pay for a respite break yourselves. This might be a family member or friend, or a professional carer. Carers UK has more information about finding a professional carer.
If your council (or trust in Northern Ireland) decides your friend or family member needs someone to replace you as the person's carer while you have a respite break, they may organise a financial assessment. This decides whether the council or trust will pay for the replacement care or whether the person you care for will need to contribute. They will charge the person who’s ill for replacement care (eg a stay in a hospice or care home or someone coming to their home) while you’re away. They will charge you for any specific support for you. There is information about this on our page How to get social care and support.
If your local council (or trust in Northern Ireland) doesn’t pay for respite care, you may choose to pay for it yourself. If the person you’re caring for receives benefits, such as Personal Independence Payment and Attendance Allowance they could use this to pay for short-term carers.
If you find it difficult to pay, the Carers Trust offers grants. You can apply through your local Carers Trust service. There are other charities that also offer grants (sums of money) to carers of people who are terminally ill for a holiday or a respite break. Contact Turn2Us to find out about grants.
Some organisations offer services where someone can keep your family member or friend company while you have a break. Marie Curie offers a helper service in some areas. A trained volunteer visits your home for up to three hours a week. It’s up to you how you spend the time with them, but some carers like to take a short break while the volunteer is visiting.
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