Respite care
Supporting or caring for someone with Parkinson's can mean little time for yourself. This page explains how to organise a short break from your supporting role.
When you’re supporting someone with Parkinson’s, it can be easy to put your own needs to one side. But taking time to follow your own interests, take a break, meet friends or enjoy a hobby is important for your emotional and physical wellbeing. Short breaks from caring are sometimes known as respite.
How you take a break will be personal to you. You may prefer to take a few hours or a day a week for time to yourself. You may also want to take a week or longer for a holiday.
The needs of the person you support will play a part in the type of break you have, too.
Types of respite care
You may want to go away with the person you support for a break. Or you may want to stay at home while they’re cared for in a care home or nursing home. Alternatively, you may want to stay with friends or book your own break away. There may be the chance to go on holiday together where care is given to the person with Parkinson’s.
Here are a few other ways you can get respite care:
Care for the person with Parkinson’s in your home
Someone visits your home regularly to give you time to do your own thing. This can be at home or somewhere else. It can be a short period, just 2 to 3 hours a day, or overnight. And it can be occasional or frequent.
Day care for the person with Parkinson’s outside of the home
The person you support with Parkinson’s spends some time at a day centre, giving you the chance to have a break. Some respite options, such as day centres, offer activities the person you support can take part in. It also offers them a change of scene, company and the chance to meet other people. If personal care needs mean that a day centre can’t manage, day care in a care home may also be possible.
Care away from home for the person with Parkinson’s
The person you support could have short stays in residential care.
Night-sitting
A paid carer stays overnight so that you can have a night’s sleep.
Arranging respite care
Help with respite care
Residential respite care may be provided by your local social services or social work department, or charities and organisations. You can get more information from your local authority or carer’s organisation on local charities and organisations that can help you arrange a break or offer services to give you or the person you support a break.
To get help with a break:
- In England and Wales, contact your local council’s social services department.
- In Scotland, contact your local council, or health and social care partnership.
- In Northern Ireland, contact the social services department of your local health and social care trust.
Organising respite care yourself
You can organise support so you can have a break with the help of a direct payment, or pay for this yourself. Contact your local social services, social work service or social services department for more information.
You can also arrange care directly with a care worker or by using an agency. You may choose to employ a care worker yourself, rather than go through an agency. If you do this, be aware that you’re then taking on employer responsibilities.
You may decide to organise short-term respite care for the person you support through a care home. If so, you can find out what is available in your area by going to your local council website (health and social care trust in Northern Ireland). They can also give you details of organisations that can help you decide which residential care provider to go for.
Paying for respite care
Respite care can be funded in different ways. This can be by you, your local council or health and social care trust (in Northern Ireland), or charities. But how respite care is paid for will vary depending on where you live in the UK.
The person you care for could have a care and support plan set up from adult social care that allows for some respite. Alternatively, you could discuss this in a carer’s assessment to see if this could be part of a carer’s care and support plan.
You will be financially assessed to see how much you have to pay towards this.
You could also make arrangements independently of adult social care and pay for this privately.
Respite care can form part of the package of care that results from the needs assessment of the person with Parkinson’s you support and your carer’s assessment. Any financial help for respite care will depend on their financial assessment.
If respite care is added on to a package that is already funded, there could even be no further charge.
Help with paying for a break
There may also be local grants or schemes to help you with the cost of a break. Contact your local council or health and social care trust (in Northern Ireland), or local carer’s centre, for information on any financial support that you may be able to get.
Benefits and respite care
If you take a break from caring, any benefits payments you receive may be affected. This will depend on things like how long your break is for, say. The rules affecting benefits and respite care are complex.
Further support and useful contacts
Find out more about what grants might be available for your situation or where you live using the grants search tool on the Turn2us website.
Read detailed information on taking a break and respite care on the Carers UK website.
Call our helpline on 0808 800 0303 or email [email protected] for any support on respite care. This includes finding respite care schemes available in your area or if your benefits may be affected.
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Les's story
Les lives in rural Scotland with his wife, Jo, who was diagnosed with Parkinson’s in 2016.
"I am conscious that it’s important to have some activities outside of our home and relationship, which gives us both a bit of space.