What to do when your caring role changes or ends

If your caring role changes or ends, you may experience many different emotions. There may also be some practical and financial things to consider. 

If the person you care for needs more help

Over time, the person you care for might need more support than you can provide by yourself. If this happens, it's important that you think through your options to make sure that both you and the person you care for are looked after.

Getting more help at home

If the condition of the person you’ve been caring for deteriorates and you’re no longer able to provide all the care that they need, then it’s time to think about arranging a different system of care.

The person you look after may require more support than you have the time or energy to give. Ask their local council to assess, or reassess, their care needs.

Their changing health needs may entitle them to more services and support at home than before. Get a carer’s assessment for yourself too, as you may be entitled to extra support.

Find out more about carer’s assessments

Thinking about moving

If the person you care for needs more intensive care, they may need to consider the possibility of moving into sheltered housing or a care home.

This is a big decision and you should both take the time to look at all the options available to you. Think about other types of housing that may be suitable, such as extra-care sheltered housing.

Find out more about what housing options are out there

If the person you cared for has moved into a care home

Moving into residential care can be a big change, for you as well as the person you care for. Where possible, it's important that you both take some time to adjust.

Looking after yourself

This may have been a difficult decision, but it's important to remember that you’re only human and there are limits to the care you can provide at home.

If you’re concerned about helping them settle in, we have information and advice on how to make the transition easier.

Find out more about how to help someone settle into a care home

Looking after your money

If you find you’re still spending a lot of time caring for the person, you may still be entitled to a carer’s assessment. You also still have the right to request flexible working.

Once the person you care for stops getting disability benefits (usually four weeks after they move into the care home), you’ll no longer be entitled to Carer’s Allowance.

If you received a carer premium or addition with means-tested benefits, this will continue for an extra eight weeks after your Carer’s Allowance stops. If you're claiming the carer element in Universal Credit, you should contact Universal Credit to let them know if you stop caring. The carer element will stop if you're no longer caring for 35 hours per week or if the person you care for stops getting disability benefits.

This could be a good time to get a benefits check. 

If the person you cared for has died

Coping with grief after the death of someone you've cared for is incredibly difficult. It may help to talk to people who knew the person you cared for, to share memories and support each other.

Or you might prefer to contact an organisation that offers support for people who have suffered a bereavement. Specialist organisations such as Cruse Bereavement Care offer counselling, advice and practical help, and put you in touch with local bereavement groups.

Find out more about how to deal with grief after a bereavement

Grief is also very personal, and the emotions you feel are often complex and conflicting. As well as the loss of the person you cared for, you may also face the loss of the relationships you built up with the professionals involved in their care.

Being a carer can be demanding and you may have lost touch with people. Getting back in contact with family and friends, or meeting new people, may be the last thing you feel like doing while coping with a bereavement. As a result, you may feel very alone or isolated. But it's important to reach out to people when you feel ready – talking to someone about how you’re feeling, or just talking about the person who’s died, can help you feel better.

What happens to your benefits if the person you cared for has died?

You can continue to get Carer’s Allowance for up to eight weeks after the death of the person you cared for. 

If you're claiming the carer element of Universal Credit, this continues for the rest of the assessment period in which the death happened and for the following two assessment periods. Your first Universal Credit assessment period is the calendar month starting on the first day of your claim, and each assessment period after that starts on the same day of the month. For example, if your assessment period started on 5 January and the person you cared for died on 13 January, your carer element of Universal Credit would end on 4 April.

What happens if you stop being a carer?

When you stop caring for someone, the sudden change in routine can leave you feeling confused and without a sense of purpose. This is completely normal – and it won’t be like this forever.

You can help yourself adjust to the change by taking time for yourself. Maybe there's a hobby that you had to give up that you could pick up again now? Or perhaps you had to cut down on your hours at work – you might find the routine helpful now you're not caring for someone anymore.

If you claim a benefit that's related to your caring role, such as Carer's Allowance or the carer element of Universal Credit, make sure you let the relevant department of the Department for Work and Pensions (DWP) know about your change in circumstances.