Caring for someone who is at the end of their life at home can be rewarding, but also very challenging. This page has advice on where to get support and how to take care of yourself if you are a carer.
Who is a carer?
Many people who provide support or care for a friend or family member who is approaching the end of their life would not call themselves a ‘carer’. They likely just view themselves as a mum, dad, partner, son, daughter, friend or neighbour.
However a carer is anyone who looks after someone who needs help because of an illness or disability. Carers can be children or adults, and do not have to live with the person they are caring for.
How to care for someone at home
If you are caring for someone at home there is support available to help you. There are likely to be lots of different people involved in the person's care; some will be NHS health and care staff, while others may be from separate organisations like social care agencies, hospices, or other charities.
You can have a carer’s assessment to find out what help is available to you. You can do this by contacting adult social services at your local council and asking for a carer’s assessment. There is more information about this here:
- If you live in England, visit NHS - Carer’s Assessments
- In Scotland, visit Carers Trust – How to get a carer’s assessment
- In Wales, visit Carer’s UK – Getting an assessment in Wales
- In Northern Ireland, visit Carer’s UK - Your guide to getting help and support in Northern Ireland
It can also be helpful for you to know the following:
- As a carer you will be the person that is most involved in your loved one’s care, however the GP has overall responsibility, and district or community nurses are usually involved too. Ask them what you can expect to happen as the patient’s illness progresses so that you can be prepared.
- Ask the GP and/or nurses for practical help, such as advice on how to move a person or how to give medication or injections. Keep their contact details handy in case of an emergency, and make a note of who you can contact at evenings and weekends.
- It might be difficult for the person you’re caring for to get out of bed or stand up, so they may need equipment to make this more comfortable and safe. You can get things like adjustable beds and handle bars as well as commodes and incontinence aids – ask the nurses or other members of your care team for advice. Social services and occupational therapists can also help with this.
- Occupational therapists can help to find practical ways of doing things that might become difficult due to illness, whether that’s recommending equipment or suggesting ways to prevent becoming isolated. Occupational therapists and physiotherapists can also help with things like breathing techniques.
- A social worker can help with adaptations that might be needed at home, advising what benefits both you and the person you are caring for are entitled to, and organising things like getting meals delivered.
- Local charities can also provide free support, such as home assessments. Ask the GP or nurses what is available in your area.
- Speak to someone about providing care in case you are no longer able to or need to take a break. This could be a trusted friend or family member; some hospices also offer short break care.
If you’re caring for someone at home you might be able to get financial support.
- Carer’s Allowance can be given to people who spend 35 hours a week or more caring for someone. You can find out if you are eligible and how to claim on the government’s website
- Help with energy bills. You might be eligible for Winter Fuel Payments or Cold Weather Payments among other energy discounts. Visit the government’s website for more information
You can find more information about financial support here:
Caring for someone at home can be lonely and hard work. If you live with the person you are caring for, it can be especially difficult for you to see your role as separate from the relationship you have with them, whether that relationship is as a parent, child, sibling, partner, or a friend.
It is important to talk to people around you so that they can support you if necessary. For example, you can ask friends to help you with childcare, laundry, preparing meals or any other daily activity.
Equally important is talking about your feelings. Carers UK have a forum where people share their experiences of caring, visit Carer’s UK Forum to see what people are saying.
You might also benefit from contacting a bereavement service, as these can often support people even before someone has died. Visit our page on finding bereavement support.