Information for carers

Who is a carer?

A carer is someone who looks after a family member, partner, or friend, who needs help because of a health condition, disability, or frailty, and who would not be able to manage without this help. All the care they give is unpaid. This information does not refer to someone who is in paid employment as a care worker.

Research carried out by Carers UK estimates the number of unpaid carers in the UK could be as high as 10.6 million and nearly 6 in 10 unpaid carers (59%) are women. 

Not all carers are adults: in the 2023 school census, 38,983 pupils in England were recorded as young carers. However, research by the University of Nottingham and the BBC suggests that there are around 800,000 young carers under 18 in the UK. 

Some people are carers for a short period of time, others for many years. Most of us provide care for someone else at some point in our lives.

Carers and epilepsy

Epilepsy can be different for each person, so the need for care can vary greatly. Some people with epilepsy do not need any additional care from others to live independent lives. Other people with epilepsy may need a lot of care, some or all of the time. Some people only need care when they have had a seizure. Even if they don’t have seizures very often, the need for care during or after a seizure may be urgent. Seizures can be unpredictable. Someone with epilepsy may be unlikely to be able to plan when they will need help.

What carers do

If you care for someone with epilepsy, the things you do to support them may include:

• keeping them safe during a seizure
• calling for medical help, or giving first aid or emergency medication
• staying with them or seeing them home safely after a seizure
• noting any pattern or trigger to their seizures, which may help if they don’t recall their seizures
• helping with their routine of taking anti-seizure medication (ASM)
• going with them to appointments, helping to take notes, or providing descriptions of seizures to the person with epilepsy and/or their doctor
• acting as a representative or advocate for the person, with their doctors or others involved in their care
• joining in with leisure activities that might pose a safety risk if they were to have a seizure, such as swimming
• providing transport if necessary
• helping them to adapt their home or lifestyle to provide a safe living environment.

Any of the above may be very valuable but may also mean a lot of responsibility for you as a carer.

People with epilepsy may also have other conditions, with additional care needs. Because seizures can be infrequent or unwitnessed by others, epilepsy can be a hidden condition. This can mean that other people do not see the need for care. For example, some local authorities providing social services may not always recognise epilepsy as a condition that has particular care needs.

For some people, living with epilepsy can have a psychological impact which may also affect you as their carer. This could include stress, depression, or mood changes.

The multi-skilled nature of caring

Caring can involve a number of skills: technical tasks such as dealing with medical equipment, emotional support, being able to adapt if needs change, or working with professionals involved in the person’s health or care. These roles may be in addition to other demands: your family, other relationships, work, home, financial constraints, social life, your own health, and your hopes and wishes. You may cope well with multi-tasking in this way, or you may find that some areas of your life are being neglected.

Caring and relationships

If your child, parent, partner or friend has epilepsy, you may find that you have a caring role that goes beyond that of being ‘just’ a parent or friend. It may not be easy to recognise yourself in the role of ‘carer’ or even to see what the additional needs are for your loved one. Often someone’s epilepsy is accepted as part of who they are, so taking on any additional care because of their epilepsy can be seen as ‘just the way it is’.

When situations change

As epilepsy is an individual condition it can change over time. The amount of care you need to provide may become more, or less. Your own situation could change. You may become less physically able, or have your own health needs. Or you might want to regain some independence.

You could even be caring for more than one person, which may cause more strain on you. There may be an expectation from others that you can continue to cope because you always have done before.

Looking after yourself

Many people in a caring role find it rewarding, and many would not want their situation to change. However, for some people, being a carer can be exhausting.

Emotions such as guilt, resentment, anger, anxiety or helplessness can be common. Some carers give up their income and career prospects to care for someone. Sometimes, even if you care very deeply for the person, it can feel as though the focus is always on them and that your needs and wishes go unnoticed.

It can be very important to look after yourself, and have some time to yourself. Carers often deal with their situation alone and can feel very isolated.