Carers
“My Mum gave up her job to become my full-time carer... it’s like having my own personal secretary, note-taker, carer, shoulder, confidante all in one - and she’s my mum, and a wife, and mum to another daughter…. don’t know how she does it.”
(Priya, living with epilepsy since the age of 15)
Who is a carer?
A carer is someone who gives care and support to a friend, neighbour or relative who could not manage otherwise because of frailty, illness or disability. The term ‘carer’ does not mean someone who is in paid employment as a care-worker.
There are 6 million carers in the UK today (1 in 8 people) and nearly 60% are women. Not all carers are adults: there are at least 175,000 young carers under 18 in the UK (2001 census). Every year, more than 2 million people become carers for the first time.
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. Others may need a lot of care, some or all of the time. Some people need care only 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 your help.
Caring for someone with epilepsy can 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-epileptic drugs (AEDs);
- 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 representative or advocate for the person, with their doctors or others involved in their care;
- joining in with activities that might pose a safety risk if they were to have a seizure, such as swimming;
- providing transport if necessary; and
- helping them to adapt their home or lifestyle to provide a safe living environment.
Any of the above can 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 always 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.
The psychological effects on someone with epilepsy can also impact on you as their carer. These could include stress, depression, mood changes or frustration.
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 care.
These roles may be in addition to other demands: your family; other relationships; work; home; financial constraints; social life; your health; and your own 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 you and the person you care for get older, your situation can alter. Their epilepsy may change, or they may become more, or less, dependent on you. Your position as carer 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. There may be an expectation from others that you can continue to cope because you always have done before.
Looking after yourself
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 your needs and wishes go unnoticed. It can be very important to look after yourself, and have some time to yourself. Often, carers deal with their situation alone and can feel very isolated.
If you are a carer, there is information, support and help available.
What help is available?
You may be entitled to a carer’s assessment. This may identify the need for home help, respite care, emotional support or other services. You can ask your local social services for an assessment, or your GP can ask for this on your behalf. Some carers can claim carer’s allowance. This benefit depends on your income and savings and is usually paid to people between the ages of 16 and state pension age, who spend at least 35 hours a week caring for someone who receives Attendance Allowance or Disability Living Allowance. You can contact your local Benefits Agency or call the Benefit Enquiry Line on 0800 882 200 for information.
The following may also be helpful (links open in new windows):
The Princess Royal Trust for Carers and Young Carers
Provides information and support to carers through its Carers’ Centres across the UK, and its websites.
Carers UK
Campaigns for better support for carers. Provides guidance and information, via local branches.
Crossroads Care
Provides support for carers and offers short breaks in the form of respite care.
Directgov
Government information on benefits and legislation.
Expert Patients Programme (EPP CIC)
Training courses for people who live with any long-term condition. The EPP course 'Looking After Me' is for carers who have a chronic health condition, or whose health is affected by being a carer.
© The National Society for Epilepsy
Information produced in November 2009
