Caring for someone with epilepsy
WHEN a seizure occurs, an observer should use common sense to prevent injuries: ◆ Cushion the person’s head.
◆ Loosen any tight neckwear.
◆ Turn the person on their side.
◆ Do not hold the person down or restrain
the person.
◆ Do not place anything in the mouth or try to pry the teeth apart. The person is not in danger of swallowing their tongue. ◆ Do not attempt to move the person unless they are in immediate danger (like in a body of water)
◆ Observe seizure characteristics –length, type of movements, direction of head or eye turning. These characteristics may help the doctor diagnose the type of seizure.
Carers and epilepsy
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 do not recall their seizures
◆ Helping with their routine of taking
anti-seizure medication
◆ 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 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
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. — Wires.