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Epilepsy Association of Western Australia (Inc.)
Annual
General Meeting Thursday October 30th 2008 @ 6.00pm
17th Annual Epilepsy
Seminar
Annual Audit 2008
www.epilepsy.org.au
Latest
Epilepsy News
Epilepsy Research
(Posh Spice)
Her
son Romeo has Epilepsy
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Issues for Carers
The experience of epilepsy for
the caregiver is not an easy one, especially for those of you who have a child,
partner or parent with epilepsy that is not yet controlled. At first you will
have had a period in your lives closely resembling chaos. At this stage you will
be waiting on a definitive diagnosis and relying heavily on your doctor to guide
you. Your doctor may not have sufficient time to counsel you and may suggest
that you contact your local epilepsy association to talk to a community worker.
Many of the things associated with epilepsy will make you afraid. In the
beginning you will be afraid of the seizures. However you will soon become used
to these but become less used to the idea that they may occur at any time. If
you develop a routine to deal with them this will be less of a problem. Not all
seizures mean that you must visit a doctor or call an ambulance. In most cases
you can allow the person with epilepsy to recover at their own rate. Some may be
able to commence activity within a short time – others may need to rest.
Recovery rates vary with the individual.
The effects of medication can vary also and may include drowsiness or
sleeplessness, irritability or a lack of emotional response. Different
medications have different effects on people. However not all changes are
medication-related. There may be emotional reactions as the person with epilepsy
undergoes a grieving process for a previously healthy life in which epilepsy is
not wanted. Children may resent being excluded from activities in which their
friends are taking part or may be experiencing ridicule or bullying at school.
It is appropriate for you or someone close to the person with epilepsy to talk
to them about a change in behaviour or attitude because it may be an easy thing
to fix. If it is a more difficult problem you will probably be able to enlist
the help of the Epilepsy Association in your state to assist you in finding
expert guidance.
Unusual reactions or behaviour of the person for whom you are caring will upset
you. Most of this behaviour stems from fear, frustration, depression or anger.
Unfortunately studies show that most of this will be directed at the person who
cares for them, as you are the person closest to them and can be expected to
forgive them if they overstep the usual boundaries of goodwill. Adults can find
it difficult to come to terms with epilepsy that develops later in life. They
may feel as if they are out of control and, as a counter, become very
controlling in other areas of their lives. This too is difficult to live with,
but will pass as they become less anxious about their epilepsy.
Support groups can greatly assist you in understanding why the person for whom
you are caring is having emotional problems. These groups will also reassure you
that the experiences you are having are not uncommon. Contact your state
epilepsy association for details of local support groups. You will learn many
things about the way in which other people cope and make friends to call or
contact if you need help in a hurry.
You will expect that members of your family will help you. However, sometimes
the experience of epilepsy is very confronting for people who do not have to
cope with it. You may find that members of your family may be able to help in
some ways but not others. For example they may volunteer to do your shopping,
but may not be able to take the responsibility of looking after the person with
epilepsy. Try to understand and perhaps one day they will be able to take more
responsibility. Alternatively you may find that your family is able to help in
all the ways you could wish. It may be difficult for you to ask them, but you
will probably find that they are delighted to be able to share this part of your
life with you.
It is very important that you keep well rested and healthy. You are not expected
to give up all of your life to be a caregiver. If you have family and friends
who will give you some time off then allow them to help you. Respite care is
available through federal government initiatives and you are able to access this
service. Take advantage of it to do something different – take a walk, visit a
friend, read a book. A part time job, volunteer work or short courses will all
help to alleviate the emotional stress of care giving.
Like anything else, the experience of being a caregiver will become easier over
time, but also like other things, it will be easier with the help of other
caregivers, friends and families.
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