Epilepsy or seizure disorder is a chronic neurological condition that may not require hospitalisation but requires intense care because it cannot be cured. This makes the role of caregivers, family me
Epilepsy or seizure disorder is a chronic neurological condition that may not require hospitalisation but requires intense care because it cannot be cured. This makes the role of caregivers, family members and friends extremely crucial in the lives of patients suffering from epilepsy.
Epilepsy manifests itself differently in different patients and hence the need for care also changes with it. While some people with epilepsy can mange themselves well, other may need help all the time or specifically during an episode of epileptic seizure. Being highly unpredictable in nature, epileptic seizures can occur at any time during the day making the sufferer unable to plan or ask for help by themselves. That’s why, as a family member, relative, friend, colleague or a partitioning caregiver you need to be well aware about the condition. To make it easy for you, here’s a simple guide explaining everything you need to know about the special needs of those with epilepsy.
After being diagnosed with epilepsy
The initial few months after diagnosis of epilepsy are the most challenging to deal with. Patients might find it hard to accept the diagnosis or may even feel miserable that their condition has made them dependent on others. But as caregivers, you can instil positivity and make them feel loved.
- Providing emotional support: ‘Generally, due to the stigma associated with the condition, a lot of epileptic patients are likely to get depressed and feel rejected by the society. Despite increasing awareness, the discrimination in the society has still not improved,’ says Dr Sudhir Kumar, senior consultant neurologist. At this point, your role as a carer goes beyond being just a parent, relative or a friend. You need to be patient and emotionally supportive so that sufferers accept their condition and slowly adapt to the changes in their lives.
- Educate yourself about the condition: Epileptic seizures are of different types and the caring needs are different for each type. So it’s advisable for you understand what kind of seizure the patient is prone to and be aware of what’s normal during that pattern of seizure and what’s not. Some kind of seizures display a peculiar pattern, for example — women suffering from epilepsy are likely to an epileptic attack before their menstrual periods due to hormonal changes during that phase of the month. If you identify such patterns or triggers, you will be able to provide proper care during the episode of epileptic attack.
- Helping with medication: Epilepsy cannot be cured. Seizure patients, are therefore, instructed to take antiseizure or antiepileptic medications to control the frequency of attacks. Failure to take these medicines regularly can increase the frequency of seizures. So, patients will need help in standardising a routine and timing their medications, at least in the initial few months.
- Accompanying as an eye-witness: If you have witnessed the person closely during an episode of seizure, you’ll be playing a crucial role in describing the episode to the doctor. Dr Arjun Srivatsa, neurosurgeon and founding trustee of Spine Trust India, suggests carers to note the physical changes or even record a video during the episode.
- Reminding them about diet and lifestyle: Carers can help patients to adapt to lifestyle changes and changes to their homes to make it more safe. As far as diet is concerned, epilepsy patients can eat what they desire but a ketogenic diet has shown promising results in reducing epileptic attacks. Dr Kumar says, ‘Epilepsy patients should not skip their meals because fasting for a long time can cause in hypoglycemia, affecting the brain.’
During an episode of seizure
- Stay calm: Witnessing a person during an episode of seizure could be frightening and disturbing. But the first rule in caring for these patients is to not panic.
- Prevent falls and injuries: In case, the seizure takes place suddenly in an unpredictable way, try holding the person to prevent falling suddenly to the ground. If the episode has occurred inside the house, slowly make the person lie down. Place a pillow or a blanket under the head. Make the person lie straight since lying on the stomach could cause suffocation.
- Ensure safety: Epileptic patients lose their consciousness during a seizure episode so it’s you who has to be careful about the surroundings. Make sure there are no obstacles or sharp objects around the patient to prevent injuries.
- Don’t stop the shaky movements: An episode of seizure typically lasts for a few minutes before the patient regains consciousness. So, don’t hold the person or try to stop their movements while they’re shaking.
- Note the pattern of seizure: If you’re observing the person for the first time after he/she has been diagnosed with epilepsy, note down the following — how the body moved during the seizure, how long the episode lasted for, what was the person’s last reaction before entering a seizure and what was the immediate reaction after the episode was over. These things will not only help you become a better caregiver but also help the consulting doctor to treat the patient in an effective way. If possible record the episode on your smartphone.
- Understand what’s an emergency: Normally, if the episode of seizure exceeds 3 minutes, it could be life-threatening for the patient. So identifying an emergency is very critical. Call a doctor or emergency medical help immediately if:
- The patient has repeated seizures within a period of 24 hours
- The patient suffers a head injury during a seizure
- You notice that the patient is not able to breathe properly
- The patient doesn’t gain consciousness immediately after the episode is over
- The patient develops symptoms like dizziness, vomiting, nausea after the episode is over
After an episode of seizure
- Make sure that the patient is fully conscious: After reverting to a normal state, the person might feel a bit disoriented. In such case, you might have to reorient the patient and gauge whether he/she has regained full consciousness. Make sure the patient is comfortable after reverting to normal state.
- Do not offer food or fluids: Unless the patient is fully conscious and awake don’t force them to drink or eat anything. Make them sit upright and try conversing with them to understand their state of mind.
- Understanding emotions: Following an epileptic attack, it’s natural for the patient to express a range of emotions including anger and frustration. You need to realise that these can also be due to effects of the medications.
The pressure and responsibility felt while caring for someone with epilepsy can be overwhelming at times but is definitely rewarding.
Photo source: Getty images