Caring for someone with epilepsy: Take care of yourself
A person who cares for someone with a health condition like epilepsy can be called a caregiver. Caregivers are no doubt, an important part of every epilepsy patient’s journey, because of the many things they do.
Being the parent of a child with epilepsy can be difficult as you more or less, carry the weight of your child’s condition on your shoulders. Countless sleepless nights are a constant thing because you want to hear and take action immediately if your child is having a seizure. Apart from that, there’s the endless worrying. Emergency rooms. Monitoring their playtimes because you can’t let them out of your sight for one minute.
If you’re the friend, family member, or partner of someone that has epilepsy and takes care of them, we understand that you also probably worry constantly about their health and wellbeing. You probably want to do everything within your power to be there for them when they have a seizure and on other days when they need you.
It is easy to concentrate on the health and wellbeing of your loved one with epilepsy and forget to also take care of yourself. Taking from the words of our Chief Data Scientist and co-founder, Rosalind Picard, in a recent article about boosting mental wellbeing, “i_f you’ve flown in a commercial plane, you’ll remember that the airline officially commands the adult to put their own oxygen mask on before helping the children with them.”_ _
_While the health of your loved one with epilepsy is important, it is also essential to take care of your physical and mental well being, so that you can be in a good condition to help them.
7 tips to help you stay in top shape for your loved one
1. Exercise regularly
Exercise is not only beneficial for your physical health; strengthening your bones and reducing the risk of chronic diseases, it also helps your mental wellbeing. It is easy to have anxiety from watching your loved ones go through seizures, but exercising has been proven to reduce anxiety, depression and negative mood by improving self-esteem and cognitive function.  It also helps to increase energy and stamina, and reduce tiredness, resulting in increased mental alertness.  Surely, these are qualities every caregiver needs to be able to provide all the help needed to their loved ones before, during, and after seizures.
2. Eat well and healthy, and drink a lot of water
As you may already know, eating healthy food not only gives you strength, but also gives you the necessary nutrients your body needs to function. Remember, you can only give your loved ones the necessary care that they need if you are healthy yourself. To start with, you can follow the World Health Organisation (WHO)‘s guide to a healthy diet. You can also see a nutritionist if you need a special diet plan, or find good sources and recipes for healthy eating online, like this one. You should also drink a lot of water to reduce dehydration. To know how much water you should drink, you can read this article from the Harvard Medical School.
3. Take care of your health
In the process of taking your loved ones for their doctors appointments and visits, do not forget about yours. Keep track of when you need to see the doctor, ensure you take your medications as prescribed, and as much as you can, do not miss your medical tests and follow-up visits.
4. Try to get some sleep
Sleep is very important for people with epilepsy and their caregivers. It might not be an easy thing to do, but your body will thank you for it, energizing you to tackle the day. As you may already know, seizures can happen unexpectedly, and your loved ones might need your support more on one day than on other days. Sleeping well will give you the needed strength on such days. There are many articles on the internet about sleep and how to get a good night’s rest, and you can also read this one and this one that we recently published. If your loved one has an Embrace, with you listed as a caregiver, make sure that you turn your phone ringer on before you sleep, so that you’ll hear if your phone rings with an Embrace alert.
5. Recognize when you’re stressed and manage it
One important thing to do is to identify your stress symptoms. According to the NHS UK, symptoms can range from headache for some people, to feeling overwhelmed and having the inability to concentrate for other people. Knowing when you’re stressed will help you take steps to deal with it as soon as possible. To manage it, you can take deep breaths to calm yourself, try to have positive thoughts or try other things that might work for you. It might be impossible not to worry, but if your loved one has an Embrace, it might give you some peace of mind, knowing that you’ll receive a phone call and text message when it detects a possible convulsive seizure. Above all, see your doctor if you have to.
6. Join a support group
It is possible that as a caregiver, you sometimes have feelings of helplessness, exhaustion and, maybe resentment or anger. You’re not alone. It might help to acknowledge those emotions and draw support from other people who have also walked those shoes. There are support groups that you can be a member of, either physically or online. For example, you can visit any Epilepsy Foundation in your area or participate in their online forum for family and friends. You can also join dedicated caregiver groups like Family Caregiver Alliance, or call dedicated helplines like the one from Epilepsy Society in the UK, amongst many others.
7. Set aside some ‘me’ time for yourself
Sometimes, all you need is a form of escape so that you can focus on yourself. Accept help from other people if you are offered, and if possible, do some self-care: binge-watch your favorite movie, read a book, take walks in the park. Do something that makes you truly happy. Talk to your other family members and ask for their help if you need to, so that you can take a break. After that, you’ll be more refreshed to resume your role of taking care of your loved one.
Caring for a loved one with epilepsy takes a lot of strength and courage, and you may not be appreciated all the time. At Empatica, we recognize the important role you play in showing love, care and attention to your loved ones. We send all our love your way and hope that you and your loved ones have all the strength and support that you need.
- CALLAGHAN, P. (2004), Exercise: a neglected intervention in mental health care?. Journal of Psychiatric and Mental Health Nursing, (11): 476-483. doi:10.1111/j.1365-2850.2004.00751.x
- Sharma, A., Madaan, V., & Petty, F. D. (2006). Exercise for mental health. Primary care companion to the Journal of clinical psychiatry, 8(2), 106. https://doi.org/10.4088/pcc.v08n0208a