Information about non epileptic seizures and Non Epileptic Attack Disorder.

Caring for the Carers

By on 4 May 2016 in General

For most long-term health conditions, such as NEAD, the focus is on the person who is suffering as is only right. However, for each sufferer, there is at least one person who is also badly affected and that is their carer/s.

If you are a carer for someone with NEAD, you may find yourself going through various emotions ranging from denial, through anger to guilt and beyond. It can feel like you are on a rollercoaster that never stops, one of those really scary ones with all the loops and twists. It is very important that carers take time to look after themselves as well, before they end up burned out and exhausted.

Let’s look at some of the emotions you might be feeling:

Denial: When a loved one is diagnosed with a condition like NEAD, it can be very hard to get your head around. Nearly everyone finds it hard to accept and many will insist that the diagnosis is wrong. This can lead to carers pushing people to get second, third, fourth opinions and dragging them from doctor to doctor. There is nothing wrong with getting a second opinion but once the diagnosis is confirmed, it is time for you and the person you care for to learn to accept it. The psychological aspect of the condition can be particularly difficult to accept and may lead to constant searching on the internet to find some other explanation for the symptoms. Remember that the stress of this is not only bad for the person with NEAD but also bad for you. If you can turn denial into acceptance, you are taking the first steps on the road to getting to grips with NEAD.

Anger: It is only natural to feel angry, to ask “why my child? My husband? My wife? My partner?” You may feel angry that your loved one wasn’t diagnosed sooner or be angry at the way they have been treated by health professionals. You may also be angry about the massive impact that NEAD is having on your life. It is ok to be angry. Anger is a perfectly natural emotion but it’s important that you don’t let it become overwhelming. Talk to someone that you trust rather than just trying to bottle it up inside you. Think about joining a support group for carers where you can talk to people who are going through the same thing.

Guilt: This can sometimes be the hardest emotion to deal with. In the wee small hours, you find yourself asking: “is it my fault? Was it something I did or said that triggered today’s seizures?” Or you may feel guilty for what you perceive to be your failure to take the condition seriously at first. Or you may feel guilty for taking some time for yourself or for having to go to work and leave your loved one alone or any one of a million other things. Guilt is a wasted emotion, which comes solely from the way that you see things. Try and remember that you are doing the very best that you can in the circumstances. The love and support that you give to your loved one with NEAD is enormously helpful but in the end, getting the seizures under control is very much down to the individual concerned. Again, it is important that you talk about your feelings of guilt. You may feel like you are the only person who feels like this and it will help a lot to realise that all carers feel guilt to a degree.

Fear: Those of us who have seizures tend not to realise just how scary they are for the people who have to watch. As a carer, you have to try and do the first aid, film the seizure and stay calm all at the same time. You may have had to follow an ambulance with blue lights flashing to A&E worrying the whole time about your loved one. You may have had to discover reserves of strength you didn’t know you had to do battle with ignorant and rude medical staff. Whenever you aren’t with your loved one, you are worrying about whether they are ok and when you are with them, you are watching like a hawk for any signs of a seizure. You literally want to wrap up your loved one in a huge roll of bubble wrap to keep them safe. This constant fear is hugely draining. It may lead you to try and prevent your loved one from doing anything you perceive as ‘dangerous’, to the point that you don’t let them out of your sight. This is not good for you and definitely not good for the NEAD sufferer, as you will both end up being in a constant state of anxiety, which will almost guarantee a seizure. Parents in particular may find that fear for their child is uppermost in their minds at all times. Try and find ways to reduce the fear if you can. Spend a bit of time talking to friends and family members about what to do so you aren’t the only one responsible. Learn as much as you can about the condition as this will help you understand it better. Put in place, in conjunction with your loved one, some simple steps that will help allay your fears such as asking them to send a text/call when they get to their destination if they are going out on their own or if you have to go to work, a text message sent at a specific time (e.g. lunchtime) so that you know everything is ok. As you and your loved one get more used to the condition, the fear will start to subside somewhat.

Frustration: This can take many forms. You may feel frustrated that your life has had to be put on hold for NEAD…the holidays you planned, the house move, the decision to have a child…and wonder if things will ever be the same again. You may feel frustrated with your loved one, feeling that they are not doing enough to help themselves or even that they are using NEAD as an excuse to not take any responsibility. It is very important that you take time to just do the things you want to do…go and watch the football match, join that gym class, go to that exhibition. Get a support network in place, someone you can talk to, a couple of people who can step in to help if needed, someone to go out and have a laugh with, someone who will let you cry without judgement. Generally, people want to help but don’t know what to do so ask for what you need. Being a carer is just one aspect of who you are, not the whole. Don’t forget that this is just a chapter in your life; things will change and get better. It may never be exactly as it was before but, with a few adjustments, your plans can be got back on track.

There are various resources that you can turn to for help and support in your caring role. Perhaps the best is the  Carers UK website which offers a load of help and advice covering everything from practical support to financial support. There are downloadable guides and a forum where you can connect with other carers. Another site you may find helpful is  Carers Trust. Specifically for NEAD, there is a Facebook group just for carers run by a lovely American lady called Millie. You can find the group here.

If at any point you find that it is all getting too much for you, do talk to your GP. You may find it helpful to talk to a professional, such as a counsellor or therapist, and your GP can arrange that for you. If you can find one that understands NEAD, all the better. Remember, you are not alone on this journey. There are thousands of people out there who understand exactly what you are going through. Reach out and connect with them.

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