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Jayne – “My brother’s epilepsy meant we had to live around his needs”

I’m 61, and my brother, Frazer, has a learning disability and epilepsy. He is 6 years younger than me, so I have always looked out for him. At the moment, his medication seems to be controlling things well, but we review his treatment regularly with his doctors.

I remember being alone with my brother when he had a seizure

I remember as a teenager being left in charge of him whilst my parents went to a school event, and my brother had a Tonic Clonic seizure. He had come down the stairs and said he didn’t feel well and he needed to be with someone. I was really scared and tried to remember what my Mum had told me to do if Frazer had a seizure. I remember speaking to him calmly, got him sitting on the sofa next to me and hugged him. The seizure started and went on for about five minutes and he fell to the floor. I stayed next to him on the floor to try to stop him hurting himself. In those days there were no mobile phones, I just had to wait for my parents to come back. I just talked to him and reassured him and covered him with a blanket. Afterwards he was exhausted and disorientated. I have never forgotten that early experience.

As a family, we had to live around his needs

As Frazer became a teenager, we went through a lot in trying to get his epilepsy controlled better and his medication was changed. As a family, we had to live around his needs. Excitement could trigger a seizure, so we had to downplay holidays and special times like birthdays and Christmas, as it would mean celebrations would be cancelled for all of us siblings.

My brother’s health is a constant worry

As an adult sibling carer to Frazer, his health is a constant worry to me.  I worry that when paid carers look after him, that they fully understand how traumatic an experience a seizure can be for him.  I worry about him falling, as now he is in his 50s and his mobility is poorer.  I worry about him overnight and him getting enough rest.  He has difficulties sleeping at times and we know that sleep problems can be a trigger for his epilepsy.  Whenever we take him swimming, we make sure we tell the lifeguard about Frazer’s epilepsy, so that they are aware, as the light reflecting on the pool can also be a trigger for him.

I feel like I have been on an emotional roller coaster with Frazer all of my life. I often feel he has been given a raw deal but he is happy and enjoys his life and never complains.  I love him and want the best for him, we have a lot of fun together. We have a shared history. I know all the things about him, things that make him happy or sad. I will fight for his needs always.

All names have been changed. 


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