Mitch died on 3rd April 2022. We had been together for 48 years, married for nearly 45 years.
I don’t remember when I first became aware of Mitch’s epilepsy. I think it was soon after we were married. I was frightened. He was never aware of his absences which made me nervous – as they seemed (at that time) to be infrequent, we didn’t follow up with any medical professionals.
We had a beautiful daughter in 1980. Soon after, Mitch had his first grand mal fit. This led to scans and the diagnosis of epilepsy.
Throughout his life, Mitch was told he had ‘Temporal Lobe Epilepsy’. He would have made a good study for a medic interested in this field. I used to have to make sure that he didn’t let himself out of the house (especially at night). I could talk to him, but he wasn’t conscious and never remembered anything about his wanderings! I used to try and laugh about it, so that it didn’t worry him too much, but he used to say he felt ‘useless’.
I feel very proud that Mitch managed to work right up until he was 60. He never revealed to his employers that he had epilepsy, never wanting to make a fuss. Do I think that this was the right decision? Maybe not now, but, at the time and with a young family, he felt very vulnerable and wanted to provide for them.
The epilepsy did change Mitch’s personality, he was prone to mood swings and depression.
He took different medications with varying degrees of success. I remember one hospital visit where the consultant apologised to him, saying the system had failed him in not monitoring him more closely. He was put on a different drug which seemed to suit him better.
When we moved to Taunton in 2012 Mitch was looked after by a specialist nurse. His health was not great. Again, he tried different drugs but they did not suit him at all and he had what he described as ‘dark thoughts’.
The last change of medication resulted in more episodes but he no longer had the horrible dark thoughts. I did question him as to what ‘dark thoughts’ meant, but he never answered me, I presume because he felt it would have really upset me. Unfortunately, in the final two years of his life, Mitch had grand mal fits and a couple of these were extremely violent and upsetting.
Reading the stories of others and talking to people who have been affected by SUDEP, I know how extremely lucky we were to have enjoyed so many years together with a wonderful marriage and children and grandchildren. Each of us loved him so much.
The coroner’s report took eight months. Their conclusion was heart failure, but I know what I witnessed, and he had a fit in his sleep.
“Grief is the price we pay for loving that person.”
Ele, Mitch’s loving wife