It has been almost two months since my Dad died of CJD, a rare neurological disorder. He got ill on holiday with his partner in May and five weeks later he passed away. He spent the last two weeks of his life at Nettlebed hospice. His illness was really brutal and I feel quite haunted by it, watching him deteriorate so fast. The big comfort was how amazing the staff were at the hospice.
I am feeling worse now I think than I did a month after he died. I feel like I am detached from the real world. I have had to go back to work at a stressful job, and although everyone has been lovely there is a feeling I should be back to normal now. I feel far from normal though. I feel this really deep sadness and like life will not be happy again. I feel really irritable at work, and I can’t act normally after what I just saw happen to my Dad.
My brother and I are also waiting for the results of a blood test Dad had to find out if the CJD he had was a genetic version that he could have passed on to us. When I tell people what he had they all think it was ‘Mad Cow disease’ which it wasn’t - there are four versions of CJD and he didn’t have that version. I find myself getting annoyed by people saying this, but why would they know otherwise? I certainly didn’t a few months ago.
It seems really sad as Dad had only been retired for a few years and had just been given the all clear from cancer, so I find it hard to believe he got this rare illness.
I wish I could see Dad one more time, I can’t believe that I won’t see him again. It’s his birthday soon too which I think is making things hard.
I feel quite isolated as I don’t want to depress other people by talking about it, and also I could never explain to them what it was like to watch.
I have been trying to keep busy by training for a half marathon in October to raise money for Sue Ryder - I’ve never done one before but I wanted to say thank you to the charity for looking after my Dad so amazingly, and being so supportive to me and my family. They truly do an amazing job. Reading the other stories on here makes me realise I’m not on my own. Sending everyone love x