CC Day 25 – Guest Post by Hedli Niklaus


Loving someone and watching their gradual deterioration as this horrible illness progresses, is a poignant and extraordinary experience, as I discovered when my husband Leon was diagnosed in 2011.

I think we supporters step up to the challenge with an absolute determination to see our loved ones through, and sufficient adrenalin flows to enable us to do it. However it costs – and that cost often doesn’t show up until months after the person has died.

I learned this. When something good happens, write it down. A scrap of conversation, the day you share a coffee on a crisp sunny morning and chat together, a smile, words of reassurance, – it really doesn’t matter. Because after it’s all over one of the worst aspects is a sense of guilt. All sorts of questions run through your mind. ‘Why did I say that?’ “Should I have called the Doctor earlier?’ ‘Did I do enough?’  You’re left feeling doubly bereft, not only missing your loved one but sure that you have failed them, which is unbearable. That’s where the notes you have made on a piece of paper, in a diary or notebook, come into their own.

I was sure that on my husband’s last birthday he had gone to bed after a lunch out and not reappeared for the rest of the day. I couldn’t have got it more wrong! I checked my diary and found that he had come down again later that night. We shared a little supper, looked through his presents and watched some television. It was as near our old life as you could imagine, and gave me such pleasure in the reading of it. These are golden moments in grey days and are to be cherished.



Hedli and Leon in ‘younger years’