Sometimes you can’t predict everything.
I like reading books. One book I really enjoyed was ‘The joy of small things’, by Hannah Jane Parkinson. The idea behind the book is pretty fundamental – to take a number of ‘small things’ like being a regular in a local café and to talk about them.
It lead me to go onto read a similar book called ‘Delight’ which I had to buy from a specialist bookseller. It was at that time I took up an unanticipated hobby of reading and collecting second hand books.
Because I am fundamentally a contrarian, to the point I like being disliked, I began collecting books which some people want to ‘cancel’ by authors including Roald Dahl, Iain Fleming and Agatha Christie. I find the whole subject of the right to offend and the right to be offended fascinating. I have found myself slow to call out blatantly offensive material, but this gives me an opportunity to reflect.
I find dementia offensive. I appreciate other people’s rights to present positive aspects of it. This I think is probably done out of good intentions, such as not trying to scare people about the gravity of it. The problem becomes when the picture of dementia is not one I, or other carers, recognise.
In that case, it can become rather too easy to think you’re doing a bad job of being an unpaid family carer.
My mum died last July, after probably a few years of suffering from the disease. And I do mean ‘suffering’. Without going into the details, it caused innumerable problems and loss of function. I struggle to see any positive sides to it.
I occasionally listen to other people’s views about dementia. This week, I caught Richard Spurr on LBC chairing a phone-in on dementia. As usual, it reminded me of my own experiences, and how fraught it was with logistic issues such as organising a lasting power of attorney.
One thing I do remember clearly is how I felt mum had died even before her physical death. For me, caring for her was essentially continuing to love her.
I’m no expert in dementia, but I do ‘get’ the need to make the loved one feel as if they’re safe and secure.
This means doing things he or she can’t do. This can be framed as ‘loss of control’ – but I call it helping someone out of love.
I am not frightened of the word ‘care’. I am not so paralysed ideologically that I must insist on calling it ‘support’ euphemistically.
I still love my mum, to the point that I can’t quite believe that she is physically dead. But without her I would not be alive. I lead my life as if she is still with me.
I have now never been happier, knowing she is no longer ‘suffering’. I am not waiting to die but not in any unhappy way. Actually, I have never been happier.
I probably got to know my mum in a way I probably wouldn’t have done had she not had dementia. For this I am grateful.
I cherish every small memory of her – and this aligns with my experience of recovery that if the elephants don’t get you the ants certainly will. This is why I still to this day refuse to throw away her Indian bangles or clean pyjamas I bought her.
Things happen by accident. I wonder if the dementia happened by accident almost. I suppose that is serendipity. I once asked the late Sir Richard Doll what serendipity is – after he said publicly in a lecture at Cambridge that his discovery of a link between smoking and lung cancer was ‘serendipitous’.
He said simply, laughing: “Looking for a needle in a haystack, and finding the farmer’s daughter.”
You must be logged in to post a comment.