Thank you to everyone who has been so positive and so kind about this blog. Your encouragement is very important and very touching. The chance to put down my feelings on the written page has helped me to try to make sense of what we’re going through. I’m pleased that it seems to be helping others as well. One unexpected and yet very welcome outcome is a growing group of new acquaintances, often on social media, with whom I can share the vicissitudes of living with dementia. (Another bonus is being able to use one of my favourite words, vicissitude!)
So for me, the written word is a powerful mechanism for coping. Yet, only yesterday, the written word, or rather the unwritten word, brought another stunning realisation about Mum’s life these days. To begin at the beginning, yesterday was what I like to call Mum’s parents’ evening. Once a year, I meet up with Mum’s key-worker at the care home to review the previous 12 months and to assess Mum’s condition. I complete a questionnaire and, crucially, Mum is asked about all aspects of her everyday life. I’m not sure how much she understood yesterday – very little I suspect – but she was involved in the process which is so important. As I’ve written before, Mum is very lucky to be in a care home which really does care and in which she is comfortable, content and safe. This was confirmed by Mum smiling in response to every question. Yes, some of her neighbours frustrate her but it seems others go to Mum with their problems and (and this doesn’t surprise me), Mum likes to help to calm disputes. She struck me yesterday, in her demeanour and in the description of the staff, as the home’s Head Girl – close to the “teachers”, a sensible head in a world of challenging behaviour.
But I digress. The meeting went well and the time came for me to sign the report, which I did. Then it was Mum’s turn. I gently pointed out where she needed to sign but….nothing. She stared at the paper, read my name out a couple of times, but didn’t add her own. I tried to encourage her, even suggesting what she should write, but all she managed was a scribbled “S”. The concept of writing was beyond her. Sensing her disquiet, I signed for her. It’s a little thing but it felt as if another door had been slammed shut, perhaps never to re-open. Reflecting on my visit later, I realised that Mum hadn’t introduced me as her son, which she’s always done before, and although she recognised me, I’m not sure she knew who I was. Meaningful conversation had been entirely absent – Mum merely smiled and agreed with everything I said or answered yes to any question I posed. I try not to ask too many questions – it seems cruel – but it’s clear that my news such as it is, means nothing to her.
As often recently, Mum seem relieved when I stood up to leave. Don’t get me wrong, this is infinitely preferable to the experience of other relatives whose departures can be met with tears. I’m lucky that Mum is so settled but she’s settled in a world to which I can’t really travel.
Which brings me back to the written word. One of the greatest ironies is that Mum loved to write letters and it was surely her example which prompted my childhood hunger to read, and to write. I remember the day she first took me to the public library and the day on which I first borrowed an adult book (by which I mean a book from the “grown up” section, not perhaps what you were thinking.) I remember her reading “Little Women” to me after I’d “fallen in love” with one of the sisters in the 1970 BBC television adaptation of the book. I remember, and still have, all the letters she wrote to me when I first lived away from home a decade later. I also have all the letters she wrote to my Dad when they were courting.
Now, in 2013, I find myself writing more and more just as my inspiration has perhaps written her last word.