It’s half past five in the morning and I’m blogging. That’s a phrase which would never have crossed my keyboard a few years ago but I was woken by my two cats playing hide and seek with the bedroom door at 4am. Lying there, trying to sleep, I found myself thinking about Mum, dementia and all the things I’d like to say, as often happens in the early hours of the morning.
So, it’s dementia one sleep nil and here I am, tapping away. Thoughts come easily to me at this time of day. I’ve always been a morning type of person, like both of my parents. As dementia took a grip on Mum, her mornings started earlier and earlier. Three years ago, we were on holiday together when I was roused by the sound of Mum heading downstairs, fully dressed and ready for the day ahead…at 1am.
“Mum, what are you doing? It’s the middle of the night.”
“Oh, is it?” (Confused look). “Well, I’m up now so I might as well stay up.”
It took me a while to convince her that a return to bed might pay dividends later in the day when we were visiting former neighbours along the Pembrokeshire coast.
So, what are the thoughts which buzzed around my head at 4am and which brought me down to the kitchen, soundless apart from the sound of my tapping and a solitary wood pigeon greeting the day outside. (The cats are now both fast asleep again). Well, it was a tweet I received yesterday. Norman McNamara is one of the many inspirational people I’ve met on social media. I retweeted a blog from Normms which, as his posts always do, deepened my understanding of what it’s like to live with dementia. Here it is – you should read it too – http://tdaa.co.uk/as-time-goes-by-my-dementia-why-i-do-what-i-do-plz-rt/.
A short time after my retweet, I received a simple message from Normms:
“Thank you my friend.”
Four short words, all of which we probably use in different contexts every day but on this occasion, I stopped and re-read them several times. I’ve never met Normms in the flesh but we are friends. His reflections on being diagnosed with dementia at the age of 50 inspire and instruct. Without the virtual friends I’ve made on social media many of whom I might not recognise if I bumped into them, my journey with Mum over the last five an a half years would have been much more lonely. People like BethyB, Lucy J Marsters, Ming Ho, Kate Swaffer, Annie Coops, Gill Phillips (Whose Shoes) are making an enormous contribution to our understanding of living with dementia and caring for someone living with dementia. Check them out. It would be lovely if this contribution was recognised when birthday or new year’s honours were dished out. Just a thought.
Then there are two friends I have met in person. Ken Howard is a colleague of mine on the Warwickshire Alzheimer’s Society Campaign Group and Tommy Whitelaw is an indefatigable campaigner nationwide. I’m catching up with Tommy this evening as his endless tour brings him back to Birmingham. He is dementia’s equivalent of Bruce Springsteen, though possibly without as comprehensive a back catalogue.
As I pondered the support these people have offered me, I was struck again how interested Mum would be in their work. Mum was a great do-er. When I was at school, she was very active in parents’ associations, helping to organise summer fetes and charity appeals. Later, she was a Meals on Wheels volunteer and she helped out in the local hospital League of Friends (aka Plague of Fiends) coffee shop. As a member of the Women’s Institute, she’d want to discuss the latest issue they were considering for national debate. One year, testicular cancer was on the agenda and she asked me if I’d had a good feel recently. Mum, really! She then produced statistics to back up her case that I ought to. Fortunately, she stopped short of demanding I do it there and then. She’d be fascinated and possibly horrified by aspects of the dementia debate – about how it’s expected to increase in the coming decades, about how little is known about it, about how much it costs individuals and families, financially and emotionally.
If the internet and therefore social media had arrived a generation earlier, I can imagine Mum on Twitter, contributing to that debate. She’d have made virtual friends to go with the many, many friends she had and still has.
I’ll enjoy catching up with Tommy later. Our mothers will be with us, in spirit and once again, I’ll be thankful for the friends I’ve made.