It’s only when you look back at photos of a year ago or a few months ago that you notice the decline. If you dare to look, then the difference – the decline – is face-slappingly obvious.
Mum is rarely awake anymore. She spends her time with her eyes closed. Her eyelashes crusty with stubborn yellow eye bogies. Her face almost frozen in an unimpressed, slightly cross expression. Except for the occasional look of shock or surprise when her eyes open briefly and her dying brain shows her images, memories perhaps, that are fleeting and invisible to the rest of us.
She opened her eyes briefly yesterday and looked right at me with steely, seriously angry eyes. It was a look I have not seen since I was a teenager and instead of turning and running, which was my default back then too, I smiled and tried to make her smile back.
She just closed her eyes. After chilling me right to my bones.
The kids and I have been up for our school holiday visit. I don’t think we’ve missed a school holiday trip to Scotland in the last 5 years. My kids don’t question it. They know not to press that button. We pile the car with our walking boots, woolly hats, “big” coats and this time, our running gear (the elder two are my reluctant Marathon training partners. It makes me incredibly popular!). We then spend at least twenty minutes in the run up to leaving with me refereeing and making the decision over which of the three have been good enough to sit in the front and be in charge of Spotify when we play car-pool karaoke.
It’s usually Martha.
She and I have had a strange few weeks. We wrote a song last year about Mum and her dementia and a few weeks ago, after performing it at a local dementia fundraising event, we were asked on to local radio to talk about it.
I was advised I should release the song so that people could stream or download it. And, I did! It’s available now on all music platforms and any monies raised will be given to the Alzheimer’s Society. My dad was seriously shocked (and I hope slightly proud) when he asked Alexa to sing “Hope You’re Dancing” and our song came on. It was one of life’s surreal moments, I think.
Our stint on the lovely and very supportive Stray FM led to us being invited on to BBC Radio York to talk about our song. We have also been invited to perform at a charity event at Harrogate’s Royal Hall in March.
It has all been lovely. We have been called lovely things like “amazing” and “inspirational” but we’re really not. As lovely as it is to bask in the warmth and admiration of friends and strangers, it is instead, simply a way of coping. Like red wine, I suppose.
Writing songs is a coping mechanism
The song. Our singing. My writing more songs about grief and love are coping mechanisms. It’s my way of trying really bloody hard to turn my mum’s dementia and our family’s greatest tragedy into something positive. Something I can be proud of. Something she would be proud of.
I know everyone copes differently and writing songs and singing them on local radio about a very personal story is not going to be everyone’s therapy. But it is mine and I am lucky to have a daughter who feels deeply. Who sees my pain and that of her Papa. A daughter who can sing like an angel and who wants to make a difference in the world. We hope to use our song to raise money for research and to help families struggling with the blind-siding reality of dementia or Alzheimer’s.
The best bit about writing and singing a song. About getting my creative juices flowing and releasing a talent I never believed I had, is not the downloads or the lovely messages from friends, family and strangers. It is not even sharing this weird, lovely experience with my talented daughter. It is not the interest of the BBC or even the fact we might raise a little bit of money to help fight dementia…..
A few months ago, I was visiting my parents, and my dad was playing our song as he did his Saturday crossword. I then caught him playing it as he was washing the dogs’ dirty feet. I then caught him playing it as he read his book in the conservatory. Enough was enough, so I laughed: “Blooming heck Dad, there’s no obligation you know!? You don’t have to keep listening to it!”
He just smiled sadly. “It brings me comfort,” he replied, simply.
That night as I checked on the kids before going to bed myself, I heard some music playing in his bedroom. I listened at the door and sure enough, there we were again – singing our hearts out and hoping and pleading that my mum was dancing in her dreams.
I hope she is.
I miss you, Mum x
If you’d like to listen, download or stream our song. It is called “Hope You’re Dancing” and the links are below: