I have to start this post by saying sorry to Simon, he sent me a copy of this exquisite book two years ago with a lovely note inside. I had every intention of reading straight away, at the time my own family was dealing with the ups and downs of Alzheimer’s, so I put it off.
I’ve just finished reading and come straight upstairs to write. It is wonderful, honest and will have you laughing and crying.
For those of you who don’t know the background of The Songaminute Man, here’s the story.
In 2016, a carpool karaoke video became an internet hit. It showed Simon McDermott and his dad, 80-year-old Ted, driving around the Ribble Valley in Lancashire, Ted was belting out ‘Quando, Quando, Quando’. Ted has Alzheimer’s disease, his illness can make him aggressive, Simon had realised that music helped ‘bring his dad home’.
That summer, Simon set out to raise some money (£1,000) for the Alzheimer’s society and give his Dad his shot at making it (Ted had always sung). Simon had no idea how much sharing that video would change their lives, they raised £150,000, the story was told across the world, there was a Pride of Britain award and Ted finally got to release a single.
This book isn’t just about Alzheimer’s; it’s about Ted’s life, it’s about family relationships, it’s about the bond between father and son, it’s about love.
Simon had to go on a journey of his own to tell Ted’s story, he can no longer do it for himself. He’s interviewed Ted’s remaining brothers and sisters, friends, bandmates, old girlfriends and of course his own mum, Linda. It’s mixed with Simon’s own memories, thoughts and feelings.
The early chapters detail Ted’s childhood, growing up as the eldest of fourteen in post war Wednesbury in the Midlands. A close-knit family – they’d have to be there was a lot of sleeping top-to-toe – who looked out for each other. We meet a boy who spent his time having adventures, playing football and making sure his siblings didn’t go without.
Music becomes his passion early on, he grew up singing, began performing in local clubs, holding a job down and singing with a band at night. He became a Butlins red coat, eventually moving to Blackburn, Lancashire to be with Linda…singing along the way. He was given the nickname ‘Songaminute Man’ because of his ability to sing any song perfectly.
In 2013, Ted was diagnosed with Alzheimer’s disease, though the signs had started to show themselves earlier, he’d become forgetful but was also angry and aggressive. Simon and his mum didn’t initially put the two together, like many people, assuming Alzheimer’s just meant forgetting things. It’s a really common misconception; yes, memory is affected but sufferers can also have dexterity problems, vision and hearing is affected, the nerve endings in the hands and feet die leaving people with the constant feeling of pins and needles. All that alone is horrific, then throw in the real cherry on the cake, all your memories are wiped one by one until eventually you can’t recognise the people you love. The fear that comes from living in that world and not understanding what is happening is what can lead to anger, aggression and frustration, that’s something Simon begins to understand.
I first met and interviewed Simon in 2017, a few months after the video, I was working on a series of reports around Alzheimer’s before completing my own fundraising challenge for the Alzheimer’s society, I wanted to get him involved. Chatting to each other we were soon swapping war stories about living with the illness, my Grandma was diagnosed a year after Ted, though the signs had been there for years. I was reminded of that meeting while reading about the countless appointments Ted had with GPs where he’d come home and say there’s nothing wrong. I’d told Simon how my Grandma had once had an appointment telling the doctor “I just feel like my head is empty”, she ended up getting her ears syringed – no joke. We’d both agreed that sometimes you have to laugh at the madness.
He also asked: “Do you worry about the future and getting it?”
I think it’s a question people shy away from, kind of like the elephant in the room, I’ll make jokes about it, but yeah, absolutely I’ve worried about being diagnosed with Alzheimer’s. I once did a virtual dementia tour for work; it was ten minutes of hell and I still have my memory in tact. People often say, ‘they don’t know what’s going on’, I don’t agree with that, you can at times see the fear and confusion, the person is still there, somewhere hidden, but they are aware.
“Alzheimer’s is a thief – it takes away all the light in family life and robs you of normality. Even the shape of the word looks like it’s going to attack you. It strips you of precious moments and possible memories”. Simon McDermott
During the book, Simon doesn’t shy away from the realities of living with Alzheimer’s, no two days are the same. There are some dark days, it is always throwing up something new – my Grandma’s taken to swearing and at times being very arsey. Simon is always open about how lonely it can feel, it was that loneliness that led to him calling the Alzheimer’s Society, for help and advice. For a long time he and his mum dealt with what was happening alone – most families do the same, feeling duty bound to care for a loved one, a feeling of responsibility. It’s stressful, it’s hard to keep calm and Simon doesn’t hide that in this book or in any interviews.
But he’s also been given a chance that some people would kill for. He’s got a greater understanding of his dad, through writing this he’s been able to learn more about him. He knows how his Dad feels about him, Ted has told Simon all about his son and how proud he is, thinking he’s speaking to a stranger. This story shows that for all the shouting, all the challenges and all the pointless conversations, there are moments of light. It’s poignant, and moving, a real account of life with Alzheimer’s.
So, Simon, thank you for sharing your story. Thank you for sharing Ted’s story and documenting his life so beautifully. Thank you for your honesty, I have no doubt that you’ve made many families feel less alone. Like you say yourself, “Life can be a challenge – don’t be afraid”, you’ve got this xxxx
P.S Why do they start threatening to Banjo people? Is this Lancashire thing? ha, ha, ha
Journalist, writer, traveller, music lover, collector of hats, news addict, bookworm