Whenever Mum has travelled, she’s done it in style; her style. No itineraries, formal arrangements or the usual panic about getting everything sorted before leaving the house, oh no. Mum just ups and offs. Or used to. When I sorted her house out I found extraordinary accounts of her adventures, some of which I knew about and many I didn’t. She annotated everything and even made up her own travel albums about MY adventures too, replacing actual photographs with clippings from magazines and pictures of women who looked a bit like me. She included postcards and photos I’d sent her of course and if anyone had taken the adventures at face value they would have thought me a very strange person. Mum tells everyone she knows that my trip to Monte Carlo was to learn how to fly helicopters. OK yes, I did take a flight in one, but it was a work trip to attend the “Prix de Monto Carlo” radio festival with my Radio 2 show about whistling. I’d submitted the programme as a joke, expecting a “very funny, Sonia” note back from the channel controller, Frances Line, but it was short-listed and beat off submissions from Radio 3 and Radio 4. Unbelievably it won, all thanks to the wonderful Tony Hare’s script and Roy Hudd’s brilliant narration. Breaking off for a second here, you know when certain events leave a photograph in your mind of a frozen moment associated with it? Mine was seeing Roy Hudd’s nostrils through the studio glass as he was leaning back, helpless in his chair. Hysterical about the content he was trying to link together, he was completely consumed by the giggles and just couldn’t get the words out. Added to which my eye was on the stopwatch as he had 45 minutes until he had to catch a train. I had all those pictures in my mind when I was told 10 minutes beforehand, that I had to make a 5-minute presentation about “Give a Little Whistle”s production before it was played to the conference. I froze. What on Earth was I going to say, as a representative of the BBC, that made any sense of a show where people from around the world had come to Eastbourne to show-off their classical, contemporary and novelty whistling? I thought it was all novelty to be honest, but I was corrected on that. Whistling is a very serious business. Oh kaaaaay … So, channelling Mum’s fearless attitude to life I thought, “what would she do? And will she care a jot if people laugh? Not a bit of it. So, there’s nothing for it, I’ll whistle the darn thing and bamboozle them all”. I told the whole story, with gestures, whistling in tones to reflect normal speech and breaking off every-so-often to laugh at the incredulity on the faces of the serious Italian, French, German and Norwegian delegates who all thought it was part of the act. A ripple of laughter started around the room as I imagine everyone was making up their own story as to what I was going on about. Whistling is, of course, an international language. I phoned Mum when we’d won and told her that they were going to send a private helicopter to collect me. That’s what she heard and that was her story – I had gone to Monte Carlo to fly helicopters.
A few months ago I went to see Mum and was greeted by most of the other residents asking if I’d had a nice time in Venezuela where I’d been working on a TV show and interviewing the president. Flummoxed, I dug a bit deeper and discovered that Mum had put together an album of my travels, partly from photocopied extracts about Venezuela from Wikipedia (no doubt beating the care home into submission in order to do her research and printing for her when they’re already working over and above the call of duty) and pride of place was my postcard from Venice. That’s the magic about my mum’s brain. It all makes perfect sense to her, one thought triggering another, sometimes a distant memory, other times completely made up from her imagination and mostly driven by her desire to create books, something she’d always wanted to do, but was never able to because of her attention span and, well, let’s be honest, lack of focus.
No book that Mum has ever owned has escaped the margin scribbling. I think the local library gave up trying to fine her after I intervened by visiting the Hendon branch to tell them that they were lucky that she hadn’t torn the pages out. I tried explaining that purely defacing was a sign of respect. There was a lot of confused sniffing as the chief librarian processed the information and shrugged his shoulders. “Can you ask her to stop it?”. Yes, I can ask. I found one of Mum’s diaries in a clear out a few years back and it broke my heart. Most of the pages were ripped out, apart from an entry that simply said “Good Lord Above – am I Worthy of This Gift?”. It was written nine months before I was born. And another that had a pressed flower and a little note saying “Joy can come from a simple flower. Thank you kind man” I have no idea who that flower was from and it sounded to me like the act of a random stranger who might have seen a troubled lady who wanted cheering up. Thank you kind man. Don’t get me wrong, most of Mum’s graffiti has been sweet and emotional, but there have also been times when her scribblings had to be burnt for reasons of decency and to protect innocents. When my flame-haired brother was born, she went through terrible post-natal depression and cursed the Lord for reminding her about her own red hair as the depression had made her hate herself even more than usual. These jottings were in some of our story books and I thank Donna, my stepmum for getting rid of them before my brother or I read them. Much of her confusion and anger was directed at my baby brother who has also managed to overcome a lot of it by realising that she couldn’t help herself back when he was little. He was desperate for her love, but she couldn’t give it as freely as she gave it to me. He acknowledges that in those days the help simply wasn’t there. My Dad reminded me today that he’d sought out help for her through the hospital system, doctors and professionals in psychiatric care, but the answer was always the same. Unless the person consented to be treated there was nothing they could do. It had to wait until she was a danger to herself or others around her and that didn’t happen until 60 years later when she was finally diagnosed.
On Thursday I was invited to attend a course explaining the SPECAL approach to dementia management run by the wonderful Contented Dementia Trust. They are the charity behind the Sunday Times best-seller “Contented Dementia” and to see Penny Garner explaining the analogy of a photograph album when describing how memory works, was simply brilliant. If I can sum it up, imagine a photograph album with hundreds of squares representing each of our memories of what’s just hap as a photograph. Each photograph is a mixture of facts about the memory together with feelings associated with it. People with dementia continue to store the feelings, but quite often without the facts, and this will happen more and more as the dementia advances. With dementia, when the person metaphorically looks back in their photograph album to find facts and feelings they need they often only find the feeling, hence the confusion that arises. And if the memory was stored with anxious feelings, that’s what people with dementia will find, but without the facts of why they felt anxious it’s no wonder this can lead to visceral confusion to the person and those around them. I’ll continue to apply the Three Golden Rules based on the SPECAL understanding of dementia (don’t contradict, don’t ask direct questions and listen to the expert) as they’re already paying off and Mum is accessing happy memories that she hasn’t shared until now. Mixed in with the frontal lobe dementia, Mum still has complex mental health issues, but she feels more peaceful now, especially as she doesn’t have to answer difficult questions from me anymore. I’ve got most of the information I need. I adore the analogy of a photograph album as it feels so “right” for Mum.
Her trip to Israel is something she does remember as it was her lifelong ambition to make the pilgrimage to the Holy Land. She didn’t like the stable – “Silly nonsense, Sonia darling, they wouldn’t have had plastic tarpaulin back in Jesus’s day”. A man had a heart attack on the coach and she tried to prevent the nurses attending to it as she firmly believed that it was a sign and his time had come. Luckily she was over-ridden and he survived it. Make what you will of said man telling Mum that he was ok and just needed silence to recover. “He needed silence all the time – I mean ALL the time – that’s a lot of silence isn’t it Sonia?”. Mum bought a bible while she was out there and it’s full of her jottings. Some of which made sense, much of it not. She once wrote my homework for me when I was about seven year old. We were doing a project about birds and I hadn’t managed to do it in time, because I’d had to spend the weekend with a family I was often left with when Mum wasn’t well. Mum knew I would be in trouble with the school so she wrote my homework, pretending to be me by making an approximation of my childlike hand-writing. I had no idea she’d done that until the teacher read some of the extracts out to the class as an example of how to be creative with factual subjects. “Close your mouth Sonia, nobody wants to see your teeth”. Was I going mad? Had I actually written this stuff? CLANG. Mum had done it, no wonder I couldn’t find my exercise book. Interestingly, her ‘fake Sonia’ handwriting was pretty good and it looked like something I could have written – but didn’t. In between the fumes of humiliation I heard words that will never leave me. One day I’m going to use this as an opening line to a novel. “Anyone who has a lawn knows the song thrush. Tweeting his tune all day, his speckled chest beating in time to the rhythm of the world around him” Beautiful isn’t it? Accompanied by childlike pictures of “Me and my favourite birds” which Mum had written and drawn. I liked eagles apparently and robins lived on spade handles. I do remember the Headmistress winking at me as the words were read out. She must have known that it was Mum’s work and allowed it to continue to save any more embarrassment for the shell-shocked little girl who was wondering how to buy a safe with the little bit of pocket money she had left.
Mum insisted that we didn’t visit yesterday as the snow was quite deep in West Sussex. I was about to make a joke about the Beast from the East, but thought better of it. I don’t want her remembering the emotion of panic or skidding cars and not storing the facts associated with it. “Come down and see me soon though, and bring toffees – oh, and scrambled eggs”. Yes my darling Mum, of course, see you soon.