Sally Magnusson’s deeply affectionate book about her mother, Mamie, is a wonderfully personal account about the effects of dementia on someone we love. Words by Katie Jarvis
“This is a book about the life of my mother, the writer and raconteur Mamie Baird Magnusson, and the way dementia changed it for her and for everyone who loved her. It is also a book about dementia itself, and how society regards the most fragile of its citizens, and how urgently this needs to change.” Sally Magnusson, Where Memories Go
I knew Mamie Baird Magnusson, who died on April 12, 2012, aged 86; I knew her so well. I knew her as a small child listening enraptured to her grandmother’s stories about the homesick cow that swam all the way across the Sound of Mull to get back to the family’s homestead. I knew her as a young girl, dancing of eyes and quick of wit, determined to find work as a journalist; and then I read her articles – brilliant works whose words leapt off the pages of the Scottish Daily Express, straight to the heart of the reader. I knew her as a pretty young woman, eyeing up her dashing Icelandic beau, Magnus, who softly asked to take her to dinner, followed by a late-night show. I knew her as a desperately-grieving mother whose 11-year-old son, Siggy, dashed across the road from the school bus into the path of a thundering lorry. And finally I knew her as a lost soul (soul? What do I mean by ‘soul’?), terrified, disorientated, devastated by the way her mind was pouring from her cells like water through a sieve; or – if you want images - clutching at her few remaining memories as you or I would claw with our clinging fingertips at the roof of the building from which we were dangling. I caught her trying to make sense of those evaporating memories; trying to form the sort of narrative we all need to help us understand the world, even if that narrative, in Mamie’s case, made no sense to those around her.
And then, when she sighed her last sigh, I mourned her.
No, no; let’s backtrack here. I never met her – don’t get me wrong. Never spoke to her. Never, as far as I’m aware, even caught a glimpse of her. But I knew her through her daughter’s wonderful book, Where Memories Go.
When Sally Magnusson sat down to write a book about the onset of her mother’s dementia, she began by detailing the things she most loved about her.
Your delight in the mad whirl of snow. Your unquenchable enthusiasm for sliding down banisters. Those husky harmonies layering every song you have ever sung. The way you peer into the mirror, push your fingers through your hair and sculpt it forward into a wave. Your eyes. Your wit. The way you stroke my hair when I’m kneeling to take your socks off. And it’s love that suffuses this challenging book, seeping between the gaps in the synapses that fail to transmit vital messages; welling up angrily through the yawning chasms in the care system that make a mockery of the elderly who fall into them:
I personally witnessed them ignoring a male patient in a wheelchair for more than thirty minutes while he repeatedly asked for help to get to the bathroom… After a while the gentleman started to cry and sat there sobbing for about five minutes, until a nurse finally appeared. Then in a loud, disgusted voice, she announced to the other staff, ‘Oh no. Old Jimmy has soiled himself again.’
It continues with heart-rending openness, through to the final pain of Mamie’s failure to recognise even Sally, her own daughter:
When I bend to kiss you goodbye, you hiss, ‘Get your hands off me.’
But, throughout, it’s love that draws us into this book so that, by the end, Mamie is all our mothers. In fact, statistics show that one in three of us over the age of 65 will die with dementia: in other words, Mamie is potentially all of us.
I only get 20 minutes on the phone with Sally Magnusson, but that’s fine. She’s absolutely lovely – answers my questions with the same thoughtful openness which characterises her book. “I’m at work,” she explains, apologetically and quietly. (I picture her half-whispering in some far-flung corner of a newsroom at BBC Scotland, way up in Glasgow.) “But you can email me with any questions you still have.”
So why exactly did she write Where Memories Go; Why Dementia Changes Everything - such an honest, soul-exposing book - I wonder. What was it that seemed to be missing from the other tomes about dementia that already sit on bookshop shelves?
“Do you know, I wouldn’t answer in quite that way,” Sally says, in her soft Scottish lilt. “I wouldn’t want to cast aspersions on anything that was already around. It’s more that, when I was in the middle of it [the experience of caring for her mother], I was hungry for other people’s experience. It’s a tremendously lonely thing to be in the middle of – extraordinarily so when you think that so many people are on the same journey, and yet each one feels so alone.”
It is extraordinary. Extraordinary that anyone should feel isolated in their need, let alone Sally, a television and radio presenter - daughter of Mastermind’s Magnus - who broadcasts across the nation to millions. But then, dementia is not a respecter of fame, fortune or intellect.
It certainly wasn’t a respecter of Mamie Magnusson, one of Scotland’s finest journalists, who did all the right things – exercised briskly and regularly, striding out on far walks with her wonderful long legs; she ate well; lived healthily; and used her mind to the full (her facility for language continued to amaze right to the end.)
Mamie might have played by the rules; dementia did not.
In Where Memories Go, Sally tells Mamie’s story (addressing her mother in the second person, throughout), right from that first niggling suspicion, the first odd sign, that something might not be right. It happened during a family trip to Mull, as Sally writes:
I was in bed in the room I was sharing with Anna Lisa in the guest-house, reading, when there was a knock at the door.
You were standing there wearing nothing but a short pyjama jacket and, thank goodness, a pair of knickers.
The explanation is vaguely plausible: Mamie had got out of bed to go to the toilet, when her bedroom door slammed behind her with the key inside. Everybody laughs and puts the incident behind them but.
But…
The lonely, isolating, even shameful (no one really wants to talk about dementia) process had begun.
“I began writing for my own, private purposes, to chronicle my mother’s decline,” Sally explains. “As I describe in the book, I wanted to hold on to her and to give artistic shape to my experience. But then I began to feel: Why am I not doing for other people what I wanted them to do for me? Why am I not sharing this? Why are we not talking about this more? Why are we allowing the stigma to continue when the only way you get rid of stigma and you improve services is to talk about something?”
She’s right, of course. You only have to think about cancer, 30-or-so years ago. It descended on sufferers like a Biblical plague; a punishment, even. Certainly, something to be ashamed of. And before that, it was TB. Sally’s grandfather, who died of lung cancer aged 60, never asked the doctors what was wrong with him. All he wanted to know was whether or not he was suffering from tuberculosis, the dreaded bogeyman of his own era. When the hospital told him he wasn’t, “he sighed with relief and satisfaction, and never asked again.”
“You can’t imagine how anybody could have been ashamed of having cancer now,” Sally says. “It’s a disease – it can hit anybody – and it’s exactly the same with dementia, and yet there’s this awful, shrivelling shame and embarrassment.”
And so it was that she began this part-memoir, part-science book. In it, she explores the statistics that tell us there are an estimated 44 million with dementia across the world, with an extra 7.7 million cases predicted every year. More than half of those sufferers are in developing countries.
She explores the history of the doctors who first observed the disease, and writes with sickening clarity about the effects it wreaks: “It disrupts both the way electrical charges travel within cells and the activity of the neurotransmitters.” She examines whether caffeine might help (it does with mice); or whether trauma – such as Mamie losing Siggy – can bring it on.
One of the most fascinating things she learns is about memory itself. There are tragi-comic episodes where Mamie’s nonsense can only provoke hilarity, such as when she tells the family she worked with Attila the Hun from the age of 16. Or that she has been to the moon on a spacecraft similar to Apollo 13.
What Sally discovered, when she finally found time to research the subject after her mother’s death, is that a sufferer will desperately try to make sense of memory fragments; that they’ll try to construct a narrative - a narrative that reassures them there’s still a story to tell.
“There was an agony to discovering things that I wished I had known earlier,” Sally tells me. “I wished I had understood about memory and memory’s tendency to reconstruct itself; and that that’s what my mother was doing. If I had only entered earlier into her fictions – as we would call them – then I could have looked after her better. So [the research] was a bittersweet experience. But it reinforced my sense that I have to learn on behalf of other people as well; because they don’t know this stuff either and this will help them to care better.”
It’s a difficult book to read – but it is a necessary and, at times, incredibly enjoyable book. And there is some light at the end of the tunnel, such as through Playlist for Life. It’s a charity Sally formed as a result of her experiences, which encourages people to gather together a suffer’s favourite pieces of music. The enjoyment of music seems to be one of the last things to go.
“After my mother died, I was so enormously aware of how music had stayed with her right to the very end. As everything else was stripped away, her capacity to respond to music almost intensified relative to her condition and I was so struck with this.
“We stumbled on it because my mother was a great singer so it was natural for us to sing with her. But if it hadn’t been, nobody ever mentioned to me that music might be a good idea, and I thought: There must be millions of people who don’t realise this either. How could I get this across? How could I share this insight?”
Sally discovered a New York charity that was making great strides by playing familiar music to dementia patients. Care homes where the system was being pioneered were reporting up to a 50 per cent reduction in anti-psychotic drug prescriptions.
The problem was, the facility wasn’t available in Britain, “So I sort of gulped inwardly and heard myself utter the fateful words, ‘I’ll do it, then!’”
Playlist for Life is now going from strength to strength.
It’s step forward on a journey with few certain footholds. Scientists (not enough; and not funded as they should or could be) are struggling to understand more. Why we get dementia; how we can avoid it; who is susceptible; what will stop it in its tracks.
The truth is, we still don’t know what it is that condemns some poor souls - one in three of us, ultimately - to this half-life of existence. “I’ve reached a stage where everything is nothing,” Mamie says, eloquent in her vacuum of confusion.
But while this cruel disease makes people less human, Sally Magnusson points out a greater truth still: that how we deal with it also says something about our own humanity. It’s evident in our attitudes; in the worst of our hospitals; in the elderly care homes that need closing down.
“There were different ways in which I was examining the issue of humanity through the book,” Sally says. “One way was in terms of selfhood: whether there is something that is retained of a person’s essence even if it can’t be detected either from the outside or, indeed, by the person themselves. I decided – partly because I wanted to believe it – that the essence of a person remains throughout the depredations of dementia.
“I was also looking at humanity from the point of view of society itself and how a civilised society approaches the citizenship of its people.”
Sally Magnusson, in all her gentleness and humour, pulls no punches. She and her siblings made sure their mother was cared for at home, right to the end. The rest of us might not be so lucky.
“We have failed mightily with people with dementia,” she concludes. “We have dehumanised them. We have removed their humanity much more successfully than ever dementia can.”
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Where Memories Go; Why Dementia Changes Everything by Sally Magnusson is published by Two Roads, hardback, price £16.99
Sally will be speaking at Stratford-upon-Avon Literary Festival (April 26-May 4) at 5pm on Sunday, April 27 at the Shakespeare Centre. For more information and to book tickets, phone 01789 207100 or visit www.stratfordliteraryfestival.co.uk
Sally’s charity is at www.playlistforlife.org.uk
This article is from the May 2014 issue of Cotswold Life.
For more form Katie Jarvis, follow her on twitter: @katiejarvis
