“Where Memories Go – why dementia changes everything” is a memoir so beautifully written that at times it reads like a love letter from a daughter to a mother.
It is also, as its title suggests, something else altogether: a journalist’s investigation into what it means to be old and infirm in today’s society – more particularly, what it means when a family is touched by one of the cruellest, most misunderstood conditions of our day.
In bringing together the two halves of the story Sally Magnusson has achieved a remarkable feat. She has humanised, personalised in a way I’ve not encountered before (and I’ve read a fair bit about dementia) one family’s hard, heart-breaking, occasionally funny, roller-coaster ride with this pernicious disease.
Being a journalist, she’s also tracked down medical experts, asked them searching questions about the what, why, when and how of dementia and relayed her findings in the easiest, most comprehensible fashion.
The book is a celebration not only of her mother Mamie Baird, the charismatic slip of a girl from Rutherglen who bewitched a young Icelandic reporter (later to achieve fame through Mastermind) and went on to make writing her career, but also of words – of the tools of the trade that Mamie refuses to relinquish to an implacable foe. It should be read by anyone with a love of language or an interest in dementia, or – as in my case – both.
“I tap late into the night, eager to round up your slippery self before it slides into yet another shape,” says Sally, attempting to retain a mother on whom the condition is already fairly advanced. “If I can only pin you by the bullet point, secure you with headings, trap you in words, corral you within a list, then perhaps I can hold you beside me here for ever, the mother who clapped her hands to see the snow at night, who has lost so much of her self but not yet, not yet, the thrill of being alive. So I write my list. And somehow it happens that I find myself talking to you”.
In this way, with her fluid, lyrical prose Sally pulls us into Mamie’s life and her family’s story – and offers up a philosophy for a better world.
“Dearest mother, as I watch your own sparky intellect flounder and your very identity dissolve before my eyes, I am beginning to conclude that dementia holds a dagger to the heart of Western morality. It confronts us with profound philosophical as well as scientific questions about what it means to be human. It challenges our social complacency and our financial priorities. It compels us to ask whether we have any right to call ourselves a civilised society at all”.
When Mamie is admitted to hospital with a broken hip, her stay reveals hard-pressed nurses with little or no dementia training, ill-equipped to communicate with their patients and inured to their needs, a place riddled with the “endemic thoughtlessness that stems from not seeing the individuals behind the zimmers”. The very opposite, of course, of the oft-repeated mantra of person-centred care.
When she is discharged, her daughters vow that their mother will never go into hospital again. Yet Sally knows enough of dementia to recognise that these are wider symptoms of a pernicious condition that affects not just those who have it but their loved ones and carers. “In fact, I am even starting to wonder if this might be a disease that turns all but the most saintly carer into a kind of monster in the end … something I will have cause to consider in the months to come when I stare into my own mirror”.
Despite this, it is obvious that the Magnussons are fundamentally happy and optimistic people who, to quote Robert Louis Stevenson, “up the rude, unbieldy track/O’life, gang gaily”. Rather than dwelling on the darkness of dementia or sticking to rigid chapters of information, Sally’s writing soars and glides with the natural rhythm of a born writer, from facts and figures to tender emotions.
Her book holds some of the clearest accounts of what Alzheimer’s does to the brain. It also explores what it is to be human, what it is to remember – and even shows us, through the microscope of Dr Gunn-Moore, the glittering thread-like cells that could be said to constitute the place where memories go.
Sally marvels at the miraculous way in which, even as her mother’s neurons fail – as her strings of Christmas tree lights flicker and die and rob her of her memories – she retains the ability to sing songs from her youth. In an attempt to discover why, Sally flies to New York and visits, in a run-down area of the Bronx, the Institute of Music and Neurologic Function.
Dr Concetta Tomaino has the answer. It is down to the numerous elements involved – rhythm, melody, harmony, pitch – when the brain processes music. Because of this, many different parts are used, including the primary ones that only stop when we die.
“It’s like when you have a tip of the tongue phenomenon,” the doctor explains. “You would remember if you just had an extra clue. Well, music, because it involves so many brain areas, is actually providing multiple clues”.
Dr Oliver Sacks, who co-founded the institute with Connie Tomaino, has another image. “The past, which is not recoverable in any other way, is embedded in the music as if in amber”.
Sally, the writer, her mother’s daughter, puts it like this: “The past embedded in amber. Music, the one thing dementia cannot destroy”.
And it doesn’t, not for Mamie. Up until the final stages of her life in April 2012 when she is lying in bed, little more than what someone once mercilessly described as “a breathing cadaver”, she is whispering the words of a song, “For you and me, for us and we/All the clouds have rolled away”.
Sally’s description of this intimate scene gets to the nub of what, in a deeper sense, her book is about. The self. And society’s view and treatment of this precious, intangible thing.
Dementia famously strips a person of his or her identity. Where Memories Go explores whether this sense, this taste, of being oneself and remaining oneself, retaining one’s identity, can withstand dementia. Its author has viewed the question through the eyes of philosophers, through the theories of neuroscientists and quantum physicists, through the beliefs of theologians and, inevitably, through the words of poets.
Now, sitting with her mother as she nears her end, Sally muses that anyone seeing her “would surely imagine there was nothing more to this inert form than hollows and shadows and bones poking through polished skin. They would never have guessed that you were inside. You, the woman with a head crammed with songs. You, the mother who has remained a mother. You, the lover of words who has continued to conjure them from somewhere until almost the very end”.
Yet of course she’s still there, the person she was, the woman she was, the mother she was – inside. Everyone is.
“You are Mamie” says her daughter, “the only one there has been or ever will be. You are you.”
This is the profound and universal message of Sally Magnusson’s exquisitely written personal story and you and I, whoever we are, would do well to remember it.
In 2013 Sally founded Playlist for Life, a charity enabling the families and caregivers of someone with dementia to create a playlist of uniquely meaningful music on an iPod and offer it at any time of the day or night. http://www.playlistforlife.org.uk/
Where Memories Go is published by Two Roads Books.