Where Memories Go

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

For my series finale I chat to Sally Magnusson, distinguished broadcaster, journalist, author and founder of the music and dementia charity Playlist for Life.  It’s a podcast filled with music, memories and laughter.  Sally was a truly wonderful guest.  I’d met her before and in 2014 I wrote this review of her inspirational book about her mother Mamie Baird and how, right up until the very end of her life with dementia, Mamie loved to sing familiar songs.

When her mother developed the condition Sally started writing about her in an attempt to hold onto the wonderful woman she adored . 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.

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Why My Care Matters

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

My guest on this week’s Well I Know Now podcast is witty, articulate, energetic and pragmatic.  She’s a doer, not a moaner.  When her late husband’s dementia meant that he could no longer tell his carers what he wanted or needed, Zoe Harris came up with a simple yet very effective way to overcome the challenge. 

The result, some years later, is her stable of highly successful enterprises, all designed to help those for whom communication is difficult to convey their wishes.   These range from Care Charts UK and My Care Matters to My Future Care.  It was a delight to chat with Zoe, who I’ve come to know well through my dementia work – and she still managed to surprise me with some of her stories. 

 

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Living Words

You can listen to this week’s and every Well I Know Now podcast by clicking any of the following: Apple iTunes, Acast, SpotifyGoogle, Podtail or Castbox.

When her own life hit a rough patch and she was brought very low, actor, writer and television producer Susanna Howard quite literally wrote her way out of it. She let her words flow onto paper, never letting her pen stop and not allowing herself to think too much.

The results surprised her. “I was reconnecting to myself,” she says.  Realising she was onto something, she decided to share the idea and help others who, like her, had found themselves in a dark place, for whatever reason. Susanna believes, wonderfully, that “If you believe in people they can achieve anything.”

From a pilot project in the elderly care unit of Guys and St Thomas’s in 2006 her work has grown into the charity Living Words. Now Susanna and her team of trained artists run three month long care home residencies, working one to one with people in the late stages of dementia who would normally be considered unable to communicate, carefully and skilfully enabling them to do so through their own words.

This week’s podcast is played out with Funny Old World, lyrics by John Offen who is living with advanced dementia and Susanna Howard (listen here). John’s words were set to the music of Marit Rokeberg and sung by London Contemporary Voices.

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Barbara Pointon

Barbara and Malcolm Pointon

My family and I owe an enormous debt of gratitude to Barbara Pointon MBE, who has died aged 80.  And it’s not just us who have cause to thank her.  Thousands of families across the UK have benefited from the landmark case that this Cambridge music lecturer won in 2004, establishing the right for state-funding health care known as NHS continuing heathcare (CHC) to be provided to people in their own homes.

In 1991 Barbara retired from her job to look after her husband Malcolm when he was diagnosed with Alzheimer’s aged 52.  After seven years of caring for him at home, Barbara reluctantly moved him into a care home, paid for by Cambridgeshire health authority.

But after just two years, shocked at her husband’s deterioration, Barbara brought him home again. At this point, in 2000, the health authority said that it would no longer pay for Malcolm’s care because it was deemed to be social care, not requiring a nurse, and would therefore be means-tested.

Barbara took advice from the Alzheimer’s Society and appealed against the decision.  Eventually, the health service ombudsman upheld her complaint, ruling that the CHC assessment had not taken sufficient account of Malcolm’s needs, and also that the care he received from his wife was equal to that he would have received in hospital.   The judgement meant, crucially, that being cared for at home by a family member was no longer a barrier to receiving CHC.  The Pointons were awarded CHC funding of £1,000 a week.

Their story was told in two ITV documentaries, Malcolm and Barbara: A Love Story in 1999 and Malcolm and Barbara: Love’s Farewell in 2007, the year Malcolm died.  Barbara said they agreed to take part in order to “blow the doors and windows open” on dementia, which at the time was even more feared and misunderstood than it is today.

In this they undoubtedly succeeded.  As Kate Lee, chief executive of the Alzheimer’s Society said of Barbara’s death, “Her willingness to share her story on film made a huge impact on the national conversation around dementia, reassuring countless people that they weren’t alone in their experiences”.

Hearing that Barbara had died – poignantly, she too developed dementia in 2018 – took me back fifteen years to when I cited her case in my long battle to gain CHC for first my dad, who suffered a series of strokes that left him bedridden, immobile, being fed by a tube in his stomach, and then my mum, who lived with dementia for over a decade, the last few years of which she too was confined to bed, immobile, unable to speak and being fed pureed food by her carers.

Rereading the complicated ombudsman’s report into Malcolm’s case, I was reminded of the “diagnostic support tool” – a tick-box form in which various categories such as mobility, nutrition, communication are scored from “no needs” to “severe.”   As you might imagine, when I completed this I scored both my parents’ needs as severe in several categories.

I remembered how often it was reiterated to me that CHC was awarded only when someone was judged to have a “primary health need”, not a social care need – as a result of which, so I was told, there was no way my mum, with her dementia, would receive it.  I successfully argued for both my parents that just because their health needs were being well met – my dad’s carers lived in his flat, mum was cared for in a nursing home – didn’t negate the fact that they both had severe, primary health needs, and as such they both qualified for CHC, dementia or not.

But more than anything else, reading about Barbara and her years of caring for Malcolm while battling the NHS – the very system designed to help them – I remembered the relentless, soul-crushing misery of it all.  The overwhelming helplessness, the anger, grief and never-ending frustration came flooding back.

The CHC case that Barbara won for her husband not only ensured that people could receive state funds for care delivered in their home, but was an important step towards the NHS recognising that those with dementia have health needs, met through healthcare that is free at the point of delivery, not merely social care needs that are means-tested.  In other words, that dementia is no more a natural part of ageing than cancer or heart disease, but a health condition.  Malcolm Pointon was 52 when he developed it – 40,000 people under the age of 65 live with dementia today.

As Dr Nori Graham, vice-president of the Alzheimer’s Society said, “Barbara was absolutely key in the establishment of the right of carers of people living with dementia to receive free NHS care at home.  The right to continuing healthcare funding at home only came about because of Barbara’s relentless fight for it”.

This brave, determined woman fell and broke her hip in May and died some weeks later, during lockdown, which meant that her family had not been able to see her face to face for well over two months.  A sad ending to an extraordinary individual to whom thousands of us owe so much.

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