Where Memories Go: Why Dementia Changes Everything

by Sally Magnusson

This book began as an attempt to hold on to my witty, storytelling mother with the one thing I had to hand. Words. Then, as the enormity of the social crisis my family was part of began to dawn, I wrote with the thought that other forgotten lives might be nudged into the light along with hers. Dementia is one of the greatest social, medical, economic, scientific, philosophical and moral challenges of our times. I am a reporter. It became the biggest story of my life. - Sally Magnusson

Regarded as one of the finest journalists of her generation, Mamie Baird Magnusson's whole life was a celebration of words - words that she fought to retain in the grip of a disease which is fast becoming the scourge of the 21st century. Married to writer and broadcaster Magnus Magnusson, they had five children of whom Sally is the eldest. As well as chronicling the anguish, the frustrations and the unexpected laughs and joys that she and her sisters experienced while accompanying their beloved mother on the long dementia road for eight years until her death in 2012, Sally Magnusson seeks understanding from a range of experts and asks penetrating questions about how we treat older people, how we can face one of the greatest social, medical, economic and moral challenges of our times, and what it means to be human.

An extraordinary and deeply personal memoir, a manifesto and a call to arms, in one searingly beautiful narrative.

Find out more about the book and dementia at Facebook.com/WhereMemoriesGo

Genres: Nonfiction, Biography, Memoir, Medical, Science, Audiobook, Health

411 pages, Paperback

First published January 30, 2014

About the author

Sally Magnusson is a Scottish author and broadcaster.

Reviews

[Petra X · Rating 4 out of 5]

Synchronicity. The last book I read and the review I wrote yesterday was of Camus' The Plague. That was the story of a town's very gradual descent into the pits of hell of the Black Plague. This book, Where Memories Go is the chronicle of the author's mother's gradual descent into the pit of her own, but not unique, hell, that of Alzheimer's. Both books are existential in nature. Both plague and Alzheimer's are unsusceptible to entreaties to gods, neither do they descriminate amongst who they will touch and destroy. Good people, evil people and the majority of us rather ordinary souls in between, all of us have an equal opportunity to go slowly down the hill that starts with minor loss of memory and ends up in violent rages and desperate, painful confusion and then a slow, slow death.

My grandmother and my uncle died of Alzheimer's. My grandmother was more fortunate in that being a nobody, when infection took hold, was allowed to slip off peacefully, sedated.

My uncle, her son, wasn't so lucky. He had the early-onset version of the disease. He knew what was coming and once he started to rage and wander he took an overdose of pills. His wife, an ex-nurse, "saved" him. For what? Eventually he ended up in a nursing home where instead of allowing infection to carry him off, the staff, because he was world-famous in his sphere of medicine, made valiant attempts to keep him alive to the very end. Then he could no longer speak but his children spoke of the alternate vacancy and depths of pain in his eyes that he could not express, his pain they had to endure too.

The book is well-written, perhaps overly so, so that the obvious strong emotion one reads is not quite felt, the reader is not quite engaged with the tragedy of this illness that destroys personality and leaves the family to deal with years of a mother that is no more.

If you were asked to deal with a pink and naked person who needs feeding, toileting and playing with to amuse. Who needs singing to, and helping with even the simplest thing, you might think immediately of a baby, with joy. But it's the same at the other end of a life ended by Alzheimer's and there is no joy in that, none at all.

[Sonia · Rating 5 out of 5]

This was probably one of the most heartbreaking, inspiring, thought provoking, enjoyable and challenging books I have ever read.

On one hand it is well written. The author takes you absolutely on her own journey - you find yourself laughing with her at small triumphs, despairing with her at the dark times, feeling her sheer frustration at a very broken system, and grieving with her at the rather inevitable end. (This doesn't spoil the plot, by the way - you know when you pick up the book what the end will be.) It is written with dignity and respect, and I am grateful that the author has given me such an insight into her mother's life. I feel privileged to have been allowed to share the story.

On another hand it is deeply challenging to me as someone who works in the social care system. It has left me feeling the futility of what I do against a health & social care sector that is fundamentally broken. It has left me absolutely determined to do the very best I can to help in whatever tiny way is possible through my work. It has left me frustrated that we know so little about the human brain, and how little we really understand about dementia. It has left me pondering some of the deep questions that the author poses towards the end of this book - what makes me, me? What would I want to happen if that were me? (And is my use of language sufficiently good in this review to do credit to the inspirational lady that is the heart of this book?)

I would recommend that this book is read by anyone who works in the health & social care system, anyone who has a relative with dementia, anyone who is a carer for a family member, anyone who is interested in the human brain, anyone who thinks about ageing (whether for their own sake, or someone else's), anyone who is interested in humanity and what it means to be human, and anyone who enjoys a well written story.

[Michael Brown · Rating 4 out of 5]

Going away. Taking your leave. A boat slipping into the mist. A personality dissolving around the edges. An identity melting. A tattered mind. How language struggles with dementia. p.91

Fortunately when it comes to expressing the ravages and the pains of her mother's condition, Sally Magnusson does not struggle at all. The superbly-written result would be deeply moving if it were fiction. That it is a true story makes it even more heart-searing.

Ms Magnusson's mother, Mamie Baird Magnusson, was a sharp and adroit journalist and raconteur, awash with wit and words. The deterioration, always terrible, is a particularly cruel onslaught. Yet out of this dreadful circumstance comes a memoir and a considered examination. It is emotional but honestly so, and it is highly educational too about the cause of the disease, the paucity of appropriate treatments and the outlook for the future. It also has one of the best passages about living inside the memory that I ever read:

There are times in life so sweet and so precious that even as we live them they have acquired the lustre of memory, even as we exult in them we are pierced and shaken by the knowledge that they can never come in quite that way again. The keynote of the experience is not just drinking in the joy of it, but registering in some deep, sad place that we have already lost it. p.97

Quite clearly, this is especially resonant to the dementia sufferer, often dwelling in a constant present, but not necessarily having the resources to step outside of it. It goes without saying that there is much about this book that could have been depressing, grim or maudlin, but it never was like that at all. It is soberly presented, analytically clear, elegantly expressed - beautifully so at times - and very often absolutely fascinating, particularly on the subject of music.

A review on the back of the book offers the opinion that "it should be compulsory reading for every doctor and nurse." This may well be true, but it should be advisory reading for everyone else too. This is not an obscure disease or a rare syndrome, or something contracted in deep space. This is a condition that proffers the darkest form of democracy - it could be me or it could be you. We could all do worse than have this book under our belts.

[Olivia · Rating 5 out of 5]

WOW!! This book is one of the most real, heartbreaking, challenging, inspiring and thought-provoking book I have ever read.
The book, in my opinion, is well written. The books takes you on her journey with dementia. At time I found myself laughing with her at small things, other times I was crying at the darker times they faced. I also felt her frustration with the very broken system that so needs to be changed to make families life not only with dementia better, and grieving with her at the inevitable end.
Definitely a book, everyone should read.

[Helen · Rating 5 out of 5]

Stunning, moving, beautifully written, interesting, profound and unforgettable. Part autobiography, part biography, part objective analysis of current scientific understanding, part family story and part diary. A clever, intelligent, sensitive and brilliant read. Sally Magnusson's book is a tour de force.

This is a book everyone should read who has known, or knows someone with dementia or alzheimer disease, who wants to know more about this devastating illness and its affects on loved ones and their families / friends - in fact everyone should read it. We ALL need to know more about this disease and how to help those that suffer with it. This is also a profoundly moving love story, the love of a daughter and her siblings for their mother.

This is the book I wish I could have written to honour my brave, dignified, loving mother.

[Liz Moffat · Rating 5 out of 5]

This is the story of Mamie, a wonderful, intelligent woman, mother and grandmother who has dementia. Sally Magnusson gives a candid account of her mother's deterioration as the disease progresses. She writes the story to record her mother's life, keep the memory of it alive and to help her come to terms with it. She mixes the emotion of it with the scientific facts of what dementia is, in its many forms, and what is happening inside the brain of the sufferer.
Sally and her family are able to look after Mamie at home, with the help of carers they can employ and recognise that this is the best way to care for someone with dementia. Which is a luxury most cannot afford or have.
This should be compulsory reading for any care home worker or any carer although it is very sad.

[Mirren Jones · Rating 5 out of 5]

a beautifully crafted part memoir, part exploration, of the effect of dementia on her mother and the immediate family. Sally moves easily and naturally between the roles of daughter, observer, reporter and researcher in this emotional yet contained account. Given its proximity to the real events, it doesn't smack of sentimentality or rose coloured glasses. It balances hope against despair, love against hurt. And leaves the reader with an acute sense of the impending crisis in society caused by the effects of a cruel and increasingly common illness. It's a very finely balanced account.

[Sarah Farmer-Wright · Rating 5 out of 5]

This is a wonderful book - it lends another articulate voice to the campaign for massive change in the way we should deliver dementia care as it rapidly becomes the biggest healthcare challenge on the planet. Part memoir but also a brilliant and heart-rending insight into the fragmented and frightening world of dementia, of how her mother and the whole family coped with life while precious memories and self hood becomes eroded by the plaqued and tangled ravages of dementia. It is an important and vital book about a determined, resourceful human spirit and about triumphs of the soul overcoming the difficulties faced while living with dementia. How fundamentally important person-centred care is and how that must be delivered more effectively within community based interactions. Anyone who works in the field of dementia, in whatever care setting that may be - I urge you to read this book. Brilliantly and sensitively written yet leaving the reader in no doubt of the impending impact growing numbers of us developing dementia will be on global society and the necessity of urgent and radical change in healthcare and social welfare in order to deal with this growing situation.

[Val Penny · Rating 3 out of 5]

Sally Magnusson is a Scottish broadcaster and writer, who has worked as a news journalist and the presenter of Reporting Scotland for BBC Scotland for many years. Her father, Magnus Magnusson a well-known television personality, emigrated to the UK from Iceland as a small boy and her mother, Mamie Baird, was a well-respected Scottish journalist. It is, therefore, not surprising that when Mamie Baird suffered from dementia, her daughter chose to write about it in her seminal book, Where Memories Go: Why Dementia Changes Everything by Sally Magnusson. It was book of the month at my book group.

The author adored her mother and when dementia took hold it started with sweetness, humour and an element of insight. Her family were adamant that they would care for her at home, setting up complicated rotas. However, later Mamie was aggressive and alienated even from her own twin sister. Magnus Magnusson died of cancer early in 2007 and, even then his wife was showing signs of Alzheimer's and was not safe for her to administer his medication, although in her heyday, Mamie had been a pioneer who became the star writer of the Scottish Daily Express.

The photographs in Where Memories Go show that throughout her life she possessed beauty, vivacity and a smile that could eclipse lighthouses. She was a woman who loved language, and the first realisation that something was wrong comes when she reads an address at a friend's funeral, then starts again on the first page and has to be led away.

Dementia is a disease that proceeds in little spirals: there are a few mirages of a return to cogency: but, unlike mental illness, it is, at present, incurable. It ends only in death. The narrative structure of Where Memories Go alternates between the story of Mamie's advancing illness and the author's own journalistic excursions. This saves the book from being maudlin. The disease inevitably runs relentlessly with the sickening bumps of new revelations of its advance and the occasional surprises of comedy: the calm declaration that Mamie and Magnus had discovered America, a last holiday to a Spanish city that Mamie likens to Aberdeen.

The book is unusual. The author has chosen, unusually, to write the book in the second person singular, and is talking to her mother ("you") throughout. This effect is rather suffocating: it both excludes the reader from the dialogue and raises the question of how much is not being said. Magnusson seems to be saying what she would have liked to have told her mother if she could have understood her, or what she would never have dared to have communicated. We hear little about Magnusson's relationship with her mother before she was ill, apart from a lengthy letter Mamie wrote to the author a few weeks before her wedding in 1984. It shows what a lively and thoughtful writer she was. The breakdown, the eclipse of these skills, must have been heartbreaking to watch, but we get little sense of who Mamie really was before the disease.

The final pages detailing the last few weeks of Mamie's life were painful to read. Mamie's death and the breakdown of language into fragments of syllables. Her hands clutching the air, the hallucinations, the skeletal figure in the bed.

This is not the first book-length account of dementia, nor will it be the last. However, as dementia goes on repeating itself, the story bears repeating, over and over again; because the loss of memory is one of the greatest mysteries of our age. Without memory we are nothing and no one. That is a scary thought. I did not fully engage with this book, perhaps because it is written in the second person, or perhps because the author does not fully let the reader in. I cannot recommend this book in an unqualified way, but it is worth reading if you can cope with the subject matter.

Valerie Penny

[Jennifer Johnson · Rating 4 out of 5]

A very beautiful book, well written and informative.

[Helen_t_reads · Rating 5 out of 5]

Mamie Magnusson, journalist and columnist, was the wife of TV personality Magnus Magnusson. They had five children of whom Sally is the oldest.
Sally Magnusson's book is a loving, honest and deeply moving tribute to her mother. It is full of memories of her parents and the way that she and her siblings rallied together to provide care as her mother became ill with Alzheimer's.
Dementia is a cruel and devastating disease which has only one inevitable outcome, but despite the sad journey the Magnussons find themselves taking, there are numerous episodes filled with humour which ensure that the book is not maudlin and depressing.
This is further achieved because, as an investigative journalist herself, Sally Magnusson inserts alternate chapters which outline the research she undertook about the disease, as well as documenting and illustrating the inadequacies and inflexibilities of the NHS and the care systems, as they attempt to care for people affected by Dementia.
It is a beautifully written. moving, thought-provoking, inspiring and humbling book.
Ultimately it is both a memorial to a much loved and brilliant mother, and a rallying appeal for society to examine how it reacts to and treats people affected by a dementia diagnosis.

[David Campton · Rating 5 out of 5]

I was feeling very wary of reading this book given its subject matter, but it is a beautiful and compelling read. Given that it is about the life and descent into dementia of Mamie Baird, former journalist, mother of the author and widow of Magnus Magnusson, someone who loved and earned her living off words and an anecdotal style of writing and speaking, there is a cruel irony to dementia striking her. But this anecdotal, at places poetic and impeccably researched biography is a wonderful tribute, touching on the personal, psychological, neurological, spiritual and political dimensions of this dreadful disease. It should be compulsory reading, not only for those struggling with this in the lives of loved ones and facing the possibility of this in their own future, but all who have pastoral, nursing or medical responsibilities for those with dementia, as well as the administrators and politicians who have to make decisions which will shape dementia care in the future, and may make or break our NHS.

[Craig · Rating 5 out of 5]

I have been listening to this as an audiobook to and from work and when it ended I sat in my car and wept.
A beautifully written (and read) book about the author's mother and the impact of dementia on her and the family. Written with honesty, love and compassion but unflinching from the sadness and the horrors of the impact of the disease and the abysmal care system we have in this country. It is also an education about dementia, its causes and what is known about how to manage it.
As a doctor it was humbling to read, as a human it made me angry at the systems we have created, that so badly let down these most vulnerable of our elderly and as a son brought back memories, both good and bad about the last year of my fathers life.
This powerful, poignant and wonderful book is a window into the world of this disease that will impact on so many of us.

[Wendy Greenberg · Rating 4 out of 5]

A brutally frank insight into an extraordinary family. Sally talks of both her parents but the book largely covers her mother, Mamie's, "journey" into dementia. Sally & her siblings play an astonishing role in managing her care so she feels as safe and secure as she made them feel as children. Her mother was a journalist and her life was words - the sections about her losing words and how others and often quick repartee is both amusing and heartbreaking. The story alternates with facts about the brain, dementia and research including information about the researchers. Interesting perspective as her mother is addressed by Sally as "you" throughout

[Moira McPartlin · Rating 4 out of 5]

I didn't cry as I was told I would but I did feel the anguish and the frustration of the family as they tried to hold together the fragile pieces of their mother's memory. Not only has Sally Magnusson written an excellent family memoir she has also used her journalistic skills to research and explain, in simple terms, what the difference is between dementia and Alzheimer's, why each case is different and what happens to the brain and person. The theories on music therapy were particularly encouraging and hopeful.

[Donald · Rating 5 out of 5]

The accolades for Sally Magnusson's magnificent paen to her mother's memory (in both senses) and her cries of pain against the effects of encroaching dementia on her well-loved and loving mother are all well, well merited. It is of award-winning standard - and I hope these now follow for they will help propel this wonderful book into the public consciousness where it deserves a close, considered and responsive hearing as we collectively need to grapple with supporting people with dementia and their carers.

[Jan · Rating 5 out of 5]

What a loving, human, touching book! Sally Magnusson does an excellent job of showing us the family relationships with her mother, and the huge challenges, often without sufficient advice or information, of dealing with a relative suffering from Alzheimer's disease. Sad (for what else could it be?) but throwing down the gauntlet to professionals to deal appropriately with dementia, and putting energy into the creation of a charity for giving personalised music to dementia sufferers, a small act that has been shown to help the patient in many ways.

Highly recommended.

[Ruth Innes · Rating 5 out of 5]

Having a father with dementia, I found this book so incredibly moving and informative. Sally combines her own mother's story of dementia with information about the disease itself as she struggled to understand it. It is so moving and funny and interesting. If you know anyone with dementia you should read it.

[Beatrice Rogers · Rating 5 out of 5]

A beautiful, compelling, brave book. I recommend it unreservedly and also would recommend that everyone involved with health and social care should read it. I would make it a set book for all students taking any course connected with health and social care. Sincerely hope the new charity --- playlist. Is a great success.

[Soo · Rating 5 out of 5]

Absolutely beautiful book. What a wonderful writer Sally Magnusson is. She has written the most incredible tribute to her precious mother. One of the most inspiring and emotional books I've ever read.

[Rachel pearson · Rating 5 out of 5]

This book will stay with me forever. I needed this book more than I thought I did. Having a close relative with dementia and myself being a carer I just needed that talking to . How I am feeling is normal .

Highly recommend please read .

[Laura · Rating 3 out of 5]

From BBC radio 4 - Book of the Week:
Sally Magnusson's moving account of her mother's long struggle with dementia

[robynluckystars · Rating 3 out of 5]

Found it difficult to get into the swing of the style of writing at first. Very sad and very insightful. I feel I learned a lot about dementia through this book. Horrible disease!

[Susan Weir · Rating 5 out of 5]

Beautifully written and narrated. An absolute delight

[Max · Rating 3 out of 5]

Heard to audiobook and did not enjoy here tone as though she was talking to a kid or reading at a high-school reading contest – overly expressive and too annoying for after 2/3 of the book

[Bettie · Rating 2 out of 5]

Bettie's Books

[Martin Peel · Rating 5 out of 5]

This is the most detailed, thoughtful, intelligent and kindest book about the realities of living with dementia. I recommend it to everyone.

Sally Magnusson is a known face, maybe not quite as well known as her father who was the face of Mastermind for years and years but she has read the news, been on our TV screens too. She unflinchingly takes us to the multiple challenges of dealing with the dementia of her mother. This is the central focus of this memoir. The death of Magnus Magnusson from cancer is an almost incidental occurance in the events of the book which in itself is a testament to the all encompassing journey that is a loved ones dementia diagnosis. The book charts her mother's illness and eventual death but it is never an oppressive or seemingly tragic read. Magnusson deserves such immense credit for writing a book that aims to understand and explore the condition rather than unleash the anger, frustration and bewilderment that can comes along with dementia too.

Written in the second person the book addresses Magnusson's mother at all times. The chapters shift from charting the decline and progress of the disease to going back and recalling her mother as Magnusson wants to remember her. There are also purely informative chapters thrown in which serve to explain things as varied as the role of mice in dementia research, to the way music is helping those with the disease cope. There are many thoughtful chapters focusing on the ways in which those who are wrapped up in a dementia diagnosis cope with what the disease throws at them . The book has moving and affecting passages where Magnusson recalls her mother's struggles to retain the core of herself in the fight against the onset of loss that is represented by dementia. What do you do when your parent displays a penchant for wandering around nude in a public space ? What do you do when your parent is repeating themelves in a public speech situation ? What do you do when your mother does not recognise you and wants to throw you out of the house ? Magnusson approaches all of these situations with a desire to understand her mother's condition and never assumes the righteousness of the even minded. In the end one of the most important insights of the book is that it is crucial to see the signs of how your loved but afflicted parent is battling to keep the core of themselves amidst the onslaught of dementia. There are moments of humour, moments of candour, and moments of love especially when Magnusson's mum shows she is struggling to retain her innate sense of self. Mamie ( Magnusson's mum) increasingly struggles with difficulties posed by loss of memory and the general disorientation engendered by the loss of a sense of time and place. In her case her love of music, her verbal wit and her genuine love for her nearest and dearest despite everything are the signs for Sally Magnusson that her mother is still there and that despite the disease, her mother is undergoing a gargantuan daily struggle to retain a sense of herself.

The book is manifesto for change. Magnusson asks awkward questions and asserts that we must be able to deal with dementia better. Dementia is an assault on a person's humanity and those who have the misfortune to be targeted by it need our help and love; there should be no place for condescension, lack of time and loneliness.

How can we deal with this better ? Magnusson has many suggestions from helping sufferers to be allowed to stay in the care of their families for as long as possible, to cutting down on chemical treatments that bring a measure of peace and quiet at the expense of a patient's feelings. The book is full of honest and practical assessments of what for most people who live through them are the most challenging days of their lives. Magnusson at one point explores King Lear. The mad king raving against the world, left to howl in the wind as he wanders the heath in the teeth of a storm is one of Magnusson's barometers. She points out the sage advice Shakespeare had for us which is totally relevant today. Like Lear, dementia patients need their Cordelia's and their Fool's around them, the one's who will love them unconditionally are the one's who need to be there. Society needs to facilitate this to happen. We can do it better and Magnusson really makes her readers
think.

This is a brilliant book on so many levels.

[Thekirkiepirate · Rating 5 out of 5]

A very honest and heartfelt account of a family's experience of dealing with this condition when it afflicts a mother, and their hugely commendable decision to care for her at home.

It was pleasing that the author did not just deal with the dementia aspect of her mother's life, but we are told about her beforehand and her marriage to Magnus. Until I read the book, although I was very aware of Magnus, I did not realise how accomplished Mamie was.

There are also smaller chapters interspersed with the main text containing background information on this condition and what is being done to fight it. It was also interesting to read the book in the week when an announcement was made around a breakthrough drug which it is hoped will slow the effects of dementia.

My only criticism of the book was the author's need to insert quotations and reference them - this came over as her trying too hard to let us see how well-read she is.

I felt a lot of sympathy with Mamie's twin, who played a key role in her care, often at great emotional expense. It would have been interesting to read how she fared after Mamie's death.

[Derek Beaugarde · Rating 5 out of 5]

Sally Magnusson's memoir on her mother's deterioration from a bright, intelligent woman into the dark world of dementia started out as a way of retaining the words and memories of her beloved mother. However, as things worsened and the illness started to put a strain on the whole family, Sally Magnusson, the reporter, began to investigate the broader crisis that is dementia in the whole of UK society today. The book demands that Government and health bodies need to address this issue and bring about social change for dementia sufferers and their families. Beautifully written, sometimes heart-breaking, but an excellent read.

[Sally Flint · Rating 5 out of 5]

I listened to the abridged version of this on radio 4's Book of the Week and then read the full length print version. It is a very moving read about growing old and changing circumstances. In this autobiographical account, the author, Sally Magnusson, describes the experience she and her sisters had as they cared for her mum and also dad. It is honest, insightful, educational, uplifting, funny and incredibly moving account. If there was a compulsory reading list for adults between let's say 45 and 55, (especially adults in the caring profession) in the same way as there are prescribed reading lists for GCSE students, this book should be on it.