Dementia
Baroness Mary Warnock
It’s almost eleven years since I shared a platform with Baroness Mary Warnock, but I’ve never forgotten it. We’d both just published books about assisted dying: hers, An Easeful Death (with Dr Elisabeth MacDonald); mine, Right to Die, 
and we were appearing together at the Edinburgh International Book Festival.
She was already very well known, an established and influential figure in the world of philosophy, and author of The Warnock Report on Human Fertility and Embryology, an outspoken and at times rather intimidating person, who had strong opinions of her own. I recall she wasn’t too impressed when I questioned her statement that assisted death was not killing, and dismissed my quibble out of hand. She was sitting in her philosopher’s ivory tower well away from human reality; I was speaking from the viewpoint of a clinician at the sharp end.
Though known for her sharp mind and fearless debating, in great demand for committee work, she was widely criticised for being an ‘instant expert’, for having no truck with those who held strong immovable moral principles, for voicing shockingly derogatory comments based on social class and personal prejudice. Her certainty that she was always right stemmed from her childhood and sense of personal superiority. ‘In my mother’s family,‘ she said, ‘we were brought up to believe we were the best; there was simply no doubt about it and that sort of conviction resists evidence.’ I confess I caved in more than once in the face of her dogmatic assertions, even though in my heart of hearts I disagreed strongly. Somehow her reputation and self-confidence left scant room for challenge, especially from people as far down the food-chain as me!
One of the most outrageous statements she made was, ‘If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service’. She advocated encouraging such people to end their own lives to avoid being ‘a burden‘. To my shame I never did summon the courage to take her to task on that, though I’ve spent years working alongside people with dementia and wholeheartedly supporting efforts to enrich rather than end their lives.
Having said all that, I was touched by her generosity in endorsing my own writing. Emboldened by our brief acquaintance and pleasant exchanges, I rather trepidatiously sent her the draft of my novel, Saving Sebastian,
which overlapped with her interest in genetics and embryology, and she was kind enough to endorse it warmly:
‘Problems in medical ethics are not just for doctors but for everyone,’ she wrote. ‘Hazel McHaffie has found a way to bring them before a wide public. You are gripped from the very beginning. but as you turn the pages, you are compelled to think about the issues. It is an excellent formula.’
I forgave her much!
She was made a DBE in 1984, a life peer in 1985, a Companion of Honour in 2017. The last time I saw her in the flesh she was a much diminished figure, so hard of hearing she missed much of what was said, and at times her comments fell like stones into a pond; sad to witness. She died this week, on March 20, aged 94, after a fall, a richly decorated though hugely controversial figure. Perhaps, in the world of medical ethics at least, we need such characters to provoke discussion and sharpen our own opinions.
Ethical issues for everyone
I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.
The first relates to the prevalence of my subject matter.
To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.
Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.
The second point relates to the currency of my subject matter.
When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.
Then there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.
I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.
Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.
Final changes and additions
I’m at the stage with Inside of Me where we’re waiting for reviews and final comments to come in before the whole package can be put together. It would be all too easy to champ at the bit but I’m using the time to catch up with a hotch-potch of jobs. One of those is checking out ‘the competition’ – aka reading other novels that fall into the ‘medical ethical’ bracket.
Two books overlap very directly with my own.
Dear Thing by Julie Cohen is about surrogate pregnancy – like my Double Trouble 
published six years earlier; although I hasten to add I’m not suggesting Cohen plagiarised my ideas! Indeed, her book became a Summer Book Club choice with Richard and Judy in 2014.
In a nutshell: Romily is a scientist and single Mum with a precociously clever daughter. Ben and Claire are her best friends but they’re unable to have a child of their own, so Romily offers to carry a baby for them and they arrange the logistics of this transaction privately between them. But no one has bargained on the unravelling of relationships and emotions. Hmmm. Very similar plot line to mine then.
Elizabeth is Missing by Emma Healey was recommended to me by someone who’d also read my Remember Remember. Again it came out long after mine – seven years this time. 
And again it won a prestigious prize – the Costa First Novel Award 2014.
In a nutshell: Maud is struggling with dementia and searching for her friend Elizabeth. She is haunted by unresolved issues from her past. The bewilderment and confusion of the dementing mind are beautifully captured, and important truths are dotted into the account of Maud’s thinking and stumbling through life. 
For example, she loves being teased; it makes her ‘feel human’; the other person is assuming she’s ‘intelligent enough to get a joke.’ Worth remembering.
I’ve now finished both. Verdict? Enjoyable reads, although neither achieved a 5 star rating for me. The overlaps with my books are noteworthy, so I’m glad I wrote mine first. It’s an abiding concern with me that another publication will come out ahead of mine that makes it look as if I stole someone else’s ideas! Partly fuelled of course by a heightened awareness of a topic which means you see it everywhere. On the other hand, I’m delighted to find such thought-provoking books are receiving real recognition.
All this reading feels like a great indulgence, so it was heartening to hear prolific author, Nicola Morgan, (at a Blackwells Bookshop author-event last week) describe reading novels as an essential part of stress reduction, and not the luxury or guilty pleasure it’s sometimes portrayed as – she calls it ‘readaxation’! And she should know: she’s an expert on the brain and coping with stress. I shall sink back into my upholstered chair and allow the healthy hormones to do their work as I turn the pages …
Oh, and by the way, click here for an interesting clip about the value of reading aside from relaxation.
Understanding dementia
When I first met my future husband’s grandmother she referred to me as ‘the door handle’. I had no idea how to respond apart from with a shaky smile. By the time my mother developed vascular dementia decades later I was considerably wiser and more confident. Given the exponential rise in incidence rates, all of us must surely come into contact with dementia in one form or another at some point in our lives – a high proportion up close and personal. Having a degree of insight into the condition can transform a tricky situation into a meaningful experience.
As part of preparation for the Portobello Book Festival I’m appearing at in two days time, I’ve just re-read a book that was pivotal in my own understanding of dementia many years ago. It’s called And Still the Music Plays by Dr Graham Stokes, a very experienced clinical psychologist. And I’d highly recommend it.
Each vivid and sensitively written chapter is devoted to the story of one patient/resident who is exhibiting challenging behaviours, and alongside the narrative the author unravels a rationale for why they’re doing what they’re doing. All too often relatives say dismissively or desperately, ‘This isn’t our mum/dad/aunt/husband/wife. It’s the dementia’, but Stokes’ contention is that many difficult behaviours are not simply attributable to the underlying pathology of the disease, but need to be seen in the bigger context of the person’s life and experiences. Often a simple change of tactic can avert an outburst or distress.
‘Functional analysis is the pursuit of finding out ‘why’ people behave in the way they do. People, whether they have dementia or not, rarely do things without reason. Sometimes we have to ask ourselves, “Why did I say that, why did I act that way?”, and while we may not always like what we find out about ourselves, there will have been a reason. Similarly a person with dementia has reasons for what they do …’
Some solutions were relatively simple. Drawing the curtains at night so that Colin stopped being fearful of the strangers (reflections) lurking outside, and playing his favourite mood music, calmed him noticeably. Changing the colour of a bedroom eliminated Mrs D superstitious fear of the colour purple associated in her Catholic mind with death, grief and mourning. Removing a china cat stopped phobic Lucy’s persistent screaming.
Stop for a moment and consider the setting of a care home, the things that are done there. How would you feel on the receiving end? Then it’s easier to understand why private, reserved, dignified people were disturbed when taken from the relative peace and familiarity of their homes and placed (trapped) in locked wards with complete strangers (residents) all behaving oddly or menacingly, and other strangers (carers) invading their personal space and insisting on doing intimate things to them in secluded places. How are these external factors perceived by a mind altered by inexorable disease? Mrs O went from being ‘the most violent woman I have ever encountered’ to a much calmer gentler soul when Dr Stokes uncovered her past sexual childhood abuse, and realised that she needed the anonymity and unambiguous messages of a disinfected treatment room for all intimate procedures.
I’m sure we can all recognise many of the triggers Stokes identifies: long standing inhibitions about using public toilets; dehumanising or degrading management; an obligation to sit at a table with strangers exhibiting objectionable manners and habits; ‘enforced’ or ‘expected’ socialising; relentless noise, interruptions and activity.
‘Functional displacement provides the person with an equivalent but more acceptable means of meeting their needs in a way that is neither as invasive nor as exasperating for carers to endure.’
What a difference it would make if more of us were sensitive to these triggers and had the patience and persistence to find ways to circumvent them.
As it says on the book cover: ‘Storytelling is the oldest and perhaps best way of learning known to humans.’ The author’s detective work with 22 unique human beings whose lives have been turned upside down by dementia makes compelling reading, and what’s more these accounts help us all to see how important it is to reach out to each individual with compassion and understanding. There but for the grace of God …
A diminishing art
Hmm. The latest edition of the women’s writing journal Mslexia has come down in favour of writing books by hand. 
Author and workshop leader Jackee Holder reckons that the act of writing with pen/pencil and paper unleashes an extra layer of creativity. The slowness and concentration help you to focus and connect to what you’re writing. D’you think she’s right? Is that your experience?
Queen of chick lit, Jill Mansell, says she hand writes her novels … whilst sitting on a sofa with daytime TV blaring! Goodness, gracious! Queen of nothing me, I much prefer typing my stories – so much faster and easier to tweak and rearrange and cut and paste and find my way round – in perfect peace and quiet, squirrelled away in my study.
But maybe these other authors are more single-minded, not using their hands/time for all the multitude of tasks mine are grappling with. They’re certainly unlikely to be painting interminable iron railings! It has taken more-hours-than-I-care-to-tot-up of painstaking work for ours to go from pink primer to grey undercoat to black top coat (multiply the surface area you see by 2). Unbelievably fiddly and time consuming and weather dependent. We’re planning to christen them our ‘Independence Gates’ because we were working on them in the run up to, and during, Scotland’s vote on the referendum question.
Of course, I’m still writing and reading and thinking alongside the painting. Indeed tedious tasks like this offer very useful thinking/plotting time. I’d love to share my recent reading with you – it’s unexpected and challenging and uncomfortable – but I can’t because it would spoil the denouement of my current novel if you knew in advance where I’m going. Suffice it to say that some of my acquaintances will draw in their breath sharply – at the very least!
I’m also mentally preparing for a number of looming author appearance – if you’re in the Edinburgh area and interested, I’m at the Portobello Book Festival on Saturday 4 October (talking about dementia and Remember Remember), and the National Library of Scotland on George IV Bridge on Tuesday 21st October (focusing on organ transplantation and Over My Dead Body). If you come, do make yourself known to me. Incidentally, though they’re ticketed events, both are FREE! With these forthcoming appearances in mind the horrific experience of Kate Long, successful author of seven novels, resonated with me this week. Fairly early on in her career, she attended a bookclub session where members were discussing one of her novels. Turns out no one but the group organiser had liked it at all and they roundly condemned it – in her presence. What made it worse was that Kate had spent £100 and travelled 200 miles to attend the event! And she didn’t like to ask for reimbursement because the group were part of a charity. Insult to injury comes to mind. However, on reflection, since she felt nothing could ever be that bad again, the encounter actually gave her confidence. She now knew she had the inner strength to survive and acquit herself with dignity, whatever was thrown at her. Give that woman a medal for sharing her humiliation with the rest of us. That takes courage. Oh, and subsequent undisputed success, maybe, too.
To date I’ve been lucky; I’ve never encountered that sort of negativity. But maybe I should prepare myself. I’m not at all sure I should bob back as healthily as Kate.
What the papers say
This post should carry a government health warning: If you are quickly bored with facts or allergic to conundrums do not continue with this week’s blog.
I’ve always maintained that the subjects I write about are issues which challenge us as a society; they repeatedly hit the headlines. And this remains the case. To illustrate the point, I decided to monitor the medical ethical challenges that were reported in one newspaper (The Telegraph) for just one week (4-10 August 2014) and share with you what I found. Wow! Even I was bowled over with the sheer volume of material in this category in just seven days.
Please bear in mind as you read, that papers have their own agendas and the facts might not all be correct. However, on this occasion I’m not going to research every issue or attach links or hedge the topics around with qualifiers and alternatives; all these ‘extras’ would detract from my focal point. I’ll simply itemise the issue, and leave you to ask yourself: How would I feel in this situation? What would I do in these circumstances? What should society do? What is fair and just? What are the implications for educating the public, or our limited resources, or competing demands? … Or you can just accept the point if you prefer an easier life!
So … are you sitting comfortably? …
ASSISTED CONCEPTION
There’s been an outcry against the first national sperm bank (in Birmingham) which openly caters for lesbians and single women who want to start a family without having a relationship with a man.
The ongoing story of Gammy, the baby with Downs Syndrome (discussed in my last post) who was allegedly rejected by his commissioning parents following a surrogate twin pregnancy, rolled on with almost daily updates unravelling more and more bizarre aspects, bringing the whole question of surrogacy under the spotlight.
A Japanese businessman is said to have fathered nine babies during the past two years using Thai surrogate mothers. Seven nannies have been hired to care for them. Reports vary as to his motives: from ‘he wanted a big family for himself’, to ‘he’s part of a child trafficking ring’.
ASSISTED DYING
Former teacher, Dawn Faizey Webster, has been in a locked-in state following a stroke at the age of 30, two weeks after giving birth to her son. She was featured this week completing a university degree 12 years later, by blinking using a laptop that translates her eye movements into text. And yet other people in a similar state are pleading for assisted dying because life is intolerable.
MATERNAL v FETAL RIGHTS
Women who drink alcohol during pregnancy slow the development of their children’s brains, reported researchers in Los Angeles. They compared the brains of children with fetal alcohol spectrum disorders and unaffected children over a period of two years.
Shutterstock image
DEMENTIA
Saga conducted a survey of the over 50s and found that far more are afraid of developing dementia than cancer.
A study of 1658 Americans aged 65 and over has found that a severe lack of vitamin D appears to more than double the risk of dementia. But hey, the winter sun in the UK is too weak to generate adequate vitamin levels and older skin is less efficient at doing so. Cue salmon, tuna, mackerel and fortified foods etc etc etc.
A report from the Centre for Economics and Business Research has estimated that the number of people who are forced to retire early because they have (or a loved one has) dementia will double within 15 years.
PERSONAL LIBERTY v PUBLIC SAFETY
Several Britons have been quarantined over fears of the Ebola virus entering this country. It’s alleged that certain ‘special’ patients have been given specific experimental untested drugs to good effect which are not available to others.
MENTAL HEALTH
A nationwide survey of people with bipolar disorder, their carers and the professionals who treat them, is about to begin in this country. The researchers say it’s too often the case that other people remote from the sharp end are the ones who influence research expenditure; they want to remedy this. Critics question the morality of including people with mental illnesses.
A teenage girl in Merseyside took her own life after visiting pro-anorexia websites and self-harming.
ORGAN DONATION
A 24 year old, Stephanie Reynolds, has launched an appeal for a kidney for her mother via Facebook. Thousands of strangers from around the world have offered to be tested to see if they are compatible as potential donors. Her mother, Elaine, has an autoimmune element which means she cannot have an organ from a blood relation. The odds of finding a match are less than one in 10,000. Hence Stephanie’s Facebook appeal. Apparently such appeals have been successful in the USA.
Shutterstock image
PUBLIC HEALTH and LIFE STYLE CHOICES
Grizzly bears gorge themselves and become obese prior to hibernation but they don’t get diabetes. Scientists are asking: Could this offer a clue for treating humans?
A report in Annals of Oncology has stated that if everyone between 50 and 64 took a low dose aspirin daily for 10 years it would prevent 6518 cancer deaths each year and 474 fatal heart attacks. But the price would include an extra 896 deaths per annum from strokes and stomach bleeds. (Hmmmm. This one affects me personally. Some years ago, taking that small prophylactic dose for only six months triggered lymphocytic colitis which has plagued me ever since. So I wouldn’t myself describe it as poetically as Christopher Howse: ‘Aspirins are the vanilla cynosure of the rattling world of pills; unsparkling but attractive, like pearls’. Not in my book, matey! Sorry, I digress.)
It seems that prostate cancer screening could save more lives than programmes to detect breast cancer – so says a European study of 162,000 men from 8 countries. That would mean saving around 2300 lives per annum in the UK. And yet … the research has concluded that such screening should not be introduced. Why? Because a high level of over-diagnosis (resulting from the unreliable PSA test) would mean thousands of men going through needless treatment and ending up with incontinence or impotence.
RESOURCE ISSUES
A staffing agency, Prestige Nursing + Care, has issued new figures which indicate that pensioners’ incomes have fallen further behind the cost of care homes. This is adding to the pressure on NHS hospitals and putting vulnerable elderly people in danger. Also the number of people receiving home adaptations has fallen by 12% since 2010, heightening the risk and incidence of falls and injuries.
A report, The Future of Loneliness, has predicted that hundreds of thousands of pensioners will be all but cut off from services, shops and their local communities within 15 years because of the rise in the use of the internet. The result will be a hugely inflated risk of loneliness, already a worrying aspect of old age.
A ‘wonder drug’, metformin, normally used to treat diabetes, has been found to increase the life expectancy of patients with other conditions such as cancer and cardiovascular disease. This could mean an extra two and a half – three years for today’s 65 year olds. What’s more it only costs 10p a day. But hey, we’re already struggling with the problems of an aging society …
The National Institute for Health and Care Excellence has decided that a revolutionary drug, Kadcyla, that is said to give women with advanced breast cancer an extra six months of life, will not be available on the NHS because it is too expensive, even after the manufacturers have offered a discount. Countries elsewhere in Europe fund it. Ahhh, the old chestnut: if you look at the individual cases, doesn’t every family want to hang on to their loved ones for as long as possible? – well, most families anyway. But add up all those astronomical bills and balance them against only a few more weeks of life and set that against all the other treatments competing for the limited pot of money, and the perspective looks different.
Researchers at Imperial College have found that injecting a patient’s CD34+ stem cells into their brain following a stroke encourages tissue repair and may save them from death or severe disability. However, an expert has said these improvements could just be due to chance or the special care this small safety trial has provided for a tiny number of patients.
FAILURES IN CARE
The Care Quality Commission has admitted that at least 750 homes providing care for the elderly and disabled have been failing to attain at least one basic standard for more than a year. Why? Because the CGC feared legal threats from the owners of the homes. As a result vulnerable people have been knowingly put at risk. The CQC say that a new regime is being introduced to make protection much more robust.
Official statistics on NHS waiting times have revealed that the number of patients forced to queue in ambulances outside A&E departments has almost doubled in three years. In addition, over 3 million people are now on waiting lists for operations – a rise of 700,000 compared with 2010 figures.
Phew! As you can see, I shall never run out of triggers for new novels! I’m constantly thinking, What if ……?
‘It is yesterday that makes tomorrow sad’
No two author appearances are the same: the venues, the audiences, the questions, the reactions, vary greatly. But of course, for the author, the subject matter is pretty constant when you’re doing a post-publication circuit. 
I’m in the midst of this at the moment for Over my Dead Body so it made a nice change on Monday to sit in the body of the kirk listening to somebody else; watching and learning from their performances.
Sally Magnusson was the star attraction of a conference at the Dementia Centre in Stirling University, talking about her new book: Where Memories Go: Why Dementia Changes Everything. It chronicles her mother’s journey into dementia – ‘a vicious brain affliction that hijacks memory, personality and functional capacity’. The blurb summarises it as ‘both deeply personal and a challenging call to arms. Faced with one of the greatest social, medical, economic and moral challenges of our times, society must urgently reconsider how we look after the most fragile of our citizens.’
Sally herself has been a familiar face to us in Scotland where she regularly presents for the BBC; and of course, her father, Magnus was a household name before her. She comes across as someone I’d like to meet, so I went with high hopes … and a degree of fellow-feeling given that my own mother developed vascular dementia in the last year of her life.
- Reproduced with kind permission from the DSDC and Tony Marsh, photographer
I was not disappointed. Her experience, as well as that of another excellent speaker, (Katharyn Barnett, a diamond analyst, telling her similar story) echoed mine in several dimensions. Both women lamented the lack of understanding, knowledge and empathy, the need for ‘big, bold, top-down culture change‘. Both appealed for better resources and support. Amen to that.
Sally’s book itself? Beautifully written, moving and very readable. It doesn’t shirk the reality, the frightening, sobering facts about this horrible thieving illness which is now so much more prevalent in our aging society. But it’s softened and made more accessible and gripping by the personal elements. The focus throughout is her beloved mother, to whom she’s speaking, whom she wants to remember in vivid detail.
‘I tap late into the night, eager to round up your slippery self before it slides into yet another shape. It’s as if I have to catch you now, as if by the time I see you again tomorrow it may all have changed, as indeed there is every chance it will. 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 …’
In the telling, the Magnusson family come alive and they feel very real. In spite of her glamorous public persona, Sally is a ‘normal’ daughter, niece, mother, aunt, to her many relatives, rolling up her sleeves and getting stuck in with ordinary everyday things. Driving the elderly as well as the young around. Escorting, comforting, entertaining. Being irritable, losing her temper, regretting, lamenting. As she says, she too knows ‘the confusion in a middle-aged soul’, being ‘pinched so hard between two generations that we have trouble locating an identity of our own.’
Her father, Magnus, comes across as a rather detached figure, retreating to his study and his writing, leaving the running of a large household to the womenfolk. Mother, Mamie, once a highly respected journalist in her own right, is portrayed as a lively, loving, wise, colourful character at the very centre of the family. Sally recalls her ‘falling out of a punt into the River Cherwell, tumbling down a Glasgow manhole and half drowning during the vigorous self-cleaning cycle of an automatic French toilet,’ but always bobbing up again with insouciant charm and wit. Now though, she’s causing a different kind of reaction, a vague unease segueing into horrified realisation: losing her sense of curiosity, wandering around a guesthouse half clad, challenging two huge ‘gansta types’ on the London underground, needling her twin sister, forgetting words.
The diagnosis comes harshly and there are no magic bullets, search as Sally might among the world’s experts. The family regroup; the Mamie-sitting begins. In spite of their busy, high profile jobs, the Magnussons resolve to look after Mamie at home. They are articulate, energetic, insightful, relatively wealthy – they have the wherewithal to marshall support and an army of assistants. Not everyone can. But even with their resources the toll on Sally and her sisters is heavy – the constant anxiety, chaos, extreme fatigue, frayed nerves. Their own families suffer.
On the other hand, they see for themselves the benefits of familiar surroundings, constant family presence, the therapeutic value of the music which has been so central to Mamie all her life. They confront head-on the reality of decision making at the end of life – do we let her slip away or do we treat? – as a family: unencumbered by the constraints and pressures of officialdom, with their mother safe in her and their own world.
‘What mattered was that life still burned within you, fierce and lovely, and we could not let you go.’ However ‘… we know it could be different, perhaps even should be different, next time. Drug development is out of kilter. We have medicine to stop lungs filling up but not the brain eroding. We have drugs and vaccines to counteract or slow down almost ever disease that nature has organised to bring life to a close, but none to mend the mind. So thousands of old people lie in thousands of beds,waiting for a death we do our best to deny them for as long as possible. Better, perhaps, to face thinking about a time when the treatment might be allowed to stop.’
Over time they revisit their decisions as they see the life they have revived her for sliding into ever more debilitating levels: the ‘scorching emptiness’ in her eyes, the dislocation, the sadness, the fear, the outbursts of rage, the ‘tyrannical’ attention seeking, the inconsolable weeping, the hostility, the violence, the ranting and raving, the unearthly keening, the hallucinations, the ‘nightmare your life became’. But Sally finds the most harrowing moments are when her mother manages to rise above the fog sufficiently to articulate her feelings: utterly lost; hating her dependence on others. That was the worst stage for me too, when my mother was aware of her predicament.
Difficult as the behaviours are, the Magnusson sisters face other stark challenges.
‘What is threatening to defeat us daughters is not so much your behaviour as our emotions. Others, namely the stalwart women who look after you as a part-time job, seem often to manage you better than we do. We have kept a major role in what is now a 24-hour rota not just because the financial reserves are finite but because it is clear you want us. Yet each of us is haunted by a mounting sense of failure … Perhaps, we three sisters tell ourselves, we need to hand over the reins to people who are not so emotionally involved, who don’t find tears flooding into their eyes every time you lash out or look lost. Perhaps we must contrive to become breezy visitors rather than ragged carers.’
Nevertheless the occasional sparks of recognition, the lulls in the battle when they sang together, the rare tender touches, kept them persevering at home to the end, shored up by the team of professionals who tended to their mother’s physical needs.
In the end Sally concludes, on a personal level, through this painful journey with her mother, she has discovered the true meaning of love – a love which she wants her own five children to understand. And on a more global level, she believes, ‘A nation discovers its truest dignity when it cherishes the dignity of those from whom it has not heard for a very long time. That much I have learned, beloved mother, from your living and your dying.’
The story isn’t new. So many thousands of other daughters have travelled a similar path, but perhaps the powers-that-be will listen to an attractive, articulate celebrity who has captured the anguish and the need so eloquently.
One final thought: Analysis of Iris Murdoch‘s writing reveals a change – simplified syntax and impoverished vocabulary – when Alzheimer’s started to destroy the connections in her brain. Mamie Magnusson simply stopped writing. I must listen well to critique on my own scribbling as the years roll on! Is this dread illness even now lurking under the lamp post outside my window?
How many Camels are there in Holland?
Today, come with me into the big tent, the Main Theatre, to listen to two well known people – both octogenarians. There are 570 seats and it’s packed to the gunnels. Every year I’m astonished and heartened that thousands of people pay so much money to listen to writers. But then, this is the world’s leading literary festival.
First, at 10.30, it’s Phyllida Law, mother of Emma and Sophie Thompson, and a well known actress in her own right, talking about life with her mother, Mego, who developed dementia.
Phyllida is known to her Rwandan grandson as ‘ancient lady‘; I could only dream of looking as sparky and being as entertaining as she is at 81. Even walking in she stops to quip! When an emergency vehicle momentarily drowns her out, when something goes bang at the back of the tent, she has a witty aside ready. Journalist Jackie McGlone has her work cut out keeping the actress on track, but does so beautifully when she can stifle her own mirth.
I didn’t know until I researched the family that Phyllida is a Scot: born in Glasgow; moved to the village of Ardentinny to look after her mother Mego when she needed care; still keeping a remote cottage in Argyll as a retreat. She confides that she loves the warm embrace of the Scottish people who formed a team of carers to help her shoulder the responsibility when her mother needed watching at night as well as by day.
How many Camels are there in Holland: Dementia, Ma and Me is her account of life with her mother as her mental acuity diminishes; using the scribbled notes she kept during that time. It’s her second memoir – she also wrote things down when her mother-in-law ‘Granny Annie’ was living with them for 18 years (by her own account, not the 40 years Wikipaedia reports). Annie was very deaf and Phyllida resorted to handwritten notes to communicate with her. As she admits: ‘I can’t do any of that laptop rubbish.’ On neither occasion were the scribbles intended for public consumption, but when Phyllida wanted unusual and special gifts for her two daughters on their 50th birthdays, she hit upon the idea of a compilation of these family anecdotes. What a uniquely precious gift! Now shared with the public.
The title comes from the ridiculous questions asked to test the deterioration in Mego’s mental ability. ‘How heavy is an average hammer?’ ‘How long is a necktie?’ Phyllida berates them as such ‘male questions‘. Far better to ask, ‘What’s your bra size?’ I confess I’ve never heard such questions asked in any mental state assessment, but then Phyllida’s take on dementia differs from my understanding in a number of ways. She’s a consumer speaking from a single personal perspective, instinctively resorting to hyperbole and the witty one-liner.
In reality reviews have been very mixed and one sneakily wonders if it would have been hyped as much had it been written by your average Mrs Joe Bloggs. But in person the author comes across as delightfully scatty, witty, frank and fun. She says her mother was always slightly dotty so the transition into dementia was barely perceptible initially; there’s a strong suggestion that her zaniness has passed to her daughter.
Caring for someone with dementia can be gruelling and disturbing, but Phyllida says life on stage, and being married to the writer and narrator of The Magic Roundabout, equipped her with a lively sense of humour, and in her book she demonstrates a delightful capacity to laugh at the absurd. Indeed she’s been accused of not taking the subject of dementia seriously enough. I love the example of Mego preparing to go out. ‘Ma, you’re not wearing your distance specs.’ ‘Oh, that’s all right, dear, I’m not going far.’ And the occasion where her husband exclaims: ‘The pudding’s moving!’ Phyllida adds: ‘The polite term is weevils!’ And their brief experiment with marijuana in scones (as a possible treatment for Mego) where they managed to overdose themselves, had the audience roaring with laughter.
But as she says, it’s not the craziness that is sobering and heartbreaking, it’s the moments of clarity. She instances many in the book. Awaking from sleep one day and not recognising anything or anyone Mego says: ‘I think I must have been a little bit nearly dead.’ Asked on another occasion if she needs anything from the shops she says, ‘A new brain … I’ve lost mine.‘ Imagine knowing.
A questioner asked if her relationship with her mother changed once the dementia really took its toll. Phyllida replied with disarming candour that there was always a distance between them because she had been sent away to boarding school from the age of 7, so her mother was a sort of ‘half-term treat‘. This space between them meant caring for her later was easier than it might have been. Nevertheless Phyllida admits to a ‘thread of fear for the future‘ running through her life, lest she has inherited the condition herself.
Jackie McGlone described HMCATIH as written with ‘a clear head and a loving heart‘, allowing the reader ‘to smile with not at‘. What a lovely tribute.
Just time for ten minutes in one of these new seats and I’m back queuing for the 1.30 event in the same tent: Roy Hattersley talking about the Dukes of Devonshire. He’s been attending the EIBF annually (talking about his 19 books) for all its 30 years – maybe that’s why he was allowed to chair his own session.
Having recently visited Chatsworth, the seat of the Devonshire’s, I was looking forward to some illumination of the family history. Hattersley spoke with erudition, fluency and great knowledge, but it was a whirlwind history lesson covering a 500 year history. I fear I can’t possibly do justice to it or make it interesting for this blog, so I won’t even try to. Rather I’ll select a couple of gems: The 8th Duke was the only man who’s ever yawned during his own maiden speech! In Hattersley’s view, MPs today should learn a lesson from the Whiggs of the past: go by their own personal judgement and conviction not by the voice of their constituents.
I leave the crowded square with my head whirling.
Summer holidays
Holiday time is here again for Scottish schools, and my calendar has several weeks blocked out in indelible ink for the grandchildren who come to stay every summer. A lovely excuse to forget work and get out and about exploring this beautiful and historic land. We’ve made for the sea several times just to escape the intense heat!
Also written in capital letters in the diary are assorted slots for the Edinburgh International Book Festival – always a highlight in the year. As usual some sessions were sold out before tickets even went on sale to the public (grrrr! Why do they do that?), but by dint of buying them on the first available day, I have seats for events about topics as diverse as fleeing a religious cult; a journey into dementia; a history of the Dukes of Devonshire; the neuroscience of memory; the death of Dr David Kelly; the ethics of dying; one woman’s experience of acute encephalitis; and the role of storytelling in maintaining sanity. Sounds pretty good to me.
I’ve also had invitations from elsewhere to attend a debate on assisted dying and to showcase my work in an arts and ethics symposium, both in August, so lots of excitement ahead.
On the Over my Dead Body book front things are moving steadily. Lots of double checking needed to be sure every step is taken on sure foundations, but this week the final final details are going off to the cover designer, and as soon as he’s worked his magic, the whole thing goes to the printer. Too late then for any more tweaking … Help! Hard to believe we’re in the home straight.
Challenging behaviours
For those of you who are new to my blog, I should explain that I am no stranger to dementia. My mother developed the vascular form during the last year of her life; I’ve spent a fair amount of time over many years (as a volunteer) with people who are living with this and other variations of the illness; attended a number of conferences on the subject; read literally dozens of books about it; and even written one myself.
Even so, this week I learned several new facts about it when I attended a course on how to manage challenging behaviours. Did you know for example that changes occur in the brains of people with dementia that make them prefer sweet things? Some delegates on the course were salivating at the very thought of a cast iron reason for skipping the main course and diving straight into dessert … two desserts maybe!
Did you also know that memories are lost in the reverse order to that in which they are gained? Which is why the person might not know what they had for lunch but they vividly remember their mum.
The course tutor was really good, using both her academic knowledge and her practical experience (she was a manager of a residential home for people who presented with challenging behaviour) to excellent effect. All the delegates present are currently employed in caring for residents in care homes in their working lives, but don’t we all know someone with memory loss and confusion at some level? So the kernel of the course is probably relevant to anyone.
The secret to successfully being alongside them without getting distressed yourself, is to remember that challenging behaviours are a form of communicating something. If we’re uncomfortable or upset by these behaviours we are not ‘getting’ what the person is trying to convey. Remember Martin Luther King‘s comment: ‘Violence is the voice of the unheard‘? We have to ‘listen’ to what’s being ‘said’ by these reactions and try to think ourselves into the shoes of the person exhibiting the things which we find challenging; to work out what might be making them feel trapped or frustrated or afraid or embarrassed etc. And isn’t understanding how people tick, why they do what they do, the stock in trade of every novelist?
For me personally there was another very salutary lesson too: there is no shame in admitting ‘defeat’. There are days when I simply can’t make any headway with a person, I can’t ‘walk in their moccasins’, and I come away feeling guilty and dejected by my own inadequacy. Better to accept gracefully that today I am not the person to be with her/him, or to do that activity with her/him, I learned. Maybe indeed I am not the person best suited to this particular resident/patient/friend at all. It’s probably nobody’s fault; merely a feature of the disease.
I’m often asked if I’m a full time writer. No. But I’m sure I’m the better for spending time walking alongside these vulnerable people who can teach me such a lot, some of which in turn feeds into my writing life.