Dementia
Missing …
I do love discovering a new author and devouring their books. It’s a bit like getting to know a new friend. One such recent discovery was Samantha Hayes. You might – or much more likely, might well not! – remember I posted a review of a psychological thriller by her at the beginning of August. It rang lots of bells with me, which sent me off in search of more of her books. I bought four – enough to give me a feel for the kind of writer she is, I thought.
Until You’re Mine which came out in 2013, was her first published thriller, so it was appropriate that this was the first one I read. Had her style changed over the years? Is she a predictable author? Would I find her later novels as exciting? I’m very aware that there are downsides to immersing oneself in the writings of a single author – even the best can pall somewhat with over-exposure.
Well, Hayes specialises in scary, skin-crawling tension, that’s for sure … and missing persons … and last minute unpredictable twists. I’ll give you a brief summary of each novel in chronological order of publication.
You Belong to Me (2015)
Three women have been terrified by stalkers. Two of them – Alexandra Stanford and Melanie Carter – are now dead. Both had red hair, both had infinity tattoos surgically removed from their bodies. The third one, Isabel Moore, also red haired with the same tattoo on her neck, vanished without trace.
DI Lorraine Fisher is haunted by the memory of Alexandra’s dead body. She feels responsible; Alex had reported her terror but there had been insufficient evidence for the police to do anything about her stalker, Jimmy Hardwick. Melanie’s case was different, but some time after her death, Lorraine is told about a man having hassled her too. Could this be the same stalker? Is there a serial killer on her patch?
Isabel Moore, the third woman, has hidden herself away in India, but she comes out of hiding when she receives word that both of her parents are dead; killed in a car crash. And to her horror, she learns that the driver of the car was Felix Darwin, the same controlling man who had made her life a living hell.
Three first person voices tell the story, all with serious issues. One of those voices is that of the seriously disturbed man who terrorises women. It’s scary stuff and certainly gets inside the experience of abusive control. I didn’t guess the final twist but I did find some of the action rather stretched my credulity.
In Too Deep (2016)
Gina Forrester is struggling – first her son Jacob dies; then her husband Rick disappears. Now someone is taunting her. Is she going mad? Who was watching her from inside that house in Evalina Street? Who really booked a week’s holiday in a luxury hotel for her? And what exactly is her daughter Hannah hiding from her? Everywhere she goes Gina sees ‘bits of Rick, as if he’s been blown into a million pieces‘, and she’s determined to gather them all up, piece him back together again.
Some of the clues are rather too clunky/unsubtle for my liking and I did guess the main twists well before they were revealed, but the question of how it would all resolve itself remained, and that tension kept me reading. Nothing, however, prepared me for the last few lines. (It was the final page of Until you’re Mine that blew me away too.)
The Reunion (2018)
It’s every parent’s worst nightmare. The Reunion conjures up the cold horror felt by a family when a thirteen year old girl, Lenni, vanishes. It’s 21 years ago now … and the family are in trouble once again. Her father is suffering from Alzheimer’s disease; family rifts are unresolved; someone is sending creepy messages saying the caller knows where Lenni is. It’s time to sell the property which gave such joy and security to the children and their friends. Lenni’s sister Claire decides they’ll have one last hurrah at the house and arranges a reunion of everyone from those halcyon days – which means all those who were present when Lenni actually went missing. But the week intended for reminiscence therapy for her father and healing for them all, turns into a nightmare. Another teenager goes missing. Crimes are committed. Trust is shaken.
This one ticks lots of boxes. It covers my kind of territory: eating disorders, dementia, family dynamics and secrets. Again the ending was a surprise, but for me, the writing isn’t as good as the first one of Hayes’ books I read, and that took the edge off my enjoyment.
So, overall, Samantha Hayes gets a big tick from me for her devious plotting, and for her breathless ‘well-I-didn’t-see-that-coming’ endings. And I’ve learned something more about how to tingle spines in a domestic psychological thriller. But comparisons show me that the component that grabs my interest most is the topic under review and its ethical dimensions. Part of my mind is sorting, seething, delving beneath the surface, wondering What would I do?
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 …
‘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.