Don't Forget to Remember - My mother, Alzheimer's and me.

This post takes me into uncharted territory in order to talk about an area of health much discussed and likely to affect all of us directly or indirectly at some time in our lives: dementia, specifically Alzheimer's disease.

I am writing this having noted that this week sees Alzheimer's Awareness Day on 21^st September, two days before what would have been my late mother's 90^th birthday. My mother Margaret Long died in 2013 at the age of 84, relatively young by some standards and indeed much younger than either of her parents, who both lived well into their 90s.

My mother, Margaret Long 
(née Cyphus) 

Her death was, however, a merciful release from a slow and agonising decline. She died afflicted by a particularly severe case of the disease, which led firstly to a period of anxiety and fear for her in the months following my father’s death in 2006, and then to a loss of memory which was absolute in an unimaginable way: she had no idea who she was, where she was or who anybody else was. This formerly vibrant, gregarious, talented and loving woman was reduced firstly to a cruel parody of her former self and then to period of mere existence in a world in which she had lost all ability to connect with anything or anyone at any more than a fleeting and superficial level.

I am writing this as a post largely because it helps me to get thoughts written down, but also perhaps to help others who may be dealing with the same situation to feel less alone. I cannot necessarily offer great hope.

Firstly, to put things onto context here is an account of my mother's life, lifted largely from the eulogy which I wrote and delivered for her funeral in March 2013:-

“Margaret was born on September 23rd 1928, the second child of my grandparents Cyril and Rose Cyphus. I knew Cyril and Rose well, and feel I have go to know them even better in recent years as I have researched their ancestry and re-edited her Cyril’s remarkable memoirs. He was descended from generations of Cotswold farm labourers on his father’s side, and from Hugeneot French immigrants on his mother’s side, but by the time Cyril was born, music, and in particular church music, was already firmly established in their lives: his father and grandfather were both organists in picturesque Cotswold country Parish churches, and Cyril went on via an education at New College Choir School in Oxford to a career as a church organist, choirmaster, music teacher and music examiner. Cyril’s youth was scarred by a period of active service in the First World War: he survived the Somme, and returned to the Western Front in 1918 as one of the first tank drivers, one of those who broke through the stalemate and brought that futile conflict to an end.

Margaret’s mother Rose was from a family of middle-class merchants, clergy and musicians: Rose’s father and grandfather were country clergymen, but her mother was the great-granddaughter of the Victorian musician Charles Henry Purday, harpist to Queen Victoria and composer of the hymn tune Sandon, which, with the words of John Henry Newman’s “Lead Kindly Light” provide one of the most beautifully evocative pieces of Victorian musical poetry.

Margaret’s childhood in the London suburb of Lewisham was simple and happy: poor but not desolate, with an older brother Tony, whom she idolised and a younger sister Liz whom she mothered. Like so many families of their generation, their world was shattered by the outbreak of a Second World War: Margaret had just won a scholarship to the prestigious Mary Datchelor Girls School, and the school was evacuated en masse, firstly to Ashford in Kent and then (when someone in Whitehall realised that moving children from London to a place nearer to the front line might have been a bad call) to Llanelli in South Wales.

There can be no denying the lifelong impact that the War had on Margaret, and in her old age it cast an ever darker shadow over her, particularly after she attended a 50 year reunion of evacuees in 1995: she was largely separated from her parents for almost six years, caring for a terrified younger sister and living with the respectable family of an overbearing Welsh civil servant who lost a son in the Battle of Britain while Margaret was with them. Of the many tales from that time, some no doubt embellished and exaggerated over the years, we are pretty sure that it is true that she had to go and fetch the drunken father from the pub, bring him home, sober him up and tell him the news about his son’s death.

And yet she became very attached to the family and in particular to her foster mother Mrs Wilson, who was heartbroken when Margaret had to return to her real family, and she kept in touch with her and attended her wedding.

Perhaps the most remarkable tribute to Margaret’s fortitude is the fact that, as soon as the War was over, she just got on with her life. Mary Datchelor School reconvened and everyone just got on with things, which for Margaret was a scholarship to the Royal Academy of Music, marriage, a family and a career in music teaching.

Of course my brother Chris and I, like all children of our generation, got a little tired of the “during the war” stories, but by and large, we lived all of our childhood and early adult lives with a brilliant mother who had very successfully put the trials and tribulations of her teenage years well and truly to the back of her mind. For that, we, and many others, have cause to be immensely grateful.

She met our father Arthur at the age of 22 when she agreed to deputise for a fellow musician - allegedly a boyfriend, whatever that meant in those days - as organist of Stamford Street Unitarian Chapel on London’s South Bank, where Arthur was embarking on his first ministry. They were in many ways an unlikely couple – proof if it is needed that the best partnerships are those of opposites, and of course they were happily married for over fifty years.

Their move to Bolton in 1953 must have been like moving to a foreign land. Arthur’s choice of a Unitarian Chapel in one of the poorest parts of a smoky Lancashire town landed her, a genteel and cultured Southerner, at the tender age of 24 as the Minister’s wife in a large, draughty manse in the shadow of two huge Lowryesque cotton mills, surrounded by Lancashire folk whose manner of speaking was to her barely intelligible.

Her escape was Bolton School Girls’ Division, under the newly appointed leadership of the legendary Headmistress Margaret Higginson – another bewildered innocent southerner abroad, who became a lifelong friend. She started work there as a part-time piano teacher around my first birthday – scandalising those who thought that the Minister’s wife should be at home looking after her two children.

But Bolton School was an oasis of culture amidst the dark satanic mills, and became her life for over thirty years, firstly as just a piano teacher, but later as a classroom music teacher, and finally and triumphantly as a Director of Music who presided over a golden era when, in a double act with the late Paul Blissett and a supporting cast of many, the school produced musicianship of unprecedented excellence in choral, instrumental and academic scholarship. I know that this excellence is still in evidence to this day.

But like all good teachers, she was about much more than her subject: under Higgy’s bold and innovative leadership – sorry, I can’t think of her as anything but Higgy – the school espoused the sort of holistic philosophy of education which all schools have subsequently bought into, and Margaret was at the heart of it. If she had a spiritual home, I think it was actually not the Music Room, but rather St Mark’s Cautley, that imaginative outdoor pursuits centre bought jointly by the Boys’ and Girls’ Divisions in 1968, and where Margaret, Higgy and others including me spent some of the happiest days of their lives in the midst of the remote Howgill Fells.

Lest this gives the impression that she was just wedded to the job, let me dwell awhile on Margaret as a mother and grandmother. Chris and I were brought up in the happiest of families, guided and cared for by our Yin and Yang parents. We fell asleep at night to the sound of father bashing out sermons on his typewriter upstairs in his study, and mother playing the piano downstairs. She taught us to love and laugh, but also manners and standards – I still find myself using her saying “Don’t take your standards from others” when countering the excuse that “everyone else does it”. Of course we led her a merry dance at times, and I don’t think she ever forgave us for falling under the spell of pop music in the early 60’s thanks to our cool next door neighbours, whose son played in a pub band – the Heebie-Jeebies - and whose teenage daughters babysat us and played Beatles records to us, but in later life I have come to love and appreciate her music as well as “that dreadful Beatles stuff”.

She adored becoming a Grandma at a fairly young age, and delighted in her spritely energy and physical fitness – she wanted to be an active Grandma, unlike her own housebound and often bed-ridden mother, and loved it when Felicity, Nick, Rosie and Natalie were in her care.

This caring and interested nature showed itself outside the family as well: in early retirement, she devoted her energy and intellect to the CAB, and she was a great lover of the theatre and concert hall, enjoying the proximity of Manchester and its cultural life when we moved from Bolton to Prestwich in 1975”.

Quite a life, and a life well lived. For many years, she seemed indestructible, like many of her generation. But then came Alzheimer’s. If you are reading this, worrying about an elderly relative, please forgive if what follows depresses you. There is no glossing over it - it’s horrible.

It started in the later 1990s as she approached the age of 70. It was subtle and imperceptible at first. We all forget things, we all repeat ourselves, and it gets worse as we grow older. She always had a tendency to reminisce and tell lengthy anecdotes and perhaps to elaborate and exaggerate them - don’t we all - but gradually there was a sense that it was more than that. The same stories were repeated, sometimes during the same conversation, and details got changed or exaggerated at each re-telling. Then she started forgetting or overlooking things, sometimes double booking herself for engagements, for example.

At first, it could be explained away: “we all make mistakes”, “we all forget things”, and old age catches all of us out at times, we thought. But eventually, members of the family compared notes and realised that we were all getting concerned. Specifically, I remember her younger sister Liz taking me aside, in summer 2003 at their brother’s funeral, and asking me conspiratorially if we were aware that Margaret kept repeating herself. We were all relieved to share the concerns, and by then my brother and I had raised it with our father, who although nine years older than her, was still in good physical and perfect mental health. He responded with a “thanks but no thanks” approach, acknowledging that there was an issue, but firmly resolved to deal with it himself. He didn’t want to rock the boat and said she would “make his life hell” if he made her go to the doctor about it.

As time moved on, and our father's health declined, it became clear that things were far worse than we were allowed to see. The biggest issue was that not only was she in denial about it, but that she was aggressively defiant of any attempt to make her confront the problem. By the time our father fell ill in 2006, it became clear that she was far more dysfunctional than either he or she had been prepared to admit, and the extent to which he had covered up her memory loss by taking on all household management tasks, cooking, cleaning, laundry etc started to become apparent. When he became frail and ill, she was incapable of doing anything to cope with the situation. By the time that he died, her grasp of reality was so limited that she had to be repeatedly reminded that he had indeed died. She was still physically quite robust, and fiercely independent, so some incidents were almost comical. For example, when we all rolled up at her house on the morning of his funeral, she cheerfully greeted us at the door, dressed in casual clothing with “lovely to see you, thank you so much for coming to see me”, totally unaware of why we were there. Her two daughters-in-law had to gently take her upstairs to choose an appropriate outfit and remind her where she was going that day.

But over the subsequent months, things went into a downward spiral, with her denial of the issues that she faced compounding the difficulties. She kidded herself that she was a strong, independent woman defying the years, but in fact was quickly losing touch with reality. She would phone and tell stories of what she had been doing which turned out to be complete fiction; for example she would invent stories of break-ins at her house, complete with visits by the police, which turned out to be complete fabrications.

Sadly, during this period, she fell victim to real crime: a local youth befriended her and offered to help her with some jobs around the house, charging her for things like changing light bulbs. She gave him her bank card and PIN, asking him to get cash for her from the ATM, and of course he helped himself to significant sums from her account until we rumbled him and he was eventually caught by the police using a security camera. Unfortunately, no crime had been committed, as she had asked him to get the money out and had shared her bank details with him, but it showed her vulnerability.

She still pretended that all was well, even claiming that her former school had been in touch asking her to come back and help out as a supply teacher, or that the CAB had begged her to resume work as an advisor. She said that she still played and practised the piano, but it soon became obvious that she could no longer read music, and in fact played just one piece (Mozart’s Rondo Alla Turca) at breakneck speed and on endless repeat. A tragic end to a life devoted to musicianship of the highest order.

Eventually, after she had been found wandering the streets late at night by the police, and had started inexplicably to empty her rubbish bin into next door’s garden, pick dozens of flowers from gardens along the street, and feed her beloved cat with rich tea biscuits, we had to take action. Her aggressive refusal to acknowledge any problem meant that we had to get her diagnosed through making her believe that appointments were for other medical issues (it is agonising having to deceive and con your mother), and eventually she was admitted to hospital after sustaining a mystery ankle injury when out walking alone. Doctors admitted her for her own safety, and by this time her short term memory was so poor that after two or three days as an in-patient she had forgotten she even had a home. This was in spring 2011, and she never returned home, but was transferred to a care home after a psychological assessment ruled her to be a danger to herself and others.

From then on, the mental decline accelerated, with our own guilt at her being in care offset by the knowledge that she was at least safe. She very soon had no idea who we were when we visited (which my brother and I did, at least weekly and often more), and her grasp of any sort of reality evaporated. She apparently demanded and devoured meat pies, totally unaware of what they were, despite being a lifelong and militant vegetarian. She sang along with a cheesy Tom Jones tribute act who came to entertain residents, despite a lifelong revulsion at popular music. Fleetingly, she appeared happy in her own La-La Land for a few weeks, but she quickly lost the capacity for any sort of human interaction. In the end, she rapidly became a mere shell, existing and not living, doubly incontinent, her brain clearly shutting down one section at a time until, mercifully, it forgot how to keep her heart and lungs going. She died peacefully after falling into some sort of coma folowing a short illness.

It’s a bleak tale, and as I enter my sixties I am haunted by the fear that I could go the same way, or rather that my family and friends would have to watch me go the same way, because the positive as far as we could see was that she herself suffered relatively little in those final months.

Our biggest regret is perhaps that we should have confronted her and our father when they were covering it up in the earliest stages. Could an earlier diagnosis have helped? Who knows?

All I can say in conclusion is make the most of your loved ones while they are still there, not just physically there, but mentally there. If you are concerned about a loved one, seek help. And amongst the many worthy charities who seek our financial support, spare what you can for Alzheimer’s research. We have to believe that we can perhaps one day live out our old age free from the fear of this insidious disease.

All my posts have a song title, so why should this be an exception? Let's call it Don't Forget to Remember.

Do you really want to hurt me? Language matters.

I am a linguist by profession: words and language are (or were) the tools of my trade. I have therefore followed with interest the conversation that has developed over the past year or so regarding the use of language in healthcare.

Fundamentally, as Dr Partha Kar pointed out in this recent post, it’s a simple question of good manners. Whether it’s the #HelloMyNameIs campaign so admirably started by and perpetuated in the name of the late Dr Kate Granger or the NHS #LanguageMatters campaign arising from the thoughtless language sometimes used to talk about diabetes, choosing appropriate words is a matter of common courtesy. Our sophisticated power of speech is what distinguishes us from other animals, and words are wonderful things, but can also be very powerful and hurtful weapons.

However, at the risk of clouding an age-old and simple issue of manners, I do feel that the issue of language has become more difficult in our increasingly connected, hyper-communicative and instantly reactive world. And the problem extends well beyond the world of healthcare. At the risk of seeming like an anti-internet reactionary (which I am anything but), I feel that the written language has become so common a currency that it has perhaps become devalued and under-estimated.

The ease and ubiquity of exchanging words with a far larger audience than was possible just a few years ago means that the words that we so readily use have a far greater reach. We have all become potentially influential writers, with the power to persuade and influence but also to hurt far more people than just those around us.

The English language in particular is wonderful, and in many ways deserves to have come to dominate communication across the world in the way it has done. Our language is uniquely rich and subtle, and has the ability to adapt and change at bewildering speed without losing its power or its charm.

Yet perhaps one aspect that requires more thought and attention is the way in which divisions between the spoken and written forms of language have become blurred: thanks to ICT, we all now communicate far more in writing than in the past, using text, social media and email to communicate in a way which just wasn’t possible in the past. Some moan about sloppy language, grammatical errors, and the use of abbreviations, acronyms and emojis as evidence that standards are falling, yet I see some marvellously expressive use of language in the online world.

However, what we are in danger of losing is the ability to distinguish between appropriate registers of language. In effect, we all now write as if we are speaking, which is great, but overlooks the fact that the written word (as seen on the screen of our phone or tablet) has a potentially hurtful permanence that the spoken word does not. We all say things in the heat of the moment which are hurtful, but we can apologise, explain why we did it, then perhaps say the same thing in a gentler way and in so doing start to put the hurt right. But anything written, for example in a Twitter post, stays there in perpetuity, such that it retains the power to cause harm and upset in a way which may not have been intended. If you need proof of the problem, we now have a US President who appears to think it wise to share his impulsive and at times ill-considered thoughts with the world using Twitter. 

The decline of formal registers of language is in some ways commendable: the Plain English Campaign has done much to ensure that ordinary people can understand complex specialised documents and that rich and powerful people and organisations cannot hide behind unnecessarily opaque language. But there is a place for formal and restrained language which has been carefully crafted, considered and reviewed. The sort that was in the past used in letter-writing, dare I say?

Our written language has, quite understandably, become very "chatty". Which is fine in its own way, as long as we don’t overlook the context or the importance of what we are saying. If there are no boundaries to what we say, no conventions and taboos, we risk causing unintended harm, and using words which are far too strong for the context. In particular, swearing has been massively devalued (as happened years ago with the French language), such that it has completely lost its impact yet has retained the power to cause offence and upset. I am not against the use of swear words, but there is no point in having them if they lose the power to add an element of shock and emphasis to what I say. So on the very rare occasions when I do swear, people know I am really annoyed. And I would never swear in writing unless directly and privately addressing trusted friends. The casual use of previously taboo words in the online world has to some extent undermined the power of those words, yet they are still nasty: people say “WTF” without thinking what they are actually saying, and casually insult those of whom they disapprove using slang words for the genitalia of both genders. There was an amusing lack of irony which I saw in a supposedly supportive response to Partha’s post calling for people to be gentler in their use of use of language by someone saying “It's surprisingly simple to not be a dick”. Talk about fighting fire with fire...

So perhaps some of the keyboard warriors out there should remember that although they may think they are just “talking” online, they are in fact writing, and in so doing can cause more hurt than was intended. And just because the object of our anger is a doctor, a politician, a footballer or a celebrity does not mean that he or she has no feelings.

Language matters, and words can hurt: but “Do you really want to hurt me?”