Everything I Own - an updated tribute to my father, 100 years on from his birth.

March 10^th, 2020, marks the centenary of the birth of my late father Arthur John Long. He died at the age of 86 in December 2006, so sadly didn’t live to see his 100^th birthday. I am re-editing and re-posting this tribute on what would have been the eve of that birthday - a landmark worthy of some reflection.

My father in 1983, at about the age I am now

To the wider world, Arthur was a much loved and respected elder statesman of the Unitarian movement, and a leading expert on the history of liberal Christian theology, but to me and my brother Chris, he was Dad. To my wife Sue and Chris’s wife Michelle, he was a caring father-in-law Arthur and to his four grandchildren, Felicity, Nick, Rosie and Natalie he was just Grandpa. However, what struck me at the time of his death, when I read and heard public tributes to him, is that unlike many people with a public persona,  the public and the private man were no different. And as the years roll on, I am increasingly aware of the extent to which I inherited from  him far more than a striking physical resemblance.

Born in 1920, Arthur was one of four children of the Revd. Walter Long - my grandpa -  himself an eminent Unitarian minister in London, who was President of the General Assembly of Unitarian and Free Christian Churches in 1963. Walter was a teetotal, firebrand socialist nonconformist of the old school, and having recently uncovered some hitherto forgotten documents and archives relating to his life and work, I am even more struck by his work and achievements. Walter was in effect a social worker in a dog collar, whose work for the people, especially the children, who attended Bell Street Mission in Marylebone, reflected his values and ideals. Chris and I knew him as a cheery, benign old man, like a cliché grandad from a Ladybird book - he looked about 90 when he was around 50 - but a glance at the press cuttings from his life reveal a man of deep commitment to improving the lot of the poor through putting Christian principles into action. Accounts of the holidays he and his wife Amy ran for deprived London children at Bruce Cottage in Bognor Regis are a joy to read.

Last year, it was a huge pleasure and privilege to organise a family reunion to celebrate the centenary of Walter and Amy’s marriage, at which we gathered virtually all their surviving descendants and their families, including their surviving son, Peter. I wrote an account of it here:

https://adrianlong3.blogspot.com/2019/04/never-forget-where-youve-come-here-from.html

Arthur added to these qualities and values which he inherited from his father the scholarly mind and conciliatory instincts which made him a lifelong ecumenist, who strove throughout his long and distinguished career to bridge the gap between Unitarianism’s more radical tendencies and the mainstream Christian churches. The Unitarian Christian Association is very much part of his legacy.

Here, briefly, are the factual details of his life: Arthur was born in Loughborough, while his father was Minister to that congregation, but he grew up in Wembley, living much of his childhood in the shadow of the old Empire Stadium. I remember seeing those towering white walls over the railway line which ran past the end of their garden. He was the first of four children, with two younger brothers, Ronald and Peter, and a younger sister, Joyce.

Arthur was educated at Wembley County School and won a place at Exeter College, Oxford in the days when county grammar school boys were still a rarity at Oxford Colleges. Although he himself always admitted to having felt somewhat out of place at Oxford, he in fact blazed a trail at Exeter College which was followed by his younger brother, and then by his son (myself), granddaughter and two nephews. Few families can claim such broad and prolonged association with a single college.

He trained for the Ministry at Manchester (now Harris-Manchester) College, and took up a Hibbert Scholarship at New College, Edinburgh, then served long and effective ministries in London and Lancashire. His lengthy ministry at Unity Church, Bolton coincided with a period of great social and economic upheaval and hardship in the Lancashire cotton towns, but he kept the church there in its traditional place at the heart of the community. In those days in industrial Lancashire, the local church of whatever denomination was in effect the parish church to those who lived in its shadow and that of the Lowryesque cotton mills. We lived our childhood in a real-life Lowry painting.

The locals just thought of him as “the Vicar”, and Chris and I were known as “the Vicar’s boys”, especially if we did anything naughty - heinous crimes like riding a go-kart down the street in a reckless manner.

He may not have been the Vicar as such, but our childhood was awash with vicars, priests and nuns. Always an enthusiast for ecumenism (an “ecumaniac”, to use a term coined at his funeral by one of his protégés Revd. Jeff Gould), Arthur was for thirteen years Secretary of the Bolton Council of Churches, in which role he enjoyed warm and active relationships with all shades of the Christian community in Bolton. Our childhood memories are of incessantly answering the door or the telephone to clergy of all shades of Christianity, and it was only in later life that I came to realise how unusual and precious such inter-denominational cooperation was.

Whilst ministering among the people of a working class Lancashire community, presiding over a church which was very much a social centre as well as a place of worship, he was like his father a social worker in a very poor part of the town. He wrote and produced an annual pantomime, starring members of the congregation - very much a highlight of the social calendar, and loved organising social events. He once organised a complete “mock wedding”, at which members of the congregation took all the parts of a traditional wedding, took vows in church, then enjoyed a reception and party in the Church Hall. He took the congregation away for a fun weekend at Hucklow, and in every way cared deeply about their welfare. More than once, he interrupted family holidays to return home to conduct a funeral of a loyal member of the congregation.

Yet he was also an awesomely erudite thinker and writer. Arthur developed a career in theological academia alongside his day job in Bolton, firstly as a tutor, then as Principal of Unitarian College, Manchester, a training college for the Unitarian Ministry. In this role, which he took up in 1975, his ecumenical instincts again came to the fore when he brought the College into the inter-denominational Northern Federation for Training in Ministry in 1984. Through his broad outlook, he brought a Unitarian perspective into the wider theological community, and was appointed as an Honorary Lecturer in the Department of Religions and Theology at Manchester University.

He enjoyed the academic phase of his career every bit as much as he has enjoyed ministering to working class folk in Bolton. He was honoured with the Presidency of the General Assembly of Unitarian and Free Christian Churches in 1983, twenty years after his father had held the same post, and in 1995, he was awarded a Doctor of Theology degree by the United Protestant Theological Institute at Kolozsvar (Cluj) in Romania.

His warm relations with the flourishing Unitarian communities of Eastern Europe predated the fall of Communism, and were another manifestation of his outward-looking and tolerant approach: he drove, would you believe, to Romania in his little Vauxhall Chevette in 1979 for a conference and preaching engagement. Lord knows what those surly border guards must have thought of the Englishman in a dog collar driving through the then very real Iron Curtain.

Arthur loved writing and public speaking. In this respect I have followed in his footsteps. He was a prolific writer of sermons and articles, whose style always mixed scholarly erudition with down-to-earth wit. He was founding Editor of the Unitarian Christian Herald and a regular contributor to The Inquirer and Faith and Freedom. He continued to preach well into his eighties, and conducted services until shortly before his death. As late as 2004, he appeared twice in ITV’s now sadly defunct “My Favourite Hymns”, and took great delight in the venue for filming being the magnificent St Walburga’s Roman Catholic Church in Preston.

But what was he like as a private person, as a family man? Well, as I said earlier, really no different! He was absolutely dedicated to his family, and doted on his wife, our mother Margaret, whom he met when she acted as temporary organist at Stamford Street Chapel, where he was Minister. The story goes that she reluctantly agreed to stand in for her then boyfriend, who was organist there, when he went on holiday. The said boyfriend must have regretted that request!

Arthur was a real softie, a true romantic - a quality I have singularly failed to inherit! He would write acrostic love poems to his wife for every wedding anniversary and birthday. Margaret was rather more cynical and hard-headed, and I never saw any reciprocal poetry! He illustrated Christmas cakes with poetry and words from Scripture written in icing, and his tastes in music, theatre and literature were as catholic as his theology. Indeed, I always feel he was somewhat constrained by his wife’s refined and narrow tastes in the arts, especially music. She abhorred popular music in any form, which must have been difficult as that art form blossomed in the swinging sixties. He secretly rather liked it, and I remember her horror when he preached a sermon extolling the lyrics and music of Elvis Presley’s The Wonder of You when it topped the singles chart in 1970. I remember him furtively asking me and Chris to take a recording of it off the radio onto the reel-to-reel tape recorder that he had bought for use in church.

So perhaps it is fitting that I conclude with some words not from the Scriptures, not from one of Shakespeare’s sonnets, but from David Gates, of the 70s soft-rock band Bread. His song Everything I Own is a lament for his father, who died young, but it has always spoken to me about Arthur’s paternal love which was so closely aligned to his love and concern for those to whom he ministered:

You taught me how to love

What it's of, what it's of

You never said too much

But still you showed the way

And I knew from watching you.

God bless him.

Never forget where you've come here from: 100 years of the Long Family

As those readers who follow my Twitter or Facebook accounts will perhaps have seen, I organised and hosted a remarkable family reunion on the Easter Sunday just gone, gathering almost all the living descendants of my late grandparents, Rev'd Walter Long and Amy Denby, who were married exactly 100 years previously, on April 19th 1919. There were forty people present, aged 1 to 87, representing four generations of Longs - here we all are:-

The event, held at Exeter College Oxford (where five descendants, including myself, have studied as undergraduates) was a great success, and although very much a private affair of interest mainly to those attending, there has been much interest and comment from others, such that I thought it worth publishing what I said on Sunday as a blog post. Those who attended can then read what was said, and others, if interested, can learn something about an ordinary couple from East London who lived good lives and raised a lovely family.

So here is my speech, with a few photos to add some context:-

First and foremost, thank you for being here! Forty people from four generations; one child of the marriage, all nine grandchildren, eighteen great grandchildren and two great-great grandchildren. Eight of us here today were present on a similarly sunny day in April 1969 in Warwick for the Golden Wedding. Here we are back in 1969...

And here's the same crew 50 years later, attempting to recreate that image, although changes in height made it difficult...

There are photos of that which most of you will have seen, and I have just about got over my resentment towards my late mother, who made me and Chris dress formally on a day when everyone else of our generation looked cool and casual. I NEVER wore that wretched short trouser suit again. But it was a lovely day, still quite clear in my mind and it is a huge pleasure to see this still growing family gathered here today, fifty years on.

Diabuddies and first cousins-once-removed
 - me and Elinor 

Let me share a story of how today’s event came to happen: it all started back in February 2018 with a meeting in a noisy bar off Fleet Street in London between me and Elinor Crawley, my first cousin once removed. How we came to be in that bar is a long story relating to she and I being members of a small and exclusive club which we neither of us chose to join - people with Type 1 diabetes. 

In telling Elinor a bit about our shared family history, it dawned upon us that we were approaching the centenary of Walter and Amy’s marriage. The following day, I had arranged to visit my cousin Miranda for lunch and so I shared our realisation about the upcoming centenary with her, and we decided it was an event worth marking with a family reunion.

So here we are, and in case I forget, let me thank Elinor and Miranda for their support, and of course my wife Sue for all the work she has done to help make today happen.

I have been doing quite a lot of digging and researching about Walter and Amy in recent years: I guess it’s an age thing, but with a bit more time on my hands, the stimulus of the TV programme Who do you think you Are? and the ease of online research, it quickly becomes absorbing and enlightening to learn about your family’s heritage.

And although of course we’re all biased, I have to say that by any standards, Walter and Amy were an extraordinary couple, whose story, and that of the generations since, tells us much about the social and economic history of the past century or so.

Most people these days like to claim authentic heritage from the wrong side of the tracks: like the four Yorkshiremen in the famous Monty Python sketch, many folk are fond of talking down their own privilege and talking up their working class, poverty-stricken credentials.

Well rest assured, Amy Denby and Walter Long have impeccable salt-of-the-earth credentials. He was certainly no champagne socialist (he was famously t-total for a start!).They were both born in London’s East End, on the same street in Bermondsey, she one of four children of a tie cutter, he one of twelve children of a wire worker.

Both families had in the previous generation come to London from the countryside: by far the most eye-catching ancestor is Walter’s grandfather, the splendidly named, and even more splendidly bewhiskered Amos Buckle, a shepherd from Wescott in Buckinghamshire. Amos was one of the first recipients of the newly introduced old age pension in 1908 - I have a picture of that event. 28 of us here today are descended from this gentleman, and I for one am very proud to say so. There are 100s of more distant cousins out there if you look on Ancestry.

Amos Buckle

But back to Walter and Amy: that they both knew the harsh realities of working class life in the early twentieth century there can be no doubt. Yet both individually and as a couple, they transcended their humble beginnings without ever forgetting them and through their long and successful marriage fostered the diverse inheritance which is met here today.

They were married on Easter Saturday 1919, at the College Chapel in Stepney Green, East London. 

The Baptist College, Stepney Green (Chapel on right)

The college and its chapel have long since been demolished, but the portal still exists, enjoying listed status yet now totally overgrown with weeds, standing behind security fencing alongside one of the key intersections on the still unfinished Crossrail line. I visited the site a few weeks ago, and found it weird to think I was standing where, 100 years ago, that newly married couple had stood. Sadly, there appears to be no photo in existence of their wedding.

The College Chapel Portal

However, I do have in my possession several boxes of papers and photographs relating to Walter in particular: far less material relating to Amy, but I guess that’s the way it was in that generation - she was very much the supportive Minister’s wife, often alongside him or in the background on photos, yet those of us who remember her as a mother or grandmother will I’m sure share my view of her as a pillar of wisdom and unshakeable good humour.

Walter Long in his prime

Walter’s life is by contrast documented in great detail, and he was truly a remarkable man: not so much a minister of religion, but rather a social worker in a dog collar. Studious and self-educated, gregarious, affable yet slightly stern when necessary, he touched the lives of hundreds whilst raising a family which has gone on to reflect so many of the diverse values which he espoused throughout his long life.

Mr Pastry

His work for almost forty years with the Bell Street Mission in London’s then severely deprived Marylebone district is what stands out, and only the other day I found a very recent entry on an internet a page of memories of Bell Street which fondly recalled Mr Long the Minister, whom the children nicknamed Mr Pastry - do a google image search and you’ll see why - he bore a strong resemblance to the comic character of that name.

The holiday home in Bognor Regis which he set up and helped build took inner city children for seaside holidays of which some fabulous ciné footage survives and is on a DVD I have made. He was a Labour councillor on Marylebone Council for many years, and the Crematorium there in which both his and Amy’s funeral were held was very much his project.

He espoused many causes: unitarian christianity of course, but also pacifism, internationalism, abstinence from alcohol, animal rights and above all a very pragmatic brand of socialism.

"Trust Baldwin"
- Walter didn't

Beyond the facts there are many stories, no doubt exaggerated and improved over time, on which Chris and I were brought up. Among our favourites are that he graffitied a famous Conservative poster from the 1929 election campaign changing it from “trust Baldwin, he will steer you to safety” to “trust Baldwin he will steer you onto the rocks”; or that he heckled Ramsay McDonald, whom he saw as a traitor to the Labour Movement, at a rally to such an extent that a flustered McDonald turned to an aide and said “Who is this man?”

He was a man of principles, yet was also by all accounts a skilled operator who knew how to make friends wherever it was expedient to do so. He befriended engine drivers and persuaded them to make an extra stop behind his allotment to save him the long walk to Wembley Park station; he was skilled at getting extra petrol coupons during the War, on the grounds that he needed them for his essential pastoral work.

But the best story, which I so hope is true is from a visit to Greece which he made in the early 1930s: on presenting his passport at customs in Athens, the official inspecting it looked concerned on reading the page labelled occupation, disappearing into a back office then re-appearing with his superior, who pointed at the passport and said in broken English:

 “You Minister of Religion?

“Yes”, replied Walter.

“McDonald’s government?”

“Yes”, replied Walter, still unaware of what the problem was and thinking that the official was just showing off his awareness of British politics.

“One moment please” said the senior official, asking Walter to sit down.

A short time later, a chauffeured limousine appeared and Walter was invited to sit in it, accompanied by the official, and it was only as he was taken on a guided tour of the city’s sights and churches that he realised that the Greek officials had assumed that he was the government minister responsible for religion. Apparently, he didn’t let on, claiming he didn’t want to cause further embarrassment, yet enjoying his free trip round the sights.

If that sounds a bit dishonest he was also disarmingly honest: he loved his cars, and was more than once stopped for speeding: on one occasion, quite late in his life, he was stopped in a 30 MPH zone by a policeman who asked the elderly clergyman in his Morris 1100.

“Would you mind telling me how fast you were going sir?”, asked the officer, expecting the usual attempt to get away with it by saying “about 33 MPH”. Instead of which, Walter, gloriously oblivious to the speed limit said “Ooooh, fifty or sixty at least!". The cop was so nonplussed by such honesty that he let him off with a friendly warning, especially when told that the reason for speeding was that he was on the way to a hospital visit.

Amy, Ronald, Walter, Arthur - 1921

So yes, a top man, a top couple. It is right and proper that we are all meeting here today to celebrate their lives. And lest I dwell too much on stories, possibly apocryphal, of what he got up to, let us above all remember today a loving couple who raised four children against a background of troubled times, and who embraced the post-war world with grace and enthusiasm, being for us loving and generous-minded grandparents.

Perhaps we should be toasting their memory with a non-alcoholic drink, but let’s quietly forget that for today. 

Please join me in raising a glass to 100 years of a good, long story and in particular let’s drink to those 1919 newlyweds - Walter and Amy.

And now can I ask their surviving son Peter, as the oldest here present, to cut the cake which Miranda has commissioned for today's celebration:

Please take away your cake and also your wedding-style favour: this contains a piece of paper impregnated with wildflower seeds for you to plant, and some words, almost certainly written by Walter himself, which were read at his funeral:

Unto my friends I give my thought.

Unto my God, my soul. 

Unto my foes I give my love. 

These are of life the whole.

Nay, there is something - a trifle - left: 

Who shall receive this dower? 

See, earth-mother, a handful of dust! 

Turn it into a flower!

What lovely words! I hope we will all go home with fond memories and a renewed sense if togetherness.

I hope family members will enjoy reading the words that they heard on Sunday, and others may find something of interest. If you're a reader of my blog posts, you will know that I always give them a title from a song and post a link to it. This one gets it's title from a Take That classic from their early years - Never forget where you've come here from. 

https://youtu.be/uDe2tvD_nCo

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.

We Are(n't) Family

You know sometimes there are incidents whose significance doesn’t dawn on you until you reflect on them in a quiet place on your own some time later?

Well I had one of those this last Friday, April 27^th 2018.

I had enjoyed a lovely evening of food and chatter with three friends at a restaurant near Victoria Station in London. There was me, Ellie, Steph and Izzy. We had spent the evening eating, drinking and chatting - nay gossiping - and laughing, and the time had come to pay the bill. Cue further laughter and chit-chat as we tried to work out who had eaten and drunk what. Our waitress for the evening had done a good job in striking the balance between efficient service and friendly banter, without being too intrusive, but when we were about to leave she couldn’t resist the temptation to ask: what was the connection between the four of us?

I guess most groups in a restaurant on a Friday evening are easy to read - intimate couples, celebrating families, boisterous work colleagues - but she clearly couldn’t work us out. “Have a guess”, I said, and her unconvincing guesses included father and three daughters, a boss and his employees: both basically saying “old guy with young women” But she had to give up, and was then visibly struck when we said that we were just friends from different parts of the country who share a medical condition.

All very obvious really, but the more I think about it the more it serves as yet another reminder of what a precious thing the diabetes peer support network known as the #GBDOC is. To a muggle like that waitress, it is clearly puzzling to see the likes of me socialising with the likes of Ellie, Steph and Izzy. Whereas to us, it’s just, well, what we do.

And of course that was just the start of it. The four of us were gathering for a weekend centred around the third TADtalk event, a day-long meet-up of people with diabetes organised by an endocrinologist from Portsmouth who happens to believe - passionately - in the power of connectivity among those who share a condition and those who help them to live well with it.

I, and many others have written and spoken about the power of peer support before, so in that sense this post is repetition of, or at least a variation on, a familiar theme. However, every time I meet with my fellow diabetics in groups large or small, every time I exchange easy banter with them on Twitter, I am reminded just how precious this phenomenon has become to me and to many others.

I will not describe the TADtalk event in detail, as others have already done it better than I can in tweets, or for example in this post by the organiser, but I will just remind myself and others that I have the good fortune to be part of something very special. As I adjust to retirement from a long career in a people centred job in which I was surrounded and kept young at heart by some wonderful young people, I now find myself surrounded - often virtually, but sometimes literally – by dozens of friends who have nothing else in common other than a pesky, 24/7, potentially life threatening medical condition. We are young and not-so-young, female and male, rich and poor, shy and extrovert, gay and straight, black and white, religious and secular. In short, we are people. The thing about Type One diabetes is it does not discriminate. So neither do we.

And the point is really this: with most of these people, I hardly ever talk about diabetes these days. Of course if the need and occasion arises, they are a wonderful, wise and well-informed source of information and support about every aspect of living with diabetes. But above all, we are just friends who chat, laugh and cry together like friends do. Or perhaps more accurately, like families do. Because for me, that is how the GBDOC feels, and I make no apologies if this sounds cheesy in the afterglow of such a fun weekend. We are indeed an extended family, and like any family we sometimes fall out, we sometimes bicker, but in the end we know that blood sugar is thicker than water.

As Sister Sledge put it: We Are Family, and I for one am grateful that I have "got all my sisters, brothers, aunts, uncles, cousins and whoever with me."

This post comes with my thanks and greetings to all these #FacesOfGBDoc both those who were present last weekend and those who were unable to join in. Here they are - an update to this picture will be posted on Twitter when I have added all later additions to this picture:

Reflections of My Life: Growing old with Type One Diabetes

Reflections of My Life. This sounds a bit personal and heavy, but it doesn’t signify any particular change of mind-set.

It’s just that I’ve perhaps had more time for thinking in recent months, and together with a few unrelated events and changes in my life, it’s led to a blog post forming in my mind. As always, I’ve given it a title from a song, and this one is a real favourite of mine. It’s a track by Marmalade, a somewhat under-rated Scottish band who spanned the late 60s into early 70s with a series of songs that saw them grow from beginnings in fairly bland 60s “pop” into a versatile, musically and lyrically literate outfit. This one is a real gem from early 1970, a song as wistfully reflective as the title suggests.

So what’s this post all about? Well, I guess it’s about growing old, and in particular growing old with diabetes. And why now?

Well, I’ve been doing a lot of digging recently.

There’s been a lot of literal digging, as we have just moved into a new home with a very large, undeveloped garden. I’ve been out in all weathers, patiently and methodically creating two long, undulating borders along the sides of what was a rectangular lawn. It’s the sort of task I love. Easily defined, constructive and with a visible and measurable outcome, it gives me fresh air, exercise, stable blood sugar and lots of thinking time. I have also been delighted by the extent to which people on twitter have enjoyed following the progress of my work. Simple pleasures.

My Growing Border

Then there’s been some metaphorical digging as I make similarly slow but equally steady and rewarding progress indoors, uncovering the full extent of my family, past and present. I’ve been building a family tree on Ancestry for several years now, tracing back my own and my wife’s forebears, but a particular meet-up with cousins from two generations on my father’s side has led me to propose and organise a gathering to celebrate the centenary of my paternal grandparents’ wedding, in April 2019. This has re-connected me with 8 first cousins with whom I had been in minimal contact, and to hear about their lives and their families has been a great pleasure and also a reminder that we are all growing older together. I am, with the help of my cousins, planning quite a party.

So I was thinking about all this whilst digging away at my lawn, when at some point in recent days I saw this post from the wonderful @LisWarren, one of the many great friends that I’ve made in recent years though the online diabetes community:

With her 50+ years of living with Type One and tireless advocacy work, Lis is, along with @PeteDaviesType1 and @apatrickmooney a shining reminder to all of us that diabetes is no barrier to a long and healthy life, but she is right to draw attention to the fact that the very success of treatment and care for Type One diabetes since the discovery of insulin therapy in 1924 inevitably leads to there being a growing cohort of older people with Type One. The discredited epithet “juvenile” for Type One still persists enough to sometimes give the impression that it is a young peoples’ condition, which it of course isn’t. And therein lies a challenge for all of us who live with diabetes. We’re very good at self-care, but how good will be at it in old age?

My own “reflections of my life” in recent months inevitably include an awareness of the ageing process, and whilst I am not and never have been, one to dwell on doom and gloom, I nevertheless cannot help but wonder what it will be like to live with Type One at an advanced age.

My own parents both enjoyed good physical health and led active lives well into old age, but if one fear does haunt me it is that of succumbing to the Alzheimer’s Disease which turned my late mother, once a lively, witty and energetic schoolteacher, into first a grotesque caricature of her former self and then an unrecognisable and unrecognising shell of a human being, whose death at 85 in 2013 was a merciful release both for her and her family. I was not a blogger at the time of her decline and death, but it is a story that I may tell on here one day: to end up as utterly helpless and unaware in the final years of life as she did, and to become totally dependent upon others for diabetes management is a very sobering thought for me.

As I wrote in this recent post about technology and diabetes, I accept that I am too old to have any prospect of being cured of Type One, and I also accept that whilst the health of older people is much better than it was even in the recent past, I will over the years that I have left become weaker, frailer, more forgetful, less capable and so more dependent upon others.

But let this not end on a gloomy note. I am very well thank you, busy creating a garden, building a family tree, collecting and posting photos for daft #GBDOC collages and organising events for my family and others. And many of my friends, especially those in the diabetes community, are a lot younger than me. So I am a long way, I hope, from being “put out to grass”.

And at the risk of repeating the conclusion from that recent post, I have great faith in technology to help me both with my life in general and with diabetes management. I feel blessed to be young enough to have embraced the revolutionary changes in ICT that have swept through our lives over the past couple of decades. It is easy to think of smartphone addiction, social media and the like as a young peoples’ thing, but these gadgets and gizmos which we all love so much will be a massive boon in old age that my parents’ generation have in many cases missed out on. I imagine the care homes of the distant future being full of old folk, still sitting around on chairs as they do today, but all clutching a tablet or smartphone and fully engaged with and enjoying stuff like silly videos on You Tube, gifs and viral posts on social media. And hopefully, they will be a lot happier for it. Technology and old age certainly do mix.

For those with diabetes, is it too much to ask that access to technology - pumps, CGMs, closed loops and the like should perhaps be regarded less as “just for younger PWD” and more as a priority for those of more advanced years.

Now, back to the digging….