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.

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….

Rhinestone Cowboy: a tribute to Glen Campbell

#RIPGlenCampbell. Another musical great has gone to join the celestial band. No shock and disbelief this time: the deaths of many musical icons, however predictable they were with the benefit of hindsight, often take us by surprise. Elvis, John Lennon, Michael Jackson, David Bowie, Amy Winehouse, Prince and George Michael, to name but a few, all provoked just such a reaction. But Glen Campbell's demise, at the relatively young age of 81, was well trailed, not least by the man himself. He announced that he was suffering from Alzheimer's in 2011 and even joked about it in a farewell tour. His most recent single and album were entitled Adios – so nobody could claim to be as startled as they were by, for example, the news of George Michael’s sudden passing late on Christmas Day last year.

Yet as always, the death of a musical icon leads to a familiar routine of RIP hashtags, a spike in downloads and on-air and printed tributes. And I plead guilty to indulging in all of the above.

And once again, I find myself asking the same question: is he suddenly brilliant because he's dead, or are the tributes justified? For me, it's another no-brainer: Glen Campbell was very good indeed, and I've spent today trying to pin down just what was so special about him.

Well first of all, he was a very talented session instrumentalist. I learned today that he played guitar for, among others, the Righteous Brothers, the Beach Boys, Frank Sinatra and the Monkees. Anyone who played on Strangers in the Night and Daydream Believer already deserves a place in any hall of fame from 60s music. Timeless classics both. Try listening to Daydream Believer and not feeling better.

But Glen Campbell will be remembered above all as a vocalist, and in that he has few peers. The sheer range of his voice is awesome, but above all it is the emotion that he put into a song that marked him out. Story songs like By the Time I get to Phoenix, Wichita Lineman, and Dreams of the Everyday Housewife are utterly convincing in their expressiveness, much like a great actor has us believe that s/he is actually going through what happens in the play or film. By the Time I get to Phoenix is about a man sneakily leaving his lover in a cowardly manner, yet we feel sorry for him as much as her. The Wichita Lineman evokes our sympathy too, not only for his dedication to a tough and lonely job, but also for his sense of loneliness, whilst the eponymous unliberated everyday housewife is at the same time pathetic and heroic, yet so believable, not least in its 1960s context.

But for real emotion, try Honey Come Back. This came out in early summer of 1970, the carefree summer of songs like Mungo Jerry's anthem to drink-driving, In the Summertime, one--hit-wonder Mr Bloe's Groovin’ with Mr Bloe, and the 1970 World Cup in Mexico with its No 1 hit for Bobby Moore, the Charlton Brothers, Gordon Banks Martin Peters & co singing Back Home. I was 12 years old that summer, in my first year at secondary school, and had no experience of a relationship, let alone a failed one, yet Honey Come Back broke my heart, as this rejected nice guy pleaded with his lover not to fall for the charms of a city slicker smoothie. The spoken verses could easily be dismissed as unbearably cheesy, but it works. Glen Campbell could act as well as sing, as proved by his role alongside John Wayne in True Grit. Also desperately sad is Reason to Believe, another tale of rejection and undeserved forgiveness, and many other songs, including those recorded just recently, reveal great depth of emotion.

Yet perhaps what as a child and teenager appealed to me most about Campbell was the way he brought America into our lives, particularly with the help of master songsmith Jimmy Webb. By the Time I get to Phoenix taught me US geography. Wichita Lineman taught me about a job I'd never heard of. Galveston, the most subtle of anti-war songs, taught me more about the Vietnam War, whilst his best-known legacy, Rhinestone Cowboy, just oozes Americana: sidewalks, hustles, subway tokens, dollars, star-spangled rodeos, Broadway, rhinestones and cowboys, sung about by a square-jawed clean-cut nice guy in jeans and a check shirt.

A sad reminder of a time when the USA was a place whose culture and values we looked up to and secretly aspired to. Nowadays that is not quite so easy to do.

The fact that Campbell died of Alzheimer's disease adds to the poignancy for me, having seen my own mother physically and mentally whither away at a similar age. We have good reason to be grateful to him for leaving such an enduring musical legacy. 

If you’re too young to know his work, click on some of the links. Or access a Greatest Hits playlist here.

PS: my wife has just read this post, and points out, rightly, that another significant thing about Glen Campbell is that even she likes his music. And my wife is, by her own admission, famously ignorant of and immune to the charms of nearly all popular music.