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.
