Saturday, 25 January 2014

Dementia – Can it? Should it? Will it? Be defined as terminal?

Dementia is generally described as either ‘life-limiting’ or ‘life-shortening’, either way, the illness or condition, is ‘life-changing’!

We often hear a lot about people sustaining life-changing injuries, but we rarely hear about dementia being described in such a way.

My Mother has vascular dementia, although she is, admittedly, now 87. Whichever way you look at it - and it is something I have to accept, she is now of such an age, that end of life is never far away - her younger brother, by comparison, died some years ago, as a result of Alzheimer’s.

Mum and younger brother Gordon, before he was diagnosed with Alzheimer's

Taking into account, the apparent historical longevity, of some members of that side of the family - their Great Grandmother lived until her late eighties, in the nineteenth century, when life expectancy, especially among poor agricultural working families, was considerably less than today - had my Uncle not contracted Alzheimer’s, he would probably still be alive today!

So, we once more address that simple question – “is dementia terminal?”

Numerous medical professionals would be quick to point out, that someone rarely dies, as a direct result of dementia. Few death certificates record the death of a dementia sufferer (I have deliberately used the term sufferer in this case), as dementia. There are usually other factors involved, in many cases, pneumonia. Therefore, it is very difficult to obtain statistics for deaths, directly or indirectly, related to dementia. Yet, pneumonia often occurs because the person concerned is bedridden and immobile, due to dementia. Although the primary cause of death may well be pneumonia, the primary reason they contracted pneumonia, was dementia!

Dementia, whichever way we look at it, ultimately leads to death, as does life itself. Should dementia be classified as terminal? Or, is it a case of, ‘well that’s what happens when a lot of people get older’. But is it? There are many cases of early onset dementia, sometimes affecting people in their twenties! That is not an older person’s illness!

Dementia, in its many various, many still to be defined, forms, can strike at any point in our lives. That we perceive dementia as being an older person’s illness - needs to be addressed, and corrected.
Dementia is, life-limiting, life-shortening, and life-changing, and in all cases, it is ultimately terminal. Dementia is in effect, a death sentence. There is only one guaranteed outcome.

Cancer was, for many years, regarded as a terminal illness, and some forms still are, many, however, are now survivable. We have yet to reach that stage with dementia. Dementia is, and will be for the foreseeable future, terminal. There is no cure, and the ultimate outcome, is death.

It is time to accept, take our heads out of the sand, and realise, that dementia is, at present, a terminal illness. There is no way out, there is no cure. Those with dementia may well live for many years, but the illness will, eventually, kill them.

Cancer and heart disease, cost nations billions of pounds/dollars, dementia alone, costs even more! Yet, funding into research for a cure, or at the very least a life extending/improving solution is, but a mere fraction of that, for the other major illnesses. Time for change!

I’d like to dedicate this post to the memory of the elderly residents of Residence du Havre, L'Isle-Verte, Quebec, Canada, a care home for seniors, of whom 32 are feared to have perished in the terrible fire that occurred there on 23 January 2014. My thoughts and prayers go out to their families, at this very sad and difficult time.

Sunday, 12 January 2014

Dementia - Mum’s life journey...

My Mum Jean, is now in the later stages of vascular dementia – she’s probably been living with it, since around 2008/9, although diagnosis was not made until 2011.

As the end of her life draws ever closer, I have decided to put down in words, everything I know about my mother, and her life – a sometimes tragic, sometimes exciting, and definitely incredibly varied, life.

This, as you can imagine, is a short (but not that short) resume of Mum’s life, to date...

January 20 1927...

Mum was born in 1927, near Oldham, on the Yorkshire/Lancashire border – she was born on the Yorkshire side, and has remained proudly Yorkshire all her life. At the time of her birth, she had an older brother, John. They were later to be joined by two more brothers, Edward and Gordon. Unfortunately, Edward died as a baby, and John – who had a hole in his heart – died before his eighth birthday.

Mum's older brother John

Mum’s Dad John, came from Glasgow, whilst her Mum, Laurina (Rena) was born in Haworth, West Yorkshire.  Rena was a small, just five feet tall, feisty and somewhat independent lady – much like, from what I can gather, her own mother Maria. As soon as she was old enough, Rena moved from Yorkshire, to Glasgow, where she met John. John was a journeyman (freelance) printer, and as a result, the family moved several times, as John sought more lucrative work in different towns.

John, Rena, Jean and Gordon eventually returned to John’s home town of Glasgow, where he continued to work as a printer. In 1939, on the eve of World War Two, John died of cancer in Glasgow Royal Infirmary – Mum, was just twelve years old.

It was at some point during this time, that Mum suffered from rheumatic fever. Fortunately, her doctor was very forward looking, employing a number of then pioneering treatments that helped Mum recover, with few long-term effects, apart from a slightly enlarged heart – something that would cause a few problems later in life.

World War Two...

After the outbreak of war, and with the planned evacuation of children from the city of Glasgow, Rena decided to return home to Yorkshire. She and the children moved to, what was then a small town, near Bradford, called Cullingworth, in the heart of Yorkshire’s weaving industry. Rena was able to support her two surviving children, by working in one of the town’s mills.

Gran Rena, at home in Cullingworth

They stayed in Cullingworth for the duration of the war, and Rena was to spend the rest of her life there, until she died of a coronary thrombosis in 1962. Rena had also developed Type 2 Diabetes, later in life, a condition that would also affect Mum many years later.

Mum - front right - publicity shot, for one of several plays in which she performed

As a child, Mum had dance lessons, and became quite a competent ballet dancer, although this was never pursued as a career. In her early twenties, she took up amateur dramatics joining a local repertory society. By this time, she was also working in the accounts department of an engineering company in Keighley.

Mum outside the home, in Cullingworth, she shared with her Mum and brother Gordon

Into the 1950s – I arrive, at some point!

By the mid 1950s, Mum had met her future husband, my Dad, Charles, and they married in Cullingworth Parish Church in November 1955. Charles was a Sergeant in the Light Infantry, having served in India and Burma during the war, Austria just after the war, and Malaya, during the Malayan Emergency, in the early 1950s. He'd originally joined the Royal Navy, but not long afterwards, transferred to the army.

Dad in the Royal Navy - 1943-44
Dad(right) in India - 1944-47

Dad (right) in Malaya - 1952-55

Mum and Dad's Wedding, November 1955

After they were married, they moved to Plymouth, where Dad was stationed. Their first home together was an army married quarter in Seaton Barracks. It was in this very house, where just over a year later, in April 1957, I was born.

Mum and Dad (right) with friends - Sgt's Mess, Plymouth

Not long after that, Dad was posted to Warminster in Wiltshire. This is the first place I can remember from my childhood days - happy carefree days, with my doting Mum, and loving Dad.

Knook Camp, Warminster

It may seem strange to some, that I can remember things from so early in my life, but, being the son of a soldier, who was posted to a different place every two years, I am able to break my life into small time packages, allowing me to recall where I was, in relation to a particular year, from the very early years of my life.


In 1959, Dad was posted to Osnabruck, in Germany. We were to stay there until late 1961 – during this time, I went to my first Kindergarten – it was also during this time, that the Berlin Wall was erected. This was to become a significant factor in our lives, just a few years later. Mum was a typical army wife, looking after the home, me, and meeting up with other army wives, many of whom were to become some of her lifelong friends.

Mum and me at home in Osnabruck - Dad was behind the camera, as ususal

Ready for Kindergarten in Osnabruck


At the end of 1961, we briefly returned to England, in preparation for Dad’s next posting to Gibraltar. We in fact returned to Plymouth, where we boarded a ship, the MV Devonshire, to make the journey from England, across the Bay of Biscay, along the coast of Portugal and finally to Gibraltar. For a child, the journey was exciting. We were on board with other families from Dad’s regiment, so we all knew each other. The children played together, either on deck, or in the ship’s nursery, whilst in the evening, the Mums and Dads socialised in the ship’s restaurant and bar – in typical army fashion.

MV Devonshire

Upon arrival in Gibraltar, Mum, Dad and I were billeted in one of the old army quarters at Flat Bastion. The views across the town and harbour were stunning, and we could watch ships, both naval and civilian cruise ships sailing in and out.

The view from our first flat in Gibraltar

The same could not be said about our accommodation. The Victorian block was built over two stories, with flats on both levels, the upper flats having an open walkway at the front. The building was in a poor state of repair, and infested with cockroaches and mice. The bathroom was at the back, accessed via the small back yard, and the rear of the yard was a sheer cliff-face.

Mum puts her foot down!

Mum, now pregnant again, decided that this was no place to bring up her son, and certainly not a place for her yet to be born baby. She took the opportunity to confront the Regimental Quarter Master Sergeant, who also happened to be a good friend, and who remained so for the rest of his life, to demand better accommodation. This was eventually granted, very soon, we moved into a brand new, somewhat brutalist style, concrete block of flats, near Europa Point.

The block of flats on the cliff - our second flat in Gibraltar

I believe - though this is far from certain - that we had a flat on the third floor. The flat consisted of two bedrooms, a large living/dining room, a kitchen with a large, almost open-plan serving hatch – it was the full width of the kitchen, with glass sliding doors, and a bathroom. We also had a large balcony overlooking the sea.

The centre of the block housed staircases, and a covered, well ventilated area for drying washing – as children, we’d use this as a communal play area, when the weather wasn’t so good.

Dad in Tobruk, Libya

It was whilst living here, that Mum developed complications during her pregnancy, her blood pressure was quite high – possibly due to her bout of Rheumatic Fever as a child – and was admitted to the Military Hospital. Dad, at this time, was away with his regiment, training in Tobruk, Libya. He was called home. Until he returned, Mum had to find someone to look after me – unfortunately, the person chosen, though still a good friend wasn’t ideal, so I was very happy when Dad turned up, and took me home. Mum has regretted that choice ever since.

Not long after Dad returned, Mum came out of hospital – without the baby. They had to explain to me, a five year old, that my sister had been still born. Mum had also been advised not to try for anymore children, as the next pregnancy could potentially kill her as well. It must have been devastating for her, though she never showed it.

Our happy life in Gibraltar continued. Mum would often play badminton with friends, at other times, the Mums and children, and at weekends, the Dads, would all go swimming, either in the pool on the beach not far from the flats, or around the other side of the rock, at Catalan Bay.

The beach at Catalan Bay - the sloping structure behind is a water catchment - providing water for the rock's inhabitants

Life in Gib was carefree and, for the most part, sunny. Soon, however, we’d be moving again.

Dad, me and one of the apes on the rock
Dad and me - Alameda Gardens, Gibraltar - in front of the Wellington memorial

First flight in a plane!

In 1963, we flew back to the UK. This was an exciting time, as many of us, Mums and Dads included, hadn’t flown before.

Looking back, the airport at Gibraltar isn’t exactly the best place to get your first taste of flying. Both ends of the runway are formed from artificial reefs reclaimed from the sea, so as the plane taxis for take off, it almost seems to be going into the sea, and by the time it takes off at the other end, it’s almost in the sea again! Add to that, the steep angle needed after take off, to avoid nearby hills and mountains!

View from a gun battery near the top of the rock - one end of the runway juts out into the sea (upper right quadrant)

Cunard Eagle Airlines flight from Gibraltar

Our experience that day was made even more fraught for some. We boarded the plane, then, due to a technical fault, had to return to the terminal building, until it had been fixed. Several hours later, we boarded again – this time, we took off! Our destination? Gatwick airport!

We had a couple of weeks in the UK, before we were due to move on to Dad’s next posting, so we stayed with his sister, my Aunt, and her family. My Uncle at the time owned a Newsagents and Tobacconists, not far from where we now live, in West Sussex. We would often visit them over the years, whenever we returned to the UK.

West Berlin...

Dad’s next posting was to West Berlin, less than two years after the wall had been erected. We lived in a first floor flat in Spandau, not far from the infamous prison – in fact, to get to Dad’s barracks we had to walk right past its electrified perimeter fence.

Spandau Prison

Brooke Barracks, Spandau, West Berlin

Mum busied herself, as the dutiful army housewife, meeting up with other housewives, helping in the Thrift Shop, and generally taking care of me and Dad. As I was now attending Primary School, at RAF Gatow, Mum had more time during the day to do other things, and was beginning to realise, she could go out to work again. Getting me to and from school wasn’t a problem, as there were special army school buses laid on for all the children - complete with supervisors to make sure we behaved.

Mum helping out at the Kindergarten in the barracks

Mum and me, plus two friends - West Berlin 1963

Even though we were surrounded by communist East Germany, life in Berlin was very pleasant, and for us children, no different from anywhere else. For Mum and Dad, army life carried on as normal, Dad occasionally went away on exercises, or schemes as they were then called, whilst at other times, there was plenty of socialising in the Mess. Dad would often take me there on Sundays, before lunch, and would frequently get into trouble for coming back late – almost causing Mum’s precious Sunday roast, to be ruined!

Mum and me near the Olympic stadium in Berlin

One of the things I do remember - with affection - about being in Berlin, was the fact that at Christmas time, it was virtually guaranteed to snow – for the first time, we had genuine white Christmases.


After two years in Berlin, we moved again – this time, Dad was posted away from his regiment, to become a member of the permanent staff with a Territorial Army (TA) unit in Bodmin, Cornwall. We lived in one of two semi-detached houses, belonging to, and just outside the TA centre. At that time, they were the only houses along the lane from the TA centre. Down the lane towards the town, was an old Victorian barracks, which even then had become disused, apart from the HQ building which housed, and still houses the regimental museum of the Duke of Cornwall’s Light Infantry.

Across the lane, was a large - again disused - army camp (Walker Lines), made up of single storey timber built huts.

Walker Lines Camp - with Bodmin's Beacon obelisk in the background
Halcyon days in Cornwall

I went to school in Bodmin, and had to make new friends for the first time. Naturally, as most of the children had spent much of their lives in the town, they were quite fascinated by this new boy, who, by the time he was 8, had travelled to, and lived in another country, they knew little about - apart from what they learned about the war, from their parents – a boy, who had also lived somewhere where it was hot and sunny, for most of the year. Needless to say, making new friends wasn’t too difficult.

Mum, at this point, decided to bite the bullet, and started to work again – with Dad, at the TA centre. She had previous secretarial skills, and was employed to undertake clerk duties, in the main office. She would continue with this type of work, until she took early retirement, many years later.

West Berlin, again!

We spent just eighteen months in Cornwall, before Dad was posted again – back to Berlin. We didn’t rejoin Dad’s regiment, instead we joined one of its sister regiments. Although Dad, like Mum, had been born in Yorkshire, his parent regiment was actually based in Somerset - this posting however, saw him serving with a regiment from his county of birth.

Time for me, and indeed Mum and Dad, to make new friends, again - for me, this wasn’t too difficult - we were all the sons and daughters of soldiers, so we all had plenty in common. Mum and Dad also made new friends, some of whom are still very much that, to this day, even for me.

We lived in Kladow, right at the edge of the British Sector, where it met the border with East Germany. In fact, our flat was only just over half a mile from the border, and my school, was virtually on the edge of no-man’s land!

This was where I went to school - the West Berlin/East German border was just beyond the trees in the background

The border would have looked something like this

Mum first worked in the Adjutant’s office in the same barracks as Dad, but later got a job, a couple of miles down the road at RAF Gatow, where she worked for the RAF Police. An interesting job, by all accounts - she needed security clearance - some RAF personnel were involved in intelligence gathering, and Mum had to type up some quite sensitive reports.

RAF Gatow

At one point during our stay, this job was to give Mum a bit of a shock. To get from West Berlin to West Germany and vice-versa, by car, involved crossing border checkpoints between east and west - on the eastern side, these checkpoints were controlled by the communist authorities. Once, when returning to Berlin, we were stopped at the East German/West Berlin border by the East German authorities – on the wall, inside the checkpoint office, was a collection of photographs – photographs of people in West Berlin of interest to the communists. Mum’s photo was on the wall!

Fortunately, after a short delay, we were allowed through – Mum never forgot that moment.

Border crossing

I remember a lot more of Berlin the second time round, as I was that little bit older. Mum and Dad made new friends, and they often enjoyed long summer evenings, at a local restaurant, where they sat outside enjoying meals of grilled chicken, washed down with copious amounts of alcohol. On a few occasions they stayed virtually all night, watching the sun go down, and then come up again in the morning. German licensing laws were somewhat more liberal than those in the UK! The restaurant was called the Oase, and although it is no longer there, a Schnell Imbiss (snack bar), at the same location, still carries the name.

The Schnell Imbiss that still carries the name of the restaurant Mum and Dad used back in 1967/8

It was whilst we were in Berlin, in 1968, that the Russians sent 200,000 troops and 2,000 tanks into Czechoslovakia, as a result of what became known as the Prague Spring, a move towards liberalization and democratization, by the Czech authorities. This invasion by Warsaw Pact forces, caused considerable concern in West Berlin - Prague was only 174 miles away, and the Czech border a little over 120 miles away.

Northern Ireland...

Soon, we were on the move again! This time, Dad was to re-join his old regiment in Northern Ireland. The year was 1969! A somewhat ubiquitous year in the history of the province, and also in the history of space travel – the troubles began, and man landed on the moon! We experienced both! Our accommodation was a two bedroomed house, in a large army camp, just outside the village of Ballykinler, County Down.

View across to the Mourne Mountains - similar to the one we had from our kitchen window in Ballykinler

The camp, and its extensive training area, was located on the east coast, and included a long stretch of sandy beach, and a vast area of sand-dunes, only accessible by MOD personnel and their families. As a playground for children, it was fantastic.

Beach and dunes at Ballykinler

For the first time, I experienced the segregation between the Protestants and Catholics. Friends, who I’d been to various schools with, suddenly had to go to a different one – they were Catholic, whereas I was brought up Protestant. It all seemed rather strange. To Mum, however, it wasn’t quite so strange. Having lived in Glasgow as a child, she knew about such differences – to the extent, that her Mum, Rena, my Gran, had been a deputy mistress of a local Orange Lodge – Rena, had in fact, on occasions, travelled to Belfast, to take part in the parades held there every year!

Ballykinler - Mum, me, and our Labrador pup Jemima

Just outside the camp gates was Sandes Soldiers' Home. An old timber and corrugated iron building first erected in 1909. At one end of the building was a large hall, complete with stage, and this was opened to the children of the camp for roller skating.

Sandes Soldiers' Home, Ballykinler
Just three years after we left Northern Ireland, Sandes was destroyed by a 300lb terrorist bomb hidden in a delivery van, resulting in the death of two soldiers.

Sandes - after the bomb

We were in Northern Ireland for little over a year – not because of the troubles – but due to the fact that Dad had joined the regiment, part way through its posting there.

Back to Germany...

We once more returned to Germany, this time a small town, not too far from Hanover, called Lemgo.

Mum was once again working for regimental HQ as a secretary/clerk. I, on the other hand, had to go to a school many miles away, in Wilhelmshaven. Prince Rupert School was founded in 1948 as a co-educational, comprehensive, boarding school for the children of British military personnel and attached civilians, stationed in Germany. The site was a former Kriegsmarine barracks used by the Germans during the war – primarily for submarines.

The WW2 naval barracks, complete with U-Boats, that was to become Prince Rupert School

So, whilst Mum and Dad carried on as normal, I was much further north, on the German coast, along with several hundred other military children and teenagers. Looking back, there were times when I didn’t enjoy being there, but at other times, it was quite good fun. It didn’t do me any harm, and, in a way, prepared me for many other things later in life.

Army life comes to an end...

Dad’s army career was drawing to a close, and we left Germany in early 1972 - Dad’s final posting was to the infantry depot in Shrewsbury, Shropshire. Our last army quarter was just outside a village between Shrewsbury and Oswestry, called Nesscliffe. Nesscliffe has a sizeable training camp and training area - a camp I have since visited many times, during my own subsequent, Territorial Army career.

Back to Cornwall...

After Dad was discharged from the army in 1973, we moved to St Austell, Cornwall, a place Mum and Dad were to live for thirteen years. After moving every two years or so, staying for in one place, for any length of time, was almost alien to us. Mum eventually got a job as a PA to the Marketing Director of what was then English China Clays (now Imerys) - a job she was to keep until taking early retirement in the early 1980s.

Dad also got himself a job as a civil servant, working for the then Department of Health and Social Security (now DWP). I attended St Austell Grammar School and then St Austell Sixth Form College. After I’d finished my education, I also went to work at the same place as Dad – but only for two years, as I hated it.

I went on to study Graphic Design - firstly at the Cornwall Technical College, near Cambourne, and then Bristol Polytechnic (now the University of the West of England).

Mum enjoyed working for English China Clays (ECC), and had an office in their HQ building, looking out across the town and to the sea beyond. ECC was the main employer in the town, and its HQ building (John Keay House) dominated the side of a hill just to the north, overlooking the town.

John Keay House, where Mum worked in St Austell, Cornwall
Looking over St Austell - John Keay House dominates the hillside

Not long after taking retirement, Mum was diagnosed with cataracts. She had two separate operations to remove them, and during the second was given what was then a still relatively new, lens implant. It wouldn’t be until many years later, that she’d have a second for the other eye. So, for a long time, she had to wear a contact lens in the other eye.

After graduating from Bristol, and finishing an additional year as a research assistant. I moved back to Cornwall, where I eventually got a job as an art-worker for a local printing company. As a first job in the industry it was a good grounding, but I soon grew bored with it, and began looking elsewhere for a better job.

Independence – sort of...

I moved away from Cornwall in 1983, after getting a job as studio manager for a small advertising agency in Newbury, Berkshire. In 1985, I got another job with a marketing and printing company in Hungerford, and moved to a rented house in Kintbury.

Dad was about to retire from the civil service, and he and Mum decided to move nearer to me. Mum, along with our Golden Retriever, Jenny, moved in with me first, whilst Dad finalised the sale of the house in St Austell. He joined us about a month later.

During this time, I’d also been looking for another job – in London - and ultimately secured a position as Creative Director with a small advertising agency in Putney. It was also around this time, that Mum and Dad finally decided to look for a house is Sussex, near Dad’s sister. As I’d never married, I suggested that we buy a house together, as the area they were looking at, was within easy commuting distance of London.


All three of us - plus Jenny - moved in February 1986. We soon settled in to our new home on the Sussex coast, and Mum busied herself looking after the home and the garden. Later that year, on 5 November 1986, I joined the Territorial Army.

It was just over a year after we'd moved from Berkshire, that Michael Ryan shot and killed sixteen people in Hungerford - where I'd been working - before killing himself. Luck was once again on our side!

I continued to commute to London every day, generally without incident, apart from the Great Storm of 1987, when the line from Brighton to London was blocked due to fallen trees and land slips. Mum would occasionally commute with me, as she would cover for one of the secretaries at the agency, when they were on holiday. The Putney agency was bought out in 1988 by a larger West End agency, and most of us then moved to their premises just off Oxford Street. Mum continued to do occasional secretarial work there too.

By 1989, I’d become pretty fed up of commuting every day, so resigned my position as Creative Director, and went freelance. The timing was quite fortunate, as two of the founders of the first London agency, had set up a new one in Sherborne, Dorset. I had an immediate and ready source of design work. Mum was also able to help with secretarial work and my accounts.

Dad becomes unwell...

By 1992 Dad was beginning to show signs of some kind of illness, and when we finally persuaded him to seek advice, he was diagnosed with both cancer of the oesophagus and multiple myeloma (cancer of the bone marrow). His prognosis wasn’t good, two years at the most. Mum and I were able to discuss this, and prepare for the inevitable - whilst Dad had frequent visits to the hospital for various forms of treatment, including bone marrow transplants, and chemo-therapy.

Dad and Jenny

Unexpected loss...

During this stressful time, our beloved retriever Jenny, died unexpectedly in 1993. Dad was clearly upset, but tried hard not to show it, Mum and I, were a little less reserved. Although Jenny had been given a clean bill of health by the vet, just a week earlier, the autopsy showed she had cancer of the liver, and had had a massive internal haemorrhage. There was nothing we could have done.

Goodbye Dad...

After recovering from the loss of Jenny, it was clear that we had to concentrate on making Dad as comfortable and as happy as possible - we knew he would be next. Dad died - at home - on August 5 1994, Mum and I were at his side. His sister had been with him not long before, but he managed to hang on until it was just the three of us. Mum and I hugged each other, shed a few tears, and said our goodbyes.

Even though I made most of the funeral arrangements, Mum was strong and supportive throughout - once Dad’s funeral was over, life returned to as near normal as possible. By 1997, it was becoming clear that the house was no longer a happy place to live – to quote an often used cliché – it carried too much baggage for us. We needed to move on. In the meantime, I’d stopped working as a freelance Graphic Designer, and had secured a full-time job, as a Graphic Designer, not far from home.

Moving on...

We sold the house, and for a few happy months, Mum went to stay with an old friend in Blackpool, until I found her a suitable flat – I’d already found one for myself before the move. When she came back, she moved into a flat not far from mine, so I was able to visit her everyday – we’d usually share an evening meal together. As her flat had two bedrooms, she was able to have friends to stay, and one old friend, from her early days in Yorkshire, came to stay for respite, after her husband had been diagnosed with dementia. This was my first encounter with the way dementia could affect, not just those living with the condition, but also those around them.

Further encounters with dementia...

This was not to be my only encounter with dementia, not long after this, Mum’s brother Gordon, was diagnosed with Alzheimer’s.

Mum and her brother Gordon - shortly before he was diagnosed with Alzheimer's

For Mum and me, life continued as normal - I continued to work, and also continued to pursue my career with the TA. I spent many weekends away, along with the yearly two weeks Annual Camp, in various places, at home and abroad, including the Czech Republic.

Mum starts to show vulnerability...

Early in the new millennium, there was a serious wake-up call. Mum had a very severe bout of the flu, and by this time, being in her early seventies, it affected her quite badly. I took her to A&E, where I had to argue with a triage nurse who insisted that she go home, take Paracetamol and rest – however, I pointed out that she was much weaker than normal, hardly able to walk unsupported, and seriously dehydrated. The nurse eventually relented - so, when Mum eventually saw a doctor, he was quite concerned about her condition. He prescribed antibiotics, and insisted that I stay with her, in her home, until she had recovered – otherwise, she would have had to be admitted to hospital.

Fortunately, this occurred over the Christmas holiday period, and I was able to stay with her, to look after her, until her condition improved.

This new vulnerability, opened my eyes to the fact that Mum would no longer be able to live alone for much longer. Soon after, I moved her in with me. She recovered from her bout of flu, and returned to carrying out her normal daily tasks – now living in my flat – cleaning, washing and cooking.

Everything was fine, until she developed shingles, around 2005. It took some time for her to recover from this, and during this time it is also very likely, that she suffered a minor stroke. The rocky road to dementia had begun.

Mum says goodbye to her brother...

As was often the case, when I was away with the TA for Annual Camp, Mum would stay with her sister-in-law, just outside Blackpool. Her brother Gordon’s Alzheimer’s had progressed to the extent, that he was now in a nursing home. It was during one of Mum’s last trips to Blackpool, and on a visit to see her brother Gordon, that he passed away – Mum was with her brother when he died. She was now the sole surviving member of that family’s generation. She’d suffered rheumatic fever as a child, yet she had outlived all of her three siblings, two of whom were younger than her.

Dementia - first indications...

By 2009 Mum had suffered a number of falls, and her walking had become more laboured. She’d not suffered any serious injuries until this point, but her most recent fall resulted in a broken wrist.
Familiar objects were beginning to become incomprehensible. She no longer knew how to use the washing machine. Using the stove became, frankly, dangerous. As for the toaster, she still knew how to use it, but if the toast got stuck, she’d try to get it out with a knife - tripping the fuse box, and cutting the electricity supply. Thank goodness for RCBs!

It was becoming increasingly clear, that Mum was no longer able to carry out the normal daily tasks she’d done for so long. I started to do all the cooking, washing, cleaning etc. I left the TA, as I was no longer able to spend much time away from her, and certainly not overnight! By 2011, Mum was diagnosed with vascular dementia.

My future role...

In 2011, due to a massive reorganisation of the company I was working for, I needed to look for another job. I was unemployed from February to June of that year, after which I was able to secure a job, with another company, in the local area. This job, as a result of the company's inflexibility, and Mum’s increasing needs, was to prove to be my last - for the foreseeable future, at least. I resigned in January 2012.

Mum’s dementia had progressed, and she had started to wander. Company rules insisted that mobile phones should be switched off during working hours – this made it impossible for helpful neighbours to contact me, when they found Mum wandering outside, sometimes wearing little more than summer clothing, in freezing conditions.

It had become clear, that I could no longer carry on working and care for Mum. Although I didn’t admit it at this stage, I had become Mum’s full-time carer. Her mobility was still reasonable, but her mind was becoming more confused. In August of 2012, we moved to a new flat, a flat designed to cater for those who various disabilities. Whilst it didn’t seem too appropriate at the time, this was to prove a Godsend later. In October of the same year, Mum suffered a TIA, she’d probably had several undetected minor TIAs previously. On this occasion, she ended up in hospital for three days.

Mum’s dementia and other problems...

Although she recovered from the TIA, her mobility worsened - she was less stable, and less able to walk any distance without support. As October progressed, her mobility reduced still further. By early November, she was showing signs of another illness.

Mum had suffered a very serious UTI. Her dehydration and confusion, resulted in yet another hospital admission - this time for three weeks. Upon discharge, Mum was no longer able to walk. She was doubly incontinent, and in need of care 24/7.

This was the ugly face of dementia...

Just over a year on – the situation has hardly changed. I’m Mum’s full-time carer, and perfectly willing to admit it. I call out of hours doctors, in the early hours of the morning, as soon as I suspect another UTI. They no longer question my “diagnosis” (I do have urine test strips to back it up) – it happens, on average, every two months – and they quite happily prescribe another batch of antibiotics.

Mum is happy. She’s totally unaware of the fact that she can no longer walk. She’s still quite feisty when anyone annoys her. But, her little world is now the room where she spends each day - warm, comfortable, and safe.

Will she still be here this time next year? I don’t honestly know. This time last year, I wasn’t expecting her to be here now. She is! I treasure very moment...

Sunday, 5 January 2014

Music and dementia – using technology to provide musical interaction through singing...

I’ve already touched on the importance of music for people living with dementia elsewhere on my blog, but I now want to introduce something a little more interactive. Something, that can be used both at home, and, in day care centres and care homes for people with dementia.

Most computers - desk-top, laptop, tablet, and even smart-phones - are now very well capable of playing music. They can play mp3 files, and .wav files, but many can also play .mid or MIDI files.

MIDI stands for Musical Information Digital Interface. MIDI files are generally quite small - just a few kilobytes - this is because they are simply machine/computer code telling the MIDI software or hardware, which notes to play, which instruments to play, and for how long – essentially a computer language version of sheet music.

Windows Media Player is perfectly capable of playing MIDI files, unfortunately the GM (General MIDI) instruments included with Windows leaves a lot to be desired. Depending on the version of Windows you are using, this can be improved, as I will explain later. Apple Macs and iPads can also play MIDI files, and generally have a better set of GM instruments. Many Android tablets and smart-phones can also play MIDI files – quite a few ring tones are in MIDI format.

The first issue with MIDI files is that they are purely instrumental music, there are no vocals. However, there are many MIDI files that have a karaoke style word notation contained within the data. These files are playable using a MIDI/karaoke player, one of which is freely available at VanBasco

VanBasco also has a search engine to help you find the MIDI/karaoke songs you want, and trust me, there are thousands!

Going off at a slight tangent, Mum loves watching and listening to Andre Rieu concerts - using MIDI files and a MIDI capable Casio keyboard, I can effectively reproduce much of the music from those concerts, simply by downloading MIDI files and using a MIDI player or sequencer on my laptop.
I’m currently researching suitable apps for Android tablets, and will update later.

OK, let’s look at what is needed:

At home

Little more than a laptop capable of playing .mid (MIDI) files, with, maybe, some external speakers and (in the case of Windows) an improved GM instrument set. Launch VanBasco, select songs for the playlist (after downloading the files of course), and off you go! Result: favourite songs - complete with words, karaoke style - to sing along with.

For larger audiences

For larger groups - such as day care centres and care homes - this can easily be adapted using HDMI. Many laptops and tablets have an HDMI output, enabling them to be connected to an HDMI capable TV or, for even larger groups, projector - external speakers or a PA system may also be required.

Frankly, the possibilities are endless, it just takes a little imagination.

Improving Windows GM (General Midi) instruments

Versions of Windows, prior to Windows 8, included an application called MIDI Mapper. This enabled users to download other sets of MIDI instruments, and use them instead of the “built-in” instruments. These are easily selectable from within VanBasco.

With Windows 8, MIDI Mapper disappeared, there is however a work-around, Coolsoft's Virtual MIDI synth You'll also need to download a SoundFont, I used SGM-V2.01 from

Another Windows 8 work-around is to have a USB/MIDI capable external device, such as - in my case - a Casio keyboard. This has 400 sounds, all accessible through MIDI, including GM instruments. After first plugging in, and waiting for driver installation, the keyboard can be selected as the MIDI output device, and all MIDI files are played through the keyboard’s speakers, external speakers or a PA system connected to the keyboard. The possibilities here are numerous, as there are many USB/MIDI devices available, and, at other times, such an electronic musical device, can also be used as a keyboard – to play piano, organ etc. - independently of any computer (most of these devices default to standard grand-piano mode when switched on).

Free MIDI files

The easiest way to search for the songs you require is to type in the title of the song along with the word “MIDI” – Google, for example, will then bring up various sources for that song in MIDI format. When searching for files carrying karaoke data, the VanBasco search engine is the best bet.
You will often find that these MIDI/Karaoke files have an additional melody track – this plays the melody to which the words are sung. Sometimes, this melody track can be over-intrusive – fortunately VanBasco provides the capability to mute this track – it is normally the first instrument listed.

As is often the case, experimentation is essential. Many of the freely available MIDI/Karaoke tracks have been compiled by budding amateur musicians, and whilst many are very good, some are not. But, with little more than a computer, some easily downloadable free software, and thousands of freely available MIDI tracks, it is a very easy and incredibly inexpensive way, to create a vast library of interactive music, for everyone to enjoy!

I’ve listed a few resources below to help you get started – happy searching, and hopefully, happy singing!

Some sources for free MIDI files - some with lyrics - there are many, many more...

Classical MIDI tracks...

VanBasco MIDI Karaoke Player...