CHAPTER 1

2006

I distinctly remember the coloured rays of light filtering through the thin blinds in the hospital waiting room. Mum seemed to be taking a while to come out. The doctor finally appeared asking to speak to both Mum and I.

In a tiny nondescript room he opened a manila folder with Mum's name neatly adhered to the top and showed us photographs of a large evil-looking growth which they had found during a routine colonoscopy. His voice seemed to fade away into the distance, until I noticed that he was looking at our faces, waiting for the answer to a question he obviously had just asked. Making the decision himself he made a call to a specialist upstairs and booked an appointment for us to see him in one hour's time.

It was decided that in three days, Mum would have a major operation to remove the growth and a length of her bowel including lymph nodes. Leaving the specialist office we walked in stunned silence to the car and returned home. Those three days dragged. I rang my younger brother and sister, who both lived interstate, as well as a couple of Mum's friends and sisters plus my adult children. Emotions ran high. Mum sat alone in her house all weekend with her thoughts and fears, not wanting to make the calls herself.

On the morning of the operation we were understandably nervous. They took Mum away and I waited and waited until the doctor gave me the results. The operation was a success! Thank goodness.

However, after the operation, Mum started saying bizarre things. She didn't realize that she was in hospital and had an operation. Medical staff said

"It's probably just the anesthetic. Once it's out of her system she'll be alright."

I wondered ...

The year was 2006. Looking back, I feel this was the first evidence of that cruel disease dementia invading Mum's mind.

CHAPTER 2

OUR FAMILY

On average, families with the skill of hindsight, acknowledge that they noticed symptoms of Dementia three years before a proper diagnosis was made.

This was true of Mum. Like the edges of a cloth starting to fray, Mum's personality and understanding of situations started to change. I had attributed the uncertainty which Mum displayed in decision making, plus the heavier reliance on me, due to her traumatic cancer operation and living alone.

Mum was also getting older, wasn't she?

Mum was born in 1934 and lived in the Murrarie and Morningside areas of South Brisbane. She was the eldest of eleven children and so as she became older, she was responsible for many of the daily chores within the household. As each new sibling was born, she helped care for the other children and cleaned the house. This was a common occurrence in families of that time. Mum received good results in school. This was an even greater achievement, due to the fact that with every new baby born, she would be absent from school for some time. As time passed, Mum started working in Brisbane city. With money saved she enjoyed buying smartly coordinated outfits for going out with her work friends and sisters.

She attracted the eye of my handsome dark haired father who was living at West End, South Brisbane. On Valentine's Day 1953 they married and lived for a short time with Dad's family. After I was born we moved to a small one bedroom flat in Highgate Hill, South Brisbane. Most of my memories of that place are blurred but I can remember fondly a neighbour I called 'Mrs Bish'. Apparently at a prescribed time most mornings, I would totter up the stairs to Mrs Fisher's place for morning tea being careful not to disturb the scary cats which hid under the stairway. Even then I displayed an independent streak.

Another memory I recall vividly, was when sitting in the warm alcove of our bay window, I was alerted to the sounds of drums and trumpets playing. I looked out to see a circus parading past. Excitedly I shouted, "Look Mum, a circus!" I strained to watch them as they travelled further down the steep road into the heart of Brisbane. That same road also held a frightening memory for my Uncle Alan. Being my father's younger brother, Alan remembers sitting on the front handlebars of Dad's bicycle, white faced and hands tightly clenched, as Dad pedaled as fast as he could down the steep busy road yelling at the top of his lungs. Dad delighted in the thrill of this 'high jinx'. Uncle Alan was not as impressed.

My brother was born two years after me. Our family was expanding so Mum and Dad decided to find a house we could call home. In the new suburb of West Chermside, on the north side of Brisbane, surrounded by bush and connected to civilization by a dusty road, they worked hard to establish a modest home with a mortgage.

From a young age, I remember many a weekend spent helping Mum and Dad cart large boulders from the backyard to the unlevelled front yard. Grass was laid, shrubs planted and wooden floors were varnished. Our home was complete.

Mum was quite a proud woman. She would often take us, the kids, to visit Dad's parents. We would be dressed immaculately in our best clothes and were always reminded of our manners. We didn't visit Mum's family which I always thought was strange but as we didn't have a car or phone, I imagined that their home was too difficult to reach by public transport.

It would take us most of the day to travel to and from West End, South Brisbane. Catching a bus or taxi to the tram terminus we would then travel into Brisbane city. There we would walk to catch another tram to cross the Brisbane River to West End.

Trams always fascinated and scared me. On one trip, I must have been wriggling in my seat as one of my sandals came off and landed on the top step of the tram. Mum was angry with me for being so careless and made me climb down off my seat when the tram stopped to collect my shoe. I was so scared of falling out of the tram.

Once arriving at our stop, we would then walk what seemed a long way with our little legs to Grandma's house.

Our Grandparents' house was a relatively small wooden place where people came and went all the time. It was a house where little children were seen and definitely not heard. Grandfather was a strong, stern, white-haired man who commanded the top seat of the kitchen table at lunch time. I think we were too scared to be naughty. Often when Grandfather was not there, one of Dad's older brothers came over for lunch. He had us in fits of laughter with his funny jokes and facial expressions as he ate his lunch of baked bean sandwiches which were all neatly wrapped in waxed paper. Grandma busied herself around the kitchen during his visits. She also seemed to like his relaxed banter. He seemed such a contrast to Grandfather.

Before long it was time to start our long journey home. I often envied my brother and sister as they rode in the stroller or were carried by Mum. They must have been long weary days for Mum.

By the time my sister was born, my brother and I were both in Primary School. My father's job was in the city and so he would have to leave early in the morning to catch his bus and tram. He was good at his job. He had the 'gift of the gab' and could often convince the female customers to purchase an extra towel or sheet from his Manchester department. After work he would enjoy a drink or two with his mates before returning home on the last bus at night. We didn't see Dad very much then except on weekends when he would often join us in a short game of backyard cricket. Those years would have been very lonely for Mum also. Our neighbours were very good, and chats at the backyard fence were a common occurrence and a form of relaxation and communication for Mum.

Growing up, my brother and I spent long hours in the back yard playing 'chasey', cricket and kicking the football. We had fun together. Playing in the house was only for wet days and then we drove Mum crazy. At other times, I loved to quietly make cards and booklets using paper, pictures from magazines and coloured pencils. I would make an assortment and give them to our neighbours as presents.

When I was seven I was so excited to have a little sister. I would try to look after her, but she wriggled a lot and she would often bite me so I learnt not to cuddle her too tight or for too long. One morning before school Mum was cooking Dad's breakfast and I had to take my sister into the lounge and keep her there. Wriggling to get away, I lost my grip. She fell, landing on the floor screaming. Both of my parents rushed in, angry with me. Mum, or 'the belt' was usually the disciplinarian in our household. Once everyone calmed down I was allowed out of my room.

The nature of Dad's employment changed. He became head salesman. In those days a client would be taken out for dinner and over a couple of drinks, the business deals were finalized. This style of business with excessive smoking and drinking placed an incredible strain on finances and relationships. The following years were difficult ones especially between Mum and Dad. As the eldest I remember quite clearly my parents' constant arguments.

When my sister started Primary School, Mum worked for a few hours in the evenings and on Saturdays at the local TAB. This helped financially and gave Mum a social release. I was left in charge to finish cooking tea, look after my brother and sister and have everything neat, tidy and quiet for when my father came home from work. During those years, my father always seemed to be drinking. He was very critical of everything Mum or I did. Annoyed at me he would yell, "You're just like your mother!"

Interestingly Mum would often worry about leaving me with my father because of our clashes. She thought I was too much like him in personality. Looking back with more mature eyes now, I can see how unhappy both of my parents must have been. The destructive influence of alcohol didn't help the situation.

As the years passed, my sister and I both married young and left home. My brother married a few years later. This left Mum and Dad alone together. Dad continued to drink. Divorce was not an option then.

When grandchildren came along this lightened the atmosphere. Mum enjoyed hearing about their latest antics and achievements. She would proudly display the latest photos of all the grandchildren and brag about them to the ladies and customers at the TAB.

Grandma

With red blistered hands
She lovingly knits
A brand new bonnet
For the latest arrival.

Her heart swells in adoration
As she gazes across
The framed sea of faces
On the polished tabletop.

Rejoicing with loved ones
She proudly displays
The tenderness felt
For her precious family.

CHAPTER 3

Dribbling from the right side of his mouth, painstakingly Dad raised a trembling hand as he tried to eat his cereal. Almost overnight, Dad who was only sixty-five, started to display the physical signs of a stroke. After tests, it was revealed that he had an aggressive secondary brain cancer which most likely had stemmed from a large sun cancer my father had stubbornly refused to have properly removed a year earlier. Mum cared for him at home as best as she could for three months as his health deteriorated. Even during this time, their relationship didn't change. Maybe it was too late for them, I don't know. He was in unbearable physical pain which added to his frustration and anger. For the final two weeks of his life he was moved into Palliative care.

He passed away late January 1999. My sister was living in Sydney at the time. Later that year my brother moved interstate with his wife. With my father gone, Mum initially kept herself busy by working in the garden and refurnishing the house to ref lect her own tastes. As we later realized though, she struggled to move on with her life.

One of her sisters would invite her out to the movies or meet up for a 'cuppa'. I tried to encourage her into craft or social group outings but to no avail. We managed to get Mum on a plane twice to visit her daughter and family in Sydney. Although she enjoyed seeing them, she became more and more anxious about traveling anywhere. Unfortunately, she never gave herself a chance to see her son and his family in Melbourne. Sad for both mother and son.

Gradually Mum started to decline invitations for outings. Even conversations with her neighbours of forty years started to become strained. I became Mum's social life. The neighbours would often see my 'little red car' pull up to take Mum out for the day.

My son remembers fondly taking Grandma out for her birthday. Mum would always insist on paying for things even when it was a gift for her. My son wanted to buy her some books as she enjoyed reading. After some friendly banter and a slap from his Grandmother, my son a well-built young man, paid for the books whilst his much shorter grey haired Grandma told him quite adamantly that she would pay for their morning tea. Subject closed.

Niggling pains and frequent visits to the doctor became common for Mum. After one such visit, an appointment was made for a colonoscopy. Bowel Cancer! The year was 2006.

Mum and I had always had a close relationship. This often comes with being the eldest child. The news of her impending bowel operation formed an even stronger bond which proved to be significant in her future.

CHAPTER 4

2007

Months later, after recovering from her operation, Mum's phone calls which were usually long in duration, became increasingly more emotional. My son who was living with me at the time, would often make me a cup of tea when he knew it was Grandma on the phone. One work morning Mum rang me at 5:00 very upset. She was unable to tell me what was wrong. She was very distressed, even hinting at self-harming. She begged me to come over. Like a crazy woman I drove to Mums. It took over an hour to calm her down. I could not see anything wrong or out of place. At the time I had no idea what could have triggered such a reaction from her. Once normality resumed, I travelled to work feeling very confused and shaken by the events. I rang my son to reassure him that everything was alright and rang Mum later in the day to check on her only to be told,

"I'm alright, why are you ringing?"

Not long after, at the happy occasion of my daughter's wedding I found myself asking, "Who is this woman?" Mum's manner was usually that of a quiet lady but she turned into an abusive alcohol guzzling woman. My brother and sister who had travelled up for the wedding were very concerned when they escorted Mum home. After resting for a couple of days, Mum returned to normal. We thought the unusual behaviour was just the combination of medication, excitement of the day and not eating enough food. Mum had never eaten well. My brother could not recall a time when we were growing up, when he saw Mum eat. She always made sure her family had enough to eat first before she would consider eating herself. This is something a lot of mothers do.

Mum was becoming more confused and anxious about many things in her daily life. She needed help. Somehow I had to spend more time with her, but how? I needed a job with more flexible hours. In the stressful job of teaching there was always a mountain of 'homework' which had to be completed. I decided that I could not combine teaching, helping Mum and loving my family successfully together, so I left teaching. Unfortunately, with an unstable job market I had three jobs in two years. This added to my stress. Eventually I gained a part-time job in retail, where I worked in the evenings.

In May 2009, I was married for the second time. Although it was a relaxed garden wedding, Mum's anxiety was high once again. She seemed stressed that all her family, children, grandchildren and great grandchildren, were coming together for the happy occasion. At one stage, she even refused to attend the wedding which was both bizarre and distressing for me. Eventually she attended and seemed relaxed enjoying the company of her grandchildren. It was noticeable however, that she had lost a considerable amount of weight over a short space of time. Once again, I thought it was the combination of not eating and stress that contributed to the weight loss and strange behaviour. A few days later Mum appeared relaxed and her normal self once more.

Alarm bells had started to ring.

What was happening?