Joan Hugo Burley worked as a Neurodevelopmental Paediatrician in The U.K., the U.S.A. and South Africa for over thirty years before coming to New Zealand in 2005. Faced with the prospect of having to do her specialist medical training all over again to obtain Australasian qualifications, she decided to retire, and took up other interests. She participated in the "First Chapters" Life writing programme mentored by Deborah in 2010, and her story about her mother's dementia was selected for inclusion in the resulting book "Translucence", edited by Deborah. She also contributed five short stories to the book "Talespinners" (2014) a collection written by the South Auckland writers' group.
When I was very young, the sound of my mother’s singing filled our home. She would sing popular ballads and old English folk songs as she did the ironing, or prepared supper in the kitchen. She told me that she had sung to me as I splashed in my baby bath, and that I would try to imitate the notes, cooing and laughing as she sang. Later, she taught me nursery rhymes and songs, passed down to her by her own mother.
I loved to hear stories about my mother’s childhood in a small Yorkshire village near Leeds. Every Sunday as a young girl, she would walk across the fields to the old stone church to sing in the choir. She told me that she couldn’t sleep on Saturday nights, as her hair was wound up tightly in little rags, which were hard and uncomfortable. This was the price she had to pay for bouncing ringlets.
My mother was the youngest of four children, and didn’t remember her father, who had died in the First World War when she was only two years old. Her mother struggled to bring up the family on a widow’s pension, and as soon as they were old enough, the older children were sent out to work. My mother was only twelve when her mother died as well, from cancer. In her will, she left my mother her old upright piano, polished walnut with brass candlesticks on either side. The family hadn’t been able to afford piano lessons, but although my mother never learned to play the instrument herself, it was her most prized possession. Later, after she grew up and married my father, she would sing along as he played their favourite songs, “Charmaine,” “Smoke gets in your eyes,” and wartime hits such as “There’ll be bluebirds over the white cliffs of Dover.”
That piano went with our family from one house to another, and was the centre of family sing-songs and Christmas carols by candlelight. In time I grew up, married and moved away, and my parents grew frail and wrinkled, but my father still loved to play, and my mother would join in. Her voice by now was more quavery and trembling, but the notes were true, and all the words were still there.
I was visiting my parents in Oxford one weekend when I had the first indication that my mother’s personality was beginning to change. I had finished work on Friday afternoon and battled for hours in the weekend rush hour traffic leaving London. The next morning I was enjoying a leisurely early morning cup of tea in bed with my book, when the door opened abruptly, and my mother stood there, looking at her watch. Her dress hung on her gaunt frame and she fingered the folds of material restlessly. “Are you going to stay there all day?” she asked angrily. “When are you coming down for breakfast?”
It was unlike my mother to speak so impatiently. Saturday mornings were always unhurried, and a polite reminder was more her style. I was disconcerted by her outburst, but by the time I arrived in the kitchen a few moments later, everything seemed to be back to normal, and she baked some little cup cakes for me to take back to London that Sunday.
Over the next five years, the transformation continued inexorably. An irrational fear of burglars caused her to hide keys, reading glasses, and the television remote in increasingly strange and difficult-to-guess places. My father’s silver table napkin ring, a Christening present, disappeared without trace. Shoes were put away in the fridge, ice cream found its way into the broom cupboard (and quietly melted there), and her handbag frequently went missing, which distressed her. My father would sigh as she repeatedly asked where it was, but he would get up from his comfortable armchair and start searching in all the likely hiding places.
I solved the problem by hiding a battery-operated doorbell in my mother’s handbag. It had to be sewn in under the lining, or she would take it out, protesting, “This isn’t mine.” With the doorbell my father could walk around the house pressing the button, listening for the “ding dong” from inside a cupboard or under the sofa. Like a magician, he would produce the lost handbag with a flourish. “Here it is,” he would say triumphantly.
As the disease progressed, my mother stopped singing. We missed this terribly. The house seemed strangely quiet, the silence broken only by the ticking of the kitchen clock. I tried to play some CDs I thought she would like; piano melodies and popular songs from the 1940s, but she told me to “turn off that miserable racket.” It was as if her brain could no longer make sense of what she was hearing.
My mother’s relentless mental deterioration was hardest on my father, who was over eighty. I could go back to work and live a normal life from Monday to Friday, but he had no respite from her restlessness and her growing inability to understand things. Sometimes she would manage to open the locked front door and wander off. My father would frantically telephone the neighbours, asking if anyone had seen her. Sometimes they would call him, to say she had knocked on their door unexpectedly, and he would arrive at their house to find her calmly enjoying a cup of tea, unaware of the distress her disappearance had caused.
At night she would disturb his sleep, and so he took refuge in the spare bedroom. However, she missed his familiar presence, and would wake him up several times a night, asking in a tremulous voice “Are you all right?”
During one of my visits I was woken by noises from her room in the early hours. I found her trying to dress herself.
It isn’t time to get up yet, it’s only two o’clock, I informed her gently.
She looked at me blankly. “Two in the morning or two in the afternoon?” she asked in bewilderment.
I pulled back the curtain to show her the dark sky. “Which do you think?” I asked, but she had already forgotten the question.
When I was there, my father often slipped upstairs during the day to have a few precious hours of sleep. To distract my mother I would take her out in the car to the garden centre, where she would look at the flowers, and we would enjoy a cup of tea and a piece of cake. One particular day my father was still sleeping on our return, and so I sat downstairs trying to keep her entertained with old photographs and programmes on the History Channel. Nothing was working for long and my mother repeatedly tried to go upstairs.
Leave him alone, I said, finally giving vent to my exasperation. “He’s having a rest.”
She looked at me defiantly.
“I’ll go up to see him if I want,” she declared. “He’s my husband.”
And he’s my father, I retorted.
At that, her expression changed to one of amazement. “Is he really?” she asked. “Why didn’t anyone tell me?”
Sometimes, my mother’s forgetfulness followed a strange sort of logic. My parents had lived in the same house for over forty years, and for as long as I could remember the cutlery had been put away in a certain drawer on one side of the kitchen, and the dinner mats, serviettes, tray cloths and other linen on the other. One day, after lunch, my father had washed up, and my mother was helping to put away the knives – but in the wrong drawer. I waited until she had left the kitchen before quietly returning everything to its proper place.
That evening, as we were laying the table for supper, my mother was searching for the knives and forks in the linen drawer.
“They aren’t in there,” I told her gently. “The knives and forks are on this side, in this drawer.”
She looked at me as if I was an idiot. “If I put them in this drawer, then why aren’t they here?” she asked in puzzlement. By this stage she couldn’t remember that I was her daughter, so how did she know where she had put the cutlery several hours before? It was a mystery, just one more example of the frustrating inconsistency of dementia. One minute she was affronted when people stepped in and assisted her, the next she was helpless, confused, and frightened. It made life very difficult for everyone.
My father tried everything to keep her brain active. He would play scrabble with her, delighting in every point she won. He would take her for walks, telling her the names of all the plants, and would spend hours showing her the family photograph albums, trying to keep the memories alive. He consulted psychiatrists and psychologists and took her for a brain scan, which just served to confirm the hopeless diagnosis. The little arteries in her brain were shutting down one by one, killing all the nerve cells as they did so.
She tried various types of medication to see if anything would help. They didn’t promise us a cure, just a slower rate of decline. Since we didn’t know how she would progress without medication, it was difficult to tell if it was doing any good, but my father tried everything anyway, just in case. It cost thousands of pounds, as the National Health Service didn’t cover expensive drugs like Aricept, but he would have sold the house to keep her with us as long as he could.
What we did know without a doubt was that the deterioration was continuous and unremitting. Every time I visited, I found her increasingly forgetful and unable to do everyday tasks. It was frightening and lonely for her, and more and more she would seek our love and affection. Long after her brain lost the ability to find the right words, she could identify and respond to emotions and body language.
My grown-up daughter, who was working in America, flew over one Easter holiday to visit her grandparents. My mother enjoyed her visit, although she didn’t know that this smiling young lady was her granddaughter. As we were about to leave for the airport, everyone was hugging and saying goodbye. My mother watched us, obviously wanting to join in. Finally, she said, “Can I have a Darling too?” We knew what she meant and gave her a big hug.
The last time we took my mother to Church was for Harvest Festival. It was September, and the golden autumn days had turned chilly. She wore a thick woollen coat that she hadn’t worn since the previous spring. It had been hanging on a peg in the downstairs cloakroom. As we waited for the service to begin, I gave my mother a pound coin to put in the collection, and she put it in her coat pocket.
The offertory hymn was a favourite of hers, “We plough the fields and scatter, the good seed on the land.” Without any hesitation my mother joined in and sang with enthusiasm. How had she remembered the words? As we came to “All good gifts around us are sent from heaven above,” the church warden passed the collection plate down our row. To my horror, my mother reached into her pocket and as the plate passed by, placed my father’s cherished silver napkin ring into the collection. Swiftly I grabbed it and substituted some money. The churchwarden smiled indulgently but my mother protested loudly. She didn’t realize that she had parted with a precious family heirloom, but she definitely knew that I shouldn’t be taking something from the collection plate. Fortunately she was reassured by the churchwarden’s smile and soon forgot what had happened and rejoined the singing.
Eventually, as my mother became increasingly unable to manage her personal washing and dressing, a decision had to be made. At eighty five years old, and suffering from painful shingles himself, my father couldn’t take care of her any longer and was forced to put her in a rest home.
One Sunday I took him to visit her. She was pleased to see us, and recognised our faces, although she had forgotten our names. We had to remind her. My parents sat side by side on the sofa, my father’s arm around her shoulders, as they enjoyed their tea and cake. Suddenly, for no apparent reason, my mother started singing an evening hymn she loved. It was “The Day Thou Gavest, Lord, has ended.” We joined in as she sang it faultlessly. When the hymn came to an end, we kissed her goodbye, and watched as she shuffled away on the nurse’s arm.
Physically, she seemed fine, and my father was cheered that she had been in good spirits. I went back to London that night, promising to visit them again the following weekend.
Nothing prepared me for the telephone call from the rest home on the Thursday morning, saying that my mother had died in the night. She had been complaining of chest pain, and had passed away peacefully in her sleep from a heart attack. With my numb brain functioning on automatic, I made my way to Oxford to break the news to my father and to help him with the arrangements for her funeral. It wasn’t hard to choose the hymn – “The Day Thou Gavest, Lord, has ended”. As the memories came flooding back, the difficult part was struggling to sing through my tears.
When I was very young, the sound of my mother’s singing filled our home. She would sing popular ballads and old English folk songs as she did the ironing, or prepared supper in the kitchen. She told me that she had sung to me as I splashed in my baby bath, and that I would try to imitate the notes, cooing and laughing as she sang. Later, she taught me nursery rhymes and songs, passed down to her by her own mother.
I loved to hear stories about my mother’s childhood in a small Yorkshire village near Leeds. Every Sunday as a young girl, she would walk across the fields to the old stone church to sing in the choir. She told me that she couldn’t sleep on Saturday nights, as her hair was wound up tightly in little rags, which were hard and uncomfortable. This was the price she had to pay for bouncing ringlets.
My mother was the youngest of four children, and didn’t remember her father, who had died in the First World War when she was only two years old. Her mother struggled to bring up the family on a widow’s pension, and as soon as they were old enough, the older children were sent out to work. My mother was only twelve when her mother died as well, from cancer. In her will, she left my mother her old upright piano, polished walnut with brass candlesticks on either side. The family hadn’t been able to afford piano lessons, but although my mother never learned to play the instrument herself, it was her most prized possession. Later, after she grew up and married my father, she would sing along as he played their favourite songs, “Charmaine,” “Smoke gets in your eyes,” and wartime hits such as “There’ll be bluebirds over the white cliffs of Dover.”
That piano went with our family from one house to another, and was the centre of family sing-songs and Christmas carols by candlelight. In time I grew up, married and moved away, and my parents grew frail and wrinkled, but my father still loved to play, and my mother would join in. Her voice by now was more quavery and trembling, but the notes were true, and all the words were still there.
I was visiting my parents in Oxford one weekend when I had the first indication that my mother’s personality was beginning to change. I had finished work on Friday afternoon and battled for hours in the weekend rush hour traffic leaving London. The next morning I was enjoying a leisurely early morning cup of tea in bed with my book, when the door opened abruptly, and my mother stood there, looking at her watch. Her dress hung on her gaunt frame and she fingered the folds of material restlessly. “Are you going to stay there all day?” she asked angrily. “When are you coming down for breakfast?”
It was unlike my mother to speak so impatiently. Saturday mornings were always unhurried, and a polite reminder was more her style. I was disconcerted by her outburst, but by the time I arrived in the kitchen a few moments later, everything seemed to be back to normal, and she baked some little cup cakes for me to take back to London that Sunday.
Over the next five years, the transformation continued inexorably. An irrational fear of burglars caused her to hide keys, reading glasses, and the television remote in increasingly strange and difficult-to-guess places. My father’s silver table napkin ring, a Christening present, disappeared without trace. Shoes were put away in the fridge, ice cream found its way into the broom cupboard (and quietly melted there), and her handbag frequently went missing, which distressed her. My father would sigh as she repeatedly asked where it was, but he would get up from his comfortable armchair and start searching in all the likely hiding places.
I solved the problem by hiding a battery-operated doorbell in my mother’s handbag. It had to be sewn in under the lining, or she would take it out, protesting, “This isn’t mine.” With the doorbell my father could walk around the house pressing the button, listening for the “ding dong” from inside a cupboard or under the sofa. Like a magician, he would produce the lost handbag with a flourish. “Here it is,” he would say triumphantly.
As the disease progressed, my mother stopped singing. We missed this terribly. The house seemed strangely quiet, the silence broken only by the ticking of the kitchen clock. I tried to play some CDs I thought she would like; piano melodies and popular songs from the 1940s, but she told me to “turn off that miserable racket.” It was as if her brain could no longer make sense of what she was hearing.
My mother’s relentless mental deterioration was hardest on my father, who was over eighty. I could go back to work and live a normal life from Monday to Friday, but he had no respite from her restlessness and her growing inability to understand things. Sometimes she would manage to open the locked front door and wander off. My father would frantically telephone the neighbours, asking if anyone had seen her. Sometimes they would call him, to say she had knocked on their door unexpectedly, and he would arrive at their house to find her calmly enjoying a cup of tea, unaware of the distress her disappearance had caused.
At night she would disturb his sleep, and so he took refuge in the spare bedroom. However, she missed his familiar presence, and would wake him up several times a night, asking in a tremulous voice “Are you all right?”
During one of my visits I was woken by noises from her room in the early hours. I found her trying to dress herself.
It isn’t time to get up yet, it’s only two o’clock, I informed her gently.
She looked at me blankly. “Two in the morning or two in the afternoon?” she asked in bewilderment.
I pulled back the curtain to show her the dark sky. “Which do you think?” I asked, but she had already forgotten the question.
When I was there, my father often slipped upstairs during the day to have a few precious hours of sleep. To distract my mother I would take her out in the car to the garden centre, where she would look at the flowers, and we would enjoy a cup of tea and a piece of cake. One particular day my father was still sleeping on our return, and so I sat downstairs trying to keep her entertained with old photographs and programmes on the History Channel. Nothing was working for long and my mother repeatedly tried to go upstairs.
Leave him alone, I said, finally giving vent to my exasperation. “He’s having a rest.”
She looked at me defiantly.
“I’ll go up to see him if I want,” she declared. “He’s my husband.”
And he’s my father, I retorted.
At that, her expression changed to one of amazement. “Is he really?” she asked. “Why didn’t anyone tell me?”
Sometimes, my mother’s forgetfulness followed a strange sort of logic. My parents had lived in the same house for over forty years, and for as long as I could remember the cutlery had been put away in a certain drawer on one side of the kitchen, and the dinner mats, serviettes, tray cloths and other linen on the other. One day, after lunch, my father had washed up, and my mother was helping to put away the knives – but in the wrong drawer. I waited until she had left the kitchen before quietly returning everything to its proper place.
That evening, as we were laying the table for supper, my mother was searching for the knives and forks in the linen drawer.
“They aren’t in there,” I told her gently. “The knives and forks are on this side, in this drawer.”
She looked at me as if I was an idiot. “If I put them in this drawer, then why aren’t they here?” she asked in puzzlement. By this stage she couldn’t remember that I was her daughter, so how did she know where she had put the cutlery several hours before? It was a mystery, just one more example of the frustrating inconsistency of dementia. One minute she was affronted when people stepped in and assisted her, the next she was helpless, confused, and frightened. It made life very difficult for everyone.
My father tried everything to keep her brain active. He would play scrabble with her, delighting in every point she won. He would take her for walks, telling her the names of all the plants, and would spend hours showing her the family photograph albums, trying to keep the memories alive. He consulted psychiatrists and psychologists and took her for a brain scan, which just served to confirm the hopeless diagnosis. The little arteries in her brain were shutting down one by one, killing all the nerve cells as they did so.
She tried various types of medication to see if anything would help. They didn’t promise us a cure, just a slower rate of decline. Since we didn’t know how she would progress without medication, it was difficult to tell if it was doing any good, but my father tried everything anyway, just in case. It cost thousands of pounds, as the National Health Service didn’t cover expensive drugs like Aricept, but he would have sold the house to keep her with us as long as he could.
What we did know without a doubt was that the deterioration was continuous and unremitting. Every time I visited, I found her increasingly forgetful and unable to do everyday tasks. It was frightening and lonely for her, and more and more she would seek our love and affection. Long after her brain lost the ability to find the right words, she could identify and respond to emotions and body language.
My grown-up daughter, who was working in America, flew over one Easter holiday to visit her grandparents. My mother enjoyed her visit, although she didn’t know that this smiling young lady was her granddaughter. As we were about to leave for the airport, everyone was hugging and saying goodbye. My mother watched us, obviously wanting to join in. Finally, she said, “Can I have a Darling too?” We knew what she meant and gave her a big hug.
The last time we took my mother to Church was for Harvest Festival. It was September, and the golden autumn days had turned chilly. She wore a thick woollen coat that she hadn’t worn since the previous spring. It had been hanging on a peg in the downstairs cloakroom. As we waited for the service to begin, I gave my mother a pound coin to put in the collection, and she put it in her coat pocket.
The offertory hymn was a favourite of hers, “We plough the fields and scatter, the good seed on the land.” Without any hesitation my mother joined in and sang with enthusiasm. How had she remembered the words? As we came to “All good gifts around us are sent from heaven above,” the church warden passed the collection plate down our row. To my horror, my mother reached into her pocket and as the plate passed by, placed my father’s cherished silver napkin ring into the collection. Swiftly I grabbed it and substituted some money. The churchwarden smiled indulgently but my mother protested loudly. She didn’t realize that she had parted with a precious family heirloom, but she definitely knew that I shouldn’t be taking something from the collection plate. Fortunately she was reassured by the churchwarden’s smile and soon forgot what had happened and rejoined the singing.
Eventually, as my mother became increasingly unable to manage her personal washing and dressing, a decision had to be made. At eighty five years old, and suffering from painful shingles himself, my father couldn’t take care of her any longer and was forced to put her in a rest home.
One Sunday I took him to visit her. She was pleased to see us, and recognised our faces, although she had forgotten our names. We had to remind her. My parents sat side by side on the sofa, my father’s arm around her shoulders, as they enjoyed their tea and cake. Suddenly, for no apparent reason, my mother started singing an evening hymn she loved. It was “The Day Thou Gavest, Lord, has ended.” We joined in as she sang it faultlessly. When the hymn came to an end, we kissed her goodbye, and watched as she shuffled away on the nurse’s arm.
Physically, she seemed fine, and my father was cheered that she had been in good spirits. I went back to London that night, promising to visit them again the following weekend.
Nothing prepared me for the telephone call from the rest home on the Thursday morning, saying that my mother had died in the night. She had been complaining of chest pain, and had passed away peacefully in her sleep from a heart attack. With my numb brain functioning on automatic, I made my way to Oxford to break the news to my father and to help him with the arrangements for her funeral. It wasn’t hard to choose the hymn – “The Day Thou Gavest, Lord, has ended”. As the memories came flooding back, the difficult part was struggling to sing through my tears.
“The fine delight that fathers thought: the strong
Spur, live and lancing like the blowpipe flame, Breathes once, and quenched faster than it came, Leaves yet the mind a mother of immortal song.” (Gerard Manley Hopkins, 1844 – 1889.) |