No disease can be described as a good thing, even if positives can be drawn from many conditions, but, to my mind, one of the cruelest tricks that nature plays is that of bestowing someone with the condition of Alzheimer’s, dementia, or any other similar condition
You know someone, you love someone, and, if a couple you marry or get involved with a life long relationship with someone, but then comes Alzheimer’s.
Slowly at first, almost imperceptibly. The odd forgetful moment, the momentary points of confusion, but as the disease grows in strength, there is nothing but a shell left behind
A sad epmyty or confused shell with sad confused eyes that looks at you with rare glimpses of recognition, as shell with a body and a mind which can revert to a childhood, a childhood that you, as a carer can never truly know
This story, a story very dear to my heart, if for all those who suffer from such conditions, and for all the unrecognised and unpaid carers that, at times, helplessly and desperately stand by their side. It is also a story of hope and human kindness though, as seen through the thoughts, eyes, and actions of a young boy who guides a sufferer through a hopscotch game with a wisdom and depth of character far beyond his physical years.
Is this an emotional preface to a story? You bet it is, for there are two may people and too may couples whose lives have been shattered, or are in unending pain
Have I got the story about right? I hope so, and if it helps just one couple, or just one child and parent, to comes to terms with what is happening, I’ll be a very happy man indeed.
So it is that I give you Hopscotch on the Prom. Please enjoy, even if it brings forth one or painful memories and maybe a few tears.
Hopscotch on the Prom
“I want to play hopscotch, Teddy, is it time for us to go outside and play?”
That is how it began that day, as it began every day after breakfast, if it wasn’t raining, and as Edward gently helped Judy step through the hopscotch squares on the promenade he wondered, not for the first time as to where their future together might lie.
“Hopscotch one to ten, turn around and back again!”
She was well into her game now. Today was good, she could remember the order of the squares, but this wasn’t always so. Sometimes she was confused, other times angry and frustrated, and sometimes she simply stood absolutely still and gazed out over the empty bay. Edward loved Judy, and as he stood at the altar on his marriage day so many years ago, he meant every word he said before God and the congregation, but the woman he married had long since gone. Then they had both been medical students, and she had been a passionate orator and debater within the student union. Then they had both been happy with no thought for the future beyond the enjoyment and pursuance of their dreams.
Not now though, not now, as for most of the time Judy was lost in the realms of her childhood; and the real world had been left far behind. Edward had a problem though, he hadn’t been around in her childhood, and it was a world that he could never enter or ever really understand.
Where was the help their doctor and social services had promised him? What would happen as she slipped further into senility, and where was the land into which she had so completely disappeared? How could he pay for all their food, their utility, and medical bills, as they had no income beyond their pensions and savings, and where could he find time and the energy to open and answer all of the well meant yet hopelessly ineffective mail that constantly streamed through the ever flapping letterbox of his now battered and bruised front door?
One such letter had arrived that morning, and it was still lying unopened in his pocket. It was from social services, but what could they do, apart from say sorry. They were sorry that they couldn’t be of more service to Edward and Judy, and they were sorry that they couldn’t offer more professional care services, but understanding and sympathy was all that lay within their hands. He couldn’t really blame them really, as they didn’t have the money-or the staff- to help him and Judy, and they certainly didn’t have enough time.
When she was sleeping he would read the letter, but not here, and not now, for as he stood beside her a young boy called Tommy, who had been watching her from a distance was coming over to speak to her, and, as ever, Edward felt slightly alarmed.
Judy couldn’t always cope with strangers and changing or new situations. A good day could so easily turn into a bad day for Judy, and on such days she got confused and aggressive. She didn’t mean to do so of course, it was her illness that fuelled such problems, but at the same time he had to monitor her mood changes constantly. Tommy was young, he was a good lad, and mentally mature for his age, but this was Alzheimers. Tommy could be vulnerable, and Edward didn’t want him to feel any pain.
Then he began to relax a little. Tommy lived with his parents in the house opposite Edward and Judy, and he was quiet and very gentle boy. They had often talked in Edward’s front garden as Judy lay upstairs sleeping and, somehow, he always seemed to understand Judy. Edward would have to watch them both carefully but maybe, for a moment, he might be able to stand to one side.
Judy stepped through the hopscotch squares carefully, and as she slowly counted up the squares her mind drifted swiftly back to when she had been a child. She was confused, however , as, for her, childhood was all about safety, security, summer fairs, ice cream, candy floss, Punch and Judy shows, and hopscotch. It also meant slim, sleek, elegant ferries, sooty smoke stacked pug nosed colliers, and streams of visiting tourists as they rushed of the boats towards the fair. To her, as she played hopscotch, it was still summer, but now life was far more unsettling . There were no crowds as there were no visiting ferries, the fair had vanished, and there was no Punch and Judy show, let alone candy floss and ice cream.
She still could play hopscotch though, but she sometimes forgot the order of the squares and what her name was, and then of course there was always Teddy.
She knew he always washed, dressed and fed her. She knew he was a good man; and in her own befuddled way she knew she loved him, but why did he sometimes get angry and shout at her, and why could he never leave her alone?
Why did he always call her my love, or by her first name of Judy; and why did he lie in bed and sometimes snore beside her. Why was he always there at breakfast time; and why did he sometimes stroke a gold ring that mysteriously encircled one of the fingers on her hand?
Too many whys, Judy thought, yet too few answers, and nobody she could really talk to, for there was nobody in her wide awake world to help her, let alone to understand.
What was even harder was making sense of her dreams that sometimes haunted and which always bemused her.
They were funny things as they were forever hidden in a strange fog which she could neither feel or find her way through. Sometimes the fog cleared slightly, and, in the far distance she could see a man and a woman, walking, talking, holding each other, and laughing. They were standing on mountain peaks, at other times inside or in the gardens of a big building which very occasionally seemed familiar to her; but all too soon the happy couple were hidden from her and, once more she found herself isolated and alone.
She wanted pull the fog to one side as if it were a curtain. To tie it back, to meet the couple, and walk and talk with them, as she could hear their laughter and they seemed so very happy, but it was of no use. They never saw her, they never spoke or waved to her, and she didn’t know to to go over and say hello.
Judy didn’t like such dreams, as the fog, and her inability to reach the couple, made her feel both scared and lonely, yet part of her, a strange and mysterious part of her, still wanted to go there, and still, in a confused type of way, wanted so much more.
In a big red building Teddy called a hospital ,a man wearing a white coat had told her that such dreams weren’t dreams but periods of what he called lucidity, whatever they meant. Then he said that her ever present companion was called Edward, and that her and Edward were married, but as she was a child she couldn’t be married. Marriage was for grown up people, her mother had once told her, and not for children. Also this man was called Teddy, not Edward, so the man in the white coat had to be wrong. She looked at the gold ring on her finger. Teddy always seemed happy when he stroked the ring so perhaps she should stroke it. It might be a magic ring, and if she stroked it hard enough all her dreams and memories might come back to her; and if they came back to her they might even become real. She could almost taste the ice cream and candy floss, and she could almost climb on the merry-go-round horses. Maybe all she had to do was to close her eyes; to sing; to rub that ring, and then to quietly dream.
“Hopscotch, one to ten, turn around and back again”
She closed her eyes, sang to herself softly, and then, very tenderly, she rubbed her shiny gold ring.
She opened her eyes, but there was no merry-go-round, no ice-cream, and no candyfloss. There was a little boy standing before her though. He was smiling and he was holding out an apple. Judy liked apples, and little boys with friendly smiling faces, and, if she was lucky, he might want to give her a bite of the apple, and even want to join in her game.
“Hello, my names Tommy, I live opposite you ! Would you like an apple, and can I join your game!?”
Judy just looked at him for a moment, and then grinned. It was a big red apple, it was shiny, and a new playmate had come to join her. Perhaps it was summer time after all.
Tommy rested his back on the promenade’s railing behind him, and he watched silently and intently as Judy slowly, and hesitantly, picked out the hopscotch squares on the prom. His mother had told him about the couple some while ago, and said that, one day he would understand what something called Alzheimer’s was, and how people thought when this strange thing occurred. She had also said he was very grown up for his age, and very observant, but he was only seven years old and, as he watched Judy closely, he was confused. She wasn’t playing the game correctly, and that was strange.
The game was hopscotch in name and it meant hopping by nature, yet she moved through the squares very slowly and unevenly, and she didn’t quite seem to know where her feet should go, or how to play the game. Also Edward, her husband, who he had often talked to while Judy was sleeping, was standing close by her, and helping her. Tommy had never heard of anyone being helped out at hopscotch. It was a quick easy game that you played alone, or with other friends around you, but, once upon the Hopscotch grid, it was a game that you played alone!
Edward looked tired and worried and, as he was standing close to Judy it seemed to Tommy that the couple were in a world of their own. That was odd to Tommy as he thought there was only one world that people really lived in, but perhaps he if went over and asked to join them playing hopscotch, he might be able to help them play the game more quickly. If he was really lucky, he might be able to join them in their world that, as yet, he couldn’t fully understand.
“Be nice to people and they will be nice to you” his mother had once told him, so he peeled himself off from the promenades railings and fished out a bright red apple that his mother had given him . Everybody liked apples, especially bright red shiny apples. What if he went over to the lady and offered her his apple? What would happen if he told her what his name was, and then asked her if he could join her game?
“Hello, my name’s Tommy, I live opposite you! Would you like an apple, and can I join your game!?”
Judy looked at him for a moment, took the apple that was out held out before her, and then began to grin.
Edward thought it was lovely just sitting on the promenade bench and watching Judy and Tommy playing together, as just for a moment his time was almost his own. He rarely had time for himself now, for these days life was all about Judy. How was Judy, everyone asked him? How was she coping, they solicitously enquired, and was she having a nice day in the sunshine? Nobody asked about him about how he was feeling though, he seemed to be invisible, and no-one seemed to care.
Nobody asked him about how he coped bathing and feeding her, how he dealt with her senility, anger, frustration, and her constant need for reassurance and repetition. There seemed to be no cure for her increasing incontinence, and there was no guidance as to what he should do when she reacted as if he was a total stranger, or ignored him as if he simply wasn’t there.
He was happy to be her long term carer or care giver, he still loved her and wanted to help her, but he was getting older. There was no relief; no haven, and no-one there to really help them; and he was scared as regards their future to come.
He had got a moment to himself however, so although he felt slightly guilty and selfish, as he always felt when he took time away from her; it still felt wonderful as he watched them play.
Play! That is what he and Judy had done, when they were younger, and before the onset of alzheimers. Edward hated the wretched thing as bit had no voice, mind or body, but with an innate power to nullify all that was good and wonderful within their marriage, it had nearly destroyed a wonderful relationship. It was this cruel and pointless waste and destruction that he could never accept or endure.
Watching friends and relations growing old and dying had never been a problem for the Edward and Judy for they met when they were medical students, and then developed a passion for psychology and philosophy, but this vile degenerative disease was different. It had robbed them both of a wonderful marriage and friendship, and substituted such joys with an unending tide of loneliness, despair, anger, frustration and pain.Once they had kissed, passionately kissed, and danced and shouted for joy as, hand in hand they had giddily cavorted across the immaculately groomed lawns of the university’s quadrangle. That had earned them a ticking of from the College Principal, but it was worth it. They had made themselves dizzy by delving into the minds of the great philosophers, and made love on many a mountain top whilst proclaiming their passion into the fresh clean, vibrant mountain air.
Then they got married.
It was a wonderful marriage, although for medical reasons sadly childless, and maturing together like a bottle of vintage port snuggling up to a top grade round of Stilton, their future as a couple, a wonderful secure and happy future, seemed to open up before them.
Then she began to forget things, and that is when Judy, both and a friend, wife, and lover, had relentlessly begun to drift away.
What was left of such dreams and happy days now. Just an empty battered husk of a partner. Just whispers in the wind, and faded billet doux, course notes and essays, and unread silent dusty books from whence great minds had once proclaimed. Sad voiced ghosts from the past calling to him, tediously repetitive days, an irrevocably broken marriage, and, for both of them, the strain of living with a stranger that, in accordance with the vows that both of them had taken, they were fully meant to know.
Even their faith had been shattered by Judy’s illness. Jesus loves both of you, you are His children and He will always be there to support you, the parish priest constantly reminded them, but what had the pair of them done so wrong as to treated so severely? If He was their Father, then why didn’t He do something to help them, and to support them in such a time of obvious need. The last time Edward had been in church, he had sworn at the priest, annoyed at such pointless, if well meant, platitudes.
Then he had shaken his fist at the crucifix above the altar, denounced God and all His minions, and upon storming out of the church he had slammed the one comforting stout wooden doors behind him. He had later apologised to to the priest in person, but not in the church, and not to a God who now seemed cruel and callous, and, if He was so all powerful, so utterly to blame. Edward knew that he shouldn’t be bitter about the cards that life had dealt them, as through sharing his life with Judy he had experienced a depth of life and love which he always thought would be denied him, but he alone had to deal with Judy. He was exhausted, and, though he still held his joyful love for a woman who once walked proudly beside him, such joy, and his associated memories also brought him so much pain.
Time was passing though, and a screaming seagull ,standing close by him, seemed to chide him for his time away from Judy. “Stop daydreaming,” the seagull seemed to say to him, or “Feed me,” as Edward thought more likely, “But do something practical and keep an eye on the game!” Edward cheerfully stuck out his tongue at the seagull. “Fancy that,” he thought to himself ironically “Fancy listening to a talking seagull !”; but inside he was grateful for such an intervention, as now, his attention was brought back to Judy and Tommy, and to how they were playing their game,
At first Tommy had danced quickly through the squares, but now the pair moved slowly across the hopscotch grid, with Tommy guiding her every step of the way. Very quietly, he sang her little song with her, and very carefully, with a degree of patience far beyond his natural years, he turned her around slowly at the grids apex before she began her long and at times, tortuous trail home.
No other words were spoken or sung , for an older language coursed between the pair of them, and it had no need for poetry or prose. It was like watching a young wild animal guiding an old matriarch though a thick and entangled forest. Half blinded by years of suffering and hardship she had forgotten the way through the forest now, and her feet were constantly getting caught up in the undergrowth, but she had the help of a younger pack member now, and she was being carefully shown the way to go.
It was true that Tommy didn’t really know about Judy’s condition, but through that apple, that open smile of friendship, and a simple game of Hopscotch it was clear that something very wonderful was beginning to unfold. Was this the start of something special, Edward wondered, and might this be the start of a new and infinitely better day?
He sighed to himself however, and pulled out the letter that he had jammed into his pocket earlier on that day. There were few tides for turning in his experience, and few days delivered much beyond high winds, foggy confusion, and rain. The letter still glared at him however, it still bellowed that it was urgent. Maybe he had better open it and then see what the letter said inside.
We have been advised of your wife’s condition and of your ongoing care difficulties and commitments through social services. Please see our enclosed range of services. If we can help you in any way, please let us know.”
Helping hands, a private care company. That’s where the letter came from. Home care, it said, within an enclosed leaflet, hourly care, respite, and still so much more. He looked up from the letter and over towards Tommy and Judy. It would take time, it would take money, and, if both Tommy and Judy wanted to do so, many more games of hopscotch, but perhaps there was a God after all. Wryly smiling to himself he wondered, for one glorious second whether God would accept credit cards or hire purchase agreements, but then his smile faltered and eventually faded away. He had no credit card, or access to a hire purchase agreement , as apart from his small state pension he simply had no money to spare.
“There’s time enough to worry about such things”, his Bank Manager had once cheerfully told him, but the manager couldn’t have anticipated Judy’s Alzheimer’s, or Edward’s premature retirement. Now there was too little time to get any real financial package organised, and though Edward tried to hide it from Judy, deep down he was both worried and scared. It was nice of Social Services to contact him though, but it would have been even better if they could also pay the £700/week average care home residential bill!
That, if it ever came to fruition, was in the future though. Judy needed to rest now; otherwise she would soon get tired. If she tired she got agitated so he tucked the letter away carefully then took out a book from a bag that lay by his side. It was Judy’s day book, and he hated it with every cell in his body, as it was a cruel and constant reminder of her illness, and the wasted years that had so painfully destroyed their lives. It was vital book however, for both of them, as with brightly coloured pictures and colour coded prompts and instructions it was often the only way that he and Judy could communicate, and he carried it with him every minute of their waking day. He raised himself from the bench slowly and crossed over to stand beside her. He smiled, took her hand, and the held the book and his wristwatch before her.
“Look Judy, the big hand and the little hand on the clock are saying its three o’clock now. Look at the book Judy. At three o’clock we have a rest and a cup of tea and a biscuit. Come on my love, it’s time for us to go!”
Judy looked at the book and the shiny watch that Teddy held in front of her. The watch and its funny little hands seemed to be silent, and on certain days they meant nothing to her, but she knew that book, it was an important book, and a book that had to be obeyed. It was Judy’s book, and her name was Judy; and it had a bright orange cover with a big smiley face on it, and pretty pink flowers and yellow butterflies around the sides of each page. This page said three o’clock in bright red letters, and there were three words of, rest, tea and biscuits, that were clearly written in blue. Red meant it was time for her to do something, and blue told her what she had to do, but she wanted to carry on playing Hopscotch, she wanted to eat her apple, and she wanted to eat it with Tommy standing by her side.
She had to do what the book said though. She had been told that many times by the white coated man and Teddy, so very slowly, and very reluctantly, she allowed her herself to be guided away.
She still looked over her shoulder though; she still smiled at Tommy; and Tommy still stood waving at her from within the squares.
If the sun was shining she might play Hopscotch tomorrow. Hopscotch was written in blue letters so she had to play hopscotch, and if she was lucky, Tommy might even come and play with her and stand by her side. She bit a large chunk out of the apple that Tommy had given her. It was sweet and succulent, and she felt the juice dribbling between her fingers, as well as an apple pip that slowly slipped over her chin. It was summer again, the sun was shining, and she had just had a lovely game of Hopscotch. If she closed her eyes, and listened very carefully, she might even hear the sound of the fair.
“Hopscotch, one to ten, turn around and back again”
Tommy walked back slowly along the now deserted prom. As he walked he gaily sang the song that Judy had just taught him; and he thought about Judy and Edward and the game that had just been played. His Grandma, according to his mum, had also got a little bit of this thing called Alzheimer’s and, like Judy, she was also getting a little forgetful. She wasn’t quite as childlike as Judy, but maybe she might like to come along one day and play hopscotch with them. It seemed to Tommy that everybody should play Hopscotch, especially when it was sunny, and it was hopscotch on the prom.