Tag Archives: dementia

Upside-Down Apple Pie

Of course, it all started long before that. It was just that the ‘upside down apple pie’ incident was the first time anyone really noticed, apart from me.

I suppose it all began when an old man dropped dead in Chard High Street. Imagine. Christmas Eve, 2001. A chilly, grey afternoon. You’re out buying your last minute bits and bobs, admiring the effort the town council have made with this year’s Christmas lights, then suddenly – bang. Goodnight Vienna, just yards from the greengrocer’s and those nice-looking Brussels sprouts for tomorrow’s turkey dinner.

They did their best, the bystanders. CPR, Nellie the Elephant and all that; called the ambulance. Then realised he was probably dead before he hit the pavement.

Hours later, when it’s almost dark and he hasn’t come home, Mother and I made the sad journey to Musgrove Park mortuary to identify the body. The body. Like it had ceased to be mum’s best friend; honorary grandfather to my children.

That was fifteen years ago now, and ever so slowly Mother has slipped away too; in by no means as dramatic a fashion as Don. No, Mother has decided to take a more circuitous route to oblivion whilst remaining defiantly alive, and, from time to time, literally, kicking.

Alzheimer’s is a funny disease. And by that I don’t mean knock, knock jokes and banana skins. I mean it develops in fits and starts; or tits and farts as Mother might describe it in one of her rebellious moments. It cruises along, like an old jalopy, clumsily backfiring on a level road, then free-wheeling downhill, taking a sudden turn down a bizarre one-way street…

It was little things at first. The nouns went. Mother, helping to wash up and put away after Sunday lunch, couldn’t recall the word ‘spoon’. We laughed it off as a momentary lapse, never guessing for one moment that the momentary lapse would grow bigger and bigger for at least the next fourteen years.

We all treated it lightly, to begin with. Stories would be repeated, every Sunday lunchtime. Mother would regale us with tales of how, once the cabbage was cooked, she would drink the cabbage water because of its health-giving properties; a story guaranteed to make my children shudder. Of the time she went to the dentist, and the dentist asked her to take out her teeth prior to examination, to which she replied ‘I’d have a job, they’re all my own’. This anecdote was always accompanied by Mother baring her teeth in a somewhat frightening fashion, as if to prove the veracity of her statement.

Ever so gradually we entered the Times of Weirdness. Taking Mother for an eye test, wondering why she was reading out totally different letters to the ones on the chart, and then realising she was in fact reading the words ‘FIRE EXIT’ above the door opposite. Having dinner together, and trying to stop Lily from pouring her cup of tea over her fish and chips because she thought it was gravy, Thereby ably demonstrating the alternative meaning of the phrase ‘out to lunch’. And the apple pie. Mum’s pies and puddings were legendary. She was a real pastry princess, a queen of puddings. I only have to utter the magical phrase ‘chocolate pudding with chocolate sauce’ for my brother and I to start drooling. So when one Sunday she somewhat apologetically brought our family of five an apple pie with no pastry and consisting of one lonely apple in a dish, saying that she ‘couldn’t remember what to do’, I knew something was seriously wrong.

Over time, the stories became muddled. Fictions were introduced as fact, so that her early war years taking her youngest sister for walks in her pram became tales of how she looked after children in London during the war, when in fact she was a land-girl in the foreign country of rural Somerset.

And then there were the times when I really couldn’t be sure what was real any more. Common enough, I suppose, when someone tells you something with such confidence in their own recollection.

This story, though, was different. I have vague memories of Mother telling me this one when I was a teenager, and the circumstances are particularly tragic.

The Tale of Two Boys Drowning
Once upon a time, many years ago, a little girl went to stay with her grandparents on the Kent marshes. It was the summer holidays, and the weather was hot. Lily, for that was the little girl’s name, wandered down the dusty lane where she met a boy from the village. He was a few years older than her, but they passed the time of day and decided to go for a swim in the river.
Lily knew she wasn’t really allowed to take the path through the gate, but it was a shortcut and she was with a big boy, so she thought her grandparents wouldn’t mind.
They went splashing into the river, Lily squealing with delight at the sharp coldness of the water. But Lily was a strong swimmer, and soon she and the boy were far out from shore. She wasn’t sure what happened next, but the boy was suddenly caught up in the tide, and was carried downstream. He shouted for help, but Lily knew that if she followed, she would be swept away too. So she headed for the shore.
Dripping and gasping for breath she looked back at the fast-flowing river. The boy had disappeared. Lily searched desperately around for a grown-up, but they were all out working in the fields far away. She raced back to her grandparents’ cottage and hammered on the door, but no-one was there. Later, when the grown-ups returned, she was too frightened to say anything, convinced she would be told off for breaking the rules and going through the gate. The summer ended, and Lily went back home to her parents. She had told no-one about the lost boy.

Fifty years later, her teenage daughter’s boyfriend drowns in another tragic accident. All that Lily can say is ‘Why didn’t God take me instead?’ Her distraught reaction to the event is noticeably extreme; her daughter, struggling to cope with her own grief, finds her mother’s reaction strange and overwhelming. Even at the funeral, instead of being allowed to mourn, she is instructed to look after her mother.

The boy lost in the river was never mentioned again, until Lily was an old, old lady and no-one could be certain if the story was true or an invention of old age and confusion.

14th March 2015. My turn this week coincides with Mothers Day eve. On our fortnightly visit to Asda for lunch, mum remarked that she should be with Colin. ‘After all’ she said ‘I’m Lily, and he’s Colin. I should be with him. I don’t know why he wants to live somewhere else’. My brother Colin is 64 years old, and left home in 1969. It’s a strange world, Alzheimer’s, as I have observed on many occasions. Mother is vaguely aware that Colin is her son, but she thinks of him more as her husband.

I do a quick recce of the house in case of urgent cleaning up requirements, but there is nothing that can’t wait until we get home. My brother, of course, is still to some extent in denial that mum even has ‘toileting issues’. When I rang him to report the impressive cow-pat which mysteriously appeared in the conservatory two weeks ago, heralding the onset of Mother’s double incontinence, he asked if an animal could have wandered in and done it. ‘What? I exclaimed ‘And neatly closed the French windows on its way out?!!’ Even he had to admit that was a bit of wishful thinking.

I park mother with the Asda security guard while I fetch a supermarket trolley from outside. I feel a fleeting moment of guilt at leaving her for 30 seconds, but it’s easier than trying to negotiate our way out together and fight our way back inside again. Fortunately when I return she is still where I left her, and the security guard confirms that yes, indeed, she had been causing all sorts of havoc while I was gone. Mother finds this hilarious. It’s lovely to see her laugh. She has the same fits of giggles as she did thirty years ago. That, at least has not altered.

We don’t play ‘Name that vegetable’ today. Or sing ‘Oranges and Lemons’. In four weeks, she has completely forgotten ‘carrot’ and singing is another skill that has been unlearned. Instead we wander around, with Mother precariously in charge of steering the shopping trolley, and coo over the baby clothes like expectant mothers. I help her feel the fabric; the lace, velvet, fur and netting. We talk about how uplifting it is to see bright colours, and small children. We admire the little girl’s dresses hanging on display. I say ‘Of course, I never had a little girl to dress up’. ‘Neither did I’ she replies. It’s as if the child that I was had never existed, which I suppose is what she wished for my entire childhood. I’m OK with that; and yet it’s sad for us both at the same time.

I make the mistake of suggesting she tries on a pair of slippers. She clings on to the shopping trolley like a shipwrecked sailor to flotsam. Try as I might, she cannot negotiate letting loose her hold or sitting on the stool provided in the shoe department, and I can see that she’s getting frightened and tearful at this new impossibility. I abandon the project before she gets too upset, and we go back to the baby clothes aisle to cheer ourselves up.

When I take her home, she sits, mesmerised by the Six Nations on TV while I do a quick clean-up of the bathroom. When I reappear five minutes later, she has forgotten I’m in the house. We have reached, I think, goldfish moments. I leave her Mothers Day card unopened on the table. Perhaps the early evening carer will help her open it. Mother won’t know who it’s from.

850,000 people in the UK suffer from Alzheimer’s. Add to this the family, friends and carers who also share the effects of the condition, and that’s a lot of shared collective senior moments. It’s the equivalent of the whole of Norfolk living in a continuous state of Goldfish Moments. Swimming endlessly around and around their East Anglian goldfish bowl, every thirty seconds discovering something new.

850,000 people in the UK suffer from dementia. Add to this the family, friends and carers who also share the effects of the condition, and that’s a lot of shared collective senior moments. It’s the equivalent of the whole of Norfolk living in a continuous state of Goldfish Moments. Swimming endlessly around and around their East Anglian goldfish bowl, every thirty seconds discovering something new.

No, I haven’t misread my script. That last paragraph lasted exactly thirty seconds. And then repeated itself as if it was a new thought. It’s not long, is it? How very strange, to the observer, to realise that, from literally one moment to the next, the connections between those nerve cells have been lost and the moment has not only passed but been deleted from the memory. It must be exhausting to experience. Imagine climbing Mount Everest, over and over again. The mind-numbing hit of that view from the top, knowing with absolute certainty that it’s a vista you have never seen before. How emotionally tiring that is. Then imagine experiencing that, all day every day, roughly every thirty seconds. And that’s without adding the effects, more often than not, of extreme old age. My mother is 94, and every thirty seconds she climbs Mount Everest, and takes in that mind-blowing view.

Reading back over what I have written, it shocks me that these events happened as recently as six weeks ago. Lily’s decline increased so rapidly, and once Alzheimer’s had taken away all those things she had once cognitively learned, Alzheimer’s then deprived her of all those innate skills – speech, movement, eating, drinking and swallowing.

Once we could no longer nourish her body, we knew we were reaching the end. Moved to a specialist Dementia care home, Mother’s lucid moments were few. We had a momentary breakthrough with a home-made memory book, pictures of family and pets. Five days later, she was an empty shell. I make what I know will be the final trip down to Exeter to see her. Her elderly siblings have visited, said their goodbyes. My brother cannot bear to stay any longer. He drives our aunts to the railway station while I sit with mum in this anonymous room, a room for transient strangers, just passing through.

Someone has left a radio, loudly tuned to the local radio station. I suppose they didn’t want mother to feel alone, but to me it seems brash, intrusive, impersonal. I turn the radio off, and sit beside my mother. The nurses have dressed her in amethyst blue, matching her eyes. She is lying on her back, eyes half-closed, breathing heavily. Her hair is brushed back, revealing a high forehead. Her face has a suntanned pallor, her cheekbones standing out from shrunken skin. In profile, she resembles an Egyptian queen awaiting burial. She is quite beautiful.

I have brought a book with me. Alice in Wonderland. Mother’s world has been irrational for so long I decide the story would make as much sense to her as anything else, so I read aloud, so she can hear the sound of her child’s voice, even if she is incapable of understanding the words. When I reach page 9, I falter. Alice is about to drink from the little glass bottle, and eat the magic cake. My mother has not eaten or drunk for ten days. Her body has starved itself to death. Even the cancer which had slowly spread across her face has disappeared entirely in the past 24 hours, as if knowing that it has leached all the nourishment it is going to get from this frail old body. My voice breaks. I want my mum to drink from the little glass bottle. To eat some magic cake that will make her all better. To bring back my mum who in reality disappeared fifteen years ago.

I take a break from reading, and sing to my mum instead. An old song, from when she was young. Whether it was the effect of my singing or just bad timing, mum begins to moan in pain. I stop with the singing. The nurse comes in, and we agree it is time for morphine. I ask the nurse to call my brother, to tell him to get his ass back here or he’ll regret it for ever.

The palliative care nurses arrive, bringing death with them in a hypodermic. They are kind, and practical. They encourage me to hold mum’s hand, to talk to her, to get close. I despise what they are doing, and yet at the same time I am grateful to them for easing the pain. Mum’s and mine. After the nurses are gone, my brother arrives. We wait, and time stands still. Mum’s breaths grow further apart; the silences increasing. Just when we think it’s over, she breathes again. Then, nothing. ‘She’s gone’ my brother says. Mum’s eyes are empty, staring into nothing. I try to close her eyelids. Mum breathes again and we jump, have a sudden, inappropriate fit of the giggles, hoping mum couldn’t hear us killing her off five minutes early. Moments later, Lily dies, held close in my brother’s arms.

The dead always seem so wise to me. The friends I lost when young seemed in death wise beyond their years. So too Lily had transcended those Goldfish Moments and in her passing seemed to recognise better than all of us, the mysteries of making that transition. I hope that for Lily there were moments of clarity in those last hours; to hear the music, see our faces and imagine following Alice, tumbling headlong, into Wonderland.

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