‘It’s a vile disease but Mum’s dementia did have one silver lining’: All her life Madge had been plagued by anxiety – but then illness transformed her… and brought her closer than ever to her daughter
- Lynne Wallis first noticed something was wrong with her mum, Madge, in 2004
- After being diagnosed with dementia, Madge’s personality began to change
- On one occasion at her old people’s home, manager told Lynne that Madge had turned up to breakfast ‘a bit squiffy’ – even though she had never been a drinker
- Madge also started using what she once would have called ‘rude words’
It was a glorious spring day and I had taken my 86-year-old mother out for our weekly lunch together. As always, Madge – she was never called anything else – was the epitome of grace, dressed in a tasteful blue cotton dress.
But toward the end of our starter, she put down her cutlery, grabbed her soup bowl with both hands and hoisted it to her lips.
‘Mum, what are you doing?’ I whispered furiously.
She drained the bowl, put it back down on the table and replied gently but firmly: ‘If it’s good enough for the French, it’s good enough for me.’
I laughed out loud.
Earlier, I’d mentioned that guests at a French wedding I’d been to drank from their bowls. It was hilarious but also unexpected because, believe me, this just wasn’t how Mum behaved.
Indomitable spirit: Madge dances with her daughter Lynne during a party at her care home. Lynne said: ‘Mum’s problems first became apparent after my father’s death from kidney cancer in 2004. About a year after he passed away, it became clear she was neglecting herself’
A working-class woman with aspirations, she had more than a shade of Hyacinth Bucket – pronounced Bouquet, of course – in her. Friends even called her ‘Queen Madge’ and ‘Her Madgesty’ on account of her Royal wave.
Growing up, she’d tell me off for using my soup spoon incorrectly. ‘Push it away from the bowl,’ she’d say.
She never swore, considering it a poor reflection on a person’s character, and cared deeply about what others thought of her. Yet here she was, that day in 2009, slurping from her soup bowl. I’d never seen her so spirited and uninhibited. The reason for this extraordinary personality shift? Dementia.
Unarguably, it is a devastating illness that can rob sufferers of their wit and warmth. But for Mum, it did the opposite.
Once nervous and shy – often overwrought – all that evaporated.
Dementia freed her from the worries and pain that had burdened her throughout her life. She was able to finally let go, throw a lifetime of caution to the wind and, as the mindfulness gurus would say today, live in the moment. It was as if she’d been let out of prison.
SHY MUM BECAME EXTROVERT MUM
Looking back, Mum’s problems first became apparent after my father’s death from kidney cancer in 2004.
About a year after he passed away, it became clear she was neglecting herself.
She wasn’t eating: I’d take her meals and make her cups of tea, then find them untouched when I visited a few days later. And I could see that she was losing weight.
‘Queen Madge’ at home with Snowy the cat in 1962. She was admitted to a residential mental health unit attached to her local hospital in Woolwich in 2005. It was there that Lynne was given the news that Madge had dementia
Mum was always one to have the house just so, but it was becoming a bit dusty and unkempt.
Then, one day in September 2005, I arrived to find her on the floor – she was confused about how she’d got there.
I called an ambulance and doctors later said she was severely dehydrated.
She was admitted to a residential mental health unit attached to her local hospital in Woolwich.
And it was here I was given the awful – but not entirely surprising – news that she had dementia.
Over the next six months, she began to eat and her health improved. Indeed, by March 2006, she was well enough to move into an old people’s home.
And then the new Madge began to emerge. One morning, I got a call from the manager at the home asking me to come in.
‘Madge turned up to breakfast this morning a bit squiffy,’ she told me.
I was puzzled. Mum had never been a drinker. She might enjoy a gin and tonic while cooking Sunday lunch, or a couple of glasses of wine around Christmas, but that was it.
When I visited Mum later that day and asked her about it, she replied: ‘I fancied an amaretto. I was thirsty. Is that a crime?’ Of course it wasn’t. But it wasn’t normal either.
Mum, I discovered, had entered the breakfast room with a ‘Whoopee!’, waving her walking stick triumphantly in the air.
Pre-dementia Madge – a shy type who preferred to blend in rather than stick out – would have grimaced at this kind of behaviour. But that was just the start of it.
She would often pull faces behind care home staff she didn’t like, and roll her eyes if someone said something she didn’t agree with instead of nodding politely, as she had done all her life.
And there was her increasingly colourful language. ‘It’s OK, they’re all deaf,’ she replied when I told her off, fearing that she would offend the other residents.
Mum had lost her inhibitions about using what she once would have called ‘rude words’. Now she took great pleasure in using them, and being ‘naughty’. It was as if her inner rebel was coming out.
She had been so conventional, so keen to blend in, and now another side of her was unleashed.
DEMENTIA FREED HER FROM PAIN OF GRIEF
As the years wore on, it was hard to grieve the old Madge when the new one was so joyful and full of fun and laughter. Soon I began to think of my mother almost as two different people.
Before dementia, she was always anxious and worried about everything. She was never spontaneous or willing to take risks.
I am certain this was linked to the heartbreak she had experienced throughout her life. It began with the loss of her father, a First World War veteran, to suicide in 1943.
Looking on the bright side: Madge with Lynne in her daughter’s open-top car. ‘Sadly, it wasn’t just the bad memories that dementia wiped out. The happy ones were eradicated too,’ said Lynne
Two years later, her beloved elder brother Jack perished in the Battle of the Atlantic.
Her only son, my brother, died of a drugs overdose in 1980. But like many of her generation, she didn’t dwell on hard times. After all, everybody else was going through them too. She would just say: ‘Life can be tough but we carry on.’
Once, during a difficult time in my own life, I cried while talking to her about it. ‘It won’t help you now, the tears,’ she declared. ‘They won’t make any difference.’
I still think about that.
She must have shed so many tears, and had to bear so much pain and still managed to ‘carry on’.
But that all seemed to just disappear under the cloak of dementia. It would only be when I would mention my dad, Jack, or my brother that she would become sad. So I stopped mentioning them. It seemed kinder to allow the traumas that haunted her be laid to rest.
One of the most noticeable features was the renewed sharpness of wit. Mum’s brain was slowing and she struggled to focus on crosswords or complex TV drama plots. But she became the queen of quips. A clarinet player at a jazz gig I took her to revealed he had recently played at a nudist club.
‘What did you play?’ asked Mum, loudly. ‘Cheek To Cheek?’ – referring to a classic sung by Fred Astaire in the 1935 hit film Top Hat. The room erupted with laughter.
Of course, there were difficult moments for her too. She became incontinent, and cried every time she was ‘caught out’. But the blessing was it was soon all over and forgotten about.
I LEARNED FROM MUM TO LIVE FOR TODAY
One morning, after I’d moved my mother to a care home near me on the Kent coast, I even took her to watch me undertake one of my regular early morning swims in the sea. Sitting in her wheelchair on the concrete promenade, she watched intently – just as she had done when I was a child.
Back then, she would tell me to be careful, worrying that I’d be swallowed up by a huge freak wave.
She had a fear of water fuelled by her brother Jack’s wartime death at sea.
Now it couldn’t be more different. Relaxed and uninhibited, she waved at me enthusiastically from the shore. Afterwards, we sat in my open-top car and tucked into fish and chips.
Within minutes, the heavens opened and a light shower turned into an unexpected downpour.
Try as I might, I couldn’t get the roof back up, leaving us both sopping wet. Throwing our heads back in unison, we laughed hysterically until the skies cleared.
‘We’re two crazy chicks,’ my mother joked, her wet curls stuck to her forehead. Then, with her beaming smile, she added: ‘It’s all an adventure.’
It is one of my most cherished memories of my mother.
And yet if it hadn’t been for dementia, it may never have happened at all.
Sadly, it wasn’t just the bad memories that dementia wiped out. The happy ones were eradicated too – just days after an event like this, I’d talk about it and she wouldn’t know what I was talking about. But, drawing on my mother’s new-found appetite for enjoying the present moment, I tried to do the same. After all, the diagnosis was not the end of her life, but a new start of sorts.
HIGH-SPIRITED TO THE VERY END
Mum outlived doctors’ predictions. Instead of surviving just two or three years after diagnosis, she lived for 14.
I wonder if the happy-go-lucky attitude she acquired had something to do with it.
Pre-dementia Madge would have been frightened of what was to come, endlessly worrying about me, or spending too much time dwelling on things that she hadn’t done in her life. But as the inevitable edged closer, and even when she’d lost the ability to speak, she remained in good spirits.
On her last day in March last year, following a stroke two weeks earlier, she was still shoulder-shimmying in her hospital bed as her favourite music, Frank Sinatra and Ella Fitzgerald, filled the room.
When her body was finally close to giving up, she squeezed my hand, shrugged her shoulders and winked. I knew what she was saying. ‘I love you, it’s been good, but now I have to go.’
Dementia robs sufferers of so much dignity, of their memory and lots more. But for Mum, it was OK. And for that, I consider both of us lucky.
Yes, it’s frightening – so savour every day
By PROFESSOR JUNE ANDREWS, DEMENTIA SPECIALIST
Dementia frightens most people. Unlike other fatal or life-threatening illnesses, it doesn’t only damage someone’s physical health, it can really change their personality.
It is, without doubt, a destructive disease – and a case like Madge’s is unusual.
But I’ve known many people who have found the diagnosis liberating. They’ve made a conscious decision to live as well as possible, and drawn up lists of things that they’ve always wanted to do.
For others, an early dementia diagnosis is a wake-up call. It’s important to get your affairs in order, and then a good life can go on – in many cases for years.
I always tell patients: Don’t switch off.
Carry on doing the things you enjoy and do them for as long as you possibly can.
For many with dementia, a personality change isn’t a deliberate choice but more due to the physiological effects of the disease itself.
The part of the brain that governs inhibitions can be damaged, and this can change the way a person behaves.
Some experience mood swings that can leave them angry or sad. For others, it can mean they’re unusually happy, at least part of the time.
In rare instances, I’ve known patients who have found a new freedom of expression that they were too shy to exhibit before.
Dementia, for a while at least, gave them a fresh appreciation of life, totally unfettered by the expectations of others. The shackles were off.
Of course, this disease only gets worse and, ultimately, all patients will be profoundly affected.
But your world won’t stop turning with a diagnosis.
It’s time to savour every day, even if you never did before.
Dementia: The One-Stop Guide, by June Andrews, is published by Profile Books, priced £9.99.
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