Lockdown was hard for many of us. For those living with dementia, it was terrifying. Dolly Busby spoke to one woman about how she coped as the enforced isolation accelerated her husband’s decline…
September 1992, Donegal versus Dublin.
Diana and Malcolm find themselves in a fuggy pub in Ireland, lost in a crush of cheers and fist pumps as the two rugby rivals slug it out on the small screen in the corner.
Malcolm is screaming his head off, he’s Liverpudlian, but he can get in the spirit of things.
Donegal never win, apparently.
Amid the roars a woman turns to Malcolm.
‘You’re a very happy man,’ she says.
‘Why shouldn’t I be happy? I’m in love!’ Malcolm shouts back gesturing to Diana as he does.
The woman glances at Diana beaming behind them. Diana is very beautiful.
The woman turns back to Malcolm and says, ‘Well you should do something about it, or she won’t be hanging around for long.’
Malcom gets down on his knee right there and then.
Another wave of joy rips through the pub calling for ‘Champagne!’
‘We haven’t got any!’
Pints of Guinness all round then.
St Lucia, September 1994, the pair are married in the eye of Storm Debby.
Only those who had been on the coach to the hotel attend. Strangers. But that doesn’t matter to Malcolm and Diana. For both, it’s their second marriage and they just want it to be a simple affair.
It’s 2015, the pair celebrate their 21st wedding anniversary.
Since St Lucia, a modest house in Greater Manchester has played host to many happy memories for the two.
Diana’s surgery is based on the ground floor, she’s still operating as a facial paralysis physiotherapist.
They’ve had no new children but those from their first marriages visit often enough.
Marital bliss.
It’s not a big house and they know it inside out but, this morning, Malcolm got lost looking for the washing machine.
The same thing happened last week, too. And Diana is worried.
He’s been waiting at the reception for Diana.
Malcolm’s brilliant knowledge of shortcuts has begun to lead them down longer routes.
It’s Vascular Dementia.
The house, and the surgery, go up for sale.
It’s 2020. Diana is now 78 and cares full time for Malcolm, also 78, in their little apartment in Chorlton, Greater Manchester.
But lockdown is about to press fast-forward on Malcolm’s dementia.
At the beginning of lockdown, Malcolm could wash himself, dress himself and button up his shirt. Suddenly he’s walking into the kitchen with his dressing gown on upside down.
Isolation was tough on most couples.
But stuck in a small apartment – caring full-time for the person you love who is rapidly forgetting everything – with nowhere to escape, is unimaginable.
Malcolm follows Diana everywhere.
Stealing away for a quiet moment, Diana opens the curtains and windows, letting fresh air and sunlight breathe into their tiny flat.
She could spend all day here, reading her book in a peaceful breeze, while the mid-summer heatwaves bounce off the tarmac from the deserted streets below.
But before she has time, Malcolm comes wandering in.
‘Oh no love,’ he says as he shuts all the windows and curtains. ‘Someone could be looking at you.’
‘Me, I hardly think so Malcolm’ Diana scoffs, but that’s her quiet moment gone.
Malcolm’s not paranoid but dementia does play tricks.
It could be worse. Diana’s friend Mary’s husband won’t go on Zoom because people spy through the boxes.
For Malcolm, lockdown Zooms and the television keep the house busy: “Oh, we had our Carl here earlier.” Malcom says, or, “Yes, Hugh Grant comes here quite a lot and Judi Dench pops in.”’
Malcolm is never alone in lockdown, visitors are in and out, but Diana is.
Toast is found in the sock drawer; dishes are shoved into the bathroom sink and lights are being flicked on and off at all hours of night.
Reverse aging, a Benjamin Button effect, Malcolm is like a child, though forgetting not learning.
Glimmers appear when Diana and Malcom talk about the past.
Malcolm can remember their life before his diagnosis. How, when he first saw Diana, he knew she was going to be someone important in his life.
Malcolm keeps Diana going. He’s got a good sense of humour, uplifting and positive and whenever she breaks down saying, ‘Oh I can’t cope with this’ Malcom just smiles and says, ‘Yes you can, you’re exceptionally good at coping with this.’
It’s 2021, Diana is sat in a café, struggling.
She fears another lockdown.
Malcom’s not going into care, Diana’s adamant. Caring for Malcolm is her job.
‘Sometimes, I think to myself, what do you want?’ Diana says.
‘I know I like him there; I don’t want him not there. I can’t say, “Oh I want him like he was five years ago”, you know, I haven’t got that choice. But you’ve got the choice of how you live each day.’
Together Dementia Support has been a lifeline for Diana.
Founded over seven years ago by Sally Ferris, Together Dementia Support is a volunteer group providing comfort for those both suffering with, and caring for, dementia.
Weekly meetings, groups and activities are open to all, with day trips, meals and even massages. Their mantra – no one should be alone.
Sally says, ‘I felt like there was nowhere for people who have been given this awful diagnosis to go.
‘Nowhere for carers to find a support network and be creative, sing and have a laugh. People living with dementia often flourish in their friendship groups where they are encouraged and celebrated.’
Community support is a distant dream for some suffering with dementia.
Services are volunteer led and funding is low, especially in more isolated areas, particularly the countryside.
Exmoor is one such area.
Diana Matais lived in a little cottage in Wedden Cross, a secluded village hidden beneath the Quantock Hills.
Diana also suffers from Vascular Dementia, and, like Malcolm, lockdown accelerated her deterioration.
But unlike Malcolm, she had no one.
Simulated only by the radio, Diana searched for human contact, but all doors were shut. Government COVID restrictions in 2020 ensured no mixing between households.
Hours of her days were spent wandering up and down the isles of the village shop before, politely being asked to leave.
Diana couldn’t understand.
Her short-term memory meant masks were a mystery and lack of interaction was detrimental.
Food rotted, her dog grew hungry, and Diana fell victim to multiple scams – her house was fitted with double glazing twice in the same month.
She had no one. Having refused medication – care workers, psychiatrists and memory specialists were forced to give her up.
One stormy night she was found outside clutching her handbag in her nightdress, scrubbing at marks on the wet tarmac.
Diana was admitted to a care home.
No one could visit her because of COVID restrictions and the woolly impersonal atmosphere of the home acted as a catalyst for further decline.
She lives now as a schoolteacher, the nurses are naughty children, and she buzzes around the home with a clipboard ensuring everyone is present and correct.
Her stepdaughters watch her from the window.
She giggles and dances with a fellow care resident and tells everyone her mother is annoying her.
Diana is a happy child again.
Perhaps, if Diana had a place to go, like Together Dementia Support, she could have held on a bit longer.
But Diana doesn’t seem to care, she has her own community now – one that exists only in her mind.
Diana and Malcom still attend Together Dementia Support events. It gives Diana a break and she loves seeing Malcom joking with other people. “I’m like, wow, where did he come from? He’s back” she says, “that’s why I go every week.”
Members of the group ask after Malcom.
“Is he coming this week? He’s such a happy chappie.”
“Oh, I have to see Malcom!”
Diana blushes with pride.
‘You know, I don’t always get that Malcom at home’ Diana says. ‘Someone from the support group the other week asked, when did you first notice you had a problem? And he said, “I haven’t got a problem!”’
Diana shakes her head, “You know, denial, denial, denial.”
Caring for Malcom is tough, it’s full-time job and Diana explains that it’s different when it’s a spouse, you haven’t got anyone to come home to.
Diana has brief moments of relief. Like when the group sings Bob Marley’s ‘One Love’ and she can close her eyes and sing along.
When asked how she does it, Diana simply replies, “Well, I love him, I suppose.”
