Mavis

Adapting after a dementia diagnosis to be as happy and active as possible

With her family’s support since her dementia diagnosis, Mavis remains lively, involved and always ready for a dance.

In a faraway kitchen, the women are grating vegetables, chatting together and looking out of the window onto a lush growth of banana plants. The boys are scooping coconut from shells. A lovely meal is on its way. 

Mavis, a smiling 81-year-old, is sitting close by, watching on, loving every moment of day-to-day life in her Jamaican homeland. 

In fact, she’s on her sofa at home in Denton, Greater Manchester. Her daughter Margaret, known as Maz, has found a YouTube channel for tourists and it’s being played on their large TV screen, reminding her mum of her old life in the Caribbean. 

‘Is that cassava they’re cooking?’ asks Neville, who’s 82, Mavis’s husband of 60 years. 

‘No, sweet potato, for sweet potato pudding,’ Mavis corrects him. She’s glued to every detail.

Maz and Mavis

Playback 

This cinematic reminder of Mavis’s early life is one of Maz’s brainwaves. She’s the eldest of the couple’s four children and now cares for her mum full time. 

‘Something else Mum loves is when I video her when she’s outside and then we play the film back on the TV for her to see,’ she says, when asked about her other creative ideas. 

The Caribbean cooking footage ends, and reggae fills the room. Music is another big aspect of their lives. 

‘I love reggae, Billy Ocean, calypso…’ says Mavis. Nothing can stop her dancing around. 

Maz says this is the only positive side to her mum’s dementia, as Mavis used to be much more reserved. 

‘Now she talks to everyone, even people she doesn’t know. She’s so much freer than she used to be. She didn’t use to party or dance. Now she’s come out of herself. Sometimes she even dances in Morrisons when we go shopping.’ 

Maz takes advantage of her mum’s liveliness to help keep her fit. 

‘We do the twist together down to touch the carpet, and we take it in turns to do kung fu kicks. Mum has always been competitive, so we turn the exercises into a competition and a game, played to music, to keep her muscles strong. 

‘We’ve all had to adapt, and Mum’s so lively now she forces me out of my own comfort zone. I’m more of an extrovert because she is. I’ve had to come out of my shell too.’ 

Years of love 

Mavis came to the UK at the age of 15. A few years later she met Neville, also from Jamaica, at the party of a friend of a friend, who turned out to be Neville’s auntie. 

Mavis kept him at arms’ length, though he remembers taking her to the cinema and wooing her with chocolates. When he was 21 and she was 20 she agreed to marry him, and the couple settled in Tottenham, north London. 

‘She played hard to get,’ laughs Neville, ‘But we are in love now as much as we ever were. When we wake up in the morning I give her a kiss like I did 60 years ago, and she tells me how much she loves me and kisses me good morning too.’ 

At first Mavis worked for the Pools Panel, checking pools coupons. Neville worked at a soup factory, then at the post office. 

Eventually they moved up to Greater Manchester to be near family, and Mavis loved working as a nursing assistant in Withington Hospital, alongside her sister-in-law. 

‘I looked after a mixture of patients and loved coming in and helping,’ says Mavis.

Mavis and Neville

Diagnosis 

When Mavis and Neville retired, they especially enjoyed travelling. It was while Mavis was visiting Jamaica that her son noticed something wasn’t right. 

‘This made me think of something I had ignored,’ says Maz. ‘A neighbour had come to stay with them at Christmas and Mum disappeared. 

‘I went to find her, and she said, “There’s a strange woman in our house. I don’t know who she is.” I said, “Mum that’s your neighbour.” I thought this was because she’d had a couple of Christmas drinks.’ 

So they went to the doctor and in 2016 Mavis was diagnosed with Alzheimer’s and vascular dementia

‘The diagnosis is so important,’ says Maz. ‘You just need to know what’s happening.’

Groups and trips 

In many ways the family has to cope on their own. Some local groups for people with dementia take place too early for Mavis, who doesn’t get out of bed before noon and won’t stay at a group without one of her family. However, Maz benefits from carers’ meetups organised by Together Dementia Support, which supports people in Manchester and Trafford. 

The family also loves get-togethers run by another local organisation, Forget-Me-Not Buddies Tameside, just down their road, set up by a man whose wife had dementia. 

‘We go there every Monday,’ says Maz. ‘There are people playing music. Sometimes it’s Cliff Richard and Elvis. On Armistice Day it was music from wartime. 

‘Once a month we go out on a coach trip. If we want, we can go and meet up with someone from there for a coffee. We can sit by the window in Morrisons and see what people are doing.’ 

‘I like going on the bus,’ agrees Mavis. 

Change and learning 

With fewer opportunities to leave the house, lockdown was hard for Mavis and her family. 

‘We want to go out and about and keep Mum fit,’ says Maz. 

When her mum was first diagnosed, Maz gave up her home and job in London to move up north to live with her parents. A mental health nurse directed Maz towards a six-week course to explain the dementia journey from diagnosis onwards. 

‘This was so useful because it gave me an inside view. It also showed how everyone with dementia experiences it in a different way.’ 

The nurse was concerned for Maz at the time. 

‘At the start, Mum was violent and arguing. She would knock on the window to people saying, “Help, help,” and told a man putting in our telephone that we were keeping her here against her will. The police came and we had to explain everything to them,’ remembers Maz.

She’s thoughtful about why Mavis’s character may have changed to the more relaxed and happier personality she is now. 

‘I think over time maybe I handled things differently. You get to know what triggers someone and what doesn’t. Maybe I was so tired after a while, I stopped trying to make her do what she didn’t want to do. Over time, we learned to live together.’

Mavis's present

Flourishing 

Mavis is a big fan of Jenga and throwing games, trying to get hoops over hooks on a board. Maz has thought of all sorts of ideas to boost her mum’s hand–eye co-ordination, and the family all works hard as a team. 

‘It’s our culture,’ explains Neville. ‘We have to look after each other. Our family structure is that strong. We have help from my son’s wife and my granddaughter. 

‘The government needs to put a lot more money into Alzheimer’s because a lot of people don’t have that family structure. You never know if people will have enough stimulation and companionship if they have to go into a home.’ 

‘I’m keeping her happy and active in every way I can,’ says Maz. 

Mavis adds, ‘People always say I like a lot of things. And I love my teddy bears, and I love looking out of our big window here and who’s going past. 

‘I see people walking their dogs and buses driving, and schoolchildren when they’ve finished school.’ 

With the creativity of her daughter and support from both Neville and Maz, Mavis is flourishing. 

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Dementia together magazine

Dementia together magazine is for all Alzheimer’s Society supporters and anyone affected by the condition.
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10 comments

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What an amazing personal story !
Known you for a long time and you have never changed always thoughtful and family orientated.
What an impressive job your doing! Inspirational to us all xx

Maz I am so impressed with your creativity. Also with your help to keep your mum active. This article is so full of great ideas!

I’ve learnt so much about Alzheimer’s from your personal approach, Maz. Thank you. A first hand experience reaches one’s understanding so much more quickly and deeply. I’ve learnt slowly and in bits to come to terms with my wife who’s in a care home. At 95 she’s recovered the innocence of childhood and I’m able to be a parent to her.

What a fabulous emphasis on music , throwing games, dancing to keep fit and active , and lots of family love. The saying is that it takes a village to rear a child well, and sometimes it takes a great family (small "village ") to care well for a person who has dementia. This is where fleeting visits from ever-changing carers may stave off problems but there is not enough time or continuity to substantially enhance health and
wellbeing .

Maz is a lovely and caring person. known her for a while now through Carers groups and her main concern is always her Mum.. she is very special lady.

Maz is a lovely and caring person. known her for a while now through Carers groups and her main concern is always her Mum.. she is very special lady.

A wonderful insight into the lives of people living with and caring for someone with Dementia; the patience, creativity and love is extraordinary.

Thankyou

Maz is SO skilled. When she has time she could advise other carers - and professionals too!

Thank you

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