‘Staying sociable is important for us both’ – getting support as a dementia carer

After her husband Roy’s dementia diagnosis, Maria Newson has learned how important it is to reach out for help as a carer.

Maria Newson was born in southern Poland, not far from its second largest city Krakow. Now 74, she first came to the UK when she was 21.

‘I came to learn English and lived with my aunt in west London, who was my guarantor.

‘At the time, Poland was still under communist rule and very closed off, so I wasn’t very well travelled – I’d only been to Hungary and Czechoslovakia before.’ 

It wasn’t easy to come over to the UK and I felt nervous.

Maria first met Roy in 1973, through mutual friends in west London’s Polish community. Roy is 10 years older than Maria, and she says his spirit, kindness and wit shone through.

Maria is stood up and wearing a flowery top, with her hands placed on Roy who is sat down and wearing a green gilet

‘He was chatty, kind and he was principled – he campaigned for the things he really cared about and for the underdog. 

‘He was involved with trade unions and went to anti- apartheid demonstrations.

‘On top of that he was very cultured. He was a brilliant photographer and loved music, particularly jazz and classical. He wouldn’t miss the Proms!’

They bonded over art. Maria was keen to soak up London’s vibrant cultural scene and they spent lots of time visiting the capital’s galleries together.

In 1976, on a memorably snowy but sunny January day, they married in Krakow.

He was a handsome guy and my family and friends treated him like a rock star. 

‘They hadn’t met an English guy before and Roy had also learned Polish, which impressed them all.

‘My mother adored Roy. On our wedding day, she said to me, “I hope your life is as beautiful as today.”’

A black and white wedding photo of Maria and Roy smiling, Maria is wearing a flowery headdress, Roy wearing a dark suit and tie.

Busy family life

Maria describes married life with Roy as busy, sociable and fabulous.

‘We were always full-on, doing so many things.’

It wasn’t a party without Maria and Roy! Roy was the life and soul.

They went on to have two daughters, who now live close by, and also have two grandchildren.

Roy rose to a senior role in industry and eventually became director of his own consultancy company, while Maria worked at Heathrow Airport.

Travel was their great passion. 

‘We went all over Europe but further afield too, including India, Japan, South Africa, Canada, the US and Guatemala.

‘We loved learning and experiencing different cultures. We couldn’t pick a favourite place, there are so many.’

Noticing dementia symptoms

It was after Roy’s retirement in 2015 that Maria noticed some subtle changes in him.

‘No one else would have realised, but I knew him so well,’ she explains.

Despite knowing their local area like the back of his hand, he got lost picking Maria up from her monthly hair appointment.

‘I was standing on the street, waiting and waiting for him. 

Eventually he turned up, but he was over an hour late and told me he’d got lost.

‘It didn’t add up. He was such a clever man – all he usually needed to do was look at a map and he knew instantly where he was going.’

Although Maria thought it was strange, she didn’t think it was anything to worry about.

Behaviour changes

But later in 2015, during a trip to the US, there was a clearer sign that something was wrong.

‘We are both Elvis fans and decided to do a themed tour, including a trip to Graceland. We took our daughter and had an amazing time.

‘During a stop in place called Chattanooga to see an outdoor sculpture exhibition, Roy took some pictures and said, “I’ve been here before!”

‘My daughter laughed and said, “Dad, you’ve never been here before. What are you talking about?” And he got so angry with her.’

I knew then that there was something wrong, it wasn’t like Roy.

Maria and Roy smiling and stood in front of a red brick church at a wedding, Maria is wearing a cream and pink outfit and Roy is wearing a dark suit and bowtie

Getting a dementia diagnosis

Back in the UK, Maria spoke to their GP, who Roy had known for 40 years. He was sent for an MRI and memory tests, then diagnosed with Alzheimer’s disease.

Although Roy didn’t show much emotion, Maria describes it as a huge shock for her.

‘He’d always been a very physically healthy man. His whole family has got the longevity gene. His mother was diagnosed with dementia at 90 but lived until she was 101.’

In 2016, Maria retired from her job to be Roy’s carer.

At first, she didn’t reach out for support and tried to manage as best she could on her own.

But it was difficult and often upsetting, especially when Roy went through a phase of being quite aggressive

Her daughters saw that she was struggling. They encouraged her to call Alzheimer’s Society to help make sense of what dementia support was available.

Staying active and involved

Over time, Maria has built up a weekly schedule of activities that keeps Roy stimulated and that she enjoys too.

This includes joining their local Singing for the Brain group.

I love it so much. The people are so warm and welcoming, and you’ve all got something in common.

‘It’s almost like my second family now. When someone passed away earlier this year, it was such a shock to us all.’

Maria and Roy also go to weekly music therapy sessions, where he loves to play the cymbals and to a local dementia café for games and bingo.

‘I’m a friendly person, I love to get out, so staying sociable helps me as well as Roy.’

Help for dementia carers

Although she’s naturally upbeat, Maria's experiences have left her feeling very angry about the lack of financial support available for carers.

I do feel very strongly about it. Roy’s always been a very healthy man. 

‘He’s never been ill before – he wouldn’t even take a tablet for a headache.

‘We don’t come from rich families, we come from working-class backgrounds. We’ve worked hard all our lives to get where we are and paid our taxes.

‘Now, we need some help, and it’s so hard. I don’t expect the state to pay for everything, just any help would be good.’
 

Maria and Roy sat down at a Singing for the Brain Christmas meeting, Maria is wearing a black Chrstmas jumper, Roy is holding a cup of tea and wearing a dark-coloured jacket.

Maria and Roy at a Singing for the Brain session

Self-care as a carer

As well the emotional toll of seeing her once energetic and chatty husband change, Roy’s daily care is physically challenging for Maria.
Looking after herself, so she can support Roy as best she can, is something Maria now prioritises.

Everything came to a head and I realised that I needed a break

For the past couple of years, while Roy stays in respite care for two weeks, Maria has rekindled her love of travel. She’s been back to Poland, to Spain, and is planning a trip to Lake Garda in Italy.

It’s heartbreaking to leave Roy, but Maria says it’s so important to recharge her batteries.

‘It does me lots of good mentally and physically. I come back completely full of energy,’ she says.

Music and dementia

Maria’s relishes her moments of connection with Roy.

‘He still absolutely loves music and enjoys listening at home, particularly to Leonard Cohen.

‘Sometimes he’s very cheerful because it reminds him of something.’

I will often just put on a CD and I dance with him in the front room.

Her family and loved ones still come together for important social occasions, including new friends made at their dementia activities.

‘Last year, we celebrated our 48th wedding anniversary and a lady from our Singing for the Brain group, who’s a carer for her own mum, sang You’re the Best Thing That Ever Happened to Me.

‘Roy and I danced for the whole song. There was not a dry eye in the in the hall.’

Although wanting to withdraw from the world is understandable, Maria’s advice to other carers is to stay sociable and open to new experiences.

‘Try not to sit at home and dwell on it. 

Try to find out what is available locally because it really does change the outlook.

‘You find that you’re not the only one – there are so many people in the same position as you. And it is so rewarding to see your loved ones enjoy themselves.’

Dementia Support Line
Our dementia advisers are here for you.

Dementia together magazine

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

0 comments

Add a comment
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.