“It’s a lifeline”: how Live More is supporting Jean and John

Jean and John have been married for over 50 years. John was a teacher, working in IT and computing. But a few years ago, Jean began to notice small but significant changes.

“I was talking about sending my daughter an email with an attachment,” she said. “And he had no idea what I was talking about. That was the first time I realised something was quite drastically wrong.”

Over time, those changes became harder to ignore. There were memory tests, scans and long delays during the pandemic. Despite clear signs that something wasn’t right, Jean was initially told everything was fine.

“I said, no, it’s not fine. There are significant problems with memory and personality changes.”

Eventually, in August 2022, John was diagnosed with Alzheimer’s disease – though Jean feels they had been living with it for several years already.

As John’s condition progressed, life at home became increasingly difficult. Jean describes a complex mix of emotions – grief, sadness, frustration and guilt.

“You’re living with somebody you didn’t marry,” she said. “My role has changed from wife to carer… and that’s huge.”

John’s behaviour also changed. He sometimes had angry outbursts that were completely out of character.

“It’s a vile, cruel disease that’s changing his personality,” Jean said. “I understand that – but we still have to live with it.”

Day-to-day life became emotionally exhausting.

“I think I’m a very optimistic person, but it was dragging me down, making me depressed,” she said. “It’s very hard, day to day, hour by hour. I feel like I’m grieving. I have this huge sadness for what’s happening to John, through no fault of his own, but also feelings of resentment, which I feel guilty about, because we can’t do the things we were planning to do. Our life is so different. It’s been very, very emotional.”

Although she found some support through the Alzheimer’s Society and her local carers’ hub – where she could speak openly with others in similar situations – life at home remained difficult.

“Talking to family is difficult, as I feel disloyal if I say anything negative,” she said. “But at the carers’ hub, you can talk without being judged.”

Jean first heard about Shared Lives in Bury, managed by Persona, through another carer.

“She said it gives you a real break – you can go to the shops or to an appointment,” Jean said. “She said, ‘you might benefit – it’s worth pursuing.’”

Jean followed it up straight away.

“I just wanted to do everything I could to help John,” she said. “It felt like relief… that somebody cared, and something might make our lives easier.”

After getting in touch, she and John met Bury Shared Lives coordinator, Mo, within days.

“We met at a local café and talked about our lives and what we enjoyed,” she said.

For Jean, that meeting stood out.

“She was so caring, so professional, so knowledgeable,” she said. “It was very reassuring. I felt seen. Like someone understood there was a problem – and that something could be done to help.”

John was matched with Joe, a Shared Lives carer who shares his interest in practical, hands-on activities.

“He was matched perfectly,” Jean said. “John likes DIY – and he needed a bit of men’s company as well.”

They started with a few hours a week. Over time, as John’s needs increased, that support grew to ten hours across two days. Now, those sessions are a key part of both of their weeks.

When Jean talks about the impact of Live More, she is clear.

“It’s changed our lives,” she said. “It’s something we desperately needed. Having those two days…it’s something for me to look forward to.”

For John, time with Joe brings purpose and enjoyment.

“They’re doing things, making things… it gives him a sense of achievement,” she said.

Together, they’ve built and repaired items, visited cafés, played dominoes, been bowling, hired bikes and spent time out in the community.

“They’ve been making wooden planters and taking them to community groups,” she said. “Everyone at the cafe knows them now.”

Joe also introduces new ideas and activities.

“They’ve been looking at go-karts, thinking about having a go. They’ve also done gardening,” she said.

Even everyday moments matter – like helping a neighbour.

“John’s very handy, so a neighbour asked if he could fix a gate. He did it with Joe. That sense of achievement is still there – even if he needs support.”

Being with Joe also lifts John’s mood. John has struggled with depression and is aware he is losing skills. He can no longer read and finds it difficult to express himself, which is frustrating.

“With Joe, that pressure’s off,” Jean said. “They’re doing things, making things. He’s happier. He’s in a better mindset.”

Joe understands how to support him.

“He knows when to talk and when not to,” Jean said. “He knows how to cheer him up.”

While the support benefits John, Jean is clear that it is just as important for her.

“I don’t know that I could manage without it,” she said. “It’s a lifeline.”

Having time to herself each week allows her to step back, rest and reconnect with her own life.

“It re-energises me to carry on,” she said. “I’ve got to be healthy and well to look after him. This enables me to do it.”

She spends that time meeting friends, going for walks, visiting garden centres or simply having lunch.

“You’ve got to grab enjoyment while you can,” she said.

That time also helps her cope with the emotional demands of caring.

“I’ve got to be healthy and well to look after him,” she said. “This enables me to do it.”

Live More has also helped Jean feel less isolated.

Through the programme, she has built relationships with both Joe and Mo – people she can talk to and turn to for advice.

“I don’t feel so isolated,” she said. “I feel supported.”

Even with that support, the future remains uncertain.

“It’s not what we thought our life was going to be,” she said.

But having the right support in place makes a difference. It also gives Jean and John something they can still share. Joe updates Jean on what they’ve been doing, helping her stay connected with John even as communication becomes harder.

“It gives us something to talk about,” she said.

And while there are still difficult days, there is now something to hold onto each week.

For John, it’s time spent doing things he enjoys, with someone who understands him.

For Jean, it’s space to breathe – and the support she needs to keep going.

“I just don’t know what I’d do without it,” she said.

As Live More grows, we’re keeping people like John and Jean – and what matters to them – at the heart of the programme.

Find out more: Live More: growing Shared Lives for people living with dementia and their families.