Real stories

Missing freedom: Cherishing every moment with Mum

‘I was in full PPE and met by someone in a hazmat suit – it was like a science fiction film,’ says Jamie Greaves, recalling his first ‘window visit’ to his mum’s care home during the pandemic.

‘She recognised me but became hysterical and wanted to climb out, so had to be restrained by staff. It was actually quite horrendous.’ 

Like so many carers, friends and relatives, Jamie has found it incredibly upsetting to be denied proper visits to a loved one with dementia. 

‘My mum is my world, she brings a great deal of joy to my life,’ he says. ‘I felt so guilty to suddenly stop visiting.’ 

With visits still restricted, Jamie continues to call for change. 

‘I want it to go back to an open-door policy. Care home residents aren’t prisoners,’ he says.

Starring role 

Jamie’s mum Patricia, now 73, spent much of her working life as a secretary or PA for managing directors of large companies. She later moved into bookkeeping and her own CV-writing business. She was also involved with local singing and drama groups. 

‘She was always taking the starring role!’ says Jamie, a freelance creative consultant who lives in Brighton. ‘She was very lively, social and active.’ 

Jamie is an only child who was born after Patricia had already experienced a series of miscarriages, and the pair have always been close. 

‘There wouldn’t be a day without some sort of contact,’ he says.

Sketchy diagnosis 

Patricia always loved the sunshine and around 10 years ago moved to Tenerife with her partner. Some years later, it started to become clear that something wasn’t right with her health. 

‘She would repeat herself in emails, or phone me twice in three minutes, not realising we’d already spoken,’ says Jamie. ‘Her friends said she came back from a restaurant and got plates out to start cooking a meal.’ 

After what Jamie describes as a ‘sketchy’ diagnosis of Alzheimer’s disease in Tenerife, Patricia and her partner moved back to the UK to live in Stoke-on-Trent, to get a proper diagnosis and further support. But having struggled to come to terms with how dementia was affecting Patricia’s behaviour, her partner walked out. 

‘It was devastating for Mum – she just kept asking where he was,’ says Jamie.

Completely hysterical 

Jamie got social services involved, who said that Patricia needed to go to a dementia assessment unit. 

‘That was one of the hardest things I’ve ever done,’ says Jamie. ‘I was told to get Mum chatting to staff and then edge out through a side door. It was very upsetting, although also a relief to get her properly assessed.’ 

A later visit from Jamie proved distressing for both of them. 

‘Mum freaked out and was completely hysterical,’ he says. ‘She was kicking out at staff and screaming at me that I’d put her there and didn’t love her. I broke down in tears, which was when she snapped out of it and calmed down.’ 

Patricia was ‘sectioned’ – detained under the Mental Health Act. She spent 10 weeks on a hospital psychiatric ward, where she was diagnosed in December 2018 with frontotemporal dementia (FTD) and bipolar disorder. 

FTD is a less common type of dementia that can cause changes to a person’s personality and behaviour, and difficulties with language. Bipolar disorder is a mental health condition that can cause someone’s mood to swing from one extreme to the other.

Caged lion 

Patricia went to live in a specialist nursing home in Stoke for people with dementia, with Jamie visiting every weekend from Brighton. However, Patricia would become very upset when he wasn’t around, so in mid-2019 Jamie moved her to a home near him. 

‘I was there most days and would take her out on the seafront or to the shops or pub,’ he says. ‘I would do her nails and hair – she loved that. There were still some separation issues but overall it worked really well.’ 

Then came the pandemic, and Jamie was no longer allowed to be with his mum. 

‘I was devastated,’ he says. ‘She couldn’t understand about the pandemic or that I wasn’t allowed to visit, so it was a horrendous time and very upsetting. 

‘I lost many nights’ sleep thinking about it, and as it went on the frustration built and built.’ 

Patricia found video calls confusing and window visits distressing, while pod visits were also unsuccessful. 

‘She was behind a pane of glass but wouldn’t settle,’ says Jamie. ‘She was like a caged lion, trying to find a way out to be where I was.’ 

Although Jamie found the home’s manager to be understanding, in his opinion, care home companies have tended to be overly cautious. 

‘I think that people’s deterioration during lockdown has been worse than the risk of COVID in some respects,’ he says. 

Jamie helped to raise awareness of the importance of proper visits on social media, writing to his MP and also sharing his experiences in support of an Alzheimer’s Society campaign. 

‘I think there was a period where the government weren’t fully understanding the magnitude of the situation,’ he says.

Future risk 

Jamie’s grandmother also had dementia, and that prompted him to try a self-testing DNA kit.

The Society doesn’t recommend these kits, because they aren’t as reliable as tests done by the NHS and it can be easy to misunderstand what the results mean without personalised advice from a professional.

However, Jamie’s test said he had a slightly increased chance of developing Alzheimer’s and he adds, ‘It does make me think about the future.’

Being a single gay man with no children or siblings has an impact on what this would mean too.

‘I don’t see much visibility of support for LGBTQ people with dementia or their family members and partners.

‘It would be nice to see care homes catering specifically for this demographic, especially as gay people may be more likely to be left without a partner or family to care for them.’

Cherished moments 

Jamie can now visit his mum once a week if he takes a COVID test beforehand and wears PPE. 

‘It’s still not ideal, but it’s noticeably better,’ he says.

‘It seems odd to say, but after the year we’ve had, even being able to visit for 30 minutes meant the world. Seeing her face light up is worth a million dollars to me.’

Patricia has had both doses of the COVID vaccine and Jamie is now waiting for the frequency and flexibility of pre-pandemic visits to return.

‘I miss that freedom of longer visits. Mum gets quite sleepy now and sometimes struggles to talk, so when she’s animated and chatty I want to make the most of it,’ he says. 

And as Jamie reflects on a ‘horrendous’ year, the importance and value of his visits are as great as ever. 

‘You’ve got to cherish moments with the people that you love, because you don’t know how dramatically things can change from one moment to the next.’