Lockdown paused many of the activities that had been helping Barney Thompson come to terms with his dementia.
‘Every time I tell somebody I’ve got dementia, it gets easier,’ says Barney Thompson, an Alzheimer’s Society volunteer speaker who lives in County Antrim, Northern Ireland.
Barney, who’s 66, has dementia with Lewy bodies, which hasn’t been straightforward for him to accept. But the support he’s had from the Society, and the work that he does for us, have helped him to better come to terms with his diagnosis.
Barney was born in Preston in Lancashire and spent much of his working life with the traffic police in Liverpool.
‘It was great fun, I loved the adrenaline rush,’ he says. ‘Once you’ve had it, you want it again.’
Barney moved to Northern Ireland with his wife Catherine in 2002. They settled in Toomebridge, near Catherine’s sister, with Barney taking up a job with the health service.
Barney became a big fan of Ulster Rugby, attending as many of the club’s games as he can.
‘When we came over here, that was the first thing I wanted to see,’ he says.
Barney and Catherine also love travelling, particularly to Barbados.
‘It’s our favourite place,’ says Barney. ‘We like to do turtle rescue – you gather the baby ones in buckets to stop them getting run over or eaten, and they get taken to a safe beach.’
A few years ago, Catherine noticed changes in Barney’s personality and behaviour.
‘I’d just started a new job and he was decidedly off,’ she says. ‘I thought he’d got the hump.
‘Another time he was sent home from work early, because he’d been getting lost on the way there and back.
‘I can look back now and say that, probably over the past 10 years, there’s been some odd things that have happened. But nothing that you could actually put your finger on and say was definitive.’
Barney hadn’t really noticed any major differences in himself, though he does recall one incident at work.
‘I couldn’t remember a shortcut on the keyboard that brought up a particular screen,’ he says. ‘I nearly destroyed a computer in frustration!’
In March 2017, Barney was diagnosed with mild cognitive impairment (MCI), where someone has minor problems with mental abilities such as memory and thinking. This was amended to dementia with Lewy bodies later by a different consultant.
People with MCI don’t all go on to develop dementia, though it does increase the risk. A diagnosis of MCI can be an opportunity to do things to reduce the chance of developing dementia, like making lifestyle changes and ensuring that any other conditions, such as heart problems, are managed carefully.
In his own case, Barney felt as though the MCI diagnosis avoided having to address the seriousness of his situation – ‘tiptoeing around it’ instead of facing the fact that he had dementia.
‘I wish they’d come out with it straight away,’ he says.
Dementia with Lewy bodies can cause problems with attention, alertness and movement, difficulty judging distances, disturbed sleep and hallucinations. However, the dementia diagnosis gave Barney something to work with.
‘It was an answer, a tag,’ he says. ‘It’s positive because I know what it is – I know what’s happening to my brain.’
Barney can struggle with his memory, while his spatial awareness and sleeping are also not very good. However, most of these symptoms are described by Catherine, who says Barney uses jokes or other means to avoid fully acknowledging the effects of his condition.
‘I’d just say everything’s great,’ he admits. ‘Total deflection – I’m very good at it!’
That said, Barney recently made a difficult decision to stop driving.
‘I feel like I’ve had my legs chopped off. But, having seen what I’ve seen during my working life, I do not want to be responsible for causing damage to anybody,’ he says. ‘If something did happen, I’d never forgive myself.’
Barney has diabetes and is shielding as a result of the coronavirus pandemic, limiting himself to a daily walk with Catherine and their cocker spaniel Charlie.
‘That walk is important, I look forward to it,’ he says.
‘It’s sad that you can’t really speak to people in the street because of social distancing. But we’ve got to get through it, and the way to get through it is to not get near anybody.’
It’s been a very stressful time for Barney and Catherine, and friends of theirs have died due to coronavirus.
Both of their daughters have been affected in different ways. One, a self-employed stage manager for theatres, has been hit financially. Barney has met her outdoors for a socially distanced conversation, but as of late June he hadn’t seen his other daughter, a doctor, since lockdown began.
‘She’s working on a COVID ward, right at the pointy end,’ he says. ‘It’s just horrible at the moment. My daughters play on my mind.’
Barney worries that his mental abilities may have declined during lockdown. However, he was recently reassured by news that Catherine, who works for Queen’s University Belfast, is likely to continue working from home until the new year.
‘If she had to go back to work in the office, I’d be alone all day, every day,’ he says. ‘I don’t know how I’d get on, rattling around on my own.’
Barney says he was really struggling after his dementia diagnosis until he discovered Alzheimer’s Society. He’s feeling ‘a little bit empty’ without his usual face-to-face groups and meetings, all put on hold because of coronavirus.
One positive has been continued contact with Society volunteer Hugh. Prior to the pandemic, they met twice a week to play bowls, which Barney misses. This has at least been replaced with video chats via FaceTime.
‘Hugh is very good to me and very good for me,’ says Barney. ‘He’s a grand man, very dedicated.’
As well as receiving Society support, Barney also volunteers for us by speaking at meetings, workshops and conferences about his experiences.
‘I like public speaking. I used to love giving evidence in court,’ he says. ‘I never write a speech or have notes, I just stand there and say what comes into my mind.’
Barney wishes he’d heard similar first-hand experiences when he was diagnosed.
‘I’m able to talk to them the way I’d like to talk to myself,’ he says. ‘I try to give people a bit more self-esteem.
‘If they can see someone who’s got dementia stand up and talk to people, and they get something out of it, then I’ve done a job.’
Barney has had plenty of positive feedback from other people affected by dementia, but he emphasises how doing this work helps himself.
‘I used to find it difficult to talk about dementia, but this helps me to offload and accept what I’ve got. It’s cathartic.’
Barney has raised awareness of dementia more widely too, including helping to make shops and airports more dementia friendly.
‘Awareness in the community is very poor,’ he says. ‘I’ve got a key to disabled toilets because my bladder control is not what it used to be, and the number of times I get sneered at, because dementia is a hidden disability. We’ve had a really rough time with things like that.’
His efforts were recognised at last year’s Dementia Friendly Awards, where he was named Trailblazer of the Year.
‘I was a bit stunned that I got that, I don’t think I do anything!’ he says. ‘It’s very nice though.’
Looking ahead, Barney can’t wait to resume his Society speaking.
‘I’m not enjoying lockdown, but I’ll survive this,’ he says. ‘I’d like to get back doing more work with Alzheimer’s Society – I’ve missed that.’
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