Standing in the conservatory of her house, Jen Byrne, in a fit of panic, confusion and frustration, held a footstall above her head, threatening to throw it at her husband.
‘The despair and anger in her eyes were unbelievable,’ Terry Byrne, 70, recalls.
It was 2021 and the couple were holed up in their marital home in Dorset during lockdown as the Covid pandemic took hold.
Jen was living with early-onset Alzheimer’s disease, while Terry was her carer.
Previously a senior sales manager earning £54,000 per year, Terry had given up work to look after Jen, a former dog groomer, and the pair were now struggling to get by on Jen’s state pension, carer’s allowance and attendance allowance – working out to about £67 per week.
It’s a time Terry now describes as ‘the worst six months of my life’ as he struggled to cope with an increasingly distressed Jen, whose Alzheimer’s symptoms were becoming more acute.
When the couple first met 18 years earlier in 2003, neither of them could have imagined the chaos and turbulence that Alzheimer’s would bring to their lives.
As well as his senior sales role, Terry, who was separated from his wife at the time, was moonlighting as a fitness instructor when he first met Jen, a regular attendant of his class.
Terry Byrne and his wife Jen, from Dorset, met at an exercise class at which he was an instructor and she was an attendee. But a few years ago, when Jen was diagnosed with early-onset Alzheimer’s, their lives changed forever
After calling an end to Jen’s first best interests meeting when he realised he’d be separated from his wife during lockdown, Terry eventually concluded he needed professional help and made the decision to move his wife into a care home
When Jen’s husband passed away, she and her daughter stopped going to the class – but after around six months, Jen returned. She even arrived early.
‘Believe me, Jennifer was never early for anything,’ Terry jokes. The pair began to chat and in time, exchanged numbers and started dating.
‘We fell in love very quickly. I asked her to marry me after I got divorced and we eventually married in 2015.’
However, the pair were only married for three years when Jen, then at the age of 67, was diagnosed with early-onset Alzheimer’s.
Running her own dog grooming business, Jen became disorganised with her clients.
‘She started to forget appointments and wasn’t putting them in her diary. Her customers, who loved her to bits, were getting very irate and upset.
Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.
‘I put it down to the fact that she was getting older and said it was about time she retired. I suppose you go into denial.’
But soon, Terry realised his wife’s faltering memory was more than just ‘getting older’.
Visiting London for work one day, Terry ‘had a feeling’ that something wasn’t right at home. He then received a panicked phone call from his wife who had locked herself out of the house in the rain after taking the dogs for a walk.
‘I rang her sister and got her to come round. Jen said she couldn’t get in the back door and was standing outside with the dogs in the rain; she was trying to break in.
‘When I got home, the key was in its usual place.’
It was after this frightening incident that Terry took Jen for a memory test via the local GP. However, looking back he describes this test as ‘lightweight’ – and Jen, whose memory was clearly faltering, managed to ‘sail through’ it.
Jen had always been an active and independent woman, running her own dog grooming business for years
Jen, now living in a nursing home, has endured several TIAs which Terry says have worsened her Alzheimer’s
Terry booked in his wife Jen for a memory test after an incident in which she was caught trying to break into their own house after forgetting where her keys were – despite them being in the usual place
However, after Jen’s symptoms became more acute, Terry pushed for an assessment at the memory clinic where a more comprehensive test revealed the extent of Jen’s cognitive decline.
‘Out of a possible 85, she scored something like 14,’ Terry recalls. Jen, still aware enough at the time to understand this was serious, became ‘very upset’.
Following the result of her memory test, Jen was sent to the hospital for a brain scan. The results were delivered at Christmas in 2018, when Jen was 67 years old.
‘[The doctor] looked her straight in the eye and said, ‘Mrs Byrne, you have dementia by Alzheimer’s’. And that was it. That was how we found out.’
Terry describes feeling ‘devastation’ as he and Jen walked out of the hospital following a ‘brutal’ diagnosis.
He quit his job to become Jen’s full-time carer – and soon realised the enormous emotional and financial toll such a role would take on him.
‘I was earning £54,000 a year,’ he says. ‘I went from that to carer’s allowance, £67 a week.’
When he gave up work, Terry’s company kindly offered him a severance payment which helped cover his and Jen’s living costs for a time. But eventually, that money dried up.
Terry Byrne and his wife Jen, from Dorset, have had their lives turned upside down by dementia after Jen was diagnosed with early-onset Alzheimer’s (pictured on their wedding day in 2015)
‘It’s amazing how much money you use when you’re just stuck at home. Jen had no savings and no pension apart from her state pension, so it was horrific.’
Unable to survive on carer’s allowance alone, Terry applied for attendance allowance for Jen. Whereas carer’s allowance is to pay for the carer of an impaired person, attendance allowance is intended to pay for the costs of the person with a long-term disability.
But Terry’s experience of applying for the support left him frustrated and in despair over the process.
‘Just to get attendance allowance you have to fill out a 14 page form,’ he says. ‘You fight and battle for everything. It’s tough as hell.’
Terry also expressed his frustration at having to re-apply for attendance allowance every year – particularly for a degenerative illness like Alzheimer’s.
He argues: ‘It’s not going to get better so why have I got to fill all these forms out again?’
Terry continued to look after Jen as Alzheimer’s progressed in her brain. But as her needs became more acute, he realised he needed professional help.
In early 2020, shortly after the pandemic began and lockdown was imposed, he applied for a best interests meeting which would determine if Jen could remain at home with visits from professional carers; or if she should move into a care home.
The best interests meeting applies when someone with dementia lacks capability to make decisions for themselves. It is attended by healthcare professionals relevant to the person in question, such as their doctor or nurse.
In Jen’s case, the meeting was attended by a consultant, social workers and Terry himself. It was decided that Jen should go into a care home – however when Terry was told he would not be able to visit due to lockdown, he became upset and stopped the meeting, deciding he could continue caring for his wife until the pandemic was over.
‘That was the biggest mistake I ever made,’ he says, looking back. ‘Though I made the decision for the right reasons.’
The next six months were ‘the worst of my life,’ Terry recalls. ‘I can’t tell you how bad it was.’
Jen’s Alzheimer’s, which was advancing all the time, was making her angry and destructive – leaving Terry struggling to cope.
She smashed objects of sentimental value, ripped up papers and even tried to throw furniture at her husband.
‘Photographs we’ve had for years, I had to hide all the decent ones because she tore up all the other ones.’
But it was when Jen suffered a ‘cascade’ of transient ischemic attacks (TIAs) that Terry knew she needed professional care.
A TIA is a so-called ‘mini stroke’ caused by a temporary blockage of blood flow to the brain.
Terry recalls how his wife ‘fell into [his] arms’ after complaining of impaired vision, before being taken to hospital.
‘There was no dementia awareness in the hospital,’ he says, describing how he stayed with his wife overnight to keep her calm. She was discharged the next day, but had entirely lost her peripheral vision.
Further to the damage to Jen’s sight, Terry says the TIAs ‘knocked her dementia’ and caused a significant decline in her condition.
Six months after calling an end to Jen’s best interests meeting, Terry arranged a second assessment, where it was agreed with near certainty that Jen should move into a care home.
Terry is in no doubt that this was the right decision for Jen. But after giving up work to look after his wife leaving him reliant on carer’s and attendance allowance, Terry found himself stripped of 80% of his income.
‘[The benefits] were £401 every four weeks, but as soon as [Jen] went into care I lost it,’ he recalls. ‘I had no money.’
Reluctant to go back to his old job in sales, Terry looked for a new career path – and found inspiration in the people who had helped him when he was looking after Jen.
When he was caring for Jen at home, Terry had taken her to a day centre in Christchurch which provided essential respite care.
He booked a trial at another branch of the centre nearby – run by a firm called Verwood – which catered for people with learning disabilities. He found he ‘loved’ the work and was keen to return.
‘For a year I worked there full time, apart from when I went to see Jen. It was the best, most rewarding year of my career – even though I was on £9 an hour.’
Terry found solace in care work as he met people on the same emotionally exhausting journey he was on. But as Jen’s condition continued to decline, he found himself less able to work regular shifts and began to work ad hoc for the centre while taking on private work.
‘The thing with dementia is that it plateaus and dips, he explains.
Jen’s condition declined significantly. Terry tells how she was transferred to the dementia hospital and sectioned for six months after she began to attack people in her care home and staff had to remove her.
Jen was moved to a nursing home which was able to cater for her acute needs. But, as is the nature of Alzheimer’s, her condition has declined significantly in the three years since she moved in.
‘She’s doubly incontinent, can’t walk, can’t feed herself,’ Terry says. ‘I fed her soup today and I had to tell her to swallow.’ In recent months, Jen has also become non-verbal.
While Terry copes with the daily reality of Jen’s condition, he is living in her home – which means it cannot be seized to pay for her care costs.
‘If someone lives in the house, [the state] can’t touch it,’ he explains. Terry remains frustrated by the financial burden placed on families when dementia strikes.
‘If you have cancer, you don’t have to give up your house. But if you have dementia, they take it away,’ he says.
Alzheimer’s has brought devastation to Terry’s life, but it has also opened him up to people and experiences he wouldn’t otherwise have known.
‘My whole live has revolved around dementia,’ he explains. ‘Some of your friends disappear off the face of the earth when dementia hits, believe me. But you do get friendships out of it too.
‘Nobody gets it like someone who has lived it.’
