I knew my husband had Alzheimer’s in his 50s but no one believed me – instead they said I was menopausal
Emma Ruscoe dusted off an old notebook while cleaning out the cupboards in her home in Solihull, West Mids.
Dating back to 2017, its pages were filled with painful reminders of disconcerting memories – unusual things her husband – and father of her two sons – Simon, had said and done.
For 25 years since they’d met through mutual friends in 1992, Simon had been sharp-minded and hard working with devilish wit to boot. But towards the end of 2015 Emma began to notice changes in her long-term partner.
During a family holiday to the Greek island of Kefalonia, she and Simon had left their teenage boys Alex and Ollie to explore for the day while they took a trip to the other part of the island.
But their fun day out descended into a fiery argument when Simon repeated himself – and then refused to acknowledge he had done so.
Emma, now 57, recalls: ‘We had been joking around about what the boys would have for lunch that day. But not 10 seconds after we had finished speaking about it, Simon turned to me and said: “What do you think the boys will have for lunch?”.’
Recalling the moment now, nearly six years after her husband was officially diagnosed with young-onset Alzheimer’s at the age of 55, the memory is a chilling foreshadowing of what lay ahead for the family.
But at the time, Emma simply felt frustrated that her husband seemed to forget something they had discussed moments earlier.
Emma Ruscoe’s husband Simon had always had a sharp mind and devilish wit – but during a family holiday to Greece in 2015, she began to notice oddities in his behaviour (pictured with sons Ollie, left, and Alex, second from right)
‘We ended up having a huge argument,’ she says. ‘I kept saying to him, “we literally just discussed this” and he insisted we hadn’t.’
Emma, who works in social care, had noticed for some time that her husband seemed somewhat strained and had put it down to stress in his IT job. But it wasn’t until the family trip where she spent all hours of the day with Simon that she realised just how forgetful he’d become.
For Emma, the holiday was the beginning of a long and uncertain journey which saw her doubt her own sanity as she battled for a diagnosis for her husband.
In her gut, Emma knew Simon wasn’t himself. But instead of listening to her pleas, loved ones and medical professionals instead wrote her off as perimenopausal – insisting the changes she had noticed in her husband were imaginary.
Everyone experiences dementia differently. Use this checklist to help you make a note of your symptoms before you talk to your GP.
‘They kept saying it was me. They kept saying it was the menopause. So I went and had a check for dementia because I thought I was losing the plot.
‘I went to the doctors about the menopause, I was doing mindfulness.
‘I did start to think, “Maybe it is me. Maybe I’m going mad”.’
Meanwhile, Simon’s condition continued to progress undiagnosed for years – until eventually the signs were impossible to ignore.
Emma and Simon met in 1992 via mutual friends and she was attracted to his bright blue eyes and dark sense of humour instantly
The couple married in 1994, two years after meeting, in Stonnall, West Midlands, with Emma wearing a ’90s puffball dress’
Emma and Simon went on to have their sons Alex and Ollie and moved to Solihull, West Midlands
When Emma, then in her twenties, met Simon more than three decades ago, she would never have imagined Alzheimer’s was in his future.
‘He had the most stunning blue eyes,’ Emma says. ‘He came across as quite shy, but he’s got a wicked sense of humour, which is something that we miss so much now.’
The pair married two years after meeting. It was a classic, traditional ceremony in Stonnall, West Mids, complete with a ’90s puffball dress’. Simon delivered a – seemingly completely improvised – rip-roaring speech that left the guests in hysterics.
‘Some people were worried I was making a mistake in marrying Simon, but after they heard his speech, they came up to me and said “we get it now”.’ Emma joked.
The boys followed; Alex in 1997 and Ollie in 2001. While she adores her sons, Emma admits she didn’t take to motherhood as easily as some. Thankfully, Simon was always there to take the reins when things began to feel overwhelming.
‘Simon was – and still is – an excellent dad,’ Emma says. ‘I don’t know how we’d have done it if it wasn’t for him. He was very hands on. When Oliver came along, it was hard work having two and Oliver was quite naughty.’
Emma recalled how her husband of two decades began to forget things that had just happened, causing arguments between the pair
For years, Emma knew something wasn’t right with her husband Simon. But she struggled to get people to listen
Emma describes her husband Simon as a ‘great dad’ who was very hands on with their sons (pictured with Alex)
Joking that her youngest son was her ‘nemesis’ in his younger years, Emma recalls how Simon seemed to have endless patience with Ollie – playing football with him in the garden for hours.
She joked: ‘If it was good cop/bad cop, I was the bad cop.’
Emma and Simon approached parenthood as a team; splitting the night feeds when the boys were babies and the school runs when Alex and Ollie got older.
Car journeys with their father had always brought happy memories for Alex and Ollie, as Simon played their favourite music and sang along. But a teenage Ollie was left scarred by one of the car trips he’d once cherished – when Simon, usually a confident driver, kept forgetting directions.
‘In the end I made him pull over and we swapped seats so I drove us home,’ Emma says. ‘Ollie was terrified.’
As examples of Simon’s faltering memory continued to build, Emma jotted them down in her notebook – not least to have a written record in the face of disbelief at her warnings to friends, family and doctors.
In 2018, more than two years on from the holiday in Greece when alarm bells first rang for Emma, Simon was referred to a memory clinic. But despite her battle to have her husband assessed, she claims they were ‘fobbed off’.
‘There were no tests, we spoke to a psychologist, and she told us that Simon was stressed.
‘We received a letter saying categorically that my husband didn’t have dementia.’
In the meantime, Emma went on hormone replacement therapy (HRT) for menopause symptoms – but she continued to push for a diagnosis for her husband.
At the beginning of 2020, nearly four years after that family holiday to Greece, someone finally listened – Simon was diagnosed with young-onset Alzheimer’s.
Just 55 at the time, it was a devastating blow to the family. And yet for Emma, who had insisted for four years that something wasn’t right, it was a ‘relief’.
She explained the average time to get a diagnosis for young-onset dementia in the UK is approximately three years, a figure she finds ‘disgusting’.
Shortly after Simon was diagnosed, the Covid pandemic plunged the whole nation into lockdown.
While it was a hard time for the family, it allowed Emma and her boys to spend more time with Simon and care for him – while also helping him to care for himself.
Home care for her husband is something Emma feels passionately about – as she says it’s ‘not in our plans’ to put him into a care home.
As the years have passed since Simon’s diagnosis with young-onset Alzheimer’s, Emma’s role has transformed from wife to carer
Her outlook on Simon’s diagnosis is pragmatic about the problems they face, while remaining as positive as possible.
She says her family has been ‘lucky’ in living in an area where they have access to dementia nurses who can provide specialist support. Additionally, they have received regular visits from Alzheimer’s Society support workers.
Emma jokes her husband has a ‘harem’ of women around him at any given time – staff she describes as ‘amazing’.
Four days a week, for five hours at a time, Simon visits a day centre which provides respite care for Emma and the boys, while also ‘adding value’ to his life.
‘It gives him a sense of independence from us, which is a good thing,’ Emma says.
But much of Simon’s care falls to Emma, who now works from home so she can be around for whatever her husband needs.
The last year has seen his needs increase significantly as his condition has progressed. He has lost the ability to do anything for himself and has become largely non-verbal.
‘I keep incontinence pads in every room of the house now. I can only leave him alone if he’s watching the telly.
‘The other day I gave him his dinner and popped out of the room but because I hadn’t put the cutlery in his hand, I came back in to see him eating with just his knife.’
A year or so ago, Simon was able to make himself a cup of tea. Now, he is unable to do anything for himself.
‘Absolutely everything has to be routine,’ Emma explained.
The boys help out as often as they can, but at 24 and 28 years old they are embarking on their own lives – now each with girlfriends of their own.
Emma doesn’t begrudge this – indeed, she considers Ollie and Alex’s partners an extension of her family – but she admits caring for a husband with Alzheimer’s is a ‘lonely’ place.
In moments, she still sees Simon’s brilliant sense of humour shine through. But those moments are fleeting and becoming ever more scarce.
‘I look at him and he still looks the same. I still fancy him, but I just look at him and think, where have you gone?’
Among the difficulties of caring for someone with advanced dementia is their unstable mood; with Simon losing his temper when he becomes confused and frustrated.
But although it is distressing at times to see her husband uncomfortable, Emma finds an odd sense of comfort in still being able to argue with Simon – like they always have done as a couple.
‘Even though it’s horrible at the time, afterwards I think – he’s still in there.’
