Caring for husband with dementia 'nearly broke me'

Ellen Miller said she started to notice changes in her husband Terry's behaviour in 2016.

She said his driving had become erratic, and though he was a keen cook, he was no longer able to prepare a Sunday roast - something which had been an "unshakeable family ritual" for many years.

But the change that troubled Ellen most was Terry's growing disengagement from their relationship.

"He just didn't seem bothered anymore," she said.

Ellen, from Blackpool, said she decided to carry out her own test to see what would happen.

She said: "I deliberately didn't speak to him to see what would happen.

"It was three days before he said anything to me.

"We'd had a fantastic partnership and he'd been my rock for decades so I knew something was very wrong."

Ellen and Terry went to the GP numerous times from 2017. But it was 2023 before he got his diagnosis - vascular dementia and Alzheimer's disease.

"Because Terry wasn't experiencing memory problems it took quite a while, and a few visits to persuade the GP to do a memory test," Ellen said.

Their story is far from rare. Research published by Alzheimer's Society found families affected by dementia were being forced to put their lives on hold as they waited for a diagnosis.

A survey of more than 1,000 carers showed that for respondents in the north west of England, nearly four in 10 (37%) waited more than six months for a diagnosis after first seeking help.

The dementia charity said this had "devastating consequences" for carers' work, finances and mental wellbeing.

The charity is now calling for a new nationally-recognised standard that would mean patients get an accurate diagnosis and care plan within 18 weeks of a GP referral.

Ellen knew they needed to make adaptations to their home and to prepare for Terry's condition to worsen over time.

The family put in handrails and floor lighting, but he still suffered a lot of falls in the following years.

His memory, though, stayed intact.

"Terry always knew who I was," Ellen said. "He was even able to tease and make jokes with my brother about football the weekend before he went into hospital for the last time."

Terry died in 2025.

Since his death, Ellen has taken up volunteering on the board of the Dementia Carers Matter charity - something that has given her great comfort.

"Caring nearly broke me," she said, "but I've also found solace in walking and playing music.

"My dad played trombone and when I took Terry to a Christmas concert in Blackpool during his illness and heard a cornet solo, it moved me to tears.

"I was inspired to return to music myself after many years and now play trombone in my local brass band.

"The support and love from that community has carried me through."

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