Widow of dementia patient calls for more support for carers

You don’t stop being identified as a caregiver, said a woman who cared for her late husband full-time for 12 years.

David Threlfall, from Thornbury, near Bristol, had multiple conditions including sight loss, Lewy body dementia and had a stroke.

He died on June 22, 2023, and his wife Amanda said: “I so miss his cheeky smile and sense of humour, which he never lost. I want people to understand that caring never stops, and you become a former caregiver.

“You don’t get the same support as when you were a carer, but it changes you forever as a person, in some ways for the better, but there will always be a hole.”

Mr Threlfall struggled with vision loss initially and then, in 2020, had a stroke in his sleep.

In 2021, he was diagnosed with dementia with Lewy bodies – a condition that involves hallucinations and hearing or smelling things that aren’t there.

“The stroke robbed him of his remaining peripheral vision, and then the vision loss caused him hallucinations as well as day-to-day challenges,” Ms Threlfall said.

“But then Lewy body dementia also brings hallucinations.”

Mrs Threlfall said it took her a while to realize she had become a full-time carer for her husband.

While caring for him, she joined the Fishponds Carers Support Center to meet other carers.

She said they helped her apply for a carer passport – a document that allows a carer and their manager to discuss the flexibilities needed to combine care work and paid work.

“I found that if you were a parent, you had support for childcare issues as a carer (the only option was to take annual leave),” she said.

It is estimated that there are almost six billion unpaid carers in the UK.

Total spending for the last financial year on the NHS was £164 billion.

Most caregivers have to give up work and any form of income to care for a loved one.

Carer’s UK chief executive Helen Walker said being a carer has a “significant impact on your mental and physical health”.

“Many unpaid carers are exhausted, struggle to access respite breaks and, with little time for themselves, feel a loss of identity which affects their self-esteem, confidence and wellbeing,” she said.

“When a caregiving role ends, it can be hard to know what to do next.”

Mrs Threlfall said she had chosen to look after her husband and she enjoyed looking after him.

However, she said the last three years of his life had been “very difficult” as his health deteriorated.

“All in all, I was very lucky because David was grateful for everything he had and was never a whiner,” she said.

“We had a very close bond that was never lost during that journey.

“Not everyone has that connection with the person they care about, and when you have to make those sacrifices, it can feel really, really hard.”

On 13 June, the Carer’s Support Center hosted a series of presentations at the BAWA leisure center in Bristol to offer more support.

Mrs Threlfall said her husband was an advocate for carers and wanted to help others.

“I think the most powerful thing you can do is ask for help,” she said.