'My mum has dementia and like Fiona Phillips she suffered brain fog in her 60s'

22 July 2023 , 06:31

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Emily Allen, pictured with mum Janet three years after diagnosis, spoke of her experience (Image: Allen family)

A grief-stricken daughter has described the shock at how her mother was diagnosed with Alzheimer’s disease in her 60s after suffering brain fog - just like Fiona Phillips.

She reveals how the family struggled so much in dealing with the diagnosis that they wouldn't use the condition's full name, referring to it instead as "the big A".

Janet Allen's journey mirrors that of Mirror columnist, journalist and television presenter who, we told this month, was diagnosed at 61 following bouts of anxiety and confusion. The former breakfast TV host had kept the illness secret for 18 months, again similar to Janet's experience as she and husband-of-45 years Andrew tried desperately to hide the diagnosis from their three daughters, the youngest of whom is Emily.

Emily, who was living about 80 miles away at university at the time of the diagnosis, told Mirror in a candid interview: "I think it's like the scariest thing. I think it's almost like the glimmer of hope that it could be anything else like you know; menopause, stress, depression, anything that could be causing memory loss. Alzheimer's is so horrible. I just think it's one of the worst bits of news you can get for you and your loved one."

Janet, a former teacher, was diagnosed with Alzheimer’s disease in her 60s (Allen family)

Janet's initial symptoms, just like in Fiona's case, included brain fog. She couldn't remember her debit card PIN and struggled with administration in her role as a teacher at a school for children with special educational needs. And, at just 60, the mum of three was eventually diagnosed with young-onset Alzheimer’s disease.

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Emily, a 37-year-old project manager now living in Manchester, said today: "Our denial was so strong that my dad didn't even tell us it was Alzheimer's, even though she had been diagnosed with Alzheimer's. It was only my sister went home - obviously we were all grown up and living away - when my sister saw the drugs that she'd been prescribed which were drugs for Alzheimer's.

"He'd originally just had no no she just got out of memory loss or something. So he didn't even want to kind of admit it to himself or to us and then once we did find out it, it was awful. Me and my sisters used to call it 'the big A' because we just couldn't say the word Alzheimer's. We'd be emailing each other and phoning each other up in tears, just saying, you know, how just awful it was."

Emily, pictured three years ago with Janet, says her mother experienced brain fog and anxiety suddenly (Allen family)

Mirror columnist and journalist Fiona Phillips recently shared her dementia journey (Daily Mirror)

While Alzheimer’s disease crippled Fiona's grandparents, mother, father and uncle, no one in Janet's family had been diagnosed with it before - or after - she was in 2010. Unfortunately, her decline has been considerable since - so much so she had to quit her job and, in 2017, her family made the tough decision for her to move to a care home in Reading, Berkshire, where's she's been bedbound in recent years.

Since her diagnosis, Janet has had three grandchildren, and the strain it has put on her marriage with retired accountant Andrew, 73, has been particularly tough for her family.

"It's been really difficult for dad," Emily, who has a two-year-old daughter, continued.

Janet Allen's experience shares parallels with that of mum-of-two Fiona (Daily Mirror)

"Bless him, he still goes, at least every other day, and you know, he really, really loves mum still and it's really, really heart-breaking. I and my sisters find it much harder to go because obviously that's our mum, and the relationship is completely different. Whereas I think for Dad, that's the that's the love of his life and the women who gave him three children and you know that he hasn't let go of the old mum yet."

Emily concurs with Fiona in that the stigma remains around the disease. Mum-to-two Fiona, though, is hoping to give comfort to others by sharing news of clinical trials, in which she is taking part, which could revolutionise future Alzheimer’s treatment.

Emily shares her optimism, albeit tainted by her difficult memories of seeing the disease eat away at her mother over a cruel 13-year period.

Fiona, pictured with Editor of the Mirror, this month spoke to Alison Phillips about her shock (Daily Mirror)

"I do think the drugs are coming on. I just really, really, really hope one day Alzheimer's isn't this horrible, horrible, long, drawn-out death sentence that it is today because it really robs the family of, like, a goodbye," the mother continued.

"I can't even have a conversation with mum now, but she's there. I'll go visit her in the home and her body's there, but obviously her mind isn't. It's a really horrible way of saying goodbye.

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"But I am hopeful. I think what's happened with COVID has given me a bit of hope. If you have the best minds on the case, you can get a cure out for stuff pretty quickly."

Around one in every 20 people with Alzheimer's disease is under the age of 65. This is called early - or young-onset Alzheimer's disease. Fiona, of south London, and Janet are among those diagnosed with this, as they were similar ages living otherwise healthy lives.

Janet, for instance, enjoyed reading but her love for books stopped quickly after her initial brain fog and confusion episodes. Her interest in Coronation Street waned too, as she felt there were "too many characters" of whom to keep track.

Emily stresses any form of dementia any affect anyone at any time of their lives. She said: "It is really scary actually. I think it's important to get the right diagnosis although it is a horrible, horrible thing to do. It does help."

The project boss, originally from Reading, is a supporter of Alzheimer’s Research UK, which continues to help highlight the disease. It has recently conducted research into young-onset dementia specifically and offers advice around Alzheimer’s disease itself.

Bradley Jolly