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THE clock is ticking for Fiona Phillips. And no one hears it more loudly, more clearly than she does herself.
With every day that passes, the breakfast TV presenter feels sure she is a 24 hours closer to being sucked away from her current life by Alzheimer’s, the terrifying illness which killed her mum Amy and, earlier this month, her dad Neville.
Fiona, 51, is too sensible and honest not to admit that genetically the odds are stacked against her.
Amy was only in her late 50s when she first started to be affected by the disease. Neville was in his late 60s.
Fiona said: “I have that feeling all the time that I am bound to get it.
“I keep thinking that I might only have five years left. But it is making me think I’d better make the most of life, so that’s positive, I suppose.
“I feel I’ve got to do everything now in case my mind goes. My husband Martin will say to me, ‘Will you just sit down’. But I can’t, I’ve got to be on the go all the time. Even dusting.
“So often I’ve thought, ‘I’d love to go there or see that’ but I haven’t because of work or something. But now if I want to do something, I just do it.
“The boys have been desperate to see Harry Potter Land at Universal for years and I kept thinking ‘Maybe next year’. But now I’ve said, ‘Let’s not wait any longer’.
“And I’ve got to get my things in order, then write Martin a letter telling him where everything is.
“I do hint about what I want to happen to me. But Martin just says, ‘Stop worrying. It is never going to happen to you’.
“But that’s a man’s behaviour, sticking his head in the sand rather than confronting things.
“I guess it’s distressing for him, too. He has been such a steady rock throughout everything that has happened with my parents.”
Fiona tries to follow a healthy lifestyle and takes gingko baloba, the herbal medicine which is believed to help people with dementia and memory difficulties.
But beyond that there is little she can do to safeguard herself against the disease. Years ago, she took a genetic test to see whether she would fall victim. She has still refused to look at the results.
She said: “Until they find a cure, I can’t see what the point would be.
“There would be nothing I could do to stop it. And by the time you know it is happening, it is too late.
“I think early onset dementia is like breast cancer. You are more predisposed to getting it if a parent has had it.”
But Fiona, who lives with husband Martin Frizell and sons Nathaniel, 14, and Mackenzie, nine, in London, is not after sympathy. She said: “The reason I’m talking about it is because so much more needs to be done about Alzheimer’s care.”
Fiona has spent 14 years seeing firsthand the shortcomings in the way the disease is handled. Her main concerns are lack of awareness of symptoms and poor family support.
She is passionate about the need for a range of therapies to be used in treatment. Fiona attacked the use of anti-psychotic drugs and sedatives on her dad, which she fears overloaded his body and killed him. She admits to still feeling guilt-stricken it took so long for anyone in her family to realise what was happening when her mum became ill in the late 90s.
Fiona said: “We went to our cousin’s wedding and Mum went to the toilet. She had forgotten to do up her skirt, so when she came back it fell down.
“Everyone was laughing and she burst into tears. She said, ‘There’s something wrong with me.’ But we said, ‘No, you’ll be fine’. And then she would ring me, crying on the phone.
“We thought it must be depression and her doctor prescribed anti-depressants. Mum and Dad were in Wales and I was in London so I didn’t see what was happening.
“One year, we went for Christmas and there was no food in. But I still thought mum was depressed. The signs became clearer after I had Nat when I rang to say, ‘It’s a boy’. Mum had been so desperate for me to have a baby but all she said was, ‘Never mind’. I was devastated and really cross.”
When Amy travelled to London days later, her illness became more apparent. She was diagnosed with dementia and deteriorated until she had to move into a home.
Fiona said: “It was awful. I had Nat and then Mackenzie. I was getting up at 3.30am every day to go to work. We had moved into a new house. I had loads of stuff on but I should have just given it all up to be with Mum. I feel so guilty that when she needed me most, I wasn’t there for her.”
Fiona is undoubtedly hard on herself. For, despite the pressures of her job and a young family, she still made the 10-hour round trip to Wales with the kids almost every weekend.
She said: “I’d drive back crying all the way. Mum would have been crying and begging me not to leave her at the home. Once she even lashed out at the boys. And I couldn’t understand how Dad was behaving. Of course, I didn’t realise he was already ill.”
Fiona spent days at her mum’s bedside before she died in May 2006, aged 74.
Fiona visited Neville but often he wasn’t at home when she arrived.
She said: “I felt so hurt.” Finally, he allowed Fiona into the family home. What she saw inside stunned her.
She said: “He was sleeping on a dirty mattress in the living room, stuff was piled up in the kitchen and he’d stuck up notes to himself as he realised he was losing his mind.
“I hugged him and there was relief in his eyes. I said: ‘Don’t worry, Dad. I’ll get you out of here’.”
Fiona moved him into a warden-assisted flat closer to her home where he lived happily until the last few weeks in a psychiatric hospital.
She is reluctant to criticise medical staff but is angry at the inadequate response for victims.
She said: “I am appalled by the lack of care and understanding in the medical profession. It is getting better but it is taking a long time and I fear the cuts will make things worse.
“After diagnosis, I wish families were told, ‘This is what help you can get. This is what you need to do’. That would help some of the thousands struggling to cope with this terrible, wicked illness.”
First Signs Of Dread Disease If you are concerned about a loved one, some of the first signs of Alzheimer’s include lapses in memory and problems with finding the right words. Other symptoms include – Memory problems: For example, forgetting the way home from the shops, being unable to remember names and places.
Mood changes: Particularly as the parts of the brain that control emotion become affected by disease. People with dementia may also feel sad, frightened or angry about what is happening to them.