I strode out across Clapham Common on a June day in 2018, like I often did, with the mission of making it all around the edge and back home before Martin got in from work. How I loved the common, with its expanse of heath dotted with woodland, like a piece of countryside picked up and dropped on to the streets of south-west London.
That day, the grass was already turning brown after a few weeks of dry weather. A group of kids in school uniforms were sprawled out, enjoying the warmth and a bag of Greggs doughnuts. A young mum, still with the energy and enthusiasm to bother in the heat, was chasing her giggling toddler around in circles. All about me there was a sense of relaxed summer chill, that sort of ‘shoes off, grass beneath your feet, laughing in the sunshine, nothing really matters’ feeling. Well, that’s what I saw, but it wasn’t what I felt. It was like looking through a double-glazed window on to another world of which I had no part. It was a strange sense of disconnection. Of seeing others laughing, enjoying the moment, while increasingly I felt, well, nothing. Just flat. Utterly flat.
I hadn’t felt completely myself for years. So much of the time there seemed to be a lingering sense of anxiety within me. It was hard to explain to people what the problem was or what had caused it. I just felt uneasy, different, and the thought of going places I didn’t know or meeting people who were new filled me with dread. I’d always been very independent and enjoyed my own company, but this was different.
That day was particularly bad. I’d hoped that a brisk walk and some fresh air might help. Sometimes it did. But nothing seemed to totally shift this weird sense of unease that had lodged somewhere just below my chest.
When Martin got in from work that evening, I tried to explain to him how I was feeling. Once again, he suggested we go out for dinner at the weekend to talk it through. Again, I couldn’t face it.
‘I just feel so, so… eurgh,’ I said.
Over the next few days I went over and over what was going on with me. I didn’t feel anxious all the time – it came and went in waves – but I knew that even when I was doing something I loved, like going for a walk or cooking, it could reappear at any moment. It was sort of there, beneath the surface, like the muddy depths beneath a still pond.
Deep down, I knew I had more reason than most to worry. My family history was littered with Alzheimer’s disease. For years, my greatest fear had been that one day it might come for me.
The diagnosis
It was a sunny morning in May 2022 when Martin and I drove once more to the National Hospital for Neurology and Neurosurgery, near Russell Square in London. I was desperately anxious and nervous and I kept fidgeting in my chair, while everything around me appeared so still and controlled. Maybe that feeling of order was why I couldn’t quite believe that my life was about to be knocked entirely off its moorings.
Martin and I sat next to each other across the desk from the consultant. We made some small talk about the weather as I scanned the desk for any stray reports or letters that might give me a glimpse as to what was coming my way.
‘So your results are back,’ the consultant said slowly. ‘And yes, I’m afraid to tell you that you do have early-onset Alzheimer’s disease.’
Martin and I stared at him. Neither of us said a word. Neither of us moved a muscle. The consultant’s words hung in the air like some kind of nuclear dust. We sat rigid, locked in suspended animation between everything our lives had been before this moment and everything they would become beyond it. My heart was pounding and my head started to bang, as if I could actually feel and hear the blood rushing around it. This was all just too much.
We drove down the road we’d driven down a million times before, opened the door to the home where we’d brought up our boys, Nat and Mackenzie, then 22 and 19, and sat in the front room and watched TV. Nat was away in the army; Mackenzie was out with his mates. Everything was normal. But then what was our alternative? There was no Plan B. This was my life now.
My new reality
There are few families anywhere in this country who haven’t been impacted by this terrible illness in some way, be they parents, partners or children.
Certainly, my family has had more than its fair share of it. My grandma, Mum, Dad, my Uncle Barry… They were all taken by it. It’s like a curse that keeps coming back to claim us. For those of you fortunate enough not to have been touched by this disease, let me give you a brief explanation. Alzheimer’s disease is the most common form of dementia and it affects people’s ability to remember things, their behaviour and their ability to think.
Generally, it starts with feeling a bit confused and then, little by little, day by day, it becomes harder and harder to remember things or to function in a normal way. It’s caused by a build-up of plaque (like you get on your teeth if you don’t brush them) around cells in the brain. After a while the brain cells are destroyed or die and then, well, you can imagine what happens. But if you’re thinking, ‘Hang on, this is an old person’s disease,’ well, you’re quite right. There are about a million people in the UK with dementia at the moment, according to research by the Alzheimer’s Society. Just 70,000 of them are under 65 and are described as having ‘earlyonset’ dementia, so I’m part of a pretty exclusive set. Although it’s a set I’d have done anything to avoid.
Lost memories
It’s autumn 2023 and in front of me, on the glossy white kitchen table of our family home, lies a huge pile of old magazine and newspaper cuttings.
They’re interviews with me from the past 40 years of my life as a television presenter and journalist. There’s a picture of me in a very 1990s red power suit, with my GMTV breakfast show co-host Eamonn Holmes’s arm draped around me (who thought that was a good pose?!). And there are some hilarious snaps of me, all hot and sweaty, when I appeared with Brendan Cole as my partner (for a few weeks, at least) on the BBC’s Strictly Come Dancing.
On the whitewashed shelf along the kitchen wall, between a spider plant and a pomegranate-scented candle, are framed pictures of my family. There’s one of me and Martin, smiling outside a film premiere. And another of the pair of us with our gorgeous boys when they were little, on the beach in Dorset, where we used to go on holiday.
Everywhere I look there are memories. I know they’re there. They must be there… That’s what a home is – a house built from memories. And yet so many of them feel out of my reach now. It’s like I stretch out to touch them, to recall the photoshoots I see in the magazines or the moment we took that photograph on the beach by the windbreaks in Dorset, but then just as I’m about to grasp it, the memory skips away from me. And I can’t catch up with it.
And that’s how it is for me now, living with Alzheimer’s. That’s what ‘they’ (whoever ‘they’ are) call it: ‘living with Alzheimer’s’. Not that there’s any choice. It’s not like living with ugly curtains or living with noisy neighbours. You can rip down curtains or move away from a rowdy house next door, but I’m not able to escape Alzheimer’s. It’s staying right here with me.
Our day-to-day now
MARTIN: As I start writing this in January 2025, Fiona needs a lot of help. She needs help showering and brushing her teeth. She can do these things physically but is unable now to think about how she should do them. She can put clothes on, but may not put them on the right way around, so she does need help dressing. She can no longer use her phone; she’ll look at it but isn’t able to work out sending a text message and doesn’t even think to do that.
There have also been things I’ve had to do for her that are far worse than putting toothpaste on her brush. I’d ask myself: can this get any worse, can this really get any worse? But then it does. And that becomes routine. I’ll think to myself, ‘Well, I don’t want anyone else to have to do this for Fiona, so there’s no option but to keep going.’ I’m just trying to give her the best care I can and to make her feel as safe and secure as possible.
In my darkest moments, I’ve thought about what the future might hold. Do we reach a point where I have to say, ‘OK, we can’t cope here,’ because Fiona wouldn’t want me and the kids to do the really basic stuff that’s so undignified? Will she have to go into a care home? But it all feels wrong – we’re still relatively young. How could Fiona move into a care home meant for old people with walking frames? At this stage of our life, it feels so, so wrong.
Sometimes Fiona puts on that mask of hopefulness she’s so often worn. She’s no longer the independent woman I fell in love with, but sometimes she’s as stubborn as she’s always been. Part of her is still the Fiona I’ve always known, but much of her now is not.
I miss her. I miss my wife.
My Life With Alzheimer’s (Macmillan) by Fiona Phillips is out now