Some nights I dream of riding my beautiful chestnut horse, galloping across a series of fields, the rhythmical drumming of the horse’s hooves filling my ears. I am laughing from pure exhilaration. I dream I am that free spirit again.
But then I wake up and the truth caves in. Three-and-a-half years ago I was diagnosed with Alzheimer’s. I will never ride again.
I am in my early 60s. I am a mother (to one daughter) and grandmother (to one seven-year-old granddaughter). I have a large dog and small cat. I live in a beautiful 18th-century thatched cottage in Oxfordshire.
Most mornings I walk our German shepherd dog, Mozart, through the fields.
I am also a wife. I married my husband Chris, a chartered engineer, eight years ago, just before the Alzheimer’s reared its head.
I’ve got PCA Alzheimer’s (or Posterior Cortical Atrophy to give it its full name) — the same type of Alzheimer’s which afflicted author Terry Pratchett. It affects the back part of the brain which governs all things visual i.e. perception, orientation, spacial awareness, motor skills, how you perform tasks in a sequence, and, worst for me, literacy skills.
As a writer this is inconvenient to say the least. Writing has been my lifeblood for 25 years. It is who I am.
I compare it with having a very exaggerated form of dyslexia, coupled with dyspraxia, which affects physical coordination, and dyscalculia, also known as maths dyslexia. With the passage of time these become increasingly extreme and daily life more of a challenge.
The simplest of tasks — making phone calls, putting a plug in, wrapping a present, handling small change — are out to thwart you.
I look quite normal. I am capable in my own environment, but I get jittery when I go out into the world. Going to shops on my own is almost impossible now. A flight of steps becomes Everest.
In retrospect, I realise I began developing symptoms eight years ago in my mid-50s. Chris and I were newlyweds, but we’d known each other a long time.
We met at a party in our 40s and went out for a short time. Even when we drifted apart, we remained friends and it was Chris who, 20 years later, helped me after my partner died of a heart attack in 2008.
Slowly over the course of the next year we both realised our feelings towards each other were far deeper. We married in 2009. Then things began to unravel.
Driving, which had always been a pleasure, became a thing to dread. I could see perfectly well, yet I had problems judging distances and where to position my car in the road; also where to pitch my line of vision.
Road signs leapt out at me, filling me with panic. I’d arrive at my destination a wreck. I was always clipping the kerb or, worse, the door mirror of an oncoming car.
Then there was the day I was about to park in an empty space; except it wasn’t empty. The vacant slot was next to it. For several minutes I felt sick.
Around the same time, I developed an inexplicable fear of steps. I could climb with ease, but descending was another matter.
One night Chris and I were celebrating his birthday at a Michelin-starred restaurant.
All was perfect until I walked up the three wide, tartan-clad stairs to pay; then turned to descend. The short run of stairs took on mountainous proportions. With a fixed smile, I placed one foot in front of another — and fell.
It must have appeared comical to the dozen onlookers, and I played up to that. Chris helped pick me up. Laughing, I turned to the onlookers: ‘Would you like a repeat performance?’ And it took away the embarrassment.
As for escalators, I confronted these with horror. Then there was the time I buttered my plate instead of my bread.
Newspapers were the next thing to go. If I read an entire article, it was an accomplishment.
My husband commented I hardly read any more. I made some excuse. He didn’t know reading had ceased to be enjoyable for me and had become a strain. I didn’t tell him the letters and words danced in front of my eyes and I would lose my place or read the wrong line. I went on buying books, but they sat unread.
And I used to like playing backgammon. I played fast and furiously, but that, too, changed.
‘I’m getting the knack of this,’ gloated my husband, as he won three nights in a row and I fumbled around the board, picking up the wrong pieces.
I could see them clearly, yet when I went to move them, the crowded board merged into a homogenous blur. I remember thinking it was as though my brain was unable to co-ordinate with my eyes. I became tearful.
‘You’re tired, that’s all,’ my husband said.
I knew it was more than that.
We stopped playing backgammon. Scrabble met the same fate. Then I started losing my way round the computer. What was happening to me?
Chris is the kindest man on the planet, but he got irritated at my failure to see things in front of me.
‘Where is my coffee mug?’ I would ask. ‘I can’t find it.’
‘It’s there,’ my husband would say, pointing.
‘Where?’ I would reply. ‘There,’ he would say in a loud tone, as though I was deaf and would point again.
‘I don’t know where you mean,’ and I would peer again all around me, baffled, utterly unable to see what he alluded to. It was natural Chris would become impatient. When finally I could locate the object, I saw it clearly and could not comprehend how I could have missed it when it was so obvious.
Eventually, I paid a visit to my GP and said I suspected I had some form of dementia (like my mother who developed Parkinson’s and then severe dementia in her 80s).
He told me it was far more likely I was suffering from anxiety or depression, or both — understandable, given the fact my father had died and my mother was ill. But I knew I was neither depressed nor anxious. I declined the offer of pills and muddled on.
Chris also began to realise there was more to it. What was happening to his independent, free-spirited wife?
Every day, the brain gremlins plotted a different prank to play on me. I felt unsteady on my feet, and took extra care crossing roads as I could no longer judge distance. I felt vulnerable when out of my own environment. Crowds bothered me.
My self-esteem collapsed. I kept breaking things. I would have to pretend I’d forgotten my glasses again when I couldn’t count all the people at the choir I ran. I felt as though I was losing my mind. I’ve always been seen as slightly unusual by friends, eccentric even, but this was different.
Then three years ago, I booked to see my optician (interestingly, many people with PCA have it picked up by an optician). I went for a macular degeneration test; though I knew there was nothing wrong with my eyes. He confirmed this and agreed it seemed likely my symptoms were brain-related.
Armed with his letter, I went back to the GP who, reluctantly, referred me to a neurologist. A brain scan showed substantial atrophy in the back part of the brain, the ‘zone’ responsible for vision and motor skills.
When I was diagnosed in December 2013, it was a relief. Yes, I shed tears, but I could stop pretending. I’d become an expert at bluffing to cover up why I no longer did the things I enjoyed so much, like playing the piano or painting.
I think it was a relief for Chris, too. He told me he wasn’t surprised by my diagnosis and that he didn’t feel anything would change between us.
That’s not to say PCA isn’t a test of any marriage.
We live a very normal life at home. Cooking is still quite relaxing. I like entertaining, but nowadays Chris has to lay the table because I get confused.
If I miss the chair, or end up sitting on the floor of the train, I say to people: ‘I’m sorry. I have a visual problem.’ Then they relax.
But relinquishing your independence is a hard thing to do, for a once free spirit.
I have written 11 books and taught creative writing for many years, including in a high security men’s prison. They gave me my own set of keys and I would wander confidently through miles of corridor, unlocking doors without any sense of panic. What had happened to that woman?
Sometimes I want to yell out I am too young for this. Other times I forget there is anything wrong with me, and think the whole thing is a mistake.
But my husband has broad shoulders, and I have capitulated to the comforting reassurance of his arm, allowing him to shepherd me across the road and navigate the pavements. For good measure, a white stick warns people to steer clear as I weave drunkenly round them.
At the supermarket, other customers can be impatient, because I don’t look old, infirm or crazy. When it comes to paying, I tremble as I rummage in my bag for my wallet, then hold up everyone as I try to fit my card into the slot. I can feel waves of hatred from behind.
Chris admits people’s intolerance initially upset him, but today he refuses to let it worry him. His help has been invaluable. Nowadays I dictate to him what I wish to write.
My new novel, The Lupo Stick, has taken me seven years to finish, as letters, words, and entire sentences seemed to blank out on the computer.
PCA is degenerative; over the years it affects other parts of the brain. Chris and I do have conversations about the future, but then we put that back in the box and shut the lid. I am still a very independent person.
I have singing lessons with an opera singer. I write poetry, battling as I do with the inconsistencies of the voice recognition software.
I let myself loose on the piano and play whatever comes into my head, with my eyes shut. I paint my pictures. If I draw a horse, Chris will inevitably have to rub out some extra legs.
I would say my PCA has brought us closer than ever. I’ve adapted, as has he. I cannot imagine life without Chris, but I am perfectly able to manage; although he cares for me, he is not my carer. We are equal partners in everything.
Though perhaps one day I will need to teach Chris to apply my lipstick.
The Lupo Stick is out in paperback (£7.99) and as an ebook alzheimersresearchuk.org