‘I knew the terror of lost time’: how my father’s dementia echoed my own alcoholism

When my father began to forget words, and then basic skills, I sensed his fear. After my own alcoholic blackouts, I understood what he was going through

The radio was playing in the background of my parents’ kitchen the first time my father forgot how to eat. It was July 2015 and the news was bad. My parents and I sat around the table where they had first taught me how to use a spoon. Though it was a mild night, my father huddled against the radiator for warmth.

I can't remember what to do, he said. He held his empty fork before him as though it were an alien object. What do I do, he asked, a tremor in his voice, with this? My mother's fork was hidden in a twist of pasta that she had twirled up from her plate against the curve of her spoon, and he looked from it to his own in confusion. In the lamplight, fear changed the shape of his eyes. He knew a fork is not something you forget how to use.

I glanced at my mother. She and I were now on the same side of an invisible boundary separating us from this man we loved. We jumped into action, wanting to wrap him in humour and solutions. My mother cut up his pasta while I showed him another way to load up the fork. His expression was one of childlike relief.

It would be untrue to say this forgetting came as a surprise to any of us, but I’ve since thought that one of the most complex dynamics in a family is navigating everyone's right to denial. I was very familiar with denial. Three years earlier, I had stopped drinking. (It's funny how we say that, "stopped drinking", as though the only liquid worth talking about is alcohol. Had I stopped drinking entirely I would have had about three days to live.)

Over the course of my early 20s my drinking had spiralled out of control. After a series of blind, impulsive actions that strained many of my relationships and culminated in a serious motorbike accident, I ended up in a psychiatrist's office, bruised, anxious and depressed. He prescribed me antidepressants and used the word "alcoholic", which seemed dramatic. I felt defensive, although not so much that I refused to listen.

On his instruction, a few days later I went to my first Alcoholics Anonymous meeting. I was almost 27. Scrolls hung from the walls and laid out the Twelve Steps. They mentioned God a lot, which made me uneasy, and at the end of the meeting everyone held hands and recited a prayer. I didn't know what to make of it, but I kept going back, because some of what I heard there made sense.

The longer I was sober, the more I realised I had been in denial about all sorts of things. For example, blackouts. I did not believe that I had blackouts when I drank. But even when you glimpse the truth you’ve been working hard to ignore, there's no guarantee the insight you’ve gained will stick. You might grasp it for a minute or an hour or a day before you sweep it back into the shadows. After all, denial is about protection – from pain, from guilt, from fear. It buys time to adjust, a little moment of grace before facing the full force of a change or a loss or a difficult truth.

There's no halfway with alcohol blackouts: they come down like a fire curtain, bringing swift and total coverage. When the level of alcohol in your blood reaches a certain point – from above roughly 0.16%, which is twice the legal driving limit – it brings about changes in the brain and impairs the hippocampus, the part that regulates memories and emotional responses. It takes its name from the Greek for seahorse (hippos, meaning horse, and kampos, meaning sea monster) on account of its shape, like a little curved tube. Once the circuit breaks, so does the capacity to make new memories, and you go from having an internal timeline of your actions to losing track of yourself.

When I drank, I would sometimes wake up with bruises I couldn't account for, hours of lost time. Whole nights had to be pieced together from other people's memories. This detective work was shared with friends the morning after, over more drinks, our hungover thirst irrepressible. We would reconstruct from our combined scraps the shape of the night before, as though we were playing a game of consequences. Sometimes, this collective remembering brought me no spark of recognition, and I would feel a creeping dread as I listened to my friends tell a story I did not recognise, knowing they were talking about me.

In our different ways, my father and I were both suffering from diseases of forgetfulness. Though I didn't yet have a name for what was happening to him, there was some comfort in the thought that I understood a little of what he suffered. I knew the terror of lost time, and I wanted to protect him from it.

In my experience, addiction is rooted in the will to forget. And if addiction is about forgetting, recovery is an act of remembering – a slow reconnection with the parts of yourself that have slipped out of reach. It was late spring in 2015 when it first became clear that, while I was trying to rebuild myself, my father was sliding in the opposite direction. The edifice of his mind had begun to dismantle itself brick by brick. My mother and I knew it and did not want to know it, so we became forgetful, too, complicit in the cover-up.

Although it was reasonable for a man in his early 80s to lose track of certain things (keys, glasses, telephone numbers), I began to notice a different tenor to these losses. It was not just objects that fell out of his mental net, but occasionally facts and basic skills as well. The first time he forgot how to drive we were in rush-hour traffic on a busy London road, the evening sun low in the sky. We had stopped at a traffic light, and through my open window the city smelled of hot asphalt and petrol. With a nervous laugh he took his hands off the wheel in wonder, looked at me and said, "I have no idea what I’m doing." Thinking it a joke, I laughed, too – it was how I felt most of the time, I said. But when I saw his smile was one of uncertainty, not mischief, I felt a prickle of fear. I didn't know how to drive, and we were in the middle of three lanes of cars.

"Well, that thing's the wheel, which you use to steer," I said, pointing at it, with one eye on the red light up ahead. "That's the accelerator and that, there, is the brake." The light changed to amber. I prepared to hit the hazard lights button while frantically wondering what else I could do.

The light went green and, as quickly as he had forgotten, my father seemed to remember. On autopilot, he changed gear and inched forward with the other cars as though nothing had happened, then drove the rest of the way to my flat as normal. When we pulled up I felt as if I’d been holding my breath the whole way. "What happened back there?" I asked, with more frustration in my voice than I had intended. He had no idea what I was talking about.

After that my father started to get lost all the time. He had lived in the city longer than I’d been alive, and his sense of direction was usually unbeatable. For me, the child who believed my father would always be my compass, it seemed as though the world had started to spin in the wrong direction.

By that point, sobriety had lost its newness for me. My fears about the slow process of deterioration inside my father's brain made me feel itchy for escape, and I was scared I might have a relapse. Walking past pubs overflowing with flushed, happy drinkers, I tried to sell abstinence to myself as a radical choice, but it was lonely up on my high horse.

It wasn't so much that I craved the taste of alcohol. Almost without noticing, I was starting to romanticise what drinking could offer me. It came in semi-conscious daydreams, a picture of relaxation and conviviality, like those cinema adverts for strong liquor, where a beautiful group of friends laugh under a mirrorball, and no one ends up in tears or in hospital. The further I was from the chaos of where things had ended up, the easier it was to forget. My sobriety was beginning to feel mundane and fragile, and I understood I’d need to work harder to protect it.

I had been going to weekly AA meetings for a while. Every Sunday morning I’d join the recovering outside an unassuming east London doorway to drink coffees and smoke cigarettes before getting down to the business of remembering ourselves. Each week we would listen to the stories shared by other addicts and we would hear ourselves in their words so we didn't forget the truth of our affliction, a disease with the power to forget itself again and again.

With the tools I learned in those church basements and municipal halls, I worked to build a life in recovery. I made friends with people I met in the meetings, and tried my best to monitor and accept my addictive tendencies. But as I turned further away from the mess and risk and pleasure of living, I often wondered whether this new structure was nurturing, or simply restrictive in a different way. In moving from addiction into recovery, was I actually any closer to being free? I still felt vulnerable, more vulnerable than I had before I got sober, because I had nowhere to hide.

At the same time, there was no avoiding the reality that my father grew more vulnerable by the day. His was a disease from which there was no recovering, and as his condition worsened, small but vital details continued to crumble from the edges of his mind, things essential for reading the world: letters, names and gestures. Nouns were becoming elusive, numbers, too.

While my attempts to become responsible had led me to a wariness of pleasure, my father only wanted to eat ice-cream and apple pie. He no longer remembered the names of old friends, but the hot cross bun song was seared indelibly into his mind and he would gleefully sing it at random moments. We’d be talking about work, or the weather, or whatever Donald Trump had most recently said, and my father would burst out: "Hot cross buns, hot cross buns, give ’em to your daughters, give ’em to your sons … "

At first, it felt like a game, to be swapping roles. I’d always loved my father's playful side, his rebellious streak and deep love of the absurd, and these were things the changes in him brought to the surface. But he had also always been a steadying presence in my life, and I was afraid of losing my anchor.

For a while, my relationship with my mother was reduced to logistics and stiff conversations about my father's decline, and in our sadness we neglected the rest of it. Sometimes, we fought wildly against the invisible forces that were playing havoc with all our lives, and when we did we would collide, with our different ideas of how best to proceed with his care. I know now we were each protecting the other from certain truths we felt would be too painful to bear, but back then we were tired, and anxious, and afraid, and it was hard to always be generous. Nothing brings chaos to a family quite like grief. Our frustration had to land somewhere, and because we couldn't hurl it at the disease that was decimating the man we both loved, occasionally we hurled it at each other. For a time, it wasn't just him we lost, but one another, too. It's terrible that in a moment of stress an unkind word can feel like a catharsis.

For his part, my father was becoming a more difficult patient. Paranoia meant he grew suspicious of things that were designed to help. He would tear off the patches that delivered medication supposed to ease some of his symptoms, and although he was now worryingly shaky on his feet, refused to use the elegant walking stick we got for him. I started to find small, colourful piles of pills nestled between books on the shelves or at the bottom of vases holding flowers that died suspiciously fast (it turns out lilies don't like donepezil). Though his ability to be rational was lost, these acts of defiance in the face of the inevitable were small ways he could feel the comforting shape of his agency, which was something I understood.

The weeks unspooled in a monotonous chaos of lost things: teeth, glasses, sandwiches, people. I learned how to tread the line between persuasion and manipulation. He was now too frail to do much by himself.

In the wet January of 2016 my father was diagnosed with a form of Alzheimer's known as mixed dementia. The news landed in our family like a meteor. That I had seen it coming for a long time did nothing to mitigate the devastation when it hit.

My mother and I tried our best to adjust to the unpredictable pace of the disease. I learned that in Alzheimer's, as in alcoholic blackouts, the hippocampus is one of the first areas of the brain to suffer damage. This is why forgetfulness and an inability to form new memories are often the first symptoms. Now we had a name for the deconstruction at work in his mind, my father found himself bound by a new set of rules: no keys, no car, no going out alone. We locked the front door from the inside like guilty jailers, ashamed of ourselves, waiting for him to realise he was trapped.

The progression of his dementia made me think about identity. At this early stage in his illness, those who didn't know him well couldn't necessarily tell that he was out of sorts. That's what it's like at the beginning – a disorganisation of the building blocks that make a person who they are: their memories, their skills, the things they know about the world around them. They are themselves, in the process of becoming not-them, like a familiar reflection in a mirror that has cracked. Who are we without our memories? If they disappear before the rest of us, what's left?

Before long, a new expression started to settle on my father's face, one of optimistic simplicity. It was comforting to think of what was happening to him as a slide back towards some kind of childlike state, but the truth was less consoling than that: loving someone with dementia is more like watching sinkholes open up right in front of you. Somehow you have to accept constant uncertainty.

Watching his dementia take hold also changed how I thought about time. I soon learned it was better if I could surrender to the reality of the illness in the present, to what my father was like now, rather than longing for how he used to be. Painful though it was, as he slipped further towards silence, the impression of the vigorous, alpha man he had once been softened, and was slowly replaced by the quiet, benign presence he had become.

The thing is, it's comforting to believe in a unified self. Though we change as we grow and develop, there is solace in the sense that our child selves exist in continuum with our young adult selves, our middle-aged selves and eventually our old ones. The idea is that we grow in wisdom and experience and learn from our mistakes, but there is still some essential "us-ness" that carries us through from cradle to grave. Memory is one of the ways we hold on to it. Stories are another, the accounts we give of ourselves and the versions of us they cement in the minds of others. But really, all we ever have is an impression of who we are, made up of our hopes and beliefs about ourselves, our denials and repressions, our habits and obsessions, and the versions we see reflected back by those around us.

So what happens when a person stops being able to tell their own story? Memory and narrative give us a sense of wholeness, and the lost time of alcoholic blackouts and the lost time of dementia are missing bricks in the construction of a coherent self. For the addict, the drive towards oblivion is partly the drive to escape from the self, to forget our pain and live, at least momentarily, in the now. I tried to see what awaited my father in this way. As his disease progressed, I knew it would claim more of his autonomy and independence, but maybe it would also take him towards a different kind of freedom, one of unencumbered consciousness. A life without regret or anxiety, lived in the present.

By the summer of 2019, my father was having frequent seizures, and the revolving door of paramedics and ambulance rides and hospital stays that, in our medicalised society, heralds the end of a life, had begun to spin. I tried hard to face the fact that he was dying. Most days it was more than I could bear, but I was wary of the false comfort of denial, so I forced myself to stare it down. He is dying, I said out loud when people asked how he was. He is dying slowly, I heard myself say at social events, and watched people back away.

Losing someone slowly while they’re still alive is a strange kind of grief. The Swiss-American psychologist Pauline Boss calls it "ambiguous loss", a suspended mourning that stretches indefinitely. We think of absence and presence as opposing states, but in the addict, or the person with dementia, they come together. The person you love is there but not there, endlessly changeable in themselves and in your relationship with them. The finality of death is followed by the process of mourning, which, though painful, has a natural logic to it. But how do you mourn a person who is still alive?

Soon, my father's dependence was total, and he needed more care than we could give him at home. We were extremely lucky to find him a room in a nursing home not far from my parents’ house, and for a few months my mother and I fell into a rhythm of near-daily visits armed with chocolate eclairs and bunches of yellow roses, because they were suddenly his favourites. But several months later the pandemic hit, and we were thrown into a new world of fear and anxiety. We did our best to adapt to the government restrictions. To minimise our risk of exposure to the virus, my partner and I got used to walking the two hours it took to cross the empty city between our flat and the nursing home. There, we would try to communicate with my father through a thick pane of glass, like a pair of passing mimes.

The week my father was to receive his first dose of the vaccine, I got a call from the care home to say that, along with eight of his fellow residents, he had tested positive for Covid. Within a week he was gravely ill, and because my mother's heart condition made her highly vulnerable to the virus, I couldn't go to his side without leaving her alone for 14 days afterwards. Instead, we staged a digital deathbed scene, using an iPad. We spent his last days watching the rise and fall of his chest and listening to his ragged breaths as carers and nurses in masks, protective bodysuits and surgical gloves risked their own health to ease his transition. Eleven days after he caught the virus, he died.

My grief was intense and physical, a deep ache, but to my surprise I didn't want to escape it. I had been worried that when this time came, the pain of it might awaken my addictive drive, but the truth is, I had been living with grief for years. This final loss was different from those that had come before, but not worse, and I found that denial held no appeal. I wanted to feel the weight of it.

It's two and a half years since my father died. The image of him that was faded by dementia is gradually being restored to full colour. Just as I carry the imprint of my younger, wilder self within who I am now, I’m able to hold in mind the person he was before the illness, and after. I’m starting to remember the man who could remember.

This is an edited extract from This Ragged Grace: A Memoir of Recovery and Renewal, published by Canongate and available at guardianbookshop.com

In the UK, Action on Addiction is available on 0300 330 0659. In the US, SAMHSA's National Helpline is at 800-662-4357. In Australia, the National Alcohol and Other Drug Hotline is at 1800 250 015; families and friends can seek help at Family Drug Support Australia at 1300 368 186.

Follow the Long Read on Twitter at @gdnlongread, listen to our podcasts here and sign up to the long read weekly email here.