It’s early June. Over two months have passed since the adjournment of normal life. It’s around 11 o’clock on a bleak, sunlit morning and in soft tone I explain to my grandad why he mustn’t go to the supermarket.
There are a few seconds of silence. He takes long, deep breaths and I begin to convince myself that he’s wheezing. “Right, right,” he says slowly. “How long’s this been going on for then?”
For the moment, my grandad knows about the virus and the risk it poses to him — a septuagenarian with a long-history of lung disease. I tell him that either my mum or brother-in-law will be dropping groceries off, from a distance, that afternoon. We do this every day, alongside frequent calls and hourly texts, because it’s all we can do. I tell him to listen out for the door and remind him that nobody can come inside at the moment.
In an hour or two my grandad will have forgotten the bulk of what’s just been said. The critical information he has been provided with will dissolve and trickle away. Our most recent conversation will never have happened. Old memories will compensate for the shortage of new.
He might — not for the first-time during lockdown — leave the house and cheerfully stroll towards the local sandwich shop or his favoured, but now boarded-up betting shop. I see lethal, imperceptible aerosols floating his way. I worry today’s the day he won’t be able to find his way back home.
Every morning my grandad awakes deprived of context. The reason for this is that over the past eighteen months or so his brain has gradually been losing the ability to store new information. Dementia, a disease that rips through families like the emergence of a dark, long-held secret, has started to take hold.
All the signs, in hindsight of course, had been there for some time. The repetition of questions, conversations and anecdotes. The lost, searching expression that covers his face — and breaks you in two — when he can’t locate the correct vocabulary. The contrast between his detailed and frequent recollections of descending the pit at Wigan Junction for the first time as a sixteen-year-old, and the helplessness when trying to recall his most recent meal.
We reached crisis last autumn when he stopped eating almost entirely. After intrusive investigatory procedures on stomach and lungs, and GP appointment after GP appointment, it was agreed that the cause was psychological. To collective familial relief, a referral was made to the memory service.
I sat in silence during the initial hour-long assessment as my grandad grappled with innocuous questions and tests of recollection. For much of it his brow was furrowed, and his fingers trembled as he ran them through his silver-white hair. He occasionally cracked jokes to mask the embarrassment and distress he obviously felt. The nurse smiled gently and before she left quietly indicated that a diagnosis was impending.
It was around a month later that my mum received a phone call from the memory service: “A diagnosis can’t be made for Graham at this stage,” came an apologetic voice. There wasn’t enough evidence on the subsequent brain scan to make a definitive judgement — he would be referred back to the GP who can then re-refer as things “evolve”. The road to diagnosis, we now understood, would be a protracted one. I later learned that even in patients where dementia is “readily suspected” it takes an average of 2.8 years to receive a diagnosis and access specialist care. For now, as a family, we had to begin grappling with this disease on our own.
In his ground-breaking book Contented Dementia, clinical psychologist Oliver James details a method for managing the condition which aims to facilitate a high quality of life and foster emotional wellbeing. Put simply, relatives and carers should — as much as practically-possible — allow the person with dementia to live in their own reality.
Once you understand that, in its early stages, dementia is a disease characterised by just one major disability — a defective short-term memory — you recognise that the person you love hasn’t been swept away, but rather you must learn new ways of communicating with them. In theory, it’s straight forward: you should never contradict them, you should avoid asking questions, you should always follow their lead. With patience, you can carve out a space in which they can be their whole self again.
When my grandad calls to tells me about the 1985 FA Cup final, as if it took place that afternoon, he isn’t going mad. He’s just watched a BBC re-run and his long-term memory is simply filling in the gaps. I know that over three decades have elapsed since Norman Whiteside cut inside and curled an extra-time winner past Neville Southall. But for the duration of that conversation my grandad is content, his words flow in warm Lancashire intonation, and he is himself again. Between us, we carved out the space.
Yet, for the most part, a pandemic proscribes this strategy. My grandad’s current reality, composed of a collection of long-term memories from a pre-Covid world, could prove fatal to him. We are forced to refute, challenge and query. We are forced to do damage. In the hours that follow he can undergo a steep spiraling down into a chasm of confusion and alienation. This is the point at which global and personal crises intersect and scrape up against one another. What follows is a long, deliberate process of soothing and lulling in order to reconstruct the belief that he is fully in command of his thoughts.
Tomorrow we will do it all again. Dementia — particularly dementia under lockdown — yields duplicates. We live on replicated dialogue, frustration, and bouts of isolation. Yet cruelly, for all these days of reiteration, there‘s still no protection against that moment, when the shopping bags are placed onto the doorstep, the slate blue of my grandad’s eyes meet mine and once again he asks, “Aren’t you coming in?”
