Face to Face with Memory Loss

‘Where are you? I’ve been waiting for you for breakfast. I’ve saved half a roll for Cécile, she never eats much.’

Her words paralyse me. I am in my car, kilometres away, and I can’t breathe.
Cécile? My sister has been dead for the past eight years, and my mother, who has been in a nursing home for the past two, always eats breakfast alone. I look at my partner beside me.
Few things unsettle him, but I see confusion in his eyes.
I feel like my body is going to give up on me, or that it’s shaking inside. Seconds of silence, minutes. How can I tell her? Should I? Just like that, over the phone? I finally answer, feeling as if I’m in slow motion, as if every word were now going to crash against this new wall and would no longer make sense:

‘Mum, I’ll be there later, as planned. And Cécile, you know, it’s like Dad, she’s –‘

She interrupts me, clinically:

‘Oh yes, in the cemetery.’

Her answer goes straight through me. Like a second death. In eight years, I have never heard anyone mention my sister as though she were ‘alive’, entering a room to sit down and eat. This memory is all the more unbearable on account of the precision of its reality. Suddenly, I resent my mother: making me imagine my sister in motion, in my daily life, when I am her widow, her orphan – have you noticed that there is no word to describe someone who has lost a sibling?

In the car, the silence is tangible. Not a word is spoken, as if we wanted to forget what has happened. Above all, we don’t want to bring it to life, we don’t want to delve into what has just happened to us.

A few hours later, I’m standing in front of the nursing home. I can feel it: I’m afraid to push open the door to her room, I’m afraid to physically ‘see’ the break in the link to normality. My mother is there, sitting up. Very elegant, as always. Her coat is on the bed, her handbag is ready, her shoes are on, and she is angry: ‘I’ve been waiting for hours, let’s go.’ Where? ‘We’re going home, what am I doing here?’ That night, she escapes from her room.

I find her the next day, frail, very pale, in tears. This demanding woman, who manages her ‘fourth life’, as she often says, down to the last detail – like all her other lives and those of others before her – has become a small, distressed creature. ‘They told me I was losing my mind. That’s not possible, no one in the family has ever been affected by “it”. Why did it have to happen to me?’ She no longer wants to leave her room or go down to the dining room to eat. She wants to hide, to disappear. ‘I’m ashamed, so ashamed.’ She implores me: ‘Tell the nurses and carers, tell Dylan that I’m sorry."

See them? For months, in this corridor, I have been avoiding coming face to face with these little old people – women and men who were once strong, but who now wander around, prostrate, or sit in armchairs like dead bodies, their brains and eyes empty. It’s too difficult, too distressing. As if not looking at them would prevent my mother from going over to ‘the other side’, as if it would prevent me from falling into their abyss and protected me for ‘afterwards’. As if, above all, it would allow me to forget that this ‘non-world’ exists and is very much alive.

Each floor has a code, displayed on the wall, which must be entered backwards to allow only the ‘lucid’ to leave. I enter the code and try not to think: those we want to deceive/protect with this obvious subterfuge were once parents, employees, teachers, engineers – people now unable to find their room, say their name, recognize their spouse or children, read four digits – people who wander around repeating the same word over and over, or who seem ‘frozen’ in a chair.

The first evening after visiting my mother, leaving her to sleep in her new home, a bald woman was lying on the floor, blocking the door to the lift. I feverishly dialled the reception number: ‘A woman has fallen on the floor!’ The nurse on duty arrived, bent over the body on the floor, gently, slowly, affectionately: ‘Get up, Jenny, this woman has to get by.’ He stroked her elbow, helped her up, reassured her.

‘Am I done for? Am I done for?’ Now, every time I visit, this woman follows me, then turns around. Her deep voice and icy eyes paralyze me. Best to forget, and quickly.

‘Looks speak volumes.’ A banner bearing these words hangs in the corridor. Is it addressed to the carers? The visitors? The families who no longer look at their loved ones? That Sunday, I take it personally, this sign that points out my denial. Shame on me for avoiding eye contact with the lost residents, shame on me for walking faster to get to my mother’s room, where I rush in as if to save my life – phew, I didn’t see anyone, I didn’t meet anyone. But what am I afraid of? Being contaminated? Seeing myself in this life-size mirror that has suddenly been held up to me since the definitive, voluntary and lucid decision of this mother who chose to go into a nursing home. How can I, who have been advocating the truth for 40 years, who have made transparency and the dissemination of information a personal ethic and a moral lesson for others, who denounce the blind spots of society, censor and deny a place in my life and in my space-time to this home and to the human beings who are housed there?
For 40 years, I have devoted time to all the misfortunes of Belgium and the world, but over the past three years, I have not found a single day to look, listen and understand the belly of this world of silence and those who appear to be the living dead. What if it was just a semblance, and there was life in this ‘box’ we believe to be empty? What if they had something important, sensitive, different to tell us – to tell me – in this world that talks, tweets, WhatsApps and TikToks endlessly?
 

‘There is a place in the brain
where music lives,
where music plays;
time cannot touch it.
 
Through music,
we teach into a place,
the hiding hole of music,
to bring out memory.
 
Sound. Sound is with us
from the beginning to the end.’
Dr Klugman (Lucidity)

If there is a timeless place in the brain for music, surely there must be one for colours, animals, sensations, pleasure – right?

Sunday, 6 p.m. It is cold and dark outside. A small woman with short white hair is waiting on the chair near the exit, wearing her black coat, clutching her bag, wearing her shoes. In no time – is it the way she is sitting, ready to spring, her pupils moving from right to left, on the lookout for a moment of inattention from those passing by? – I can tell: she wants to escape.
I enter the exit code backwards, the sliding door opens, I walk through it, she follows me, she rushes forward, I stop her: ‘Where are you going, you can’t leave!’ But where did that come from? What right do I have? She is obsessed with the outside world, finally within her reach, and she yells at me without even looking at me: ‘Leave me alone. We don’t know each other.’ I block her, she pushes me, I call out: ‘Help, I need help!’ But who do I think I am? I am ashamed, I hope no one sees me. The little woman, locked in her own world, hates me for closing the lid she managed to push open. A cook arrives, I flee. Outside! My privilege, once hers. One day, my place will be on the other side of the door, and I will be stopped in turn by someone younger, who will prevent me from leaving. Best to forget, and quickly. Get to the other side. The right side?

How do ‘they’ manage it? I saw them embrace Jenny gently when she was spinning out of control. They didn’t abandon my mother when she was lost – ‘We’ll help you out.’ They change nappies, look at family photos, wipe foreheads in the middle of the night. I should ask them to teach me, to show me how to break down the barrier I can’t cross, how to bring this ‘non-world’ into the other one, the one that occupies me so much? How can I appropriate these corridors and people, whom my mother spontaneously adopted and made her new village – the last one? She normalized that too – ‘You’ll have to get used to it, I’m going to leave at some point’ – repeating the question that seems to spring from all these rooms: ‘Why do we live so long?’

What if forgetting made living easier? What if losing our consciousness of someone we knew so well allowed us to rebuild what was broken or damaged? On the days when ‘I lost my mother’, I found myself washing her, kissing her, caressing her cheeks, being tender and gentle. As if her sudden fragility and absence did away with mistrust and erased old grudges. As if I no longer had to be on my guard, protecting myself from her intensity and power, and could focus entirely on love, being present, and offering a helping hand. As if the disagreements no longer made sense, as if the conflicts themselves had been forgotten. Time now for subtlety, nuance, perspective and selflessness. Finally.
I have come to wish that Alzheimer’s would take over the world. Lebanese-Canadian author Wajdi Mouawad has devoted so many plays to the humiliations that have fuelled revenge and eternal divisions since ancient times. What if the world, in turn, ‘forgot’, in order to rebuild a future by accepting the other as they are, unburdened by the past, and therefore a new partner?

When La Monnaie invited me to write a piece on an opera that dealt with Alzheimer’s, I foolishly agreed. That’s so typical of me: agreeing to write about a subject I’m not an expert on and about which I have everything to learn. How arrogant. I owe readers an apology for this abuse of my position as a journalist. But I also owe thanks to the trap I set for myself: writing has forced me to put my denial into words. And to finally face memory loss head on.