I can’t say exactly when my mum forgot who I was. But one day out of the blue about two years ago, she asked me if my mother was still alive. We were sitting having tea and the question hung in the air for a few moments while I tried to process it and think of how to respond. I can’t explain what it felt like, that moment when I realised that my whole life had fallen into a gaping sinkhole inside my mother’s mind, never again to be retrieved. I wanted to scream at her, ‘Mammy, you’re my mother!’ I wanted to crawl into her lap and hope her body might remember even if her mind couldn’t. Instead I just said, ‘Yes, she is.’ She took my hand in hers and stroking it said, ‘She must be very proud of you.’ Fighting the torrent of tears that would come as I drove home later, I replied, ‘I hope so. I hope I’ve made her proud.’
Alzheimer’s disease is a ruthless and cunning thief. It steals a person’s memory and their sense of self slowly, stealthily, right from under their nose. Nothing is sacred. My mother battled it heroically, desperately trying to cling on, determined not to hand it all over without a fight. After she moved into a nursing home, my brother, sister, and I discovered in the drawers at home countless notebooks in which she’d written, over and over, information she’d obviously been fearful of losing: her own name and address, dad’s name, our names and birthdays, other significant details. Over time, the writing became less legible and the details more sketchy, letters missing or misformed, part of a name omitted, numbers and dates confused, until even her own name became a mere fragment. It was the most awful, most tangible, record of a mind in decline. In those small scribbles, her panic was palpable.
She never spoke about it, stoutly refusing to acknowledge there was anything wrong. For a while, she tried to blame her lapses on dad. ‘I think there’s something wrong with him,’ she’d tell me conspiratorially. ‘He keeps losing things. As soon as I put something down, it disappears.’ I think we were all in denial to some extent. There were early signs, most notably a preoccupation with her childhood. She would go over the same events repeatedly, telling and retelling the story, frantically searching in the rubble of her past for something to hold onto as her grip on the present loosened.
One day when I arrived to the house, I could hear her from the hall chatting away to someone. When I got to the sitting room door, I realised she was alone. She was watching the weather report on RTE and I observed her for a few moments engaged in a full scale conversation with Evelyn Cusack. When she eventually saw me, she didn’t flinch. Instead, she introduced me to Evelyn, telling her I was a teacher, smiling broadly at the imagined response. In a strange way, it made absolute sense to me. The warm, familiar face on the screen had become as real to her as mine, its owner a trusted friend.
I knew instinctively what I had to do. I sat there, making small talk with the weather lady, commenting on her outfit, asking if she’d any holidays planned, until she signed off. Mum was thrilled, but in that moment I knew that having an imaginary conversation with a woman on the television was the least of the challenges I would face in the months and years ahead.
The thing about Alzheimer’s is that it’s not only the sufferer who forgets. Those who love them forget too. Faced with a stranger who knows neither themselves nor you, it’s easy to forget who they once were. The changes in personality and demeanour over time are catastrophic. Growing up, cursing was forbidden in our house. Even ‘Shut up,’ would be met with the full force of mammy’s ire. This made it all the more strange and funny – because the truth is that there are many funny moments too – when mum developed what can only be described as a foul mouth. I never got used to hearing her telling me to ‘fuck off’ or launching an expletive-filled tirade at the caring staff.
On one occasion, I had taken her out for a drive and we were stopped at traffic lights. She looked up at a sign over a sex shop and started to read: ‘Super Con…. Super Con-do…. Super Condom.’ Then she asked me, ‘What’s a condom?’ I sat there, willing the lights to turn green, as I tried to explain to my mother, with whom I’d never had any kind of conversation about sex, what a condom was. I muttered something about a rubber and she said something about putting a rubber on a pencil, at which surreal point the lights changed and I managed to distract her.
Part of me found this more liberated version of my mother intriguing; perhaps it was less a distortion of her personality and more her true nature expressing itself uninhibited. I wondered what kind of relationship I might have had with a mother who felt free enough to tell those who deserved it to ‘fuck off’, and how different I might have been as a result. But philosophical musings aside, I simply missed my mum. When my own daughter was born, I found myself constantly wanting to ring her for advice or to tell her something my baby had done, but by that time she didn’t trust or understand phones and she was fast forgetting she’d ever been a mother herself.
My dad died last November. Mum’s illness had taken a devastating toll on him. I miss him terribly, but I discovered that grief was not a shock to me. When a loved one suffers from Alzheimer’s, they are not dead, but you are grieving. Every day. For years. Mum is very happy in the nursing home where she lives. The aggression that marked the early days of the disease has given way to a quiet acquiescence. She has the care of exceptional people who value her as she is, untainted by memories of how she used to be.
Her smile remains unchanged. In some ways, I think she may be happier now than she ever was. Every now and then, she lights up suddenly, and out of the stream of incoherence comes a gentle ‘That’s lovely,’ or a shocked ‘Jesus, Mary and Joseph!’ And in those fleeting moments, I can see my mum clearly, and I know there’s still some part of her hanging on, a final defiant two fingers to the Alzheimer’s.
I gave her some markers and a notepad on her 87th birthday recently. Its pages are already filled, rows and rows of lines and dots. When I visit, she reads it to me. I can’t make sense of what she’s saying but I’m beginning to think that she can. My brother describes it as a kind of code and I wonder if he’s right. Perhaps it’s we who are in the dark.
These days, I don’t know who she thinks I am, or what my visits mean to her, but I hope more than anything else, she senses that she’s loved. The words mean nothing to her now, so mostly I just hold her hand and have imaginary conversations with her, hoping that in the midst of it all, some elemental part of her remembers I’m her daughter and knows how very proud of her I am.