Released On 20th May 2021
Barbara's blog: The persistence of memory
My Italian mother broke her femur on 23 June 2020, just as lockdown was easing in Italy. She spent a whole month in hospital recovering, because she lived alone and could not be discharged, as she had no-one to look after her. I travelled backwards and forwards several times so that I could visit her, probably being one of the first to set foot on an aeroplane after the travel restrictions were lifted. It was during one of these visits, where I would walk into the hospital room wearing full PPE, that I realised that, while the fracture was repairing itself, my mother’s mind was unravelling, like a jigsaw done in reverse, where, one by one, the pieces slowly come apart and the picture disappears.
There had been signs before the accident. A struggle to find the right words, poor recollection of previous conversations, confusion and forgetfulness. I had a nagging feeling that mum’s optimistic disposition was fake, put on like make-up to stop me from worrying. But I was 1,400 kms away, as mum lived in Italy and I live in the UK, I have no brothers or sisters and my living relatives are mostly elderly so I realised that the minute I started to accept that mum was no longer fit to live on her own, I would have to step in and take over, potentially against her will.
In August, I travelled to the hospital and I arranged for mum to fly back to the UK to spend some time at my house to convalescence. Little did I understand about the implications of this decision, as I had memories of her previous visits, where she would talk to the children in good English and walk to Waitrose to buy doughnuts. This time she was not only frail, but also confused to the point of having no sense of time or place. I soon realised that the past 20 years, maybe more, had been eradicated from mum’s memory. She had no recollection of ever visiting me (“Your house is lovely, I’ve never been here!”), did not know I had been in the UK over two decades (“Remind me why you live in this foreign country now?”), could not remember I had got married (“You are wearing a wedding ring?”) and kept referring to England as Albania (“Are you Italian or Albanian? And the children?”). She would tell me things that I knew were not true in detail, as if she had really lived through them. She would confuse relatives and think people were still alive when they had not been for a long time. At times, she thought she was living through the second world war (“Don’t go out or the soldiers will beat you!”) and thunderstorms brought back memories of the bombings.
Like most mental illness, mum’s onsetting dementia manifested itself on a spectrum. She could be lucid and conversational one day, erratic and irrational the next. Her life had become an Escher drawing, walking up a staircase that any minute would flip her upside down, into a different room that had rearranged itself while she was in motion. Over and over. Her inner compass was unable to recalibrate itself and sent her on a rudderless journey, teetering by the subconscious precipice of her mind. During the darkest hours, she would wake in the middle of the night, wander around the house having put her day clothes on top of her nightie and tinkle the piano keys. When I came downstairs to coax her back to bed, she would welcome me as if she had seen me for the first time (“Oh I’m so happy to meet you, let’s go for a walk!”).
I desperately wanted to rationalise her behaviour. During the day, I would spend time describing the events of our lives in chronological order, in an attempt to re-educate her mind. And every night I would go to bed with a sense of dread, as I knew I would have to get up and help mum back to bed, trying to avoid conversation. Of course, it was all futile.
Mum now lives in a local care home and is currently waiting for a CT scan to confirm the doctor’s diagnosis of early onset dementia. When I embarked on this journey, I had not realised how many ethical, moral and existential questions would be triggered by what I was experiencing. But while I am learning to accept the inevitable and deal with the daily uncertainties, I agonise about the future and what is best for my mother, considering her English is fading fast, making it difficult for her to communicate and increasing her sense of unrest and frustration.
It is an impossible decision and I feel paralysed by it. But the good days fuel my resolution to do the best for mum, with empathy, as love persists after memories have gone.
Barbara works for a regulator in Canary Wharf, but lives a stone’s throw from the South Downs with her 15 year old cheerful and creative daughter, 13 year old funny and ingenious son and supportive husband.