The Life of a Dementia Carer
A few months before leaving London I joined a Monday evening meditation group for gay men near Trafalgar Square. It was a lovely, welcoming space. One evening I got chatting during tea break to an older man. I told him I was moving back to Brazil soon to take care of my mom. ‘Ah,’ he said, ‘I once did the same for mine.’
‘How long did you live with her?’
‘Ten years. I was very good at taking care of her,’ he said prophetically.
It’s been now over a year since I’ve returned to Brazil to be my mom’s carer and help my brother run our family’s guesthouse. Mom has been easy to take care of; she does most things by herself. Her main struggle is remembering short-term things but her old memories are fairly intact. The main skill for caring for someone with dementia is patience. Patience with getting them through daily tasks; patience with the same questions every day, every hour; patience with them getting up throughout the night and telling you “don’t worry, it’s just me”. Every day you are reminded that this person needs your help and support in ways that you would otherwise take for granted.
I have vivid memories of my “previous life” in London. Recently, I was lying in the hammock after lunch (where I rest for an hour) when suddenly I saw myself on the Overground train. I saw the commuters around me, I saw myself taking the stairs down Camden Road and joining the throng heading for work. It dawned on me that when my mom repeats one of her memories (usually from her childhood) that’s what she’s also experiencing: she talks as if she’s back there, and it always ends with a sigh and a lament for happier times.
My mom doesn’t miss the memories she has lost; people like me are here to remind her what she has forgotten. She takes in that knowledge with some surprise then promptly forgets it. She lives in a world where she can’t remember anymore her sons’ birthdays, her favourite books or films. I once asked her what it was like and she said it was as if her life was a movie, where a piece of the reel had been snipped off and the remaining bits glued back together. She experiences the jump cut in her movie, the confusion of suddenly going from one scene to the next, but never knows what has been removed.
In 2014, when we first suspected she had Alzheimer’s, when I returned to Brazil for a year to help her get diagnosed and to save the guesthouse, I wasn’t happy. But today… I can say I am happy. Right in the middle of a pandemic, isolated in the Brazilian countryside, away from friends, with our family business temporarily shut down again. But, most importantly of all, I believe my mom is happier too - despite daily complaints (which I take to be normal ones for an elderly person).