When artist, Tony Luciani, set up his new camera blocking the doorway to his apartment’s only bathroom, he had no concept of the chain of events he had just set in motion.
Tony soon became absorbed in experimenting with the camera’s various dials, buttons and settings.
But his elderly mother was living with him at the time in his Toronto apartment, and he was her full-time carer.
Tony ignored his mother’s first request to use the bathroom. And then he ignored her second and third requests. And then, this happened.
It was an “aha” moment, Tony said in his recent hugely popular TED talk.
That moment changed everything between us, Tony told HelloCare.
“Up to that point I was behaving like someone who was supposed to look after an old person,” he said.
“It’s not unlike what a lot of people do, or think they must do, in a caregiving role with their elders. It can be a lonely time.”
Their living arrangements up to that point had been simply a “pile of disconnections”.
“Then serendipity happened. The photo-bombing episode awakened us. It opened our minds to the possibilities of what could and should be.
“We connected on a level we both were craving; something to play with and explore together.
“It gave Mom an outlet to express herself, and at the same time, it let me use my artistic creativity to visually describe it. This beneficial relationship gave us permission to be ourselves,” Tony said.
“Once we found something that clicked nicely together, our days became full of short waits for the next idea, and then the next. Once the decision was made to create a visual diary of sorts, we didn’t have to look too hard for inspiration.
“The puzzle of life started to appear as a whole. Everything snapped into place without forcing as individual pieces grew into a solid body of work.”
“Mum loved the process,” Tony said in the Ted Talk.
“The acting. She felt worthy again. She felt wanted and needed.”
Tony posted some of the photos online, and immediately found an interested and attentive audience, providing further inspiration. Their online following grew.
“People followed closely online and absorbed every picture I posted as if it was their own,” Tony said.
“We were telling their stories as much as ours. It became an adventure for everyone who followed us, and they totally climbed on board.
“That alone changed things for us both, as artist and model and as mother and son.”
“With every image we posted, friends were made along the four-year-long journey.
“We didn’t feel alone any more.”
Tony took his own photos of his mother, but he also gave her a camera asked her to take 10 photos each day.
“In the beginning it was rather difficult for her. She never took pictures before, so I helped overcome her confusion by taping up all the extra buttons on the camera to simplify it,” he said.
“I also noticed that since it was such a small camera, she was having issues holding it still, so I attached a tiny tripod with the legs all bound together, for a better grip.
“Her skill at capturing the mundane, the ordinary, shone through.
“She didn’t know the technical side of picture making, nor about aesthetics, but the fun and rawness was certainly evident.”
“I remember once, she disappeared from the studio where I painted, and after a while I went looking for her. I found her, completely focused, snapping pictures of the inside of the refrigerator. I asked her, ‘Why the fridge?’ And her reply was, ‘Well, after I cleaned and organized it, I wanted to record how it should look. These pictures are evidence, Tony, to remind you what the inside of this refrigerator should look like.’”
Each day, the two would sit together and talk about their work.
Tony said his main piece of advice for someone caring for a loved one who is living with dementia it to have patience.
“Absorb and love the opportunity of spending time with a dependent.
“Answer every question as if it was the first time asked. For people with dementia, it ‘is’, for them, the first time they are asking.
“Make their time as happy as you can. Find a common interest or activity to do. It doesn’t have to be anything spectacular or profound. A walk perhaps.
“Don’t get upset and frustrate them by what you perceive as being ‘your normal’. The idea of normality for dependents has changed. Accept, and embrace it.
“Don’t forget these moments, and because they cannot remember, it doesn’t mean that they don’t feel it instead.”
Tony’s mother no longer recalls taking photos.
“She said to me, ‘This picture is wonderful! I love it so much! Who took it?’
“I replied, ‘You did Mom.’
She answered, ‘Wow! I must be really good!’
“You are, Mom, you are,” Tony said.
Tony is now raising funds to support people living with dementia. In September 2019, with “A Walk to Remember” he will walk from France, over the Pyrenees Mountains into Spain and to the Atlantic Ocean. To make a donation, click here.
You can view all Tony Luciani’s photographs here.
And you can also visit Tony’s painting website here.
