A mother and son’s photographic journey through dementia

Artist Tony Luciani was testing out a new camera when his 91-year-old mother, Elia, snuck into the background of his photos. The spontaneous images that resulted sparked a years-long collaboration, with Luciani documenting his mom's life and spirit as she lived with dementia. In this touching talk, he shares the stories behind some of their favorite shots, capturing the joy and grief of caring for an aging parent.

When my 91-year-old mother, Elia,
moved in with me,

I thought I was doing her a service.

In fact, it was the other way around.

You see, Mom was having issues
with memory loss and accepting her age.

She looked defeated.

I tried to make her
as comfortable as possible,

but when I was at my easel, painting,

I would peek over
and see her just ... there.

She'd be staring at nothing in particular.

I'd watch her slowly climb the stairs,

and she wasn't the mom I grew up with.

I saw, instead, a frail,

tiny, old woman.

A few weeks went by,
and I needed a break from my painting.

I wanted to play with the new camera
I had just bought.

I was excited --
it had all sorts of dials,

buttons and settings I wanted to learn,

so I set up my tripod
facing this large mirror,

blocking the doorway
to the only bathroom in the house.

(Laughter)

After a while, I hear,

(Imitating Italian accent)
"I need to use the washroom."

(Laughter)

"Five minutes, Mom. I need to do this."

15 minutes later, and I hear, again,

"I need to use the washroom."

"Five more minutes."

Then this happened.

(Laughter)

(Applause)

And this.

(Laughter)

And then, this.

(Laughter)

I had my "aha!" moment.

We connected.

We had something tangible
we could do together.

My mom was born in a small
mountain village in central Italy,

where her parents had land and sheep.

At a young age,
her father died of pneumonia,

leaving his wife and two daughters alone
with all the heavy chores.

They found that they couldn't cope.

So a very hard decision was made.

Mom, the oldest, at 13,

was married off to a complete
stranger twice her age.

She went from being just a kid
and was pushed into adulthood.

Mom had her first child
when she was only 16.

Years later, and now living in Toronto,

Mom got work in a clothing factory

and soon became manager
of a very large sewing department.

And because it was full
of immigrant workers,

Mom taught herself words
from translation books.

She then practiced them in French,
Greek, Spanish, Portuguese, Danish,

Polish, Russian, Romanian, Hungarian,
all around the house.

I was in awe of her focus
and determination to succeed

at whatever she loved to do.

After that bathroom "aha!" moment,

I practiced my newfound camera skills
with Mom as portrait model.

Through all of this,
she talked, and I listened.

She'd tell me about her early childhood
and how she was feeling now.

We had each other's attention.

Mom was losing her short-term memory,

but was better recalling
her younger years.

I'd ask, and she would tell me stories.

I listened, and I was her audience.

I got ideas.

I wrote them down,
and I sketched them out.

I showed her what to do
by acting out the scenarios myself.

We would then stage them.

So she posed, and I learned
more about photography.

Mom loved the process, the acting.

She felt worthy again,
she felt wanted and needed.

And she certainly wasn't camera-shy.

(Laughter)

(Applause)

Mom laughed hysterically at this one.

(Laughter)

The idea for this image
came from an old German film I'd seen,

about a submarine, called "Das Boot."

As you can see, what I got instead
looked more like "E.T."

(Laughter)

So I put this image aside,
thinking it was a total failure,

because it didn't reach
my particular vision.

But Mom laughed so hard,

I eventually, for fun,
decided to post it online anyway.

It got an incredible amount of attention.

Now, with any Alzheimer's, dementia,

there's a certain amount
of frustration and sadness

for everyone involved.

This is Mom's silent scream.

Her words to me one day were,

"Why is my head so full of things to say,

but before they reach my mouth,
I forget what they are?"

"Why is my head so full of things to say,

but before they reach my mouth,
I forget what they are?"

(Applause)

Now, as full-time care partner
and full-time painter,

I had my frustrations too.

(Laughter)

But to balance off
all the difficulties, we played.

That was Mom's happy place.

And I needed her to be there, too.

(Laughter)

(Laughter)

(Laughter)

Now, Mom was also preoccupied with aging.

She would say,
"How did I get so old, so fast?"

(Audience sighs)

"So old."

"So fast."

I also got Mom to model
for my oil paintings.

This painting is called "The Dressmaker."

I remember, as a kid,

Mom sewing clothes for the whole family

on this massive, heavy sewing machine

that was bolted
to the floor in the basement.

Many nights, I would go downstairs
and bring my schoolwork with me.

I would sit behind her
in this overstuffed chair.

The low hum of the huge motor
and the repetitive stitching sounds

were comforting to me.

When Mom moved into my house,

I saved this machine and stored it
in my studio for safekeeping.

This painting brought me
back to my childhood.

The interesting part

was that it was now Mom,
sitting behind me,

watching me paint her

working on that very same
machine she sewed at

when I sat behind her, watching her sew,

50 years earlier.

I also gave Mom a project to do,
to keep her busy and thinking.

I provided her with a small camera

and asked her to take at least
10 pictures a day of anything she wanted.

These are Mom's photographs.

She's never held a camera
in her life before this.

She was 93.

We would sit down together
and talk about our work.

I would try to explain

(Laughter)

how and why I did them,

the meaning, the feeling,
why they were relevant.

Mom, on the other hand,
would just bluntly say,

"sì,"

"no,"

"bella" or "bruta."

(Laughter)

I watched her facial expressions.

She always had the last say,
with words or without.

This voyage of discovery
hasn't ended with Mom.

She is now in an assisted
living residence,

a 10-minute walk away from my home.

I visit her every other day.

Her dementia had gotten to the point

where it was unsafe for her
to be in my house.

It has a lot of stairs.

She doesn't know my name anymore.

(Voice breaking)
But you know what? That's OK.

She still recognizes my face

and always has a big smile
when she sees me.

(Applause)

(Applause ends)

I don't take pictures of her anymore.

That wouldn't be fair
or ethical on my part.

And she wouldn't understand
the reasons for doing them.

My father,

my brother,

(Voice breaking) my nephew,

my partner and my best friend,

all passed away suddenly.

And I didn't have the chance

to tell them how much
I appreciated and loved them.

With Mom, I need to be there

and make it a very long goodbye.

(Applause)

(Applause ends)

For me, it's about being present
and really listening.

Dependents want to feel
a part of something, anything.

It doesn't need to be something
exceptionally profound that's shared --

it could be as simple as walks together.

Give them a voice

of interaction, participation,

and a feeling of belonging.

Make the time meaningful.

Life, it's about wanting to live

and not waiting to die.

(Applause)

(Applause ends)

Can I get a wave and a smile
from everyone, please?

(Laughter)

This is for you, Mom.

(Camera clicks)

(Applause)