A mother and son’s photographic journey through dementia | Tony Luciani

A mother and son’s photographic journey through dementia | Tony Luciani

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)

100 thoughts on “A mother and son’s photographic journey through dementia | Tony Luciani

  1. You can really hear and feel the audience connecting with the pictures considering her question on why she got so old so fast

  2. Death is the logical consequence of life. We must therefore enjoy every little moment of life like it's the last.

  3. Thank you. This came at the perfect time for me. Caring for my mother with dementia leaves me questioning life and feeling defeated and full of angst. This helped so very much.

  4. I cared for my grandmother who had dementia, it was the hardest thing I've ever done and probably will ever do but I'm glad that I got to spend that time with her, she passed just over a year ago.

  5. Can’t believe how touching this is , he is blessed to have found a comfort in her journey …. and also please put some french subtile it would be nice thanks !

  6. This was a great story I'm so glad I got to watch it and it's such a good thing to know that they're good hearted people still in this world trust me I love in Baltimore MD and it's hard to come by anymore but this was great

  7. Drama, sadness, you can find it anywhere. Just fu** look on the bright side. The whole life already doesn't have meaning. So you coming and crying about your moms aging is stupid. Guess what? All moms are going to die. Why people act as if they didn't know this was going to happen? If your mom was dead before her brain was as fu** as now, you and she would have felt better. But now we call this "the future and medicine revolution ". Because now people gain 5 more years of life. But their children and the government spend on each one of them more than 100k$ during these 5 years, and most of them they lose almost everything that makes of them humans, they don't recognize their children and who knows what else… THAT's why death exists. Like it or not. *idk why Im raging lol*

  8. I cried watching this. Dementia is so cruel. This was sad and beautiful and i hope it will teach me and anyone who watches it to appreciate the now

  9. Be with your loved ones when they around you ,tell them you love them ..hug them often ..smile with them ..he got the time to say long goodbye..but not everyone get to do that.

  10. As the Chinese saying goes, tree prefers calm while the wind does not subside; Sons choose to filial while parents died.

  11. She burnt herself out in memorizing languages in the quest of being important in the need of being worthy.
    Resultingly Her brain got defective (forgetful) . All those terrible toxic years.
    At least she could smile 😇

  12. I got to this TED unexpectedly and I just can appreciate this greatly touching, lovely and inspiring video…
    That just reminds and resembles me the simple purity of love and life, of saying everything without saying anything. Thank you for this beautiful shared experience.

  13. My mum, who had early onset Alzheimers, passed nearly 4 years ago. It doesn’t matter if they still know you. It only matters that you still KNOW them!

  14. I've never had a TED talk bring me to tears before😢, this was profoundly beautiful. We spend so much time giving our energy to the wrong things (the things that do not deserve our full attention to only find ourselves trying to catch up on moments that passed us by. This presentation really makes you reflect in so many ways.❤

  15. Dementia and aged need to feel wanted and needed. Why is my head so full of things to say, but before they come out I forget what they are! Turn every relationship into a very long heartfelt goodbye so that when death separates you, have no regrets. Life is about wanting live, not waiting to die. https://twitter.com/tedstalkin

  16. This is good example for people that run after life and mony, until they reach a certain age that they don't need either mony nor anything material they just need some one to be there with them someone that they love someone to spent the last moment of there life with

    Sorry for my english

  17. While I am watching this, I am missing my grandma. My grandma passed away 3 years ago, Sorry grandma i never ask you about your memories.. 😢

  18. Each year that you're getting older so is your parents – learn to appreciate and CONVEY your appreciation before it's too late…

  19. Such a beautiful, heartwarming and sad story. I hope that your goodbye is as long as possible. Thank you for being vulnerable and sharing the wonderful story with us!

  20. Thank you, everyone, for the kind words. I appreciate it. The photography with mom is over, but the series isn't. I will be continuing to support the Alzheimer's and dementia cause in another way. I'm doing a walk, a very long walk on the Camino Frances this year, starting in France and winding up at the Atlantic Ocean (the End of the World) in Spain. The total distance will be close to 1000 km, and I'll be doing it for the people who have Alzheimer's and dementia, their caregivers and families/friends. The 'purpose' is to bring more awareness and to raise some funds for the Alzheimer Society. If you're interested in donating, please follow this link to help out: alzgiving.ca/goto/Camino – Hop on my back and let's go for a walk. Thank you again, Tony

  21. Thanks for the video, got me right in the feels. My grandfather has had dementia for the last 6 year's and it's sad. I'm going to go see him tomorrow if the weather is good.

  22. This is by far one of the best “Ted’s” I have seen in a while. What great memories you and your family will have.
    My 86 yr old mother-in-law has lived with us for 20 years. She still drives, and still has good memory. However, I am finding her repeating, forgetting or misplacing things more and more. My oldest son who loves her to no end has called her a “ cool Grandma” since he was a little boy. Even though my other son loves her, it’s my oldest who has the greater relationship. He takes time out of his busy schedule to call her every Sunday to talk with her. And when he comes home for visits he spends hours just sitting and talking with her. Older people have such knowledge to pass on and my son has gained a lifetime of memoirs that he will always cherish.
    Thank you for sharing this beautiful story with us. Your mom is such a beautiful soul.

  23. Tony, my mother has come down by dementia, each day I see her blurring. Each day I lose her a little bit more and each day I feel the grip of grief tightening around my being. I mourn losing the beautiful,stylish, gorgeous, intelligent, talented woman who became the envy of women everywhere she went. She sang beautifully, painted outstandingly, stitching immaculately and sewing machines were her life. She had a presence, an authority, still remembers some of the beautiful Persian and Urdu poetry that she recited remarkably. She had a great sense of humour, witticism, sharpness of mind and then she had a stroke, osteoarthritis, ascites and dementia which keeps worsening. Now I have so many words that I want to say, describing how dark and lost I feel but before I can use them , I lose them, limp, insipid, they fail me each time I try.

  24. Very heart warming. I'll never have this relationship with my mother, but it's nice to see what a real mother is like.

  25. Dear Tony I was wondering if you have more talks and experiences that you might have shared online. I would love to listen to them.

  26. I always wanted to make you proud mom.. but i dont know why i am never being able to get out of these hard day… i promise the days are near when you will be happy for me ❤❤

  27. THE COLUMBINE SHOOTERS MOM GETS A CLIP. That loser should be jailed! No comments allowed so I'll leave a comment on every video! DO NOT CELEBRATE LOSER PARENTS THAT STOOD IN THE WAY OF HELP, when parents are responsible for their kids actions then we will see less death! SICKENING TO APPLAUD COLUMBINES SHOOTERS MOM SHAME,

  28. muchas gracias por compartir esto con nosotros, es inevitable sentir empatia con vos. so old , so fast. la vida es solo un momento

  29. Poignant. Meaningful. Reflective. Loving.
    Tony is so VERY talented. ( photographer, painter and presenter) He is his mother’s legacy of viewing the world with open eyes and an open heart. (Her photography illuminated her gift of observation, too. ) You have learned much from the losses in your lifetime ( so many & so painful ) but you have transformed this wisdom into action by mindfully nurturing the relationship with your mom. Continue your photography, painting and thoughtful observations on living life fully. Thank you for sharing parts of your life’s journey with us.

Leave a Reply

Your email address will not be published. Required fields are marked *