A visual diary: On dementia and caregiving | Tony Luciani | TEDxCambridge

A visual diary: On dementia and caregiving | Tony Luciani | TEDxCambridge


Translator: Tanya Cushman
Reviewer: Peter van de Ven 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 a 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. After a while, I hear, “I need to do use of the washroom.” “Five minutes, Mom. I need to do this.” Fifteen minutes later, and I hear again, “I need to do use of 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 the very large sewing department. And because it was full
of immigrant workers, Mom taught herself words
from translation books. She’d then practice 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. I do remember and I have to mention that her attempt at Chinese
with her Italian accent was very, very funny. (Laughter) 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 had 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. Even someone from Australia
reached out to me, wanting permission to use this image
as their company logo. (Laughter) (Applause) So I asked what their business was. They wrote back, saying that they, quote, “sold weird and unusually odd sex toys.” (Laughter) I thought about it for a weird
and unusually odd split second and decided no. (Laughter) 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) Now, Mom was also preoccupied with aging; she would say, “How did I get so old so fast?” So old. So fast. I, on the other hand, was busy
doing my daily domestic chores. It was really, really hard work. (Laughter) (Laughter) (Laughter) (Laughter) (Laughter) I call this one “Agitated.” (Laughter) Now, 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
how and why I did them, the meaning, the feeling, why they were relevant. Mom, on the other hand,
would just bluntly say, “Si.” “No.” “Bella.” “Brutta.” (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 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, but, you know what, that’s okay. She still recognizes my face and always has a big smile
when she sees me. (Applause) I don’t take pictures of her anymore. That wouldn’t be fair
or ethical on my part. She wouldn’t understand
the reasons for doing them. We recently had a major
mother-and-son exhibition at a Toronto public art gallery. There were 150 works on display. How awesome is that? (Applause) We also donated 100
of the photographs in this exhibition to our local Alzheimer’s Society. (Applause) My father, my brother, 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) 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 the feeling of belonging. Make the time meaningful. Life – it’s about wanting to live
and not waiting to die. (Applause) Can I get a wave and a smile
for everyone, please? This is for you, Mom. (Applause)

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  1. Thankyou for sharing this very personal time shared with you and your mother. I can empathy with you because I had a similar experience coming through a challenging time when my mother had a similar diagnosis. It brought with it some amusing times but also sensitive moments of what next?
    During the last 9 months of my mother’s full time care a poem read outside sisters office ….’Do not be alarmed at what you see this is our world and we are ‘Happy’ The care was outstanding and a comfort when leaving each time on our visits knowing she was in safe hands, a safe place to be!
    Being a professional nurse myself I appreciate all that you went through Tony and for a creative story through the eyes of those precious times with your lovely mum. ?

  2. The photographs are amazing and have brought tears to my eyes… well deserving of that standing ovation.

  3. Thank you so much for this really good video He has really good perspective to show us with photo how is the life of person who has alzhmier it's incredible

  4. When will you all start taking it seriously?
    A zero hrs contract that hardly pays the bills. £12000per yr. Spend half the day travling without pay.
    I'm tired, should I get a new job? Should I let them down?
    The staff turnover is discussing.

  5. OMG Tony this was the best. I am having trouble typing this through the tears in my eyes. Bravo you have outdone yourself…Thank you for this…

  6. Toni, as I watched your magnificently transparent telling of part of your story, my eyes welled with tears and I had a lump in my throat. Just recently, my Mama was diagnosed with some form of Dementia. Thank you for confirming what I felt in my heart…
    And you are an amazing son, which she knows very well. ?

  7. I lost my Dad to Alzheimer's 3-1/2 weeks ago. I felt your heart through your talk, photographs, and paintings. What a beautiful way to honor your Mom and to give the audience a glimpse into who she was before the dementia tried to erase who she was and who you know she is. Thank you for sharing.

  8. The guy seems really good at his crafts.
    I feel for him, for his pain.

    He's suffered too much, too close together.

  9. A TEDx Talk that is beautiful beyond words. The photographs are so sensitive and the interactive affection between mother and son is very moving to see. It was emotional to watch and I felt a connection having been a caregiver to my own mom there was deep empathy for how difficult this must have been for Tony to share his personal space in public. But it's very needed to create awareness and he has presented it in such a deeply heartfelt way

  10. What an AHA moment indeed! This is truly a story of adventure and incredible love between an elderly mother and a creative and loving son. Both so very blessed to have each other.
    Hearing the candid thoughts and conversations, seeing the photos and paintings brought on so many feelings. This story is an inspiration and gift to all of us.
    A well deserved standing ovation!

  11. ? I love this. Making "THE CONNECTION" with a loved one who has dementia is very precious. I'm very fortunate to say I have done so with my grandma. ? Blessing to you and your mom. ?

  12. What a heartfelt and moving presentation of life. It truly was a reminder of so many forgotten life experiences. It was inspiring and so close to home, as my grandmother Maria Domenica Luciani also had a husband who died of phenomena leaving my grandmother to care for two young daughters in Castropignano. Her life hardships were evident in her face until she passed away 80 years later in Canada. You are truly and heartfelt and talented soul. Thank you for sharing part of your journey. Lina Van Esch

  13. THANK YOU, I am a live-in caregiver….The texture of your talk is just how I feel about your paintings and photographs… This is Beautiful, as are you and Momma.

  14. Amazing story & amazing people – such a strong emotional bond between them that will never die. Well done Tony & Mamma.

  15. Thank you for sharing. If you read this Tony. I'm 33, an artist at heart, and caring for my 70 year old mother with late stage dementia. My heart is warmed by your story. My mom was an artist at heart, too. The dementia that has afflicted her affected her eyesight and well its a whole extra bag of worms. Maybe what I want to to say is that I will take those moments I have very dear. I get these ideas of works of art and I am very humbled that you were able to portray whats been going on in my mind and heart.

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