Return to Video

A mother and son’s photographic journey through dementia

  • 0:01 - 0:05
    When my 91-year-old mother, Elia,
    moved in with me,
  • 0:05 - 0:08
    I thought I was doing her a service.
  • 0:08 - 0:11
    In fact, it was the other way around.
  • 0:12 - 0:16
    You see, Mom was having issues
    with memory loss and accepting her age.
  • 0:17 - 0:19
    She looked defeated.
  • 0:20 - 0:23
    I tried to make her
    as comfortable as possible,
  • 0:23 - 0:26
    but when I was at my easel, painting,
  • 0:26 - 0:29
    I would peek over
    and see her just "there."
  • 0:30 - 0:33
    She'd be staring at nothing in particular.
  • 0:34 - 0:37
    I'd watch her slowly climb the stairs,
  • 0:37 - 0:40
    and she wasn't the mom I grew up with.
  • 0:40 - 0:43
    I saw, instead, a frail,
  • 0:43 - 0:47
    tiny, old woman.
  • 0:49 - 0:53
    A few weeks went by,
    and I needed a break from my painting.
  • 0:53 - 0:56
    I wanted to play with the new camera
    I had just bought.
  • 0:56 - 0:59
    I was excited --
    it had all sorts of dials,
  • 0:59 - 1:01
    buttons and settings I wanted to learn,
  • 1:01 - 1:06
    so I set up my tripod
    facing this large mirror,
  • 1:06 - 1:11
    blocking the doorway
    to the only bathroom in the house.
  • 1:11 - 1:13
    (Laughter)
  • 1:13 - 1:16
    After a while, I hear,
  • 1:17 - 1:20
    (Imitating Italian accent)
    "I need to use the washroom."
  • 1:20 - 1:21
    (Laughter)
  • 1:21 - 1:24
    "Five minutes, Mom. I need to do this."
  • 1:24 - 1:29
    15 minutes later, and I hear, again,
  • 1:30 - 1:33
    "I need to use the washroom."
  • 1:33 - 1:35
    "Five more minutes."
  • 1:36 - 1:37
    Then this happened.
  • 1:41 - 1:45
    (Laughter)
  • 1:45 - 1:52
    (Applause)
  • 1:53 - 1:55
    And this.
  • 1:57 - 2:03
    (Laughter)
  • 2:03 - 2:05
    And then, this.
  • 2:07 - 2:14
    (Laughter)
  • 2:14 - 2:17
    I had my aha moment.
  • 2:17 - 2:18
    We connected.
  • 2:19 - 2:22
    We had something tangible
    we could do together.
  • 2:23 - 2:25
    (Laughter)
  • 2:25 - 2:29
    My mom was born in a small
    mountain village in central Italy,
  • 2:29 - 2:32
    where her parents had land and sheep.
  • 2:33 - 2:36
    At a young age,
    her father died of pneumonia,
  • 2:36 - 2:40
    leaving his wife and two daughters alone
    with all the heavy chores.
  • 2:41 - 2:44
    They found that they couldn't cope.
  • 2:44 - 2:47
    So a very hard decision was made.
  • 2:47 - 2:51
    Mom, the oldest, at 13,
  • 2:51 - 2:56
    was married off to a complete
    stranger twice her age.
  • 2:57 - 3:01
    She went from being just a kid
    and was pushed into adulthood.
  • 3:03 - 3:07
    Mom had her first child
    when she was only 16.
  • 3:09 - 3:12
    Years later, and now living in Toronto,
  • 3:12 - 3:14
    Mom got work in a clothing factory
  • 3:14 - 3:19
    and soon became manager
    of a very large sewing department.
  • 3:20 - 3:22
    And because it was full
    of immigrant workers,
  • 3:22 - 3:26
    Mom taught herself words
    from translation books.
  • 3:26 - 3:31
    She then practiced them in French,
    Greek, Spanish, Portuguese, Danish,
  • 3:31 - 3:35
    Polish, Russian, Romanian, Hungarian,
    all around the house.
  • 3:36 - 3:41
    I was in awe of her focus
    and determination to succeed
  • 3:41 - 3:44
    at whatever she'd loved to do.
  • 3:45 - 3:48
    After that bathroom aha moment,
  • 3:48 - 3:52
    I practiced my newfound camera skills
    with Mom as portrait model.
  • 3:53 - 3:57
    Through all of this,
    she talked, and I listened.
  • 3:57 - 4:01
    She'd tell me about her early childhood
    and how she was feeling now.
  • 4:02 - 4:04
    We had each other's attention.
  • 4:05 - 4:07
    Mom was losing her short-term memory,
  • 4:07 - 4:10
    but was better recalling
    her younger years.
  • 4:11 - 4:14
    I'd ask, and she would tell me stories.
  • 4:14 - 4:17
    I listened and I was her audience.
  • 4:18 - 4:19
    I got ideas.
  • 4:19 - 4:22
    I wrote them down,
    and I sketched them out.
  • 4:23 - 4:27
    I showed her what to do
    by acting out the scenarios myself.
  • 4:28 - 4:30
    We would then stage them.
  • 4:30 - 4:35
    So, she posed and I learned
    more about photography.
  • 4:37 - 4:41
    Mom loved the process, the acting.
  • 4:41 - 4:45
    She felt worthy again,
    she felt wanted and needed.
  • 4:46 - 4:49
    And she certainly wasn't camera-shy.
  • 4:49 - 4:53
    (Laughter)
  • 4:53 - 5:00
    (Applause)
  • 5:01 - 5:04
    Mom laughed hysterically at this one.
  • 5:04 - 5:07
    (Laughter)
  • 5:07 - 5:12
    The idea for this image
    came from and old German film I'd seen,
  • 5:12 - 5:14
    about a submarine, called "Das Boot."
  • 5:14 - 5:18
    As you can see, what I got instead
    looked more like "E.T."
  • 5:18 - 5:20
    (Laughter)
  • 5:20 - 5:24
    So I put this image aside,
    thinking it was a total failure,
  • 5:24 - 5:27
    because it didn't reach
    my particular vision.
  • 5:27 - 5:29
    But Mom laughed so hard,
  • 5:29 - 5:34
    I eventually, for fun,
    decided to post it online anyway.
  • 5:35 - 5:39
    It got an incredible amount of attention.
  • 5:40 - 5:44
    Now, with any Alzheimer's dementia,
  • 5:44 - 5:48
    there's a certain amount
    of frustration and sadness
  • 5:48 - 5:49
    for everyone involved.
  • 5:50 - 5:53
    This is Mom's silent scream.
  • 5:55 - 5:57
    Her words to me one day were,
  • 5:57 - 6:01
    "Why is my head so full of things to say,
  • 6:01 - 6:06
    but before they reach my mouth,
    I forget what they are?"
  • 6:08 - 6:14
    "Why is my head so full of things to say,
  • 6:16 - 6:20
    but before they reach my mouth,
    I forget what they are?"
  • 6:22 - 6:29
    (Applause)
  • 6:33 - 6:38
    Now, as full-time care partner
    and full-time painter,
  • 6:38 - 6:40
    I had my frustrations too.
  • 6:41 - 6:43
    (Laughter)
  • 6:44 - 6:47
    But to balance off
    all the difficulties, we played.
  • 6:47 - 6:49
    That was Mom's happy place.
  • 6:49 - 6:51
    And I needed her to be there, too.
  • 6:54 - 6:56
    (Laughter)
  • 6:58 - 7:03
    (Laughter)
  • 7:03 - 7:07
    (Laughter)
  • 7:07 - 7:10
    Now, Mom was also preoccupied with aging.
  • 7:10 - 7:15
    She would say,
    "How did I get so old, so fast?"
  • 7:18 - 7:20
    (Audience sighs)
  • 7:30 - 7:31
    "So old."
  • 7:37 - 7:38
    "So fast."
  • 7:41 - 7:45
    I also got Mom to model
    for my oil paintings.
  • 7:46 - 7:49
    This painting is called "The Dressmaker."
  • 7:50 - 7:53
    I remember, as a kid,
  • 7:53 - 7:56
    Mom sewing clothes for the whole family
  • 7:56 - 7:59
    on this massive, heavy sewing machine
  • 7:59 - 8:02
    that was bolted
    to the floor in the basement.
  • 8:03 - 8:08
    Many nights, I would go downstairs
    and bring my schoolwork with me.
  • 8:09 - 8:13
    I would sit behind her
    in this overstuffed chair.
  • 8:14 - 8:19
    The low hum of the huge motor
    and the repetitive stitching sounds
  • 8:19 - 8:20
    were comforting to me.
  • 8:22 - 8:23
    When Mom moved into my house,
  • 8:23 - 8:27
    I saved this machine and stored it
    in my studio for safekeeping.
  • 8:28 - 8:31
    This painting brought me
    back to my childhood.
  • 8:32 - 8:34
    The interesting part
  • 8:34 - 8:38
    was that it was now Mom,
    sitting behind me,
  • 8:39 - 8:41
    watching me paint her
  • 8:41 - 8:44
    working on that very same
    machine she sewed at
  • 8:45 - 8:50
    when I sat behind her, watching her sew,
  • 8:50 - 8:52
    50 years earlier.
  • 8:55 - 9:00
    I also gave Mom a project to do,
    to keep her busy and thinking.
  • 9:00 - 9:02
    I provided her with a small camera
  • 9:02 - 9:06
    and asked her to take at least
    10 pictures a day of anything she wanted.
  • 9:07 - 9:08
    These are Mom's photographs.
  • 9:09 - 9:13
    She's never held a camera
    in her life, before this.
  • 9:14 - 9:15
    She was 93.
  • 9:41 - 9:44
    We would sit down together
    and talk about our work.
  • 9:45 - 9:47
    I would try to explain
  • 9:47 - 9:48
    (Laughter)
  • 9:48 - 9:51
    how and why I did them,
  • 9:51 - 9:54
    the meaning, the feeling,
    why they were relevant.
  • 9:55 - 9:59
    Mom, on the other hand,
    would just bluntly say,
  • 9:59 - 10:00
    "sì,"
  • 10:00 - 10:02
    "no,"
  • 10:02 - 10:04
    "bella" or "bruta."
  • 10:04 - 10:05
    (Laughter)
  • 10:05 - 10:08
    I watched her facial expressions.
  • 10:10 - 10:15
    She always had the last say,
    with words or without.
  • 10:17 - 10:20
    This voyage of discovery
    hasn't ended with Mom.
  • 10:22 - 10:25
    She is now in an assisted
    living residence,
  • 10:25 - 10:28
    a 10-minute walk away from my home.
  • 10:29 - 10:31
    I visit her every other day.
  • 10:34 - 10:35
    Her dementia had gotten to the point
  • 10:35 - 10:38
    where it was unsafe for her
    to be in my house.
  • 10:39 - 10:40
    It has a lot of stairs.
  • 10:43 - 10:45
    She doesn't know my name anymore.
  • 10:47 - 10:49
    (Voice breaking)
    But you know what? That's OK.
  • 10:51 - 10:53
    She still recognizes my face
  • 10:53 - 10:57
    and always has a big smile
    when she sees me.
  • 10:59 - 11:06
    (Applause)
  • 11:11 - 11:12
    (Applause ends)
  • 11:13 - 11:16
    I don't take pictures of her anymore.
  • 11:16 - 11:19
    That wouldn't be fair
    or ethical on my part.
  • 11:20 - 11:23
    And she wouldn't understand
    the reasons for doing them.
  • 11:24 - 11:26
    My father,
  • 11:26 - 11:28
    my brother,
  • 11:28 - 11:30
    (Voice breaking) my nephew,
  • 11:35 - 11:37
    my partner and my best friend,
  • 11:37 - 11:39
    all passed away suddenly.
  • 11:40 - 11:42
    And I didn't have the chance
  • 11:42 - 11:45
    to tell them how much
    I appreciated and loved them.
  • 11:47 - 11:51
    With Mom, I need to be there
  • 11:51 - 11:54
    and make it a very long goodbye.
  • 11:57 - 12:04
    (Applause)
  • 12:09 - 12:10
    (Applause ends)
  • 12:11 - 12:15
    For me, it's about being present
    and really listening.
  • 12:15 - 12:19
    Dependents want to feel
    a part of something, anything.
  • 12:19 - 12:22
    It doesn't need to be something
    exceptionally profound that's shared --
  • 12:23 - 12:25
    it could be as simple as walks together.
  • 12:27 - 12:29
    Give them a voice
  • 12:29 - 12:33
    of interaction, participation,
  • 12:33 - 12:35
    and a feeling of belonging.
  • 12:36 - 12:39
    Make the time meaningful.
  • 12:41 - 12:44
    Life, it's about wanting to live,
  • 12:44 - 12:47
    and not waiting to die.
  • 12:50 - 12:57
    (Applause)
  • 12:59 - 13:00
    (Applause ends)
  • 13:03 - 13:07
    Can I get a wave and a smile
    from everyone, please?
  • 13:07 - 13:08
    (Laughter)
  • 13:08 - 13:10
    This is for you, Mom.
  • 13:12 - 13:13
    (Camera clicks)
  • 13:14 - 13:19
    (Applause)
Title:
A mother and son’s photographic journey through dementia
Speaker:
Tony Luciani
Description:

more » « less
Video Language:
English
Team:
closed TED
Project:
TEDTalks
Duration:
13:32

English subtitles

Revisions Compare revisions