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.
アーティストのトニー・ルシアーニは、新しいカメラを試していたとき、91歳の母親であるエリアが彼の写真の背景に忍び込んだ。
そうして生じた思いつきの画像は、何年にもわたるコラボレーションを引き起こし、ルシアーニが母親の認知症と共に生活する中で彼女の生活と精神を記録してきました。この感動的なトークで、彼は彼らのお気に入りのショットの裏にあるストーリーを共有し、高齢の両親の介護の喜びと悲しみを捉えています。
| タイトル | A mother and son’s photographic journey through dementia 認知症を乗り越えた母と息子の写真の旅 |
| スピーカー | トニー・ルシアーニ |
| アップロード | 2019/02/05 |
認知症を乗り越えた母と息子の写真の旅（A mother and son’s photographic journey through dementia）の要約
母との同居開始
私の91歳の母、エリアが一緒に住むようになったとき、彼女のために何かをしているつもりでした。しかし、実際には母が記憶喪失と老いに苦しんでいる姿を見て、逆に助けられていることに気づきました。母が階段をゆっくりと上る姿を見ていると、かつての力強い母ではなく、弱々しい老婦人に見え、胸が痛みました。
新しいカメラとの出会い
絵から少し離れて新しいカメラに興味を持ち、家のバスルームのドア前に三脚を設置して撮影を始めました。その間、母がトイレに行きたいと言ったとき、少し待たせてしまいましたが、これが母との新たなつながりのきっかけとなりました。
つながりの瞬間
母はイタリアの小さな村で生まれ、若い頃に家族を支えるために働いていました。トロントに移り住み、縫製工場で働き始め、多言語を学びながら成功を収めました。こうした母の過去を知り、共感とつながりを深めました。
新しいプロジェクト
バスルームでの「aha！」の瞬間の後、母をモデルにして写真の練習を始めました。この過程で母は自身の幼少期や現在の気持ちを語り、私はそれを聞きながらスケッチを描きました。母はこのプロセスを楽しみ、自分が再び価値ある存在と感じることができました。
アルツハイマーと認知症
母はアルツハイマーや認知症に苦しんでおり、思い出せないことにフラストレーションを感じていました。私はフルタイムの介護者であり画家でもあるため、時折フラストレーションを抱えていましたが、母と一緒に遊ぶことで困難を乗り越えました。
絵画と母
母を油絵のモデルに依頼し、「ドレスメーカー」という絵を描きました。子供時代、母が家族全員の服を縫っていたことを思い出し、そのミシンの音が心地よかったことが蘇りました。この絵を描くことで、母との時間の大切さを改めて感じました。
新たなプロジェクトと発見
母にカメラを渡し、毎日10枚の写真を撮るようお願いしました。私たちは一緒に座って作品について話し合い、母の写真を通じて新たな発見をしました。
母との時間の価値
現在、母は介護施設に住んでおり、毎日訪れています。母の認知症は進行し、私の名前を覚えていませんが、顔を見て笑顔を見せてくれます。母との時間は長い別れの一環であり、その瞬間を大切にしています。今ここにいること、本当に聞くことが重要であり、人々は何かの一部であると感じることが大切です。
文字起こし
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.
After a while, I hear, “I need to use the washroom.”
“Five minutes, Mom. I need to do this.”
Fifteen minutes later, and I hear, again, “I need to use the washroom.”
“Five more minutes.”
Then this happened.
And this.
And then, this.
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 a 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 at 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.
Mom laughed hysterically at this one.
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.”
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?”
Now, as a full-time care partner and full-time painter, I had my frustrations too. But to balance off all the difficulties, we played. That was Mom’s happy place. And I needed her to be there, too.
Now, Mom was also preoccupied with aging. She would say, “How did I get 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 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” or “bruta.” 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. But you know what? That’s OK. She still recognizes my face and always has a big smile when she sees me.
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, 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.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.Can I get a wave and a smile from everyone, please?
This is for you, Mom.