Alzheimer’s disease: A subject close to home
Who, in the world of photography in Reuters, doesn’t know someone suffering from Alzheimer’s disease? Who doesn’t know and feel the suffering of their closest relatives when they are facing this disease? It must be even more difficult for the eldest, who are used to seeing people suffering from cancer or strokes but do not understand this disease, and start to panic.
Recently, I made contact with the Portuguese Alzheimer Association to talk with them about the disease. A week after I contacted them I met with two women, Brazilian therapist Claudia Zolini and Portuguese therapist Margarida Matos. I started talking to them about my personal experience with this disease, telling them how my godmother, who died in March, suffered from Alzheimer’s. I told them how, when the first signs of her disease showed up years ago, I would laugh at her little mistakes – until the moment came when I had to face the real evidence of this illness, that I could not fully understand. I told them that suddenly I had to become a psychologist for my mother, who by then was in a panic, fearing that she would also suffer from Alzheimer’s. She could understand many different types of diseases but not this one. She suffered in a way that only she can tell.
After recounting my story, the two aid workers told me they would help in any way they could. My godmother had an income, and with the assistance of the estate she could afford to be in a facility where she was helped. But I wanted to know what happens to low income families, who cannot afford to send their relatives to nursing homes. I felt that would create a bigger impact. The aid workers asked me: What do you mean bigger impact? I answered, the bigger the impact for me and the bigger it will be for society. They kept asking questions, in particular, if the photos would be used in the right way by the newspapers. I stayed silent after this question. I then answered, if they don’t use it wisely, they are not human.
A couple of days later the association called to introduce me to two families, but for me to go without the camera. I met Amilcar Dos Santos and his wife Isidora, an Alzheimer’s patient. They have no children and are both 82 years old, the same age as my mother. Amilcar humbly presented me to his wife – who was born near the border with Spain – and told her I was Spanish. She said: “Hola, como estas?” (Hello, How are you?), in my native language. I was amazed despite knowing that Alzheimer’s damages short term memory but retains long term memories.
Amilcar showed me his house, which resembles a shrine – dark and filled with pictures of the couple and their family. He is now in charge of the household chores, something he had never done in his life. Now he has to iron, wash, cook – everything changed at such a late stage of his life.
Isidora was taken out of bed by an aid worker and placed in a moving bed provided by the Portuguese Alzheimer Association. I started taking pictures while Amilcar did the housework. I noticed the lack of light. The space was small, but Amilcar kept doing his work. He fed his wife, and while trying to get pictures of that moment, I asked him to do it slowly. He replied: “If I do it slowly, she’ll close her mouth and stop eating”. “I apologize, Mr. Amilcar”, I said.
When I got home and looked at the pictures, I noticed there was something missing, but I didn’t know what it was. The next day i went back to their house and during lunch Amilcar told me about his life. How he was guarding sheep at the age of 13, then moved to Lisbon and met Isidora. For 45 minutes he talked, clearly showing he was still in love with his wife. We then moved to Isidora’s room and Amilcar said, “I’ll open the curtains, the light is dim in here”. The light that filled the room was extraordinary, and I started taking all the pictures again. Everything was flowing with incredible speed.
Amilcar gave me, and not the Portuguese Alzheimer Association, permission to photograph his wife. For me, that was very special. The pain for the relatives of an Alzheimer’s patient is very strong. They need support. I lived that before and now I did it again, through the lens of a camera. After I finished my work, three people gathered in Amilcar’s kitchen, talking about their relationship with Alzheimer’s. Me with my late godmother, Amilcar with his wife and the aid worker with her father.
I believe that mixing our feelings with our professional work is something that works well, whether it is a picture for a news story or not. In the end, the final result is something that can be seen by everyone and if the editors of a magazine or newspapers stop to look at our pictures, either to publish them or to keep them in their archives, then our work was well done.