The man I’m in love with
After Ed Ackell developed Alzheimer’s, his wife Judith Fox started taking pictures of him. The results are stark, yet touching.Updated: Apr 03, 2010, 16:45 IST
Just before we got married, it occurred to me that my husband, Ed Ackell, might have Alzheimer’s. There were signs that something wasn’t right. A few years before, when I was married to my late husband, and we were friends with Ed and his then wife, I remember there was one time when my late husband said to me: “I think Ed may be having memory problems.”
What I remember thinking, before Ed and I got married, was this: if he did have Alzheimer’s, I loved him enough to marry him anyway.
I met Ed in 1980. I was widowed in 1992, and about a year and a half later, Ed, who was divorced by then, and I started dating. It just felt very natural and easy because we knew each other so well, and lovely because we fell madly in love. I’m still madly in love with him.
I was 54 when we married, and Ed was 70, but very young for his years. The first few years of our marriage were really wonderful. It is hard to say when the signs of Alzheimer’s started to show.
I could tell from his signals that Ed didn’t want to talk about it, and he didn’t want me to discuss it with our friends. He didn’t want to feel helpless or to be treated differently.
I have always been a photographer, but had never photographed my husband beyond a few travel snapshots. In 2001, I decided to start taking pictures of him. It was a way of remembering him, and having an activity that we could share.
About a year after I started, there was a particular photograph that, when I printed it, stunned me because I saw such pain in Ed’s eyes. If he had felt it was too private, I would have stopped but when we talked about it, he said he wanted to continue the photography, including some nude shots. “You can show my soul,” he said, “just don’t show my penis.”
I only stopped photographing him last year, when I felt he had declined so much that I would be compromising his dignity.
Ed’s decline was gradual. But eventually the disease took its toll on his brain and body. It took my independent husband — a brilliant man who had been a university president, surgeon, pilot and athlete — and made him confused, anxious and dependent on me. He is still, relatively speaking, articulate. He has a wonderful sense of humour. He is still continent. He still knows who I am in a way, and we still have a very strong love.
I cared for Ed on my own for eight years without a single day apart from him. Last summer he moved to a place where he has full-time care. It was a heartbreaking decision because my world has expanded, while his just continues to narrow, but I see him all the time. I wanted him to stay at home, but to Ed, ‘home’ didn’t mean anything any more.
To him, ‘home’ was a place, as he once said, “where I was when I was well.” He knows his world is disappearing and the times when he can talk about how lost he feels are particularly painful.
Our conversations are basic. We hold hands. When I married Ed, he was a fit, vibrant, sexy man, with a brilliant mind. Now, when I see him, part of me sees him like he is — stooped, confused, like an old man, with a disease that has taken his spirit and his memories — but most of me still sees the man I fell in love with.