After Ed Ackell developed Alzheimer’s, his wife Judith Fox started taking pictures of him. ‘You can show my soul,’ he told her. The results are stark, yet touching

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. He occasionally had difficulty tracking conversations. 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 do remember thinking though, before Ed and I got married, was this: if he did have Alzheimer’s, I loved him enough to marry him anyway, and also that I couldn’t imagine him being out there on his own without me to support him. I put those thoughts of Alzheimer’s aside.

I met Ed in 1980. I was running a company supplying temporary staff in Richmond, Virginia, and Ed, a doctor and academic, moved there to be president of Virginia Commonwealth University. We were both very active in the community, and in a place like Richmond you get to know each other – my husband, Jerry, and I became friends with Ed and his wife. 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. Ed had retired from the university, and I had sold my business. We designed and built a house together, we travelled, we made new friends. We lived right next to a golf course, so Ed was in heaven.

It is hard to say when the signs of Alzheimer’s started to show. Ed had always had a very selective memory, so that wasn’t something that stood out, but it did trouble me. I had read about a genetic marker for Alzheimer’s and, during our annual check-ups, without saying anything to Ed, I asked our doctor to test his blood for it. The results showed that Ed had two of the markers. We saw another neurologist who said this meant he had a statistically higher risk of developing the disease, but that it was probable that it had already begun to develop.

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. One of the problems with diseases of the brain is that it can make people think you are “crazy” – and he didn’t want that. I became used to covering for his lapses.

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. For some people, a camera gives them almost a detachment from the thing they are looking at, but for me it was the opposite – through the lens, I felt I was seeing Ed clearly; and it felt like an act of love. It was also 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. He also has severe visual agnosia, which means his brain can’t process what is in front of his eyes, so now he can’t even see the pictures.

As the project developed, and I talked about turning it in to a book, it was suggested that I shouldn’t market it as a project about Alzheimer’s, because people didn’t want to know. But I wanted to help bring the disease out of the closet because I hate the stigma and shame surrounding it.

Ed’s decline was gradual and for the first couple of years he was relatively stable – we even kept going back to the doctor wondering if it was something else. 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. I know he missed his old life of meeting friends for a beer or golf, and talking about politics and sport, but he chose not to dwell on it. I coped by focusing on what we had, rather than what we had lost. 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, which I wouldn’t recommend – I felt I was too independent and self-sufficient to ask for help, but in the last couple of years I was helped by a carer. 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. I give him reassurance and he still gives me great joy. I still feel very much that we are in love. 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.

I Still Do: Loving and Living with Alzheimer’s 30 March to 3 April at the Cork Street Gallery, London W1. Judith Fox’s book, I Still Do: Loving and Living with Alzheimer’s, is published by Powerhouse at £22.99. To order a copy for £20.99 including free UK mainland p&p, go to or call 0330 333 68467 © Guardian News & Media Limited 2010 | Use of this content is subject to our Terms & Conditions | More Feeds