TERRY GROSS, host:
Just three years after photographer Judith Fox married her second husband, he was diagnosed with Alzheimer's disease. That was in 1998. As she felt the disease slowly taking away her husband, she took pictures of him through his transformation. Those pictures are published in her new book "I Still Do: Loving and Living with Alzheimer's." Fox had been a business executive before giving that up to become a photographer. Her work is in the collections of the Los Angeles County Museum of Art, the Museum of Photographic Arts in San Diego and the Harry Ransom Center in Austin.
Judith Fox, welcome to FRESH AIR. I'd like you to read the opening from your book. I mean, your book is largely photographs but there is some very personal text in it, so if you can read the opening for us that would be good.
Ms. JUDITH FOX (Photographer, Author, �I Still Do: Loving and Living with Alzheimer's"): Sure. I'd be happy to, Terry.
These are some of the things my husband used to do: fly a plane, perform surgery, consult worldwide, head a university and medical centers, hit four holes in one, and play on the same basketball team as Bob Cousy. These are some of the things my husband can't do anymore: find his way to and from an unfamiliar bathroom, work the coffeemaker, play tournament golf or remember something I told him two minutes ago. These are some of the things my husband can do: express his love and appreciation, explain a medical issue to a layperson in such a way that they understand it, remember his best friend from childhood who was killed at Normandy, answer some of my math questions, supply words I can't recall, shave and shower.
GROSS: Were you surprised that while he was forgetting how to use the coffeemaker and couldn't get from an unfamiliar bathroom back to where he started that he could still supply words that you didn't recall and solve math problems?
Ms. FOX: Ed is very brilliant and he has what's called large reserves. And it's interesting, because he was diagnosed eleven and a half years ago and he is at an advanced stage but his brain is still logical often. So Alzheimer's is a very confounding disease and it's always surprising.
GROSS: How did you start taking pictures of your husband after his diagnosis of Alzheimer's?
Ms. FOX: The original impetus for the project really didn't have anything to do, at least consciously, with Alzheimer's. Originally, I had given myself an artistic challenge. I had read a book called "The Model Wife" by Arthur Ollman, who was a photographer and also the founding director of the Museum of Photographic Arts in San Diego. And in this book he explored the lives of nine iconic male photographers and their wives, who were their models and their muses.
And I thought the book was wonderful but my immediate question was where is the model husband? Where is the male as muse? Where is an aging, maybe no longer quite so right, body? So I started photographing my older handsome husband, who was 76 at the time and three years into his Alzheimer's diagnosis. And photographing him was another way of loving him, of touching him, connecting with him.
But again, initially, it was - I was thinking about my husband as my model and my muse. And I went to Arthur Ollman and showed him some of the early work and he said to me you've got a book here. And when we discussed it further and I asked him about the Alzheimer's issue, he suggested that I not have any of that in my book, that the photographs stood as they were and that if I brought Alzheimer's into it I would confuse possible publishers and that it would be a difficult book to get published. And I thought about everything he said, and the more I thought about it the more I realized that in addition to my husband being my model and my muse, he was an Alzheimer's - is an Alzheimer's patient. And that that's an important part of the story.
GROSS: So, in your book, you have a lot of pictures of your husband's face.
Ms. FOX: Yes.
GROSS: Did his eyes start changing as he got deeper into Alzheimer's?
Ms. FOX: Yes and no. It depended on the day. The photographs in the book are not chronological. And one of the photographs that to me looks most like the old Ed was taken fairly recently. I see pain in a number of the photographs and I did go through the process of thinking about the candor and what I would be doing to our privacy as this project went on. And I said to him, after seeing a particularly revealing photograph, that some of the photographs were going to show his soul and was that okay with him. And he said to me, yes, it's okay to show my soul, just don't show my penis. So, that's been our agreement and it was a gift that he gave me using his humor, which is still very much intact. He gave me permission to be honest about what we're experiencing.
GROSS: It's a funny line, I have to say.
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Ms. FOX: It's a great line. It's typical of Ed.
GROSS: You say in the beginning of your book that even when he got the Alzheimer's, one of the things he could still do is shave. You have a picture of him right after he shaved and�
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GROSS: �he's kind of bleeding between his nose and his lip. There's little pockets of shaving cream on his cheek and his nose and his ear. It's a very sweet photograph in a way, but it also shows how even the things he can do, he can't do fully.
Ms. FOX: Right. And I think the quote that I have near that photograph is sometimes good enough is good enough. And that's hard for me because I tend to be a perfectionist. And there are many gifts that come to somebody who is caring for somebody with Alzheimer's and learning to be easier about those kinds of things is certainly one of them.
GROSS: Have you shown your pictures of your husband to him and initially what have his reactions been?
Ms. FOX: I showed Ed the photographs early on and - Ed is a very modest man. And so his only question was: why are you photographing me? He doesn't think he is particularly handsome and I think he is. He doesn't think he is necessarily a model for a book. And of course, I disagree with that. But over the years his brain has become more and more of an issue. He has what's called severe visual and spatial agnosia, which means that his brain does not interpret what's in front of his eyes.
So, he can't read. He can't see the photographs. He recognizes very little. So, when the book was actually published and I had an advance copy, I brought it to him and put it in his hands. And we talk about the book and we talk about the tour and he understands that, but it really pains me that we can't share that -this important part of our partnership and this moment in my life.
GROSS: So, he looks at those photos and he doesn't recognize that they are photos of him?
Ms. FOX: He doesn't recognize photos as photos. His vision - again, because of his brain, there is very little that he can actually see and interpret properly.
GROSS: One of the things I keep thinking about: You married your husband three years before he was diagnosed with Alzheimer's. May I ask how old each of you were when you were married?
Ms. FOX: Well, he is 16 years older than I. And I was 54 when we were married.
GROSS: So, he was 70.
Ms. FOX: Right.
GROSS: So, if I may just bring up a sensitive subject here, I think one of the concerns that some people have when they fall in love later in life and they want to get married is what are they taking on.
Ms. FOX: Right.
GROSS: Are they taking on a spouse or will they soon be a caregiver. In your case, the Alzheimer's was three years after, so just as you are getting to deeper know the person who you had married at the age of 54, he was slowly being erased by a disease.
Ms. FOX: That's all true and I had that conversation with myself along with a few others. My first husband, my late husband, died of cancer when he was 53. And he was only three years older than I. So, as I thought about becoming increasingly involved with a man who was considerably older than I, one of the things I said to myself is that life can be so random. I could die before he died even. You know, we just have no guarantees, period. And so, I sort of put that aside. But what I also put aside is the comment that I made to myself before we decided to marry and that was that Ed might have Alzheimer's. So, I decided to marry him even though, at that point at least, I knew that it was a possibility.
GROSS: What made you think that maybe he has Alzheimer's?
Ms. FOX: That is the most difficult question to answer because Alzheimer's is so incredibly slippery. And Ed and I had been friends for many years, and I knew that he had a selective memory. I don't know if it was something that my late husband said who was also a friend of Ed's. And he mentioned in passing once that he thought Ed might have a memory issue. I can't put my finger on something in particular. I just know that at one moment I had that thought, thought it through, decided that if he did have Alzheimer's, I loved him very much, and that nobody could care for him better than I. And then I went back into denial mode.
GROSS: My guest is Judith Fox. Her book, �I Still Do,� is a collection of the photos she took of her husband as he lost his memory to Alzheimer's. We'll talk more after a break. This is FRESH AIR.
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GROSS: If you're just joining us, my guest is Judith Fox and she has a new book of photographs of her husband who has Alzheimer's disease, and the book is called, �I Still Do: Loving and Living with Alzheimer's.� You write about the word sundowning, a word that's�
Ms. FOX: Yeah.
GROSS: �often used to describe the anxious and erratic early evening behavior that often comes along with Alzheimer's. And you say sundowning, how about howling at the moon, clawing at the walls? How about the twilight zone? What was sundowning like for him when he was living at home? And I should mention he is in a home now, not living at the home with you.
Ms. FOX: Correct. He's been in a facility for several months now. It was very difficult because he was tremendously anxious. And that was often the time when he would think about his mother. His parents, from everything that I know, had a very happy and good marriage. And yet he'd be upset about his father, to whom he was very close. So, that was when he had thoughts that pained him the most, and when he was often the most confused. Ed has also had hallucinations for the last several years. And that's been very difficult. And I'm not sure that there isn't a connection between the hallucinations and the fact that his brain doesn't process images, and therefore, is making up stories for him. But the hallucinations would often become more difficult, starting during that sundowner time. And that also is very disturbing for him and for me.
GROSS: So, when he was hallucinating, what would you do, just try to reassure him everything was going to be all right?
Ms. FOX: Right. I would use those words, you know, that he was safe and that it was okay. But I would also try and make the situation one that was more comfortable for him. For instance, when he started to see strangers in the room, men in the room, at first, I would tell him - and I hated lying to him and that was not the foundation of our relationship, but it became part of our relationship. So, I would tell him, because it would make him feel better, that the men in the room were actually part of a local patrol. And he wanted me to call the police, so these were the police, and that made him feel more comfortable for a while. One of the things that I think is most difficult for a person with Alzheimer's is their loss of grounding. And we all experience walking into our living room and saying: now, why I'm here? What did I want to get? What brought me into the living room?
GROSS: Absolutely, absolutely, yeah.
Ms. FOX: And - but we don't worry about it excessively. We may worry about it a little bit, but it's not too bad. But imagine if you're somebody with Alzheimer's and you walk into your living room, and you not only wonder why you're there, but you've forgotten that it's your living room. And on top of that you don't even recognize the building that you're in. And if like Ed, or like some of our friends, you have hallucinations and you see birds flying out of the fireplace, which a friend has experienced, or like Ed, you see men climbing out of the floor, perching on the ceiling. You're seeing a threat. Imagine what that might feel like and how frightening that must be not to have a solid foundation under your feet or even around you.
GROSS: I don't think that I saw any pictures in your book of him - your husband hallucinating frightening images. I mean, he doesn't look terrified in any of the photos. It doesn't look like he's having that sundowning effect in any of the photos. And, maybe I'm wrong, maybe I'm misinterpreting them, but it seems like you maybe protected him from documenting that or perhaps protected yourself from documenting that in your photos, or maybe you just kept them out of the book.
Ms. FOX: I think what shows in some of the photographs is certainly his anxiety and his confusion and his pain. I think that does show. Ed is also a very dignified and elegant man. And as candid as this book is and as honest as it is, I wouldn't have done anything that compromised his dignity.
GROSS: Judith Fox, thank you so much for talking with us and be well.
Ms. FOX: Thank you, Terry Gross. Thank you very much.
GROSS: Judith Fox's book of photographs of her husband is called, �I Still Do: Loving and Living with Alzheimer's.�
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GROSS: You can download podcasts of our show on our Web site, freshair.npr.org. And you can follow us on Twitter at nprfreshair. I'm Terry Gross.
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