Resources for caregivers and patients mentioned during the show today are: California Caregiver Resource Center and the Shiley-Marcos Alzheimer's Disease Research Center.
MAUREEN CAVANAUGH (Host): I'm Maureen Cavanaugh, and you're listening to These Days on KPBS. There have been many words written about Alzheimer's disease and the pain of watching a loved one slowly lose the memories that connect us to our lives and our relationships. Now, in a series of poignant and loving images, photographer Judith Fox once again proves the adage that a picture can be worth a thousand words. She’s documented the many moods and manifestations of Alzheimer's through the face and body of her husband, Edmund Ackell. He's been living with Alzheimer's for 11 years, and so has his wife Judith. Her book "I Still Do" is dedicated to him and to the men and women who care for family members with Alzheimer's disease. And, Judith, welcome to These Days.
JUDITH FOX (Photographer): Thank you, Maureen. It’s a pleasure to meet you.
CAVANAUGH: Well, we’d like to invite our listeners also to join the conversation. Are you caring for a family member with Alzheimer’s? Share your questions and your comments, give us a call at 1-888-895-5727. I want to wish you and Ed a happy 14th anniversary.
FOX: Thank you. It’s very bittersweet and it’s an emotional day for me.
CAVANAUGH: I can imagine so. Well, thank you for being here for this day. We appreciate it. And I want to start out on – in addition to the photographs in this book, there is some text and some description of the photographs in “I Still Do.” And if you would start by reading us a couple of paragraphs from the very beginning of the book, that would be great.
FOX: Of course. And I will say that the text, to me, is as meaningful as the photographs. It came about later in the project but it’s grown to mean a great deal to me. ‘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.’
CAVANAUGH: And that sets up the photographs in your book “I Still Do.” Tell us, Judith, more about your husband.
FOX: Ed is quite a bit older than I am. He’s 83, almost 84, and he’s very typical of his generation of men, although, of course, I think he’s very unique. But he’s very sweet, very gentle, modest, totally unpretentious. He’s also brilliant and handsome.
CAVANAUGH: You learned that Ed had Alzheimer’s when you were still almost newlyweds.
FOX: Correct. I also think that even before we married and became engaged, it had occurred to me that he might have Alzheimer’s but that’s something that I then put aside.
CAVANAUGH: You didn’t want to think about it? Or did you consider it and decide it didn’t make any difference?
FOX: That’s exactly what happened. And it was a very specific moment that I actually remember very clearly and I went through the thought process, what if he does have Alzheimer’s? And my answer was immediate. It was, if he does, I love him very much. Nobody could care for him more than I. I couldn’t stand the idea of his having Alzheimer’s and being out there and me not being able to help him with it. And then again, I did put it aside.
CAVANAUGH: I wonder if you can tell us how his illness has progressed.
FOX: Probably because he is so bright or at least that’s one theory, that his reserves were so great, in his case the progression has been very gradual, which also, in some ways, made it more difficult and confounding because there were really several years where I went through thinking he has it, he doesn’t have it, he’s a selective listener, which I always knew he was. I found excuses. And Alzheimer’s, even eleven years ago, was so primitive that the professionals that we were going to couldn’t answer my questions. Clinically, at that point, at least where we were, and we were at a very good medical center, there was very little help.
CAVANAUGH: And, of course, Ed is a doctor, is that correct?
FOX: Right.
CAVANAUGH: So did he try to diagnose himself along the way?
FOX: No. What’s interesting about Ed’s connection to medicine is probably twofold. One is that he did know what the future was but the other is as a physician and as a human being, he always believed in hope, and that was something that he brought to his patients and to friends, even, who said, you know, my relative has a tumor, what do you think? So I think hope for himself, even though intellectually he knew there was none, was also part of the process and led to denial as well as understanding.
CAVANAUGH: I’m speaking with Judith Fox about her new book of photographs called “I Still Do.” And in looking through these photographs, Judith, there’s so much in these photographs that are – just doesn’t have to be said. The expressions and the body language that Ed has and that you’ve captured in these photographs just say volumes through the image. I wonder if you could perhaps tell us how Ed’s life has changed through the years of coping with this disease.
FOX: Well, he’s moved from the very vital, energetic, alive, engaged person that I married—although he was 70 at the time, you would have thought he was much younger—to an old man. And if you met him now and instead of saying this is my peer and my husband, I said this is my father, you might not be surprised. So it’s just aged him tremendously. It’s taken his spirit. It’s taken his memories. One of the most difficult things is that when you have Alzheimer’s, particularly as it progresses, you don’t feel grounded. And I don’t let myself think too hard or too long about how horrific that must be, not to have a sense of where you are, who you are, who’s around you. Ed also has, and has had for several years, hallucinations. That’s also got to be just awful.
CAVANAUGH: Judith, how has this changed your life?
FOX: It’s changed it very dramatically and in different ways at different times. I, in addition to being an artist, I owned a large small business, and I was always very independent. I traveled, I served on boards, I consulted, I had a large staff. I was free to do anything I wanted to do. And as Ed’s Alzheimer’s entered our lives, eventually very dramatically, my world became extremely narrow and it was focused on Ed, on Alzheimer’s and eventually on my photography and my book. But when you’re dealing with, when you’re caring for, somebody with Alzheimer’s, it is absolutely 24/7. There isn’t anything else, and it becomes all consuming. And that changed my life. My life is now changing again with the book, and Ed, three months ago, we had to move him into a facility, so I’m starting to travel again and my life, in the last six months to a year, has started expanding again.
CAVANAUGH: Taking another turn.
FOX: Yes.
CAVANAUGH: Let’s take a call. Kathleen is calling from Normal Heights. Good morning, Kathleen, and welcome to These Days.
KATHLEEN (Caller, Normal Heights): Good morning. Thanks for taking my call.
CAVANAUGH: You’re welcome.
KATHLEEN: Yeah, I’ve been taking care of my mom for the last three and a half years and we didn’t even know she actually had Alzheimer’s because, you know, we just had contact with her in Arizona over the years. And after moving her out here, I started finding resources available to me in San Diego…
FOX: Umm-hmm.
KATHLEEN: …including the UCSD Senior Behavioral Center. They’ve got psychiatric help…
FOX: Umm-hmm.
KATHLEEN: …which really helped me realize how bad her condition was. And also the Southern California Caregivers Association, which helps me, the caregiver, and actually sends me questionnaires about my, you know, psychological state of mind…
FOX: Right.
KATHLEEN: …and, you know, to try to find out if they can help. And they even called me about a month ago to see if I would like someone to come over so I could have time off.
FOX: Wow.
CAVANAUGH: That’s a great resource.
KATHLEEN: And they said they have a little bit of funding and then they said, well, our funding will run out by the end of the week probably and then maybe we’ll get some more funding but apparently their funding has been cut.
CAVANAUGH: Well, thank you for that, Kathleen. That – I hope – I suppose people who are caring for their family members with Alzheimer’s hopes that resource continues in San Diego.
FOX: I want to say that we are so fortunate, those of us who are dealing with this, to be living in San Diego. The ADRC here, the Alzheimer’s Disease Research Center, was one of the first in the country. And San Diego has been a leader in research and in care and in support, and there are wonderful efforts out there that are being done and there are, as you indicated, Kathleen, wonderful resources that people should take advantage of, as you are.
CAVANAUGH: I wonder through all this, I know that you are – you are now and have been, a photographer, but I wonder why you decided to take photographs of Ed to document his condition. What did that mean for you?
FOX: Well, I didn’t start out taking photographs to document his condition. I started out with a personal photography challenge. There’s a book called “The Model Wife,” that was put together and edited and written by Arthur Ollman, who was the founding director of MOPA, the…
CAVANAUGH: Museum of Photographic Arts.
FOX: …Museum – Exactly. And that book showed photographs and told about the lives of I think it was nine male photographers and their wives or girlfriends who were their models and muses. And I read it and I thought it was interesting and I thought, okay, where are the model husbands? Where are the male muses? And then additionally, where is an older body that says desire is still in my life, I’m still a vital and sensuous creature? And so initially that was what I was looking for. I was going to use my photographs to fill that gap. As that developed, and Arthur was one of the first people who whom I showed my photographs, and he said this is a book, which I loved because I love books. And then we talked about cross marketing and he said, the photographs stand on their own. Don’t bring Alzheimer’s into it. It’s too complicated. And I thought about that and rejected that idea because Alzheimer’s was so much a part of our lives and who we were, in part. And I realized that I wanted to tell that story as well, and so all of this evolved and I became – I started seeing this more as a book that could also help people and educate people and maybe increase the conversation and the awareness of the disease and put a face to it, because Alzheimer’s has been in the closet, and there is still a lot of shame attached to it. And I want to do my part to strip that away.
CAVANAUGH: There is one particular photograph, in fact, it’s on the cover of your book…
FOX: Yes.
CAVANAUGH: …that really does indicate the isolation that people with Alzheimer’s have and that they’re forced to contend with because of the very profound way in which their lives have changed. And there’s also a little bit of text that goes to explaining what’s happening in this picture and what your husband is missing. And I wonder if you would share that with us?
FOX: I would, except the sticker that I had on that page – Ah, here it is. I think I’ve got it. I’ve got it. ‘What Ed wants most is friends, buddies, the kind of men who used to gather around him when he was president of a university and a hero on the golf course. What he wants is to sit over a beer with these men after a game of golf and talk about politics, business and sports. He wants his old life back.’ And that was very, very painful to see how much he missed that.
CAVANAUGH: And describe the photograph to us if you could.
FOX: The photograph is taken from above. It was actually taken at LACMA. We used to go up to LA periodically. It was a nice, easy trip for us to get away. And I was at – on a balcony and he was sitting below me in a courtyard and there he’s alone at a table and there are empty chairs around him and it’s – there’s a lot of negative space around him as well. And it really, I think, depicts how alone you feel, I think, when you have that disease even when there are people around you who love you. You become more isolated from your life and from the people you love.
CAVANAUGH: In the short time we have left, Judith, I really want to give people a full feeling for this book, and there is, indeed, humor in it…
FOX: Oh, yes.
CAVANAUGH: …because of your husband and the type of person that he is. And you take a lot of pictures of his body and there are a couple of pictures where he is almost essentially naked but he told you something about that when you asked him about taking these photographs. What did he say?
FOX: Well, actually I asked him about not the physical exposure but the emotional exposure in these photographs. I wanted his permission to go ahead. So this is that text. ‘I told Ed that some of the photographs I took of him saw straight through to his soul and asked if he minded being that exposed. He said, no, you can show my soul, just don’t show my penis.’ So that’s our agreement. And every photo is G-rated.
CAVANAUGH: Now, will you continue to photograph Ed?
FOX: I’m not at this point and I don’t know if I will. It remains to be seen but my feeling right now is that these are not the photographs by which I want to remember him.
CAVANAUGH: The photographs that you do want to remember him by are contained in the book called “I Still Do: Loving and Living with Alzheimer’s.” I want everyone to know that Judith Fox will be talking about "I Still Do" tonight at the Lyceum Theater at 6:00 p.m. and she will also sign copies of her book at Warwick's on November 17th. Judith, thank you for speaking with us.
FOX: Thank you very much, Maureen.
CAVANAUGH: You’ve been listening to These Days. Stay with us as These Days continues in just a few minutes here on KPBS.
