When I began writing my blog, I was warned that I shouldn’t start it unless I was committed to writing on a regular basis. You can see where that went. I’ve taken a seven month sabbatical—time does go by fast when you’re having fun.
Since my last blog entry, I’ve given speeches about Alzheimer’s and caregiving in Montreal; Greenwich, CT.; Baltimore; San Francisco; Dublin; Berlin; Luxembourg and Paris. My photographs from I Still Do have recently been on exhibition in Berlin and Paris and are currently in museum shows in San Diego (MoPA) and Daytona Beach, Florida (SMP.) It’s clear to me that people around the world want to understand the personal stories behind the Alzheimer’s statistics—and art is a way for them to connect very personally and very viscerally with a disease that is often still hidden. Seeing how people bond with Ed through my photographs of him, and by extension connect with others with AD, is something I find very rewarding and touching. For me, photographing Ed has enabled me to give shape to something that’s shapeless and a voice to something that’s been silent. It’s been a way for me to confront Alzheimer’s using the only weapons I have.
Ed, by being my model, my muse, my husband, my best friend—and, always, my cheerleader—has given me a very great gift. He’s also touched thousands of people whom he’ll never know.
Since we’re in the season of Thanksgiving, I will add that Ed and I are doing well even though his Alzheimer’s has progressed. Our conversations are less complex and wide-ranging, but we still understand each other. We go for walks in the facility in which he resides or we sit in the sun holding hands. Last week, Ed had forgotten who I am and that we’re married—what he told me, though, is that I’m his best friend. That, and dinner with my family, make this a very good Thanksgiving.
My daughter, son-in-law and grandchildren came with me to London for the opening reception of my photography exhibition at the Cork Street Gallery. We’re continuing to travel together—taking advantage of being in Europe and my grandchildrens’ spring break from school. We’ve been on the go—as you can imagine—but I want to take a few minutes from touring, eating, walking and (on rare occasions) sleeping, to thank everyone who has taken the time to write to me as a result of the wonderful story and slide show on BBC online.
It’s so clear how deeply families and individuals are affected by AD—the stories that have been shared with me via e-mails and comments have meant a great deal to me. I love the connections and the way we enter each others lives.
My daughter kept her Flip on during my brief talk at the Gallery—I’ll send a link once we’re back in the States.
I just came back from five days in San Francisco, where I went to attend the opening of an exhibition of my work I Still Do and Sea of Dreams.
Here’s a review of the show by Robert Cortlandt:
Next on to Fifty Crows in their new space (which personally I found rather dark) . They’re showing Judith Fox’s new work I Still Do. An exceptionally moving show of photographs about her husband as he struggles with Alzheimer’s. It is a very intimate and personal look. One thing about documentary photography, for me at least, is that struggle for access where I am reaching for the intimate. She seems to have achieved that fine line of revelation that doesn’t feel like intrusion. The feeling in her book is exactly what I want to achieve in my doc. projects.
I’m attaching a few photographs from the trip and from the show. I also want to share with you a photograph I took at the lovely Yerba Buena Park on the one day it didn’t rain.
I was going to write about another suggestion for coping with AD, and then decided against it. Alzheimer’s is a significant part of my world and my life, but it’s not the only part. I’ve been thinking a lot about my photography and writing (which, admittedly, have helped me cope with Ed’s Alzheimer’s) and the part art plays in our lives, if we’re open to it. I’ve been thinking about the ways in which art can change our world and our way of seeing our surroundings. I’ve been thinking about specific painters and photographers and musicians and the riches they’ve given me—even when their work has disturbed and challenged me. And I’ve been thinking about how grateful I am to have the ability and desire to express myself through photography and writing. I’ve been thinking, too, how I hope that each of us has the good fortune to use whatever creative talents we have to nurture ourselves and the people we love—whether we cook, or garden or dance or weave. And, in indulging our more creative ambitions, we will find new ways to cope with AD—or whatever challenges we’re faced with.
When caregivers ask me for advice, one of the things I suggest is that they ask for help. And to ask for specific help. I can say this with the deep conviction that comes from experience; it took me eight years to ask anyone for help.
These were some of the voices in my head which held me back: I should be able to do everything myself; if someone wants to help, they’ll offer to do so; I don’t want to feel obligated. And then there’s “I can stay by myself, I don’t need a babysitter.” Sorry, that last voice wasn’t in my head but coming from my husband’s mouth. So, between my unwillingness to ask for assistance and Ed’s unwillingness to let anyone but me care for him, I waited 2920 days before asking Ed’s children to stay with him for a week so I could take some time off.
When someone says to you “What can I do”—tell them. “Would you please stay with my wife on Monday afternoon so I can have lunch with friends?” “Would you take my mother to lunch tomorrow so I can get my hair cut?” “Will you stay with your grandfather for the weekend so dad and I can get away?” Time off is energizing—don’t wait eight years to find out.
I’ve been asked many times how I’ve coped with caring for Ed during the past 12 years. There’s no one answer that fits all (just as there’s no one size that fits all), but over the next couple of weeks I’ll share some strategies that have helped me. I won’t address them in any particular order—at different moments and during different disease stages, they vary in their value. Please let me know which issues concern you, and I’ll be happy to try to address them.
There are some survival strategies that I’ve learned—or relearned—that improve my communications with everyone in my life. For example, don’t take the behavior personally. You know that silverware that your mother put in her closet? She didn’t put it there to drive you crazy. And when Ed’s wallet disappeared for two weeks before turning up in a rarely-worn shoe, he didn’t put it there because he likes to watch me tear the house apart. And when your wife decided to stay in her bathrobe and you missed your doctor’s appointment, it wasn’t about you. Sure, the frustrating behavior is being done by them and it’s affecting you—but the AD patient is trying to deal with their topsy-turvy world as best they can. Their behavior makes sense to them at the time. So don’t take it personally.
Learning to relax in the face of confounding behaviors I can’t control is a healthy way for me to live—whether I’m dealing with someone with AD or with the security lines at the airports. It’s not personal, it’s not personal, it’s not personal …
I just returned from trips to San Francisco and New Orleans, where I spoke to 2000 health care professionals. The people to whom I spoke were engaged and energetic and really interested in talking about what it’s like to live with AD. I was particularly touched by grown grandchildren who had experienced the gradual loss of a grandparent to the disease, and who often watched their parents take on the role of caregiver. I know how special a grandparent-grandchild relationship can be and I think the pain AD brings to a grandchild is often overlooked. I think the grandchildren to whom I spoke were glad to be able to talk about their grandparents and Alzheimer’s. My grandson chose to write about Alzheimer’s for a class project—I know he and my granddaughter understand things about the fragility of life that other children their age might not.
On another note: when speaking before groups, I often don’t see more of a city than an airport, hotel room and venue (Convention Center in New Orleans.) When in San Francisco, though, I did have the opportunity to spend a few lovely hours in the San Francisco Museum of Modern Art—which was, not coincidentally, right near my hotel. I often head first to the photography exhibitions—and this time was no exception. But I was also struck by the design of the museum. I’m attaching some of my photographs from sfmoma; if you’re in San Francisco, try to find time to make a visit. I think you’ll enjoy it.
I’m giving a lot of speeches this coming year on AD and caregiving, and I like doing it. I like the connections. It’s almost like sitting next to someone on a plane—you will probably never see them again, but while you’re sharing space and time there’s a connection. A nice one, if you’re lucky.
Once, after speaking at a university about the harmful secrecy shrouding AD, a medical student talked privately to me after Q&A. She said she’s suffering from depression and that diseases such as that one were never discussed in her Korean family or community. She suspected that her mother also suffered from depression, but had never asked. She said that after listening to me talk about the unnecessary stigma of AD, she was going to go home and discuss her depression with her mother—and she’d be asking questions.
After another speech, a man asked me to sign his copy of “I Still Do.” He wanted me to sign it to him and to his 13 year old daughter. “I want her to understand the disease,” he said, and then joked “in case I get it.” I thought it was sensitive and smart of him to open such a conversation with his child—even at 13. I was pleased to hear that.
And then there are the people who break down crying when talking about a parent or spouse with the disease; and the people who have no personal experience with AD, but have a lot of questions they’ve never asked; and the people who want to know if they should be worried because they’re always forgetting things (there are a lot of people in that line).
I love the fact that people talk openly in the right environment; if you’ve been honest and open with them—they will honor you by talking to you in the same vein.
Ed and I spent a lot of time yesterday on a verbal trip down memory lane. I talked about trips we’d taken, and focused on those moments I thought were most vivid and might have the strongest emotional context for him. Ed seemed to truly remember some of the experiences I described. After the conversation, he thanked me for talking about “the good old days.” Sometimes I’m so focused on today—and wanting to share my day with Ed—that I overlook what’s important to him now. And what’s important to him is recalling those few memories he still retains.
I enjoy telling, and retelling, these stories to him—I also enjoy the challenge of trying to figure out which experiences he’s most likely to remember. It’s a way of keeping the old new and interesting for me, too.
What strategies do you use to keep your conversations alive and fresh when you’re talking to someone with AD?
Today, when I saw Ed at the facility where he lives, he was extremely lucid; and it was very painful for both of us. The first thing he said to me was that he felt as though he were in another world. He told me he didn’t want to be around people with his disease (he doesn’t remember that it’s called “Alzheimer’s.”) He said he just wanted to hide.
Ed was diagnosed almost twelve years ago and his ability to still recognize and articulate his pain is amazing to me.
I told him that I was working hard and doing what I could to help people understand Alzheimer’s; that a lot of great research is being done in an effort to find treatments. His answer: “That takes a lot of time and is very costly. I want to be able to function now.”
I don’t think there are many advanced AD sufferers who are able to describe their feelings as well as Ed does—but that doesn’t necessarily mean that they’re not feeling what Ed is. Some people have asked me if I think it’s harder for the caregiver than for the person who has AD, because the person with Alzheimer’s must be unaware of his or her condition. In many ways, I wish that were true; on the other hand, as difficult as today’s conversation with Ed was, it was a real conversation between two thinking—and loving—people.