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.
My husband’s daughter will be spending the next ten days visiting her father in his facility—she hasn’t seen him in over a year and I’ve tried to prepare her for his decline. But I think she will be shocked, nevertheless, by the change. I also think it will be difficult for her.
A woman I know has a grandmother who has Alzheimer’s and is apparently close to the end of her life. The grandaughter, who is thirty, hasn’t seen her grandmother in many years and is afraid to see her now.
A man I know didn’t want to see his father as the cancer was destroying him—he wanted to remember his dad as he had been.
I just heard from a dear friend whose beloved grandmother died yesterday—he lives in Europe and she was in the United States. He flew home when she was moved into hospice. He only returned back to Europe when she seemed to be improving. He’s back in the States for the funeral, exhausted, but glad he was with her at the end of her life.
My father died at 98 and I was with him at the end of his life. In the last weeks or so before his death, he began to look like a man who was dying. But he was also beautiful in his death, and his dying was relatively easy.
We each respond differently to end of life—there’s no right or wrong, but there are choices that are right and wrong for given individuals and given families. And I hope that the choices are made with thought and care—because they can’t be made twice.
I’d love to know what you think, and what your experiences have been, in similar situations.
What was so exciting about speaking at the ADI conference in Greece (Alzheimer’s Disease International)—in addition to the programs and the vibrant city of Thessaloniki—was the opportunity to talk with other participants and hear about AD programs throughout the world. I spoke with people from Iran, the Netherlands, Israel, New Zealand, Australia, Puerto Rico, Ireland, the UK and many other countries. The interactions were inspiring, particularly since there’s attention being paid globally to AD that we in the U.S. can emulate.
And, speaking of inspiring, there is a television commercial from the U.K. that has wowed me. It’s very simple—just a single dementia patient standing against a white background and talking about having—and living—with AD. The message is: don’t run away from me, or fear me, when I tell you I have dementia. I’m a real person, with thoughts and feelings, and here I am. Why don’t we have similar spots in the U.S.? I’m going to be asking that question of influential people in the field when I get back to the U.S.
I was thrilled with the response to my photographs and my book I Still Do: Loving and Living with Alzheimer’s. My presentation centered around my experiences caring for my husband, Ed, and the power of art to help people understand viscerally, and to relate to, those experiences and to connect with my husband’s story. By extension, viewers and readers understand better the layers of the AD journey.
In the meantime, I’m enjoying the friendly people of Greece and will share some photographs when I get home.
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 Anaheim, California where I gave the keynote address at the Alzheimer’s Association Memory Walk Awards and Recognition Dinner. It was a great event, with energetic and inspirational people who care very much about increasing awareness of AD and creating change. But I found an unintended irony in the setting for the event—Disneyland.
Walt Disney’s world is a fantasy, of course. A very clean, polite, stage-managed fantasy. No trash, no dying flowers, no peeling paint, no unhappy employees cast members. In this hyper-controlled environment, we were talking about a disease that is currently beyond our control. We were discussing a disease that’s messy, that causes decay, that runs amuck. Even though I want to see a world without Alzheimer’s, I don’t want a world without the unexpected or unanticipated. Life with disease and death is tough—but there are also riches and growth and precious moments that arrive when they’re least expected and unplanned. There can be pain—but also beauty—in our human vulnerabilities and fragilities. And a flower can be glorious even when it’s faded.
So, in an odd way, I was glad that it was literally raining on our parade and on the hall in which the dinner was held. And when I looked out the resort window, I was perversely pleased to see the palm trees moving in the wind and rain and almost obscuring the large billboards that proclaimed “Fun in the Sun for Everyone” and “Just another day in Paradise.” There are some things even Disney can’t control.
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.