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 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 …