Between spending time with Ed, traveling to speaking engagements and exhibitions, and beginning an exciting new photography book, I haven’t focused on my blog. I appreciate those of you who’ve continued to stay in touch with me and I do plan to get back to my blog when the time is right, so please stay tuned. In the meantime, I hope you enjoy browsing my website and my most recent photography project, Sea of Dreams.
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.
A few days ago I was at the Louvre, looking at some of the world’s most gorgeous art. The Museum’s magnificent collection includes a number of beautiful paintings by Leonardo da Vinci that are hung on a wall close the room where the Mona Lisa is displayed. It was a pleasure spending time with the other da Vinci’s—I could stand in front of them for as long as I wished and get as close as I wished without disturbing others or being disturbed by them; mostly because the others weren’t there. They were in the adjacent room where the small Mona Lisa is hung behind bulletproof glass and fifteen or so feet beyond where the closest viewers are allowed to stand. Eventually I walked into the room where the celebrity painting holds court to millions of viewers each year—roughly half of whom were there when I was. Each of them was pushing, shoving, clawing his way to the front of the crowd—digital cameras held high and flashing their forbidden bulbs. The crowd looked like paparazzi—I wouldn’t have been surprised to hear people shouting “Look this way, Mona.”
One of the things Alzheimer’s reinforces is the value of living in the moment, of experiencing what’s in front of us. Maybe some of the people in front of the famous painting were experiencing the moment they wanted to experience—maybe their pleasure came from taking a snapshot, plugging their readers into their computer, and experiencing Mona Lisa several times removed. I know that many museums, including MoMA, are now working with Alzheimer’s patients because they believe that looking at art soothes AD sufferers (and their caregivers). I like to think that people with Alzheimer’s really look at a work of art when it’s in front of them.
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.
The people I came across in Greece seemed very comfortable being photographed. Even the animal mascot in Mykonos, Petros the pink pelican, seemed comfortable in front of my camera. I love being asked to speak in venues as beautiful and friendly as Greece. And speaking of beautiful, the mountain village in the photograph below is real—although it’s so perfect it looks like a stage setting.