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.
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 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.
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.