I Still Do

March 14, 2010

Global Conversations about AD

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.

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February 20, 2010

Art Changes us

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.

I’m attaching a photograph from my book and photography series I Still Do;  I hope you enjoy it.

copyright 2006. Judith Fox

February 13, 2010

Survival Strategies

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 …

February 3, 2010

Grandchildren, AD and sfmoma

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.

copyright 2010. Judith Fox

 

copyright 2010. Judith Fox

 

copyright 2010. Judith Fox

 


June 10, 2009

Conversation for Alzheimer’s Caregivers

Filed under: Uncategorized — Tags: , , , , , — Judith Fox @ 2:34 pm

We are lonesome animals. We spend all our life trying to be less lonesome. One of our ancient methods is to tell a story begging the listener to say — and to feel — ”Yes, that’s the way it is, or at least that’s the way I feel it. You’re not as alone as you thought.”

—John Steinbeck.


My husband was diagnosed with Alzheimer’s disease eleven years ago—the stigma and misinformation surrounding Alzheimer’s weighed us down as  we began learning to live with it.   We were helped by talking with others who were traveling with us on this journey none of us ever wanted to take.   We benefited from each other’s stories and we were warmed by our connections.  

One of the reasons I created the book I Still Do … Loving and Living With Alzheimer’s, was to contribute to the discussion we—as individuals and as a society—must have in order to clear the clouds of fear and whispers surrounding this disease. I am telling my story so that someone else will be more comfortable telling their own.

I’d like to ask you to expand the conversation surrounding Alzheimer’s by telling your story here.  I believe that everyone who chooses to be a caregiver is made of special stuff, and I’m interested in knowing who you are, why you chose to take on such a challenging role and how it’s changing your life.  It’s a story only you can tell.  

Ultimately, this site is yours and you will decide what you want from it.   But—for my part—I’d like this to be a place where stories are shared.

 

This is the story behind the creation of my book I Still Do: 

My life was upended in 1998 when my husband, Ed, was diagnosed with Alzheimer’s. We had been married for three years. I was recently widowed and he was divorced when I fell in love with this accomplished man who ate the right foods, exercised and completed his crossword puzzles in ink. There was no history of the disease in Ed’s family, but Alzheimer’s doesn’t play favorites and it doesn’t play fair.

The future, as we had planned it, wasn’t going to happen.

For a couple of years after receiving Ed’s diagnosis, we evaded reality and denied growing evidence of the illness. It was true that Ed had trouble with his memory. He didn’t track conversations the way he used to and he was sometimes uncharacteristically irritable. At the same time, he also avidly read his medical journals, became an active partner in a start-up business, and played tournament golf—amazingly sinking his third and fourth holes-in-one.

 Searching for answers, I bought a stack of books on Alzheimer’s. It took me two years to open the first one.

 During this period, I was actively involved in making, exhibiting and selling fine art photographs. I focused my eyes and my camera on strangers and, occasionally, took superficial snapshots of the man I love. I’ve always seen things more clearly through my camera lens, and I wasn’t ready to confront—to literally zoom in on—what was happening to Ed.

 Eventually, the dancing and the denial stopped. I began making photographs of my husband, my friend, my lover, and muse. I photograph Ed to remember him, to celebrate him and to keep him close as he’s leaving.

Ed’s support, encouragement, and partnership as we worked together on what started as a photography project and ended as a book,  resulted in a great gift to me—personally and professionally—but I ache because we can no longer share the results of this special collaboration.  Ed’s Alzheimer’s has progressed to the point where he has severe visual agnosia and his brain no longer makes sense of what his eyes see.   Photographs and written words hold no meaning for him.  And he’s forgotten that we created a book—together.

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