I Still Do

March 25, 2010

Visiting someone whose life is winding down

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.

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 17, 2010

Ask for Help

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.

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 6, 2010

Unintended Irony at Disneyland

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

copyright 2010. Judith Fox

 

 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.

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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