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.

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.

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 …

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