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 …

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 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.

copyright 2010. Judith Fox

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

 


Talking to, and with, lots of people

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.

Rain in Sunny California

Seems it never rains in sunny California … but girl, don’t they warn ya?  It pours, man, it pours.

It’s been pouring for the better part of three days now, and we’re cranky.  Until this week, the only use my umbrella got was when I headed east.  I know I’m spoiled, you don’t have to tell me.  But I’ll confess:  as inconvenient as the rain is for me, and as seriously difficult it is for others in SoCal, there’s something about it that I like now and then.  And, if you’ll excuse me, I’ve got a book to read and a fireplace to light.

copyright Judith Fox

A Dignified End of Life

I have a “Google Alert” set to notify me when there are articles, blogs and reviews on “I Still Do.”  As a result of an alert I recently received, I was introduced to the Pallimed Blog which discusses issues around hospice care, palliative medicine and end of life issues.

The blog was founded by a palliative care physician, Drew Rosielle, MD and the contributors are health care professionals in the palliative care field.  I had personal experience with hospice care for both my parents and know how important and helpful it can be.  I can’t imagine what it would be like to face end-of-life issues and decisions without knowing there are health care professionals who devote their time to providing a measure of dignity for us as we face death.  This blog addresses those difficult issues, which many physicians are unable to handle.  I wanted to use this space to thank Dr. Rosielle and his colleagues around the country for doing such important work.  I’d also like to know how you feel about this issue.

If you want to check out their review of my book, it’s at: http://arts.pallimed.org/2010/01/i-still-do-loving-and-living-with.html

Kids and Beaches

Alzheimer’s can be such a heavy subject to write about, and to read about.  I’d like to lighten things up once and a while with one of my photographs.  It works for me, but what I want to know is if it works for you.  Please let me know how you feel about this direction.

copyright 2009.   Judith Fox

Good Old Days

Ed and I spent a lot of time yesterday on a verbal trip down memory lane.  I talked about trips we’d taken, and focused on those moments I thought were most vivid and might have the strongest emotional context for him.  Ed seemed to truly remember some of the experiences I described. After the conversation, he thanked me for talking about “the good old days.”   Sometimes I’m so focused on today—and wanting to share my day with Ed—that I overlook what’s important to him now.   And what’s important to him is recalling those few memories he still retains.

I enjoy telling, and retelling, these stories to him—I also enjoy the challenge of trying to figure out which experiences he’s most likely to remember.  It’s a way of keeping the old new and interesting for me, too.

What strategies do you use to keep your conversations alive and fresh when you’re talking to someone with AD?

Lucid moments

Today, when I saw Ed at the facility where he lives, he was extremely lucid; and it was very painful for both of us. The first thing he said to me was that he felt as though he were in another world.  He told me he didn’t want to be around people with his disease (he doesn’t remember that it’s called “Alzheimer’s.”)  He said he just wanted to hide.

Ed was diagnosed almost twelve years ago and his ability to still recognize and articulate his pain is amazing to me.

I told him that I was working hard and doing what I could to help people understand Alzheimer’s;  that a lot of great research is being done in an effort to find treatments. His answer: “That takes a lot of time and is very costly. I want to be able to function now.”

I don’t think there are many advanced AD sufferers who are able to describe their feelings as well as Ed does—but that doesn’t necessarily mean that they’re not feeling what Ed is.  Some people have asked me if I think it’s harder for the caregiver than for the person who has AD, because the person with Alzheimer’s must be unaware of his or her condition.   In many ways, I wish that were true; on the other hand, as difficult as today’s conversation with Ed was, it was a real conversation between two thinking—and loving—people.

Manhattan Lights

There’s nothing quite like the lights of Manhattan.  They’re musical to me—always pulsing, twinkling and moving.  Much like the city.  These photographs were taken from my hotel window during my recent trip to New York.

© Copyright Judith Fox. All rights reserved.