I Still Do

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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January 16, 2010

Lucid moments

Filed under: Alzheimer's Disease, alzheimer's, brain, caregiver, lucid, memory, Uncategorized — Judith Fox @ 7:28 pm

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.

December 9, 2009

Memories and Truth

Filed under: Alzheimer's Disease, alzheimer's, brain, memory, Uncategorized — Judith Fox @ 7:17 pm

I’ve always been interested in memory and there was a time in my life when I wanted to do research on the subject.  That was until I realized that statistics was a necessary part of the program.  So, I altered my career goals—but my interest in memory continued.  How ironic that, many decades later, I would be married to a man with Alzheimer’s.  And what I’ve learned is what I suspected all along: that our memories are less exact and less reliable than we’re generally willing to admit.

Did you ever see the film “Rashomon”?  It’s a Japanese classic from 1950 that tells the story of a rape and possible murder through the wildly contradictory stories of four witnesses to the crimes.  The film deals with issues of memory and truth—if you haven’t seen it, you might want to check it out.

My husband sometimes confabulates—tells stories he believes to be true, but which aren’t.  He’s neither deliberately lying nor intentionally trying to deceive.  His challenged brain is trying to make sense of his world.

We’re just starting to understand how our memories work.  Our brains are amazing and complex, and current research is so exciting that it almost makes me want to give statistics a chance.

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