September 14, 2015

Guest Blogger Jane Gayer, Family Caregiver

Jane’s Blog: Adventures of Joe and Al and Jane


It’s easy to be knowledgeable about events after they happened, but sometimes very difficult to catch things as they unfold.  I guess that’s where the old axiom about 20/20 hindsight comes from.

I always thought of myself as insightful, with keen instincts and maybe even a little intuition, always able to analyze situations and draw conclusion without reams of data.  In my career, that was what I got paid to do.  So why did it take me so long to understand what was happening with Joe cognitively?  Why didn’t I connect the dots earlier?  It isn’t as if Al just showed up one day and said, “Here I am!”  There were signs, lots of signs stretched over several years.  In hindsight, we were tripping over them.

In the course of educating myself about this disease (Al), I’m seeing a common theme, and it isn’t just denial or the “ostrich syndrome” (sticking your head in the ground rather than accepting some uncomfortable facts).  It’s more complicated.  It’s more like working on a 1000 piece puzzle without the aid of its picture.  I’m going to call it “BLEAP” (Blocked Logical Early Al Perception) syndrome. (And yes, I just made that up.)

If you have BLEAP like I did, you may see lots of little pieces of Al but never a complete enough view to connect things.  I’ve spent some time thinking about this and how I might help others in a similar situation benefit from my hindsight.  I know it’s dicey to think I can save someone else pain by sharing my own experience (it doesn’t work all that well with childrearing).  But I’m willing to give it a try.  I also know that everyone’s path through this disease is different.  I haven’t attempted to create a diagnostic guide, these are just my own observations.  I’m not Dr. Gayer.

I’ve learned that Al isn’t just a memory disease, it’s a brain disease that affects every aspect of your being.  Researchers now believe that changes in the brain may start as early as 10 to 15 years ahead of any symptoms.  They’ve developed a set of seven stages to describe the symptoms and progression of the disease.  I believe Joe was in Stage 1 up until about 2006.  During this period he had no notable symptoms.  He was just Joe, my Joe.

In Stage 2, symptoms may be very subtle, with only mild forgetfulness.  In Joe’s case, the changes just seemed to be normal aging.  His social skills and mood underwent changes, but again, only in hindsight would I have thought them to be abnormal for his age.  After all, I had never lived with anyone as old as Joe (I had to get that one in).

There were subtle changes in Joe’s logical thinking and ability to do things in a sequence.  Anything that required assembly took longer to accomplish but still, nothing that would have sounded an alarm. This stage went on through 2009.

During Stage 3, symptoms showed in Joe’s inability to solve problems or learn new things, and in planning tasks.  Social skills and temperament began to be more of an issue.  He stopped enjoying playing cards with friends, and there were problems with his patience level on the golf course.  It was during this period that driving and judgement also began to be problematic.  It was 2010 that he drove the golf cart into the garage door, twice.

More memory issues occurred but Joe was able to compensate to the point that he could hide it from most people.  He obsessed about being on time; his calendar was never far from his side.  (I now understand that it’s common for people with high intelligence to find ways to compensate and mask early memory issues.)  Joe began struggling to find the right words and finish sentences.  He started disengaging from group conversations.   I would characterize Joe as having “grumpy old man” syndrome and maybe needing an attitude change.  He seemed to judge quickly and grow more negative, which was not “the normal” Joe.  This went on through 2012.

Early in 2013, I started questioning what was really happening with Joe but still hadn’t connected all the dots.  About that time I was doing community theatre; Joe was spending more time at home alone watching TV.  It seemed like he wanted to be alone, like he didn’t miss me.  I noted changes in his posture and gait.  It was harder to get his full attention, and I thought his hearing must have worsened.

Joe had always managed our personal finances and paid household bills.  He started making errors in the checkbook, sending checks to the wrong places or sometimes forgetting to enclose them all together.  In the summer of 2013, after a couple of incidents on the golf course and several weeks of him getting up in the middle of the night thinking it was morning, Joe finally agreed to go to the doctor.  I believe it was about this time (mid October 2013) that he moved into Stage 4.

It is in Stage 4 that most people who have the disease are diagnosed and sometimes misdiagnosed.  In Joe’s case, there was little doubt about his diagnosis.  And, you guessed it, this was the point where my own BLEAP syndrome cleared up completely.  Completely!

So here we are, slowly moving into Stage 5. And this is where I’ll stop, because I would no longer be writing with the voice of experience.   We aren’t through this yet, and I won’t be trying to turn the pages faster to get to the ending.  There will be a cast of characters that we’ve yet to see and the plot will twist and turn.  I’ll take notes and try to help with any BLEAP syndrome that might be out there.  That’s all I can do.

Someone pointed out to me that my blog has less humor and isn’t as lighthearted as it started out. I think that’s true.  I’ll have to work on that, because there are humorous things that happen every day. Sometimes they just don’t extend to the fingers on the keyboard.  Like this week, when Joe put on his pool shoes (yes we wear pool shoes) and forgot to take off his socks before he got in the pool.  I could have written about that.  Well, maybe it wasn’t that funny, maybe you just had to be there.

Oh well.  I think the coffee is ready.

.  mug1


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