My name is Jane and my husband of 36 years was diagnosed with Dementia/Alzheimer’s about three and half years ago. This blog is a tale of our lives after “Al” (the name I’ve given Joe’s disease) moved in. In the two years since I began this blog, it's been read in over 25 countries. It really is "AL" over the world. Thanks for coming along with us down a path of uncertainty. Joe passed on November 19, 2016.
Tuesday, August 11, 2015
ALZHEIMER'S: 20/20 HINDSIGHT
Joe and Jane (without Al) in 1987
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
have written about that. Well, maybe it
wasn’t that funny, maybe you just had to be there.