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.
Sunday, January 17, 2016
ALZHEIMER'S: THE ALTERNATE REALITY
The Alternate Reality
I looked at
the calendar today to realize it’s already the middle of January. Wasn’t it just New Year’s Day a couple of
days ago? I feel I’ve lost time somewhere.
I guess that’s what stress does, makes you lose track of time.
trouble getting past something that happened Wednesday of last week (at least I
think it was Wednesday of last week).
Joe and I were
having a routine early afternoon, Joe napping as I putter in the kitchen. I hear the sound of a chainsaw, which I think
must be the gardeners trimming the beautiful palm that graces the common area
in front of our home.
I decide to
say hello to the gardener so I head out the front door, making it only a few
steps before I see his workers have cut the tree in half. With no prior notice—no warning at all—they
have just destroyed the tree.
I run into
the house to get my phone and call the person responsible. The noise I’m making wakes Joe from his nap, and
he follows me back out to the yard just in time to see the workers wrestling the
tree’s carcass to the ground.
By now there
are several people surveying the “crime” scene, and quite a lot of noise. I’m upset over the loss of the tree and for having
been too late to stop it from happening but by the time the person responsible arrives,
it has become a catastrophe in Joe’s cognitively altered mind. In fact, I have never seen him quite so
agitated and angry about anything. It is
the first time I have feared he might completely lose control of himself.
I guess looking
back at what happened, I shouldn’t have been surprised by the level of Joe’s
distress. I know since Al parachuted in the
parts of Joe’s brain that control emotion, reasoning, and problem solving have
been disrupted but, until this incident, I hadn’t seen such an extreme manifestation
all of the elements involved, what happened last week was a perfect storm, a
recipe for trouble within the Alzheimer’s mind; the disorienting noise of the
chain saw, loud conversations happening faster than comprehension allows, an abrupt
awakening. It would be hard to concoct a
worse situation for Joe. It was the mother-load
for overstimulation, enough that it would take him several days to
recover. (Mostly he just slept.)
caregiver, I try hard to protect Joe from trouble spots in our environment, but
I know that’s unrealistic. Stuff happens.
A while back I dropped a pan on the tile floor in the kitchen and was
surprised at Joe’s extreme reaction. I
had to remind myself that when he processes a loud sound, there is a lag
between hearing the sound, interpreting it as something harmless (not an
explosion), and being able to relax again.
hear the word Alzheimer’s, most will immediately think of memory loss
(forgetting words, names, or events).
That certainly is a big part of it but there are other losses that may
be equally difficult for a person, and their caregiver, to cope with.
the ability to perceive time or the passage of time, looking at a clock and not
being able to understand how time is moving. It sabotages your ability to plan,
to be on time, or even to know if you’re late.
You might get up the middle of the night and, thinking it’s morning, start
breakfast, or turn on the shower. Or worry about being late for an appointment
that is actually scheduled for many hours later. It doesn’t take much to understand the stress
that would create for your spouse/caregiver.
I should be
careful talking about losing perception of time. Based on what’s been happening lately, maybe
I’m the one that is losing her perception of the passage of time.
think of it, I’ve been at odds with time my whole life. When I was a child time wouldn't move fast enough. Years later, after I'd worked for 25 years, I used to say that I didn’t need more money,
I just needed more time; time to do the things I wanted to do…time to be with
my family…time to rest and enjoy what I worked so hard to get…time to think and
plan…time to create.
Here I am
now wishing I could roll time back; go back to the time before Al stuck his
nose in our business, before all the craziness and worry, before we started
down the rabbit hole with Alice (really Al) into the alternate reality
that is Alzheimer’s.
“If I had a world of my own,
everything would be nonsense. Nothing
would be what it is, because everything would be what it isn’t. And contrary wise, what is, it wouldn’t
be. And what it wouldn’t be, it would.