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, June 7, 2016
ALZHEIMER'S: LIFE AT THE SPEED OF THOUGHT
Joe with his two daughters, Juli and Jodi in 1968
races. It’s been an issue for me since I
can remember. I’ve always been what I
call, “bi-focused”. When I was in grade
school, I recall my mother sitting down with my third grade teacher as she
explained to mother that I had too much energy, couldn’t stick to one task at a
time, and generally had the attention span of a fruit fly. (Well, maybe that isn’t exactly what she said
but that was the gist of it). I couldn’t
understand why they thought I had a problem.
Didn’t having all that energy make it easier for me to get a lot of things
done? Wasn’t that a good thing? (I’m sure any therapist reading this post will
When I was
older, I got paid to multi-task, react quickly and think fast. Those were desired abilities. Of course, there were side effects like not
sleeping and having to do yoga exercises at night or take drugs to get my mind
to shut off, but that was just part of being hyper-productive, right?
to today, here in Alzheimersville where speed only exacerbates our issues.
As the speed
at which Joe processes information slows down, his world is slowing down (a
consequence of having to drag Al around with him). There are occasions when, by the time Joe
reacts to something I’ve said, I’m miles of thought in another direction and
have to put on the brakes and backtrack in order to converse with him. The astronaut Gene Cernan, the last man on
the moon, said it well describing how quickly thought could take him back to
the surface of the moon. He called it, “traveling
at the speed of thought”. That’s all it
took for him to again be 238,900 miles from earth hopping in the lesser gravity
(5/6 less than earth to be exact).
thoughts can only travel at the speed your brain is functioning. If you’ve ever tried to work with an older outdated
computer, you get the concept. And as Al
continues to downshift Joe’s brain functions, everything slows down, even the pace
at which Joe eats. Nowadays, I’ve
finished my plate, cleaned up the kitchen and am ready to start the dishwasher
by the time Joe’s barely started. The
other day it occurred to me that I was rushing him (about many things) and
needed to sit down, relax and just wait.
When I stop and
really consider our lives today, I can see that everything has slowed down. Joe just needs more time; more time to shower
and get dressed in the morning, more time to get from point “A” to point “B”,
more time to think. He’s now very
deliberate in what he does. There really
isn’t another choice.
None of that
should surprise me. In fact, it would be
irrational for me to expect otherwise. But,
sometimes it seems that life is moving in slow motion; that we’re watching
ourselves in a video and someone has tampered with the playback option.
I don’t mean
to seem insensitive. I’m just continually
struck by how many parts of our life are impacted by Al. In fact, I’d be stumped if you asked me to
name something about our daily routine that has remained as it was prior to Al’s
Last week we
got the results from the grueling half day of testing Joe went through several
weeks ago. I wasn’t surprised to hear
that he most likely has an atypical form of Alzheimer’s, one that initially affects
language but in most cases impairs memory and executive function as well. He’s scheduled for a MRI later this week and I’m
hopeful we’ll know even more. Joe still
hasn’t put the possibly of Vascular Dementia to bed, but I have.
heading to California for a visit with one of Joe’s daughters and her
family. I’m a little nervous about it,
unsure how Joe and Al will manage the travel and being outside of their normal
environment. It seems so strange even to
think about it. After all, we’ll be with
family. What could happen?
Well, if you
haven’t lived with Al before, you might have trouble grasping the scope of
adjustments that are necessary. Just
going to a restaurant means planning ahead, avoiding any place that doesn’t
take a reservation or has a complicated menu or spicy food. Then there’s the need to avoid crowded or
noisy spaces, or any place that’s too warm or too cold or has stairs. That eliminates two thirds of all the places
in the State of California.
The pace of life at our daughter’s young
family home will seem like “warp speed” to Joe, and for that manner, even me. But with all that said, we can’t wait to get
return I’ll be starting in earnest packing for our move to Oregon. I’m not concerned about getting ready. After all, I’ve had a lot of practice.
could strap Al to the luggage rack on the top of the car like they did with “Granny” in the television show, The Beverly Hillbillies.