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, April 10, 2016
ALZHEIMER'S: LOOKING FOR THE EXIT RAMP
years ago Joe and I were traveling from Oregon to California on a route that
skirted around one side of Los Angeles and on toward the Coachella Valley. This was by far my preferred route, avoiding as
much LA traffic as possible and thereby saving my sanity. We were making good time when our navigation
system notified us it was time to make a right turn at the next exit. Having just driven nearly 900 miles without
missing a beat following its directions, I did as directed and exited right, even
though my instinct told me the system was wrong.
driven but a few blocks when I realized my mistake. The system had dumped us in the middle of
L.A.’s China Town. Thinking there must
be a freeway entrance nearby we continued to drive while we waited for the
navigation system to catch up, recalculate our route, and get us back on the
freeway. It didn’t. Nearly an hour later (and after several loud
exchanges between me, the driver, and Joe, the navigator) we finally stumbled upon
a freeway entrance and were on our way once again, nerves somewhat shattered.
It’s so easy
to rely on the experts and trust
their direction above your own instincts. I couldn’t count the times I’ve said to
myself, “Why didn’t I just do what my instincts were telling me?”
we need both instinct and reason to make the best possible decisions, but I’m
often uncomfortable with the idea of using instinct as a guidance tool. Maybe it’s cultural but when I follow a
“hunch”, which I often do, I’m reluctant to admit it.
Just after Joe’s
first appointment with a neurologist after his MRI showed very early signs of
brain shrinkage, the doctor concluded Joe’s cognitive issues were likely early stage
Alzheimer’s disease. Of course we were
both in shock, unable to listen too much beyond the word “Alzheimer’s”.
I recall the
Neurologist saying something about other tests that could be done, a PET scan
or something, but that there was no single test that could conclusively show a person
had Alzheimer’s (other than an autopsy, which Joe and I both thought was a bad
idea). The scan might cost four or five
thousand dollars and would not be covered by insurance so, we took the doctor’s
recommendation and didn’t do the test.
End of story.
Well, not quite.
last two and a half years, I’ve read just about everything I can regarding
Alzheimer’s and its diagnosis. I’ve
discovered that once a doctor charts a likely diagnosis of Alzheimer’s and the
drugs are prescribed, the testing basically stops. At that point you can call it Alzheimer’s or
you can just stick with dementia, your choice.
Most would say it really doesn’t matter because the prognosis is
basically the same.
Joe had a feeling (an instinctive feeling) that what he had was Vascular Dementia
(not Alzheimer’s) which is basically damage to the brain’s blood vessels that reduces
their ability to supply the nutrition and oxygen required to perform thought
processes. He’s said this to me many
times. And, based on the fact that he’s
a diabetic with a history of high blood pressure and heart disease, he could be
right. His instincts could be just as
valid as what little factual information we have.
sound like “six of one or half a dozen of the other”. But if it were Vascular Dementia, there might
be a more appropriate treatment than what Joe is currently prescribed.
month we’re seeing a new doctor at an Imaging and Neurosciences Center near us.
I’m hoping he will again address the
break my heart if we had to say good bye to Al.
But the fact is, we’d only be saying hello to another villain. I’d have to come up with another name, maybe “Vassy”
because I couldn’t just use the initials for Vascular Dementia, or “VD”.
rather be looking for the exit ramp that could get us off the dementia freeway
Don’t it always seem to go
That you don’t know what you’ve got
‘Til it’s gone
They paved paradise
And put up a parking lot.
Taxi”, Joni Mitchell, 1970
Joe’s daughter Juli came for a visit.
What a shot in the arm. Being
with her and hearing about all the grandkids and their busy lives serves to
remind us that we’re part of something larger than our selves. We’re a multi-generational tribe, and there
is indigenous strength to be drawn from each other.