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.
Saturday, June 6, 2015
ALZHEIMER'S--THE BIG TRIP
Joe on the Deschutes River 2015
We’ve just passed
the halfway mark of our trip to Bend, Oregon.
It’s been different than other trips Joe and I have made together, certainly
more low-key and subdued, but well worth it; especially considering the
momentous family events we’ve been able to be part of. After all, when would you expect to witness
the marriage of a grandson and the birth of a new family member all in the same
saying that our other trips were perfect. I remember two years ago, we stopped
for our first gas fill up and somehow managed to pull away from the gas pump
with the nozzle still in the tank.
Fortunately the nozzle came out of our tank without ripping it off of the
pump and setting the whole place on fire.
Then there was
the trip where Joe stepped out of a roadside convenience store and into the
wrong car. Somewhere there is a guy who still tells the story about the older
gentlemen who got into the passenger side of his car, looked at him and said, “Where’s
Jane, and what are you doing in our car?”
that happened this year. Well, at least not
so far. But we were in for a few surprises
once we arrived in Bend.
I’m going to
give you some well researched advice. Do
not judge a vacation rental house by its pictures or the adjective-rich
description you find on the web. Pictures
lie. They do not show you the true condition nor state of accommodations you
may be about to experience. Words like “authentic”
may really mean “old” or “dilapidated”, while “luxurious” might mean the writer
couldn’t spell “austere”. The house we’ve
rented is not a “vacationer’s dream” as it was purported, unless you’ve been
doing time in a correctional institution.
not the real problem. What’s causing us real difficulty are the steps
and transitions that are everywhere, things to trip on, places to stumble over and
fall. For Joe, it’s like walking through
a minefield, with something to avoid around every corner. The lesson for me here is to ask questions—“Are
there steps and how many? Have you botched
remodeling changes that make the floors uneven or safe only if you crawl across
them? Or more simply, is the house
recently, I hadn’t thought of Joe as being physically handicapped. Oh, there are clearly limits in his ability to
walk more than a short distance and maintaining his balance is harder, but
handicapped? I’ve come to understand that with Al (Mr.
Trip-him-up) in the picture, there are just more physical issues to overcome. When Joe and I walk together now I instinctively
scan our environment for potential problems.
I probably say “watch your step” thirty or forty times a day (much to
along a transport chair (a lesser version of a wheelchair) with the notion that
Joe could push the chair and walk, then I could push him in the chair when he
needed a rest. I soon discovered that
it’s tough for someone my size to push 185 lbs.
It’s one thing to manage it on a
level shopping mall floor, a whole other thing on cobblestone paths.
heading down a walking path by the beautiful, scenic Deschutes River, I’m
pushing Joe in the chair and feeling less than in control. We come to a narrow and
sloped spot in the path, very close to the water’s edge. I attempt to stop but Joe wants to go
on. I suddenly remember a scene from one of the old Marx Brothers movies,
where Harpo is in a wheelchair picking up speed rolling down a hillside,
heading straight for a lake with his nurse screaming and running along behind.
I casually point
out to Joe that it’s about time we were heading back and somehow I manage to get
us turned around. The potential crisis
is avoided and we do not become part of the evening news broadcast, but it was
morning, we awoke knowing that we would be getting a phone call, either to
report the birth of our new great-nephew or to tell us that he was still en
route. (His mother had gone to the
hospital the night before.) Either way, we had good reason to get up and get
the day started.
about the time our morning coffee was brewed, the call came that the little
bundle had arrived.
Joe holding the little bundle
something about being with the younger generations of our family that helps put
all of the other Al stuff in perspective. Yesterday was not about aging, memory loss,
or any of our daily struggles. It was about seven pounds, ten ounces of new life
and the softest little toes on earth.
what happens, our family will thrive and survive. That’s just the way it is. Sooner or later, we all take the Big Trip, no