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, March 13, 2016
ALZHEIMER'S: THE ART OF CAREGIVING
One of my Brussels inspired pieces 2002
As an Artist
I know that inspiration comes from many directions and sometimes when you least
Years ago, a
good friend and I took a train from London to Brussels for a quick weekend
excursion. Up until then, all I really
knew about Belgium was that it was smack-dab in the middle of Europe and was
famous for beer, waffles and some of the finest chocolate you could buy. But what I found, and should have known, was
that Brussels has a strong cultural heartbeat with unforgettable art and
We checked in
to a hotel near the Grand Place, the most memorable landmark in Brussels. While I waited for my friend to come down
from her room I strolled through the hotel’s lobby, and that’s when it
happened. I turned a corner to find
myself in front of a long (and I mean long) black granite wall. (It must have been 10 feet high and 30 feet long,
all granite.) In the center of the wall
was a sculpture; a monumental assemblage of wood pieces, objects that individually
might be recognized for their simple utility, but collaged together became a
fabulous, spellbinding piece of art.
I’m not sure
how long I stood speechless in front of the sculpture, but it was long enough
that people began to notice. Someone from
the hotel staff asked if I was alright.
Of course, I wasn’t. I had just
been entranced, hypnotized by this piece of art.
friend arrived I babbled and stared at the wall, trying to explain how it affected
me. My friend managed to pull me back
and we sat down while I tried to compose myself. I didn’t want to leave, I wanted to remember
everything about the piece, which of course was impossible. I couldn’t wait to get back to my little
studio and experiment with this style of sculpture.
That year I
created several like sculptures, one so large it required reinforcement of the
wall prior to its mounting.
back to the days I spent gathering objects, hammering, sawing, painting and
arranging them into art (which I enjoyed far more than anyone else seemed to
appreciate the final results), it got me thinking about how similar that process
was to what it takes to create an exacting care environment for someone with
before that being a good Alzheimer’s caregiver isn’t just a job, it’s an
art. It requires much of the same
dedication, resourcefulness, execution, and persistence that it takes to create
art. By that I mean just like the
collage of the sculptor, there are little bits of this and pieces of that, trial
and error in finding things that fit, and skill in applying them and knowing
when you’ve gotten it right. You can’t overthink it, or spend too much time
worrying about what you should have done.
Because the next day when you start again, things will look and feel
different and you’ll pick up the process at whatever point feels right.
that I have a mind that allows me to create. I’m proud that I can feel empathy and have
compassion. And I’m happy to say that I continue
to find inspiration to help us along our Alzheimer’s journey.
inspiration came in two forms.
was in the form of a national loss.
Nancy Reagan passed at the age of 94.
For ten long years, she provided unwavering love and devoted care for
her dear “Ronnie” through what she called, “the long goodbye”. She was a powerful advocate for Alzheimer’s
research and remained, inspiringly, “First Lady of the Fight” to the end.
inspiration was from a book titled, Somebody
Stole My Iron, by Vicki Tapia.Written
from the perspective of the caregiver, it is an account of the author’s personal
journey caring for her mother and father as they descend into the sometimes
bizarre world of dementia. Poignant and tearfully
humorous, Tapia captures their story with hope and courage while offering well
experienced words of advice. A good
So, I’m fueled
up for the next several weeks which should get us through Spring Training and
tax season. It may not however, be
enough of a stimulus to get me ready for swim suit season. Maybe there shouldn’t be a swim suit season
when you ‘re 67. Oh, well.