Originally posted
July 20, 2008
The first sign that things with
Mom were not as they should
be came maybe a decade ago when
she began misplacing her car keys on a regular
basis.
At first we thought it was funny and teased
her relentlessly because it was so out of
character for someone who ran our family so
efficiently. She was always a take-charge woman who
raised six children largely on her own. It's not
that Dad wasn’t around--he was--but he owned his own
business and worked long hours to support the
family. For much of my childhood he was at “the
station” seven days a week, often late into the
evening if somebody needed a tow or a car auction
was going on. His absence left most of the day to
day drudgery of raising the family to Mom.
She was always busy doing the
kinds of chores that I couldn’t begin to do in my
own life. She grew vegetables on a grand scale in a
garden that consumed much of the land beside the
house, then she harvested and preserved her bounty
for us to eat during the winter.
She canned several
different kinds of pickles, peaches, chowchow (a
relish much beloved in the South), tomatoes, pickled
beets, vegetable soup, green beans and any number of
other things, plus she cooked vast batches of the
world’s best fried corn and froze it in dinner-sized
portions that filled a large chest freezer. She made
jellies and jams and apple butter, and she and Dad
grew peanuts which she dried in the hull for snacks
or shelled them to make peanut brittle.
She
sewed clothes for us girls and herself, and made so
many quilts that they eventually filled an entire
closet before she began sending them home with us a
few years ago. She designed and made a unique
child-sized quilt for each of her first several
grandchildren, and on top of everything else did the
bookkeeping for the business and ran it when Dad had
to be away.
I can’t remember a time in my childhood
when Mom sat around reading a magazine, or of her watching television in the evenings without her hands being busy sewing or
crocheting or writing a letter to some far away
relative in her handwriting with its big loops and
perfect spacing.
I distinctly recall the
moment
I realized that misplacing her car keys was more
than just a funny new habit she’d developed. She
called my middle brother who lives in the house
beside her late one night and insisted he come right
away to help her find her keys. She had spent the
previous several hours searching her house from top
to bottom and by the time she phoned Roger for help
she was in a state of panic. He eventually found her
keys in the freezer.
The
next symptom of the disease that had begun to take
her away from us was when she began to tell the
same stories over and again. At first she’d repeat
something she had told me in a phone call the week
before, but a decade ago she’d catch herself
mid-story and ask if she already told me whatever it
was she was telling me. Nowadays she is often caught
in an endless loop as she comes to the end of a
story and immediately starts back at the beginning,
telling it over and again until we manage to divert
her attention onto something else.
Over the years many other pieces
of my mother’s sharp mind have slipped into
a dark
cave from which they will never emerge. The woman
who used to manage her finances with precision and
efficiency asked her youngest son to take over the
task of her checkbook after she received a
cancellation notice on her car insurance because it
had not been paid.
The fearless traveler who was
always the driver of choice when she and her lady
friends attended family reunions in distant places
one day asked us to disable her car so she couldn’t
go for a drive some day and possibly forget how to
find her way home.
She returned to me the stash of
her favorite peach scented candles that I kept
her supplied with because she was afraid she would
forget to blow them out when she went to bed and
might possibly burn her house down.
And the woman
who had always taken great pride in her kitchen
skills as she prepared vast home cooked feasts for
the endless crowds who were always at our
house—whether it was our school friends after a game or our many relatives—no longer cooks
anything other than her breakfast of toast and
coffee because she forgets to turn off the burners.
Her meals are now
delivered to her by her children
who must beg and cajole her to please eat just a
little because she no longer feels hunger or thirst.
There have been many agonizing
moments as we’ve watched Mom’s mind slip away but I
think my oldest brother might have witnessed one of
the most heartbreaking.
Early in her illness she
still had awareness of what her mind had been like before
the disease and she knew she no longer thought or
spoke in the same way she used to. One night the reality of what she
had already lost and the realization of the terrible
fate that awaited her came crashing in on her with
brutal clarity. She wept with all of her being, her
tiny shoulders shaking with gut-wrenching sobs as
she grieved for everything she had already lost and
was still to lose, and she faced the unfaceable
truth that her life of independence and dignity was
over forever. Her grief that night was so profound
and so deep that it could only be subdued by
sedatives administered at a hospital emergency room.
Today the person who looks like
Mom is not really our Mom. She’s a 100 pound bundle
of contradictions who, in the blink of an eye, can
go from sweet child
to hardened adult, from cheerful
to bitterly angry, calm to frustrated, gracious to
unbearably rude. Many of the stories she tells these
days are no longer
accurate because her mind has cobbled together the details of
events that happened decades apart to form a single
memory that bears little resemblance to real events.
New memories are rarely possible
since she forgets what happened as soon as it has
happened. In telephone calls she complains that my
sister never comes to see her, although many times
I’ve just hung up from talking to my sister as she
drives home after visiting Mom.
She will insist--demand!--that my
siblings take some item or another from her house
to theirs, then later will be
absolutely certain it was stolen or removed
without her permission. And when the item is
returned, she complains it was because my sibling didn’t want it cluttering up
their house and will insist that it be removed at
once (at one point my youngest brother had
transported a particular white sofa back and forth so many
times that we teased him about putting wheels on
it).
Some of the greatest challenges for us come in
trying to find humor in dark situations and learning
to bend reality to fit the version of reality that
exists inside Mom’s mind at any given moment.
And
all of us struggle mightily in digging ever deeper
to find the patience required to cope with the
constant twists and turns.
It
is indescribably frustrating to listen to Mom
express hurt or unhappiness over someone's
unkindness to her when we know the event that is so
upsetting never really happened. But we no longer
have the ability to correct for any length of time
her flawed and corrupted memories, so all we can do
is listen and sympathize as best we can and try to
get her mind on something else.
For me, when I think about Mom and
Alzheimer’s disease the greatest emotion is not
sadness but anger. I am angry because all the things
I never got around to telling her can now never be
told or truly comprehended, and questions I never
got around to asking her will never be answered.
What was her recipe for that fabulous vegetable soup
I’ve never been able to duplicate? How did Dad
propose to her? Was she scared when Dad went away to
fight the war and she was back home with a house
full of young children?
I’ll never know the answers to
those or an endless list of other questions, yet she
is right there in front of me--she still looks like
Mom and sounds like Mom but she isn't really Mom.
I get especially angry to think of
the 20 year old beauty with the deep blue eyes who
married the young milk pasteurizer from Marbledale
and grew up to be a strong, fiercely independent
woman who could shoot a gun with legendary accuracy,
change her own flat tire, and bake a killer
blackberry cobbler while balancing the books and
raising six kids...only to be methodically taken
from us one brain cell at a time by this vicious
bastard of a disease. That makes me really, really
angry.
The only comfort is that Mom no
longer truly remembers what she was like before the
disease took control of her mind. She can no longer
see herself in any context beyond what exists at
this very moment in her tiny universe comprised of
her own house and garden. She would be utterly
mortified and inconsolable if she could see anything
more than that.
I’m not sure why I wanted to post
this story tonight. I know it is a far cry from the
normal silly stuff I talk about here but for some
reason tonight seemed to be the night to talk about
Mom.
