Her facial expressions lessened.
Smiling, reacting, common reactions
faded slowly -- at first.
After her last birthday,
we noticed she was losing the ability to remember
common actions.
She didn't understand
how to take the wrapping paper
off a present and couldn't open
the untaped box with new clothes.
Mom always tried to
open packages with great care. trying to "keep the paper intact --
to use again".
Valuing, knowing the end of time
comes without warning.
Being prepared meant survival.
A child of very little means growing up.
A young woman during the Depression.
She taught us to "use it up, repair it,
make do or do without".
Lessons for survival
providing more
than we'd ever expected.
I remember her ability to communicate
and even seem to be cognizant
to one degree or another
up until about two weeks
prior to her passing.
No one prepares you
for this major capability change.
My first blog entry was
As I re-read this and other entries
I know the time has passed.
It just doesn't seem possible
it's more than a decade.
I had no idea then it would be
less than a year after that date
Mom would leave this life.
Looking back,
reversing roles
started long before that date;
many adjustments
to ensure her safety,
her personal well being.
Subtle messages
of what was to come.
Trying to survive, work,
visit her every day,
we didn't clearly see
what was happening
before our eyes.
Life moves
in multiple directions
all at one time.
LBD is a MASK
like those worn for
Carnival or Halloween.
(Today, I can also reference
masks we wore during COVID.)
Face coverings with a stick
someone puts in front of their face
meant to hold it in place
or it can be removed to see
the "real" person underneath.
Later, it appears to be
the kind that are put on
and have a ribbon
to tie in the back
you can lossen
to drop down or remove.
As time passes,
the MASK becomes
the type with a stretchy band
around your head or ears.
It's always there
sometimes slipping down
or confusing others,
who you see & who you don't.
With LBD it goes
down the front of your face
and remains around your neck.
Then, the MASK changes completely
and it's painted on the face;
always there, always prominent.
We had no roadmap to guide us,
no specifics as to this disease's
progression in behaviours.
We were constantly guessing
as to what to do, how to act.
We had decisions to make
to ensure we provided for
and protected Mom --
from herself and often f
rom the acts of others
who simply did not care
to find out about Dementia.
And, because no one
ever counseled us or
provided any information
about Dementia,
we wandered through this time
as though in a fog
looking for the Sun and a little light.
We took pictures and videos.
At the time, many, to try to
understand and explain to my son,
who couldn't be with us,
his Grandmother's actions
and behaviors on any given day.
Often, especially in the beginning
of her "last" months, she had the ability to talk
and "fake" responses through common
comments and even through appropriate
responses (son: Love you Grandma! Mom: Love you, too!) caused him to still question his grandmother's deteriorating health and the effects of the LBD.)
We took pictures to chronicle the numerous challenges we faced with Mom's Skilled Nursing Facility.
Highly recommend anyone with a loved one in a facility take advantage of the ability to chronicle/document what few people see, hear about, or realize.
Lewy Body Dementia doesn't just place masks on those whose bodies it invades, it puts masks on SNC staff and everyone who attends the men and women who live there.
(The above was originally written March 14, 2014)
Very little has changed and this is January, 2025.
Darkness surrounds Dementia of all types.
I continue my journey shining light as I go.
Attending conferences, meetings online and in person.
I want to raise funding. My pockets are not deep.
Advocating, Raising Awareness.
Encouraging others to seek counsel.
Support their walk with loved ones
Pointing the way to resources I share.
Amazed these words are being seen around the world.
Realizing we share concern for one another.
Grateful to see I am not alone and my words can give hope to others as I continue this journey I feel I've been given for a reason and a purpose.
