Wednesday, May 21, 2025

Masked Faces

Cell phone pictures 
can be chronicles 
of life and death.

How often we                                                                            
"put on a face" in life. 
Smile for the camera!
We see the surprise, love,                                                                                               caring, passing of time 
on her face.

I just went through 
pictures of Mom.
In boxes & on my phone.                                                                                     Snapshots from 
the years of her life, 
our life together.

In later years 
so many pictures of Mom 
"daydreaming".

Appearing to be 
somewhere within her mind. 
With us sometimes briefly 
and sometimes deeply.

Her eye focus changed.
I see that now.
 
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.

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