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  

"When the Child Becomes The Mother" 

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.

LBD Social Signs

"Hindsight is better than foresight" is never more true than for caregiver's, family, friends of loved ones with Dementia.

Current studies cite the appearance of specific behaviours as being the "keys" to diagnosing Dementia.

Many forms cannot be specifically cited or identified until there's a post mortem examination of the brain.

It doesn't matter if someone has Alzheimer's, Lewy Body, Frontal Temporal or others, they have Dementia.

We need to recognize Dementia as the next big life challenge.

It's fatal, physically and emotionally draining.

It's destructive and stops life as we know it,

General articles and reports often become focused on the decline of mental processing citing bodily functions including standing, walking, incontinence as type or stage of the disease.

Are these really effective measures of Dementia's progression? 

Are we simply focusing on those areas we consider "more important" and use to determine the "level" of the progression and level of caregiving?

When are we going to recognize Dementia, especially Lewy Body Dementia, doesn't appear like Cancer often does with a lump you can feel or Heart Disease with a stroke? 

Lewy Body Dementia often masquarades.  As I wrote in the blog entry: Masks: Ever Changing Faces of Lewy Body Dementia , LBD is not always visible. 

People with LBD, in the beginning stages, seem to be capable of adjusting their minds, are "socially conscious", even far into progression of the disease.

They may laugh about "what they've just said", mix and match information that seems to go together to the "untrained" and "unfamiliar with the subject" ear and eye. 

Another observation I've had with Mom is how vacillating Lewy Body Dementia really is; behaviors were so unpredictable. 

It amazed me how caregivers at Mom's facility and especially the floor nurse, an LPN, believed we could affect her behavior or we could change it or Mom could choose to change it.

Unfortunately, these are all false beliefs about a real, medical condition that like Diabetes, Heart Disease or Cancer, cannot be controlled or adjusted through "willpower" or "determination".

The other night at a presentation, the message was conveyed by a gentleman about his wife and how she could somehow, if she just tried, control or affect actions like sitting up in her chair. 

It was HIS wants and needs for her to be who she's always been, not who she was becoming.

After a long period of time and a good day, when for some reason her brain neural pathways had shifted, changed or somehow let a message "slip through", my Mom might make that movement or give that response.

We, too, desperately wanted Mom to be the person we knew, we lived with, to be there, to have the ability to "return" to the person we felt comfortable around and with.

Like a trained animal, we reward the Advanced Dementia patient who shows us they "can" do something, hear something correctly, respond correctly, with a smile, words of encouragement and even with statements like "I knew you could do it if you tried hard enough".  

How grateful I am now realizing that with enough advancement of the Dementia this level of self satisfaction on the part of the visitor, the family member, may not truly register with the person struggling with Dementia.

Then, there is the other belief, and one popular today, about "the right medicine" controlling and eliminating "the disease".

You see, we're far more accepting of something we "catch" changing someone's life than we are when there is a "loss" of what is perceived to be the "self' of the individual which many believe should be able to be "personally controlled".

It may be more like eradicating Cancer. 

Controlled to some degree, possibly, perhaps, but the ability to eradicate may be more challenging or accomplished with some form of discovery that shifts development and progression.

We may find the causes of some Dementias and be able to change behaviors (smoking) or where you live (not close to where chemicals have been dumped) and therefore not get a specific Dementia (Cancer).

Unless someone determines there is one specific cause for Cancer -- possibly a genetic tendency or even lack of certain configurations/compositions -- Dementia, like Cancer, in my opinion, will be with us for many years to come.

Dementia may be seen as being prevalent in the very elderly but each passing day we're discovering, as we grow from an infant to a toddler, through adolescence and into adulthood, the vast frontier of the brain and how it is the center of the individual human universe remains an ongoing challenge.

Just recently, some have started  classifying other brain diseases, Muscular Dystrophy and Parkinson's for example, into the area of Dementias. They affect the brain and that is where Dementia works so the theory is they're related  or even one and the same.

Let's have a movement within society to be as health wary about Dementia as we are about Cancer and heart disease that affect human relationships and lifestyles.

Let's open the discussion, bring into the light, show the world we see, hear and most of all support those who are challenged with and from Dementia including the individuals and their care givers whether family or other.

YOU have the power to facilitate a change. 

Start a conversation. Volunteer to visit LTC's.

YOU hold the future in your hands.

It's your future or at least the future of someone you love.