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!

See the surprise, love, caring, passing of time on her face.

I just went through pictures of Mom.

In boxes & on my phone.                                                                                     Snapshots over 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 to common daily actions 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 times come without warning.

Being prepared meant survival and continuing.

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 entry was "When the Child Becomes The Mother" back on April 8, 2013. 

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 and 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 the masks we wore during COVID.)

It's often like those 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 the stretchable band around your head or ears.

It's always there sometimes slipping down or confusing others as to who you see and who you don't.

With LBD it only 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 and observations.

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 from 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 we took 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, her 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 September 2024. 

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.

Finding Four Leaf Clovers

Why did my finger stop today on one specific photo?                                               A smile was needed, it had been a rough day.                                                                 It was on a site I visit infrequently.

Was it meant to "pop up" today?                                                                                 To remind me of Mom in a special way?

I believe there's a reason;                                                                                             We don't always see when we first look. 

It takes time to absorb and understand;                                                                        the power of the past in the present for the future.

In Spring, Summer & Fall,                                                                                         Mom would walk on the sidewalk.                                                                 Suddenly, in the grass,                                                                                                   She would spot a Four Leaf Clover. 

She would bend down, carefully pick,                                                                               offer it to whoever was walking with her.    

It gives me hope, once again,                                                                                             along with the struggles and the challenges.  

There are bright and shining moments,                                                                             continuing positives surrounding our daily lives.                                     

Mom gave the gift of sharing & caring to everyone.

She didn't have to look for it.

The good luck symbol found her.                                                      

And often it wasn't just one. 

Mom always found and saw the beauty,                                                                   the love and the possibilities,                                                                                       even in the darkest moments of life.

I miss her. I miss my husband.                                                                                       The "good" memories of times past guide me today.              

We Women prefer to see the Rainbows of Life.

We weather the storms,                                                                                                       We struggle in the darkness,                                                                                              Celebrating the light emerging & shining through.

Our belief is tomorrow, if we work for today, will be better.

The photo, a "wealth of 4 leaf clovers"                                     

My Cousin's daughter has a "family gift".                                                          Reappearing generation to generation.                                                                       

Finding "joy" and "hope" beneath our feet,                                                                     on our path. . .  just look for it.

It gives hope there are bright, shining moments

Continuing positives surrounding our daily lives.

Isolation & Shelving Grows Dementia

What if some of the "problems" of Alzheimers and other forms of Dementia were discovered to be more social rather than physical?  

Cultures other than the American system of caring for the elderly have provided evidence many behaviours and actions can be managed without drugs or "shelving" people in an institution.

This includes activities both mental and physical provided in Adult Day Care Centers and Long Term Care Facilities which generally shelve or "park" people with Dementia at certain levels or stages.

Understanding which parts of the Disease are manageable and moving to ensure resources are available is critical. 

Why aren't we cross applying findings in medicine and behavioural studies to benefit Dementia patients?

Touch.  Many of our elderly go from day to day only experiencing the touch of another human being providing necessary medical procedures or daily life skill assistance.

I've seen more caring from the receptionists and cleaning/maintenance staff at Mom's SNC than I have from most of the CNA's, LPN's, the RN and the Adminisrtative Staff at the facility.

How long would a baby, infant or child survive and how greatly would they thrive if we denied this comforting human interaction?  

Remember the children adopted from foreign countries who were isolated, denied human kindness/touch? 

Speech. How often does someone sit and talk or involve more than one person in a conversation -- even if the majority of the talk is done by the "caregiver"? 

                                                                                  

Human Contact.  Visiting A Loved One. Look around, say "Hello", stop a moment to talk. Give the gift of a moment of time so valuable to those for whom time seems to be never ending between times of human contact.

Recognize the humanity of all with whom you come in contact while visiting a loved one in a facility. 

Spend a moment; give someone the greatest gift -- human interaction.

Most "interaction" at Mom's facility has a purpose -- analyzing and charting. 

If someone doesn't want to participate in the group activities at Mom's center, it's entered on a chart.

When I visit I see many people who barely get out of their rooms and who are becoming more and more "dependent". 

Some may have mental challenges but many of those seem to have "developed" with the systems and procedures used in the facility.

One dog and one cat live at Mom's facility.  The dog is older and very set in his ways. He used to take the elevator, go to various floors and "roam". Now, he lays around, has put on lots of weight and often moves away when people approach him -- or sleeps most of the time. 

The cat is "isolated" in the Activities Room so only those people who visit that room get any interaction and she, too, is a loner.

Occasionally a couple of dogs are brought in to "visit" residents and you can see the joy in the Resident's eyes and in their bodies. 

They virutally light up and wait patiently hoping the dog will be brought to see them. 

A few residents have family members who bring in dogs to visit.               

Unfortunately, these dogs often don't see anyone but their owners and I understand they're not all "trained" to accept other people.

What's needed is more frequent interaction of residents and animals.

Humans thrive using our senses. When they're deprived or eliminated, at any age, our body functions are greatly affected along with our brains. It changes our personality, our outlook, our behaviour.

Let's find more ways to give Seniors interaction with humans and pets. Let's stimulate their brains, their positive emotions and build healthier lives for all.                       

Gimme

What’s with this surging need?                                                                                 Demands the old hand over, recede.

I can stand or lean any way I choose.

At my age, not much to lose.

I sit and type and wonder why

The words come flying out of “the sky”.

Have they been hiding all along

If so I’ll use them as My Song.

Am I poised to live and learn

Will I continue to actively earn?

So many questions, far less time

Will I burn or will I shine?

Does it matter any way 

If I choose to have my say?

Like bursts of light.

Words join as if in flight.

 

Like Geese in the air

They join and create.

They fly away

To live another day.

Winter is harsh

It hides their food.

We humans see.

We’re not fools.

Each finds their own tools.

To survive and to wait. 

Knowing there is an expiration date.

While we can, we do.

When we can’t, we won’t.

Today I have the choice.

Today I raise my voice.

Megaphones can screech

Across the electronic page

Telling me I’m worthless

Just because of “age.

Then why, tell me please,

Do you want to incur

More candles each year

To blow out in a blur?

You can’t wait to age 

You see it as a “perk”

Let me tell you, my “friend” 

That’s acting like a “jerk”

Value what you have

Embrace where you are

Soon you’ll hear the shouts

Causing you to doubt

Others have been born

They demand a place

Wanting to take yours

It’s going to be your fate.

It’s a life story

Filled with doubt and worry

Stand up, speak out

It’s never too late

Spread love

Not hate

Strange how survival is seen as distress

It causes concerns and such a mess!

From what we achieved

And refuse to “secede”.