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.

Three Deaths; Three Restarts; A Family Unit Survives Outside Challenges

When my husband passed, I felt like I was living in a form of gelatin. The world around me seemed to be there but it seemed to be varying in consistency and moving ever so slightly in varying directions over which I had no control.
 


I felt like I was functioning at the time. I moved forward but I always felt like I was leaning backwards in time and space or at least living on a slant. To all appearances, I was "moving on"; making decisions, taking actions and even showing some "progress" into a new life forever changed through circumstances beyond all of our controls.




Grief, I believe, isn't definable by someone's deciding there are stages or types and everyone goes through them. For me, grief has been a constant battle as it was so many times in my life to survive, thrive and manage odds and situations beyond my control. Times on my journey I would not choose and did not want but also could not avoid.


Personally, I didn't want to join or attend a group dedicated to grief understanding and/or recovery. Not for me. Also not interested in a group for survivors of anything including the death of a spouse.


Possibly because I had support and gave support living each day with a family member who walked the same path, lived the same journey and understood enough to be both supportive and needing support. We reached out but not to join others in the same circumstances.


Instead, we reached out to find out, to be there for those who remained and those who needed us and who we also needed.


Right or wrong, we've travelled the distance. Surviving outside influences and actions that could have destroyed who we were, believed we could be and wanted to be.


Looking back -- always easier than looking forward -- what we chose to do, what I chose to do, may not have been agreeable to others and they might have seen our choices as unrealistic and even pushing us farther down in life.


Not so. We chose to keep our home despite it taking every penny we could find through making choices to sell items we felt would provide for that need. Oldest son isn't speaking to me and has withdrawn all contact with his family including his children. That's his choice. He's always had challenges and in my opinion finds faults, real and adjusted viewpoints, to mask his challenge of dealing with his own life decisions and actions.


Our home gives me solace. Even with its mounting challenges in making mortgage payments and holding life together. I've been able to get jobs and so has my daughter. We've taken whatever we could to hold our life together. And, that is the focus for the two of us -- our life together. We make the decisions, together.


Many cannot understand this choice. Many her age are torn apart by the media who call them "boomerang kids" -- those who return "to the nest" to live with their parents.


We just never stopped living together in our family unit that once included her grandmother, her father, her mother and her.


I had a conversation recently with a young man where I work who's chosen to return to live with his parents for another personal family reason. He has a job; he could make it on his own; instead, he chose to provide support when it was needed by his presence and abilities greatly needed by his family.


In my mind, that's a sign of personal courage and integrity not to turn away and go on with your life but to see the need in others lives; a definition of family in the past and for the future.


That was what my Mom did all her life and even though she never really talked about all she did for family members well before I was born, I saw through her actions and heard in her words during our trying life times how important our family unit and her family remained to her.


A legacy my mother gave me: 
                 Look outside yourself and live and give to others.


Death chose how to redefine our living arrangements; it was not a choice we would have made. A family of four (plus one amazing family pet, our cat) now down to simply two. I have faith, though, this change will continue and as time moves forward we will regrow through a new addition of a like minded person who will add greatly to daughter's life and my own.


Decades of making choices including others best interests while allowing them to come and go, leave or stay and always freedom within the unit of the family others seem to have difficulty understanding. That's the basis of many "Gen X'ers" lives we seem not to want to see. These are the nonselfcentered, nonselfserving young men and women of a new generation.


Get real, media!  See the positive effects of a society that has an inner strength in supporting the family unit in ways those who travelled life's difficult roads have done. Families come in all shapes, sizes and types as we're told.


Start accepting the differences in lifestyles chosen by those who "return to the nest" and give them the support and positive recognition they deserve!