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.
Mom always tried to open packages with great care. trying to "keep the paper intact to use again".
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.
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.
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.
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.
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.
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 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.
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.
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.
