Friday, March 14, 2014

Masks: Ever Changing Faces of Lewy Body Dementia

Cell phones are chronicles of life and for our journey with LBD, of death.  

How often we "put on a face" in life --- smile for the camera, see the surprise on someone's face, the love, the caring, the passing of time.

I just went through pictures of Mom on my phone with snapshots over the past year of her life. So many pictures of Mom "daydreaming"; with us, but appearing to be somewhere within her mind, sometimes briefly and sometimes deeply.

Her eye focus changed; I can see that now. Her facial expressions lessened; smiling and reacting to common daily actions faded, slowly at first and then after her last birthday, it was becoming evident she was losing the ability to remember common actions (she didn't understand how to take the wrapping paper off a present and then couldn't open the untaped box that held some new clothes).

Funny how you recall small memories: how Mom always tried to open packages with great care trying to "keep the paper intact to use again". A child of very little growing up and a young woman during the Depression, she taught us all how to "use it up, repair it, make do or do without"; lessons we found provided more in life 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 that.

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

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 with 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 still didn't clearly see what was happening before our eyes.

LBD is a MASK like those worn during Carnival or Halloween.

It's often like those worn that have a stick someone puts in front of their face and then can remove it and you see the "real" person underneath.

Then it appears to be the kind that are put on and have a ribbon to tie in the back and you can remove or someone can help you remove it.

As time passes, the MASK becomes the type with the stretchable band around your head and it can be taken down part way or completely but with LBD it only goes down the front of your face and remains around the neck.

Then, the MASK changes completely and it's painted on the face; always there, always prominent.

Because 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, 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 Lewy Body Dementia.

We took pictures and we took videos. At the time many were to understand and explain to my son, who couldn't be with us, how his Grandmother's actions and behaviours were 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 also 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 this ability to chronicle and document what few people see, hear about or realize is happening. 

Even the most challenging situations can come and go and if you're fortunate enough to witness something, protect our Senior population by realizing this is one of the few ways we have to ensure and protect those we love.

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.

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