NOTE: Commentary is made as a private citizen and not as Regional Coordinator for Silent No More or Leader of Rachel's Hope, unless otherwise stated.

Saturday, June 21, 2014

The Light Switch Called Dementia

 I've been missing my mom more than usual this week and reflecting on what my dad and I experienced as she declined.   As most of you know, my beloved mother passed away in February. Not only did she suffer from cancer, she had dementia.  While the cancer was eating away at her body, the dementia was doing the same to her mind. Seeing that beautiful, vibrant, woman waste away physically was devastating, but the added emotional turmoil of dementia made it practically unbearable.

As both diseases progressed, I retired from my job to help my dad with her care.  We knew what to expect with the cancer; however, the dementia was not as predictable.  There was joy, laughter and lots of love -- switching to anger, paranoia and extreme confusion. Her mental state would vacillate from one day to the next and sometimes, one minute to the next.

We were in constant contact with her doctor and hospice, and although they offered wonderful advice, the one statement they kept repeating was, "do not take what she says or does personally."  Well, that sounds easy enough, but when it's your loved one who uncharacteristically lashes out, physically and/or verbally, or worse, runs away, it's hard not to. During those episodes, we found ourselves a muddled mass of bewilderment, despair, hurt, anger, resentment …  You name it, we felt it.   Although we mentally realized this wasn't mom but the dementia  … convincing our hearts was a different story.  If there was one ray of light in those dark times, it was she didn't remember the outbursts; otherwise she would have been mortified and inconsolable.

Dementia is unrelenting and cruel and can take an emotional and physical toll on everyone involved. If it weren't for the resources made available to us, the love and support of family and friends, and most importantly our faith in God, we would still be picking up the pieces.

I really don't know why I was compelled to write this, maybe someone out in the blogosphere needs to see they are not alone, or maybe I'm reaching a new stage in the grief process. What I do know is, that even though dementia made some days more difficult than others, they were all days spent with an incredible and beautiful woman I loved so very much, and for me, that's all that matters.



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