The Preservation of Dignity

Mom is no different than any other dementia patient desperately trying to hang on to her self-worth and relevance.  It’s difficult and sad to watch other family members or spouses correct their loved one’s “story,” roll their eyes, make fun, or wave them off saying, “Pay no mind, they haven’t a clue what they’re talking about…”

I’m ashamed to admit I used to correct and dismiss some of the things Mom said, or did, before I even knew this was a diagnosed ailment.  I didn’t understand what was going on with her. I was scared and trying to control an uncontrollable situation.  “Truth” was all-important to me all the time. 

I thought my corrections could sweep all that was wrong with Mom into a dustpan, be hidden and disposed of before anyone could see the “truth,” myself included.  Looking back, I wonder what it was I was trying to protect?  My inability to cope with this disease and all that comes with it, or Mom’s inability?

I learned pretty quickly that I should never assume anything about this disease and how it affects a person personally. 

Secondly, I should never assume anything about this disease and how it affects a person personally. 

If other family members would pay attention to how their loved ones with this disease respond to any dismissive comment, they would see their body-language deflate as quickly as a popped balloon in their heartbroken expression.

ALS is another disease that doesn’t allow a person to respond “normally,” but their ability to take in information is fine.  They can understand everything and then some. Can you imagine dismissing Stephen Hawking’s ideas and intelligence because of his appearance and the way he responds?  He is one of our times greatest thinkers – that would be as absurd as dismissing Nikola Tesla, Freud, Jung, Einstein, or "Sparky," also known as Charles Schultz, who was dismissed his entire life until he created "Peanuts."

The point is, we just don’t know how a diseased, or compromised brain, truly responds or interprets information from the world much less from us as caregivers.  A dismissal of any kind (no matter the circumstance) “nothing-izes” a person, and, in my book, is inexcusable.  Don’t let our own integrity or pride, circle the drain because of assumption.

Whether what is being said by our afflicted loved one is false or not, who the hell cares? 

What difference does it make 98% of the time?  (The only caveat is if we are dealing with a legal or financial matter.  In those circumstances, a Power of Attorney, or an advocate, is perhaps necessary). 

My experience with Mom has proven there is no more important act than showing kindness and respect to an individual in the throes of dementia, or any disability, whether they are conscious of their environment and have control of it (mentally or physically) or not.

I believe it is my integrity on the line, not theirs, in how I care and respond.  My integrity.

Truly, how we walk with the broken speaks louder than how we sit with the great.

What Is True For Me:   Preserve their integrity by respecting and honoring them.  Remember that their mind and bodies are broken, and most likely, their hearts are broken too.