The Unnecessary Embarrassment of Dementia

This post is the most recent article  submitted to our community newspaper for my monthly caregiving column.  It is based on the January 19 blog post here at God, Mom, Alzheimer's, and Me; but I thought it worth re-posting because it contains a few additional points.  And, I have to admit that I spend more time editing the column than I do the typical blog post.  It is a bit more polished.  Hope you find some encouragement here today.  Blessings, Linda

Most of us remember feeling embarrassed by a parent during our teenage years.  One of the times it happened to me occurred the summer I was 13.  My best friend arrived at my house unannounced, and my father answered the door wearing what we used to call Bermuda shorts.  My excessive humiliation seems laughable now; how silly to be so embarrassed by the fact that my father had legs.  Even worse than the embarrassment itself was the horrific guilt over feeling ashamed of my father. 

When a loved one is stricken with Alzheimer's disease, there can be a similar sense of guilt-producing shame on the part of the caregiver.  Most caregivers attempt to "cover" for their loved ones who have dementia, and a few take it so far as to avoid an official diagnosis.  This can't go on indefinitely, because untreated Alzheimer's disease tends to progress in ways that become hard to hide.   

When dementia strikes, the patient may no longer respond appropriately in social situations because behavior characteristics that might accurately be labeled “sinful” can no longer be hidden.  Since there are no perfect people, this is a universal problem.    

I love my mother fiercely and protectively.  I remember her as she was pre-dementia, when she was my closest confidante, my number one admirer, and the person who could be depended upon to pray for me any hour of the day or night.  When I look in the mirror I am blessed to see a strong resemblance to my mother. I love her so much that when she is gone from me, the ways that I resemble her physically will be a comfort to me; a way that she will remain with me for all of my life.  I am determinedly glad for all the ways I am like my mother. 

Occasionally, someone will respond to Mom’s dementia related behaviors with disapproval or misplaced humor.  When this happens I always wish I could stage a showing of a home movie of my mother as she was 25 years ago.  The person who responded negatively to her would be forced to admit that my mother was admirable back then, and that behind the facade of dementia and old age, she is admirable still.

I guard my mother carefully and sometimes keep her separated from social interactions in order to protect her.  However, just as I once felt humiliation over my father’s choice of summer attire, I now sometimes experience a sense of unnecessary shame concerning my mother.  There are times when it is good and right for me to shield my mother from situations that I know might trigger a negative response, but at other times, I am guilty of being overprotective.  My hope for myself and for other caregivers is that we can release the sense of misplaced responsibility that causes us to attempt to control how our care recipients are perceived by others.  There is nothing shameful about being afflicted with Alzheimer’s disease.