As World Alzheimer’s Month 2016 #WAM2016 or Dementia Awareness Month 2016 #DAM2016 as many would prefer it was called progresses, we continue our #RememberMe stories of members and others living with dementia.
A few moths ago, a very active advocate in the USA and also a DAI member (amongst many other things), Brian Le Blanc, also known as The ALZ Guy @TheBrianLeBlanc on Twitter, gave us permission to share some of his writings about living with dementia, and today, we are sharing his insightful piece of how dementia looks to others when we are in a public space, and how that might be totally different to what our closest family such as a care partner might see. Thank you Brian.
You can read an excerpt from his blog here…
“In 1996, Barbra Streisand directed and starred in the movie, “The Mirror Has Two Faces.” Streisand plays a homely-looking, Columbia University English Professor with low self esteem issues, who, through a personal ad placed by her sister, meets Jeff Bridges , a Columbia University leading figure in the Math Dept. They agree to marry based upon what they describe as a “palsy-walsy pseudo-marriage.” They see each other, as well as themselves, being not who they really are but seeing themselves only on the surface.
At this point, you may be asking yourself, “What does Alzheimer’s have to do with a Barbra Streisand movie? Well, other than the title of the movie, it has to do with the perception of how we see ourselves and how others see us. This brought to mind what I wanted to write about. Confused? Great! Welcome to my world.
Maybe this will help:
More than several months ago, at least I think it was, Shannon (my beautiful, understanding, loving wife) and I were returning home after a presentation I gave to a local Rotary Club. I always ask her how things went for I know she will be honest with me. This time, instead of giving me an answer, she started to cry. (I must tell you that due to the fact that Alzheimer’s has already begun its destruction of my short-term memory, I don’t remember many things, however, I do remember this.)
I asked her what was wrong and this is what she told me.
“You stand up there looking all polished and professional, reading from your prepared speech, smiling, cracking jokes, basically being the man I fell in love with, the man I married, the man I terribly miss.
They, your audience, don’t see who you are when you are away from the spotlight.
They don’t see the confusion, the anger, the anxiousness.
They don’t see the man who can’t remember how to do the simplest of chores.
They don’t see the man who has a reminder on his phone to eat and to take a bath.
They don’t see the man who can’t remember something he was told 5-10 minutes ago.
They don’t see the man who, without a prepared speech or notes can’t speak without stuttering or going blank.
So I’m sad and I’m pissed off that you can show that side of yourself when you are in the public eye but they don’t get to see what Alzheimer’s has done to you . . . what it has done to us.
How do you do that?”
I was speechless. To be honest, I had no answer. I just sat there feeling sad. I knew she wasn’t mad at me, that she was mad at the situation. I feel sad right now writing the words as I recall that event, not sad for myself, but for her. You see, she thought she was getting someone she would get to spend the rest of her life with travelling, laughing, living out all the dreams we shared.
Now she sees only glimpses of that man . . . glimpses of me or who I used to be.”
Go to Brian’s blog to read the full story here…