Alzheimer’s Has, at least, Two Faces

Alzheimer’s Has, at least, Two Faces

 

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.

The only explanation I could give her was the Public Relations / Marketing / Advertising guy was stored somewhere in my long-term memory bank. When I got in front of an audience, whether it was 1, 10 or 100, something clicked. All of the insecurities and difficulties that Alzheimer’s brought on just went away and the long-term stuff came flooding forward. It only happened when I was Advocating for Alzheimer’s. I had no other way of explaining it.

There’s a part in every speech I give where I say, “This is the best job I have ever had that I don’t get paid for.”

I guess my passion for what I do pushes through the fog and allows me to get my message out. The funny thing is, when Shannon and I first met one another and we just sort of clicked, we said to one another, “Everything Happens for a Reason!” I think there was more to this reasoning thing than we realized.

After she told me how I am perceived in public compared to how I am in reality, it made me realize how difficult it is for people to understand that I, and other people like me, have Alzheimer’s Disease. We probably all have that dual persona, one where the long-term memories kick in and and the other where it turns off. It also makes me realize that more Alzheimer’s Awareness and Education is needed in our society.

The biggest takeaway is understanding what a Care Partner goes through on a day-to-day basis. I (and those of us with Alzheimer’s)  don’t remember how we act, what we say, how we say it, etc., but our Care Partners do and it’s probably the most difficult job imaginable.  It’s why I use the term Care Partner instead of Care Giver. It’s because they are right there along with us, loving and caring for us every step of the way.

I found a quote from “The Mirror Has Two Faces” that I thought to be pertinent.
Rose Morgan: This thing that we call a wedding ceremony is really the final scene of the fairy tale. They never tell you what happens after. They never tell you that Cinderella drove the Prince crazy with her obsessive need to clean the castle, cause she missed her day job, right?

The quote reminds me of my diagnosis and because I’m not able to work any longer, how I probably drive Shannon and the kids crazy with all my bitching and complaining about things that really don’t amount to a hill of beans; how they have to put up with my anxiousness and OCD; how I snap their heads off if I am having a bad day; how I forget things oh so quickly.

I know I’m not easy to live with because of this damn disease, but I’m still me, not all the time, but for now at least some of the time. I know the face I and my family see in the mirror. We don’t like it all the time but it is what it is. I have no choice but to accept it. My family chooses to accept it.
I think it’s why the one thing I DO REMEMBER is how much I love them and how very much they love me. I also appreciate the friends that have not deserted me, with hopes they NEVER go away.

PEACE,
B

 

Showing Up is Half the Battle in Dementialand

I am reblogging this story for it is very similar to what I go through on a daily basis, especially when it comes to giving my presentations.
The polished presenter you see when I give my presentations is not the same person my wife and children live with. I wish it were.

Welcome to Dementialand

On an average day, a shower takes me six minutes. It takes me about six minutes to dry my hair. (It used to take about nine, but I got it cut.) I can put on make up in less than five minutes. If I have a few extra minutes, I can use them to flat iron my hair…which takes about four minutes. Why does any of this matter?

Having a rough idea of how long it takes me to get ready is important because it tells me when I need to start getting ready. If I have to leave the house at 8 am, I try to be in the shower at 7:20. If I jump in the shower at 7:30, I can make it, but I’m gonna feel rushed. If I jump in the shower at 7:40, people usually say things like, “Are you feeling okay? You don’t look like…

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Don’t Wait until it’s Too Late!

Don’t Wait until it’s Too Late!

It’s Valentine’s Day once again . . . the yearly celebration of love, romance, flowers, chocolate and Hallmark cards. It’s a Day set aside every year to remind those of whom we love just how much their love is appreciated.

For those of us with Alzheimer’s, we may not remember from one day to the next what day it actually is. Tomorrow, we may forget that today was Valentine’s Day, yet we will still tell (and show) our Spouse/Significant Other/Family/Care Partner just how much we love them. For us, without really knowing, every day could be Valentine’s Day and we wouldn’t have a clue.

 

calendar
My actual calendar

To be honest, the only reason I know It’s Valentine’s Day is because it says so on my calendar. It may sound strange but I no longer know what day it is. I go by the numbers of the month. I sort of know when the weekend is because everyone will be home. I still won’t know if it’s a Saturday or Sunday but I will know it’s a weekend. 3 day weekends, however, confuse the hell out of me. Looking at the calendar now, I see tomorrow is Presidents Day . . . a holiday . . . CONUFUSION DAY!!! LOL

 

But back to Valentine’s Day. I tell my Wife / Care Partner / Best Friend Shannon “I LOVE YOU” several times a day. I do the same with Asheton and Bradley. For Shannon, I will write her a note and leave it on her pillow or bedside table, send her a text or an e-mail, not just on a holiday, Anniversary or special day, but on any day, at the moment I think of it. If I don’t, I’ll forget. For the kids, I’ll send them a corny joke or just a little something just so they know I am thinking about them.

Why should we wait for a special romantic holiday to tell our special someone how much we love them and how much we appreciate all they do for us? One day, we will not be able to communicate those things with whom we love the most. I don’t know about you, but I don’t want my family to ever wonder how much I loved them or if I ever appreciated them. I want the last words they ever hear from me, the last words I want them to remember me saying, is “I LOVE YOU!”

I guess what I am trying to say is, don’t wait for a holiday to come along to tell your lovedIMG_1559 ones just how much you love them. And no, I’m not just speaking as someone with Alzheimer’s, I’m speaking just as a person. You never know when that “last time” you see or speak to someone will be. So, don’t let a card say the words for you. Say the words with your own voice. Don’t wait until you’re not able to communicate to then try to communicate your feelings. Tell them now and tell them often.

Although I won’t remember saying those words to them or hearing those words from them, they will remember hearing those words from me and hopefully, feel them in their heart forever.

To me, that’s all that matters.

PEACE,
B