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
A Bit of Brian's Brilliance 
GREAT job of writing, my friend !! 😀
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Tru here. Shared to the “public” FB page for Dementia Mentors.
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Care partners are true heroes. And bless you for staying out there in the public eye to help others along the way.
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This is very insightful…I have to wonder if it would be better or worse for her if she never got to see a glimpse of the “way you used to be.”
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That sounds like a conversation I could have with her that could lead to another entry.
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Thank you for sharing. When I work with people living with Alzheimer’s (or other dementias) who speak at our events, I often hear from people in the audience that they didn’t realize the person had Alzheimer’s until they got up and spoke. I think our society has focused so much of images of those in the later stages of the disease that there isn’t a good understanding of what it is like to be in the early stage and have both of those sides – the side that can still perform some tasks exceptionally well along with the side that can have troubles with what used to be very simple tasks. I so admire and appreciate all that you (and Shannon) do to help people better understand what it is like to live with Alzheimer’s.
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Thank You Michelle! When I give my presentations, I ask whoever introduces me not mention that I have Alzheimer’s. It’s part of the presentation and I do it to let them (the audience) see that we can’t still function (somewhat). 😎
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Enjoyed reading this! Great description of the forgetfulness and confusion we deal with!!
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Thank You, Tamara.
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I have several aquaintances in the throes of this horror. As I have mentioned, I applaud you and now your wife for your open advocacy. Over the years, I have been in the audience more than once where folks have turned and said” he doesn’t seem too bad,” after they spoke. For your wife I just want to say you are “on” for a focussed and limited time. Most times a snap shot does not tell the whole story,and she has to live the full length movie. We all owe it to you, our families and those to come to a head with this plague to demand funding for a cure. Expeditiously and adequately, that we can save millions, misery and death. Keep dragging it into the light! Make the eventual ugliness apparent to all that will be to soon victims.
Peace.
Ed
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Thank You, Ed! Once I explained things(or tried) to my wife she had the ah ha moment. She is my best friend and she has done a great job of speaking out about this disease. There’s still more work to be done. Thanks again!
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Good one B! As always, proud of you. 😊👍🏼 I’m proud of my sister (Shannon) too. She exemplifies what it means to not only be a “CarePartner”, but more simply put, what it means to be a wife. She truly loves you for better or worse, sickness and health and inspires me greatly. Let me not forget too, my amazing niece (Ashton) and nephew (Bradley) who take it in stride and help out wherever needed. B, I know you’re thankful for them, but they are thankful for you. You helped raise them into the loving young people they are today. You stepped up to be that father figure when their dad passed away. But that’s what family is…..you take care of each other.
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I cannot thank you enough for writing this article… I feel I have found a sole mate that ‘understands’! I have been diagnosed with early onset Alzheimers at 48… I started ran a business for last 18 years… which I have had to recently sell, 3 teenage children. As you will know life goes on despite you… but one of the hardest things to deal with… and that resonated with me in your article… is that you mentioned you are still capable remembering ‘some things’ but you don’t get to pick an choose’ which things’. And as you can still sound ‘capable and articulate’…. people you converse with often have no idea you have short term memory loss or the person you may be in a deep conversation maybe shortly forgotten… Funny how I seem to remember when I ‘stuff up’ maybe because it is nothing short of frightening to have been on conversation with someone for half and hour at a gathering … move on… then and out later go up to them and say hi and introduce yourself… only to have them say “hmmmm were just chatting an for ages and hour or so ago. That was pertaining a frightening experience and made me fearful of talking to people in case I already had 😦
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Thank you for your words Diann
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This helps me to comprehend and now how to explain to others. At an appointment with Neuro trying to get the Dr to admit my hubby has PPA, he hardly stuttered. Cracking jokes and like he was normal. Visits for 30 or so mins don’t show any of the little hiccups as we call them.
Thank you for the perspective so more are aware.
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Thank You for your comment, Kim!
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Bryan, I read your piece and was just awed by the relationship of your wife Shannon’s comments to me. I was diagnosed with, as my neurologist likes to refer to it “progressive cognitive deterioration which is non-reversible” (he doesn’t like the term dementia) four years ago now when I was 56 years old. I, too, am a public advocate for ‘Living Well with Dementia’ through Alzheimer’s’ Australia. I, too though, have reminders on my phone for medication, feeding the birds , the dogs and me. Even reminders to clean my teeth! For, you see, a gold fish would have a better short term memory then me. They can remember for up to two weeks where as I am ‘in competition with a fruit fly’ that would remember only for 27 seconds. On that basis, I can and do lose anything and EVERYTHING. Glasses, keys, purse, medications. There is nothing I haven’t lost, at some stage, in the last more than four years. Unlike you I am not so fortunate as to have a care partner ( ps sounds like Shannon is ‘one in a million’ by the way) and I doubt that I will ever find that special someone now (with this diagnosis) and so at this time I am living on my own. I am just about to finally get some help after going on five of ‘going it alone’. Sadly there is no one to get sad or angry about my diagnosis now other then me, and I do that on a regular basis, let me share!
Next week I will be speaking at an international conference in Melbourne, Australia on Living with Dementia – you (& Shannon) have given me some wonderful ‘food for thought’ – thank you. Regards Sarah
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Sarah,
I wish there was something that could help us all right now but sadly there isn’t. We each find our own ways as to get through each day and for now, that’s the best we can do.
When speaking at the conference, just speak from the heart and speak the truth. That’s what makes people signup and listen. Sugar-coating doesn’t do any good, but I’m sure you know that.
I wish you nothing but good luck in your future. Everyone forgets stuff. We just tend to do it more frequently, but we do it really well! 😂💜
B
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