Discovering a Gift I Already Had

I was recently challenged by my friend Diane Tisseur, Groovy Lens Photographic Art (check her out) from Quebec, Canada, to post a Nature Photograph for 7 days, while challenging a new person each day to do the same. I’m so glad she did.

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Photo from Day 1 taken about 3 years ago 

Being asked to do something with my photographs forced me to look at what I had photographed years ago. Seeing these images brought back feelings of joy, peace and satisfaction. It also filled me with a sense of pride to look at some of the beautiful things I created using my camera, my iPhone  but especially, my mind.

Seeing these images transports me back in time, a time I can remember clearly. It’s like listening to your favorite song or smelling a favorite/familiar scent. You go back to that particular time and experience what you were feeling at that time. Being my short-term memory is depleting, utilizing my long-term memory allows to clearly experience the joy and excitement I once had about photography.

It is also forcing me to think outside the box  in an effort to take new photographs. It’s giving me a new sense of purpose, a feeling of excitement. To be honest, it’s giving an escape from thinking only of Alzheimer’s.

So, thank you Diane, for giving me a gift I already had but was hidden in the back of the closet. I’m digging it out and will be putting it to good use.

PEACE,
B

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

 

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.

 

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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

The Angry Side of Alzheimer’s

The Angry Side of Alzheimer’s

One of the things that makes me angry about having Alzheimer’s Disease are people that DO NOT WANT TO UNDERSTAND that I, and people like me, still know what’s going on around them and can still carry on an intelligent conversation. Sure, the words may not flow as evenly and smoothly as they did before, the mind may not allow us to remember the conversation an hour or a day or a week from now, but we still enjoy being in the moment.

Before my diagnosis, I had friends . . . lots of friends, or so I thought. These people who I thought were friends kept in contact with me, returned a phone call whether or not I left a message, would interact me with through Social Media or in person. Where in the hell are these people now? I have no idea. Don’t get me wrong, I’m not mad that these people don’t talk to me anymore, I mad for the reason they don’t talk to me anymore. There’s a difference , and in addition, I feel sorry for them.

stigma-tmpwimi-wb-squared1People that don’t understand something or have misconceptions of something tend to make their own decisions about that something. It’s called STIGMATIZATION!
(WOW, the Alzheimer’s Guy knows a big word and can use it properly in a sentence. Imagine that?)
When it comes to Alzheimer’s Stigma, the Alzheimer’s Association does a great job of describing it and how to deal with it here : Alzheimer’s Stigma @alz.org

Here are a couple of examples of stigma the Alzheimer’s Association uses:
A diagnosis may test friendships. Friends may refuse to believe your diagnosis or withdraw from your life, leaving a feeling of abandonment or isolation.
The first part of this I believe to be true.
The 2nd part about isolation and abandonment is not. My wife and kids, as well as the friends that have stuck with me, and some family members, have not allowed me to feel abandoned and/or isolated. I am thankful for their continued presence in my life.
I can’t say the same for others.

– Relationships with family (and friends) may change. Family members (and friends) may not want to talk about the disease, perceive you as having little or no quality of life, or may avoid interacting with you.
This is the biggest issue. I really feel that most of my friends just don’t know how to deal with my disease, or just don’t want to deal with me having the disease, so they just don’t deal with me at all.
This was one of the main reasons I created a Facebook page. I still post “some Alzheimer’s related things” on my profile but my Facebook page is strictly for Alzheimer’s related information. Due to lack of engagement on my Facebook profile, I felt people would rather read about family and funny things instead of the reality of Alzheimer’s.
In case you’re interested, my page is: My Alzheimer’s Journey

For more examples and information on Alzheimer’s Stigma, go to: Alzheimer’s Stigma @alz.org

All of this is glaringly evident to me since I no longer work and since I no longer drive. It’s not like I stay at home and do nothing. I spend a lot of my time researching and Advocating for Alzheimer’s. For me, my Advocacy has turned out to be the best job I have ever had without getting paid and has introduced me to some pretty wonderful people, both with and without Alzheimer’s.

You see, I’ve learned to overcome the Alzheimer’s Stigma. It took me a little while and because I still retain my long-term memories, I still miss the friends I “used to have” but it hasn’t stopped me from living. I’m still active on Social Media, I still make phone calls and leave messages, I still wait for the phone to ring from the people that say they will call me back.
Does the fact that my phone goes days without ringing  make me feel sorry for myself? No!
Does it piss me off? Sometimes, but all I can say to that is, it’s their loss.

My life is simple now. It’s not what I envisioned my retirement to be but just the same, it’s simple. I live with 3 amazing people who love me and take care of me, and I have my little furry friend who is always by my side. He’s also an excellent listener.

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I know the world would be a much better place in which to live if there were no racism, no inequality in the workplace, no unnecessary violence, and if we could all gather as a world and join hands every once in while and sing Kum-Ba-Yah.
Until that happens, just do me favor . . . just because someone, a friend or not, has a disease, do not abandon or isolate that person. There is a great chance if the tables were turned, that person would stick by your side.

PEACE,
B