If You Can Reach At Least One . . .

Since becoming an Alzheimer’s Advocate, I have spoken to groups numbering 1 to 1,000. The locations have been auditoriums, small halls, retail stores, bars, and churches. Neither the number of people nor the location ever affects the way I share my Alzheimer’s story. I speak with the same passion, I speak from the heart, I speak from real life experience.

Shortly after my diagnosis in October 2014, I knew what I had to do. It was something I had been doing all my life . . . something I had done in my professional life. Since I no longer had a professional life, I knew sitting around watching TV all day was not going to do me any good.  I had to talk about it.

Alzheimer’s is a funny (not a ha-ha funny) disease, in that you never know what memories you will keep or forget.
One memory I have kept is of a wonderful Manager I had years ago. He was a retired Navy guy. I’ll call him, “Mike”. “Mike” was the BEST Manager I ever had for he pushed me. When he felt I wasn’t pushing myself hard enough, he called me a “Rack Lizard.” If I remember correctly, (and no, I’m not joking) a Rack Lizard was a Navy or military term used for someone who was a bit lazy, “laying around in their rack (bed) all day.) He used it not as an insult or not because I was lazy, but as a tool to push me to be better. 

It was in the early 2000’s, a very busy time in the Communications business for we were launching Digital Cable and High-Speed Internet.  We were knee deep in customer calls wanting information and technical support so we had to hire a large number of temporary employees to help with the overflow. I was the Technical Support Supervisor and I felt I was not giving my regular team members the proper attention. So I went to see “Mike”.

I told him I felt like I was not reaching all my employees and I didn’t want them feeling ignored or unappreciated. What he told me as a response to my concern was something that has lived with me to this day.
He said, “As much as you would like, you are not going to reach every single person. However, if you can reach at least 1 person and that 1 person succeeds because of your interaction, then you have done your job.”

It was awesome advice. From that point forward, I remembered what “Mike” said and it got me through some frustrating times. Although it was excellent advice, the flip side was you never really knew whose life you may have touched, who that 1 person is.
Well, I got see to see that 1 person.

I recently co-moderated a couple of focus groups. We spoke to 2 different groups and they were individuals with Dementia-Related Diseases as well as their Caregivers. The discussions ranged from how they (the person with the Disease as well as their Caregiver) are managing their lives to what they learned from their Physician when they were first diagnosed. 

The discussions were very interesting for I could relate to almost every person in the group. We may have had a different Dementia-Related Disease, but some of the symptoms are the same. The first group was a bit reserved at first but after they warmed up to us, they opened up. We felt it was a great success.

The second group was fewer in number but they opened up immediately. One particular person, I’ll call her “Sally”, was very anxious. She was there with her sister.“Sally” had not yet been diagnosed but was showing signs of someone with Early-Onset Alzheimer’s. (I am not a Doctor and my opinions are my own.) Her sister said she had become extremely forgetful and was getting wore.

From what her sister shared with us, “Sally” was consistently worrying about things she forgot about the day before. She was forgetting about the present day and was not remembering what was going going to happen tomorrow. Basically, she was worrying 24/7 and not really focusing on the here and now.

As I said previously, “Mike’s” advice had a huge impact on me, so much that I use it when I give my “Alzheimer’s: Up Close and Personal” presentation.
It comes in the latter part of the presentation . . . “As much as I would like to reach every single person in the world, I know that is not possible. However, if I can affect at least one person in a positive way, I am doing my job.”

I gave “Sally” some of my own advice that worked for me. I told her (and reminded her sister to help her remember) to let go of the things she forgot about the day before and not worry about tomorrow. The only thing she could do was to live in the here and now . . . LIVE IN THE MOMENT! She began to repeat the phrase over and over as if she was trying to burn it into her brain. Surprisingly, it calmed her, not completely but she was a lot better than what she was. Her sister told me she would help her to remember.

 Now, when I talk to folks, I don’t usually see them again, unless I go back to that same group. Being I was out-of-town, I knew I would probably never see these folks again. I would have to hope that my words helped them in some way . . . not everyone, but just one. 

The next day, I was going back to my hotel and I was hungry. I figured I would stop off at Publix and get both lunch and dinner so I could just eat in my room. I was at the deli counter when I heard someone saying, “excuse me sir . . . excuse me sir.” I turned and it was “Sally’s” sister. She said, “It IS you!” then proceeded to give me a great big hug.

She said, since they left the focus group, “Sally” was changed. She was a bit more relaxed and would say every now and then, “I’m going to live in the moment.” She thanked me for making a difference in “Sally’s” life by listening to her and giving her advice that truly made a difference and had a positive impact. I immediately thought of “Mike” and how finally, after all these years, I experienced “THE ONE!”

We spoke for a few more minutes and I left to go find my dinner. I admit, I was a bit teary-eyed after experiencing something I thought I would never experience. But my joyful moment was interrupted by another voice . I heard, “Mr. Brian . . . Mr. Brian, is that you?” Lo and behold, it was “Sally”. She was waiting for a prescription. She ran up to me and gave me a great big hug, saying, “Thank You, Thank You, Thank You! You changed my life!!!”

I may have, but I don’t remember ever hearing those words before. I just let her hug me and I hugged her back. She told me she had been “Living in the Moment” since the day before and she didn’t even worry about things she forgot. She said she slept the whole night through for the first time since she could remember. She couldn’t thank me enough and she would never forget me and would pray for me and my family as I lived with my Alzheimer’s.

What a WOW moment!!! It was an incredible feeling but also very humbling. Once I got back to  the car, tears flowed. I have given that advice to probably thousands of people and not once has it come back like this. It was a life-changing moment. Now that I have it in print, I will be less likely to forget this experience but if I do, I’ll remember when I re-read this.

I owe a debt of gratitude to “Mike” for sharing his knowledge, his experience and his words of wisdom with me, oh those many years ago.  “Mike” your words have served me well, sir and in case you haven’t experienced “the one”, well he’s writing this blog post!

Now, about that Rack Lizard term . . . .  :)

PEACE,
B

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

I Hate You

HATE! It’s a very strong word, a word I hardly ever use, however, there are certain instances when the use of this word is appropriate.
This is one of those instances.

HATE is defined as:
feel intense or passionate dislike for someone or something

I will say that my hatred is NOT directed towards a “someone” . . .
it is a some “thing!”

With that out of the way . . . I HATE YOU!!!
I don’t just hate you, I hate you with a passion. I despise you!
I hate the sound of your name. I hate what you do to people.

You’re a thief, a thief of the worst kind.
You rob innocent people, not of material things, but of their most precious memories. You take away their ability to reminisce, to memorize, and not recognize the faces of their spouse, their children, their grandchildren, and friends. You even go as  far as taking away  their ability to recognize themselves.

You don’t do this all at once. No, that would mean you have a conscience and feelings. You don’t have either of those. You’re a torturous thief, slowly and meticulously robbing individuals over a period of years until there’s nothing left. They are left, literally helpless, unable to do anything for themselves.

To add fuel to the fire, you don’t just ruin one life. You’ve figured out how to ruin the lives of millions, and you’ve done it in a way to stay untouched.

The one thing I can say that could be considered fair is that you show no favoritism. You’re an equal opportunity thief. You know no race, no stature, no sexual preference, no age. You go after whoever you want, and why not? There’s no one to stop you . . . yet!

Your siblings, Cancer, Heart Disease, HIV/Aids as well as your many cousins, were badass in their day, but they had flaws. Their armor looked menacing but it was soon discovered their looks were deceiving. They were conquered. They are still a threat and they still reek havoc upon the human race, but we now know how to defeat them. You, well, your armor, so far, has no flaws.

Just so you know, I’m not the only one that hates you. The actual amount of people that despise your existence is unfathomable. I can’t speak for them but only for myself.

You see, you took my Grandfather way too soon. He cared for my Grandmother, who was a paraplegic, but you didn’t care. I guess along with being a thief, you’re a bit of an ass also.

You took away my Mother. I guess, in a kind gesture, when my Father died, even though she was at the funeral, she had no idea it was her husband of 60 years.

You took away my wife’s Grandmother. My wife adored her Grandmother, but what did you care? Oh, that’s right . . . YOU DIDN’T!

Now you are taking me. Little by little, you are deleting my memory bank, not of the things of long ago, but things of yesterday. Yeah, you have all sorts of tricks up your sleeve, but I’m ready for whatever you throw at me.

You see, Alzheimer’s, I may not be able to defeat you, but my friends and I are doing whatever we can to rise up and band together for the cause. The cause is A CURE, but we will settle for a way to slow you down, to prevent you from robbing others and to ultimately lock the entryway to our brains and the brains of those who come after us.

You’ve had a good run. Your Father, Dementia, must be proud, but, like your siblings, you will also, one day,  be defeated!

Until then, I will continue to hate you, but, I do not fear you!

 

Peace,
B

Who’d be an advocate…

“Who’d be an advocate . . . ” , beautifully written by Kate Swaffer, shows the side of having a Dementia Related Illness not many people see or understand.
Thank you Kate, for being a beacon, a truthteller, a wonderful human being!

Creating life with words: Inspiration, love and truth

Screen Shot 2016-01-15 at 4.54.08 pm

It seems I have written on

Dementia advocacy before

Who’d have known

It’s more pain than joy

It polarises people

Sadly makes it more ‘them and us’

People without dementia everywhere

Wanting large pieces of the proverbial pie

Using people with dementia

To take sides and support their business goals

Or their personal agendas

Being referred to as That woman…

Hurtful and deeply unkind

Talked about behind my back

Worse than yelling in my face

As one aged care executive did to me publicly

So please…

If you won’t say it to my face

Then please

Feel free to hate me

Feel free to disagree with me

But please keep your lips sealed

Stop hurting me

Which also hurts others with dementia

As today

Quite frankly

There is no doubt in my failing and fragile mind

That I have had enough instruction!

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Just Imagine

Just Imagine

Spring! A time of renewal. Flowers bloom, sending their floral scents into the air; animals awaken from a long winter slumber and newborns take in their first breath. The earth awakens, “springing” into beautiful, colorful life again.

Spring takes everything old and makes it new again . . . or so it seems.

Just Imagine if we could do that with our brains? Our bodies? Our Society? Imagine developing a mental or physical illness in the Summer, Fall or Winter, then going through a transformation or renewal, come Spring. Everything would be new again.

Just Imagine awakening to a world with no hatred, violence, hunger or poverty.

John Lennon had it right when he penned the words:
“Imagine no possessions. I wonder if you can.
No need for greed or hunger. A brotherhood of man.
Imagine all the people, sharing all the world.
You may say I’m a dreamer.
But I’m not the only one.
I hope someday you’ll join us.
And the world will be as one.”

How I wish this were true. In a perfect world, it would be, but we all know perfection is hard to come by.

Just Imagine if I awoke this morning and I would have been mentally renewed. Instead, I woke up and had no idea what day it was. I had no idea the season had changed. I didn’t know what happened yesterday or the day before for that matter.

Just Imagine if everyone who has Alzheimer’s or other Dementia-Related Illnesses woke up tomorrow morning and there was a cure or a way to stop the progression or a way to prevent this disease? What a day that would be.
Unfortunately, I know this will not happen tomorrow, next week, next month or next year. I still have the wherewithal  to know a cure will not be found in my lifetime, but it doesn’t stop me from advocating.

It didn’t stop me from advocating when I went to Tallahassee to speak to our FL Legislators regarding state funding for our aging population.
It’s not going to stop me from advocating when I go to DC in April to speak to our Congressional Leaders about funding additional dollars for research.
It’s not going to stop me from advocating at my next presentation, whether it be 1 or 1000.

You see, I advocate for the next generation, for those individuals who come after me, in hopes a cure will be found for them.

Until then, I will continue to . . . Just Imagine.

 

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

 

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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