A few months ago, I went to renew my drivers license. The renewal date wasn’t until September but Maureen was renewing hers so I figured I would renew mine while we were there.
As we were sitting there answering questions the clerk was asking, she asked me the following question … “Do you have any type of mental illness that may prevent you from driving a vehicle safely?” I knew I had to answer the question honestly, even though I did not want to for I knew what the consequences would be.
I told the clerk, “well, I have Alzheimer’s Disease and I’m not really sure if my reaction time would be like it was.”
She apologized and told me that she could not renew my drivers license without having me tested to see if I could pass the driving test. I knew if I got behind the wheel of a car, my reaction time was not going to be enough to pass the driving test. She said she would leave it open in case I wanted to get tested but she would have to flag my license.
Maureen and I had several discussions, weighing the pros and cons of getting tested. What ended up being the straw that broke the camels back was this. Maureen told me she had noticed the my Executive Functions (making decisions, diminished by my Vascular Dementia) had gone down hill. She gave me examples of conversations we had, some I remembered but the majority of the conversations I didn’t remember.
With my inability to make snap decisions, we came to the conclusion that renewing my license was not going to happen. I understood that, but it was a sad, sad time.
Yesterday, July 21st, I went back to get an ID. Once the process was over, I was no longer a licensed driver. It hit me hard once we got back into the car. As we were pulling out of the parking lot, I lost it. I had a drivers license since I was 17 or 18 years old. Now turning 60 years old in a little over a month and a half, I no longer have a drivers license.
It was so very hard to take although I knew what I was going in there for. I went in as a licensed driver and came out with a Florida ID. It still hit me very very hard. I felt like my Dementia once again took something away from me that I treasured, something that was mine.
I remembered a story my brother Wayne told us. He took my Dad’s car keys away for he was no longer able to drive safely. My Dad forgot a lot of things due to his Vascular Dementia but one day he and Wayne were having a conversation and my Dad was just staring at Wayne. He then said, “I know you! You’re the SOB that took my car keys!” or something along those lines.
It’s funny (not Ha Ha funny) how memories will come back to me at the strangest times. It’s usually not the big memories, but the smaller, memories.
I hate what Alzheimer’s has already taken from me. I have always said from the beginning that I was not going to allow Alzheimer’s to define who I am. I think I’ve done a pretty good job of that so far. Today was a big test. Over the past 6 years, I don’t know if it was Alzheimer’s or Vascular Dementia that took away some things that I treasured and things I had taken for granted for so many years.
Now, those things (friendships, memories, dreams) are gone. I haven’t driven a car or any other type of vehicle since I’ve been here in Largo. I knew that I should not be behind the wheel of a car but I still had my that little piece of plastic that said I still had the ability or I should say, the right, to drive a vehicle.
That is no more and I need to let it go.
Maureen said “the ability to drive is not the measure of a man. The true measure of a man is his care and concern about his fellow man. And you have shown yourself to be a giant by considering the safety of others in this decision. THANK You!”
She then said, “you know what is such a comfort to me? having you in the car with me. You’re my second set of eyes, my second set of ears. You keep me safe!”
So I guess now, I am a co-pilot!
Until Next Time . . .
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.
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.
People 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.
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.
This is a transcript from the 3rd interview in a series I did with the University of West Florida’s Sandra Averhart of WUWF. I’m also including an audio link to the actual interview.
Since November of 2015, we’ve been getting to know Brian LeBlanc of Pensacola. He has been diagnosed with early on-set Alzheimer’s. Now in his mid-50’s, he has known about his condition for a little over a year now. As we continue our conversation, we focus on how the disease has impacted his daily life and how he’s dealing with it.
“Being this is radio, you can’t see what I’m doing right now, but I’m holding up my cell phone,” said LeBlanc. “That’s my constant companion.”
According to LeBlanc, his phone tells him everything, even when to eat.
“Over the past year, probably, I’ve lost probably around 30 pounds. It wasn’t because I was trying. It’s because I was forgetting to eat,” he said.
It was his sister who made note of his weight loss, when she visited a few months back. LeBlanc thought to himself, “I’m just eating healthy.” That was until his wife pointed out the reality that he wasn’t remembering to sit down for a meal.
As a result, he now has reminders on his phone of when to eat, when to take medication, and when to do things such as check the mail or let the dog out.
“Um, without it, I simply would not remember, because you can’t,” LeBlanc said.
Repetition is another aid that he utilizes, noting that before our first interview at the WUWF studios, he must have looked at the email 20 times.
The email was sent to him by Dr. Rodney Guttmann, Director of the University of West Florida Center on Aging, who first proposed the idea of LeBlanc sharing his story with the WUWF audience.
Our first interview was on a Tuesday. But, when it comes to the specific days of the week, LeBlanc says he says he has no idea.
“I know numbers. I can look on a calendar and I’ll see the tenth, you know, be here,” said LeBlanc. “But I don’t know the days of the week anymore.”
LeBlanc can identify weekends, he says, because his family members are home for two days in a row. But, confusion sets in if you throw in a weekday holiday or a three-day weekend.
“That messes me up, really bad,” said LeBlanc.
As a result, his daughter, who’s in college, will write her schedule on a board indicating when she’ll be away and when she comes home.
LeBlanc says access to such information is helpful because he’s found that he doesn’t do well with surprises.
He and his family members also have noted more frequent mood changes.
A friend of his talked about a feeling in the front part of his head that he couldn’t explain. LeBlanc referred to it as being his ‘fog.’
“As hard as you try to see something you just can’t,” LeBlanc said. “Sometimes, it’s completely shrouded. Sometimes it’s in the middle; it depends. But, you can’t see, and it comes and goes. It’ll come in, roll in, roll out.”
It’s on those ‘foggy’ days when LeBlanc can’t get behind the wheel of a car.
Right now, he’s functional and GPS is his best friend. But, he fears getting lost, which triggered his diagnosis, and he has no comfort that he’ll arrive at his intended destination.
“I’m extremely nervous about driving,” said LeBlanc. “That’s why I’ll only go places that I sort of know.”
LeBlanc says he prefers simple routes, without too many turns, adding that under no circumstances can he drive at night.
“That’s completely out of the question, because, I look for landmarks or street signs. At night I can’t see them and it’s not good.”
At night or when he’s in a fog, LeBlanc’s wife and daughter drive him around. Again, LeBlanc is still capable now under certain circumstances, but he knows it won’t be long before he’ll have to give us driving altogether.
“I’m worried that not only will I harm myself,” LeBlanc said. “But, if I harm someone because I was confused, I would never ever be able to live with myself with that.”
In particular, LeBlanc does not want to have to experience what his father went through when LeBlanc’s oldest brother took his keys away from him.
“My father, he forgot a lot of things, but he never forgot that.”
And, as we wrapped up our first extensive conversation, LeBlanc was feeling pretty good about the fact that he made it through the interview without notes. His public speaking on behalf of the Alzheimer’s Association has helped.
He’s part of Alzheimer’s support groups and serves on the executive committee of the Florida/Alabama Panhandle Alzheimer’s Association. Also, LeBlanc is chronicling his experiences in a blog, Alzheimer’s: The Journey…my Alzheimer’s Life.
In general, though, he says speaking isn’t nearly as easy as it used to be.
“People used to tell me I could talk to a tree and have a conversation,” said LeBlanc. “But, now I have to choose my words, thinking before they come out of my mouth to make sure that they sound okay.”
They do sound okay, and in 2016, we hope to hear more from Brian LeBlanc, talking about the changes in his life due to early on-set Alzheimer’s and how he’s coping.
When trying to decide what to write for a new entry, I think about what I would find interesting and what new information I could share that may be interesting to others. I would’ve had a tough time trying to come to that decision even if I didn’t have Alzheimer’s, but because of my “foggy times” and my “dark, extra-confused times,” it makes it all the more difficult.
Instead of trying to re-invent the wheel, I decided to write about what I know best and that is, how I feel and how I act when Alzheimer’s sucker punches me straight in the face.
Welcome to the Dark Side!
Below you will read an excerpt from a presentation I recently gave:
(Taken from my Cognitive Resilience Presentation given at the Generational Resilience Conference in Mobile, AL)
Before I was diagnosed, I pretty well knew the outcome by seeing in myself what I saw in my family members. The difference was I was younger and I was a fighter. I was not going to take this lying down.
I have to say, knowing something and then hearing the clarification of that something is 2 different things. You think you’re ready for it, but it sneaks up on you like a sucker punch.
Imagine associating a positive diagnosis of Alzheimer’s, or a positive diagnosis of any disease for that matter, to a boxing match. It’s like receiving an unseen, right hook, right on the chin!
You fall to the mat, you hear the Referee start the count … 1,2,3 …
you try to get up, but you can’t move, you’re just numb … 4,5 …
you shake your head trying to get a little bit of clarity … 6,7,8 …
the numbness starts to fade … 9 …
you hear a voice screaming at you saying, “GET UP! YOU SAID YOU WEREN’T GOING TO TAKE THIS LYING DOWN! DO NOT LET THIS BEAT YOU!”
You realize it’s your own voice screaming at you hearing the words you said to yourself earlier.
You find a strength you never knew you had and you rise to your feet before the count gets to 10.
Now I know that was a bit dramatic, but I’m trying to prove a point. It is dramatic. It’s a life-changing moment. You realize your life just changed, and not for the better.
My 10 count lasted about 2 days, curled up in a ball in my bed, while I envisioned my Grandfather, my Father, my wife’s Grandmother and my Mother, not as they were before the disease took them, but at the worst part. I was at a big pity party, and I was the only guest. I kept asking to no one, “How had this happened to me?” “Why had this happened to me?”
Well, since no one was there to answer questions which I knew had no answer, I had to take my own advice and get up before the referee made it to 10. There was no way I was going to be counted out.
You see, it’s not just me that I have to think of. I’m married to my best friend, the love of my life. I can’t quit on her!
I have two step-children, who I don’t call step-children. My daughter is 21 and my son is 15. They lost their Dad back to heart disease in 2009. There’s NO WAY I can quit on them!
So, each and every day when I wake up, I get up and make a difference.
It seems like more than a year ago when I received my diagnosis. A lot has happened since then and a lot of it has been positive, however, there has been some dark, difficult times.
I operate on a schedule, a schedule that resides on my phone, a schedule that I wrote about in my previous post “There’s a Reason it’s Called: The Easy Way.” If it’s not on that schedule, if I am not reminded what I am supposed to do that day and when I’m supposed to do it, there’s a good chance it won’t get done. The same goes for the unexpected things that pop up.
I know you’ve heard the saying, “Don’t Sweat the Small Stuff ‘cuz it’s All Small Stuff.” Well, the same cannot be said for me. I’m not going to speak for everyone for I know everyone reacts differently, so I will just speak for myself. Because of the DNA I received from my Father, my temper has always been a bit short. I can hear some people saying, “SHORT? Are you kidding me? Short doesn’t even come close!” I like to call it “being passionate” but that usually also gets a laugh.
What I’m trying to get at is, I worked very hard to control my temper. No one needs to hear or see that, especially if they have never been around that type of person before. I did pretty well, only exploding every once in a while. Since my diagnosis, it happens more often. I don’t think it does because I can no longer remember when it happens or how many times it happens. So, I ask. It happens more times than I would like.
One of those times was this morning. I’m not going to get into the details. All I will say it was a very small insignificant thing and I exploded. I exploded all of my wife, all over my daughter and I would’ve exploded all over my son, but he was still sleeping. I even exploded all over #DallasTheDog! It was not only unfair to them but unacceptable to me. Just because I have Alzheimer’s does not give me a free ticket to treat them in a disrespectful way.
Once I realize what I’ve done, when I see the looks of pain and sadness on their faces, I go into my dark place. My mind becomes a darkened sphere of sadness. I think about what I have done, the words I have said (shouted) and try to figure out a way to apologize.
When I re-enter into reality, I do apologize, but it is THEY who make me feel whole again. They hug ME, telling ME it will alright, telling ME how much they love me. I tell them how hard I have worked to keep everything under control and I know I haven’t exploded or complained in a long time, only to be told it was “just a few days ago when you . . .” or “well, it was just last week when you . . .” They do this not to throw it in my face, but because I asked them to tell me. They don’t like to because they know it will make me sadder than what I already am, but, like everything else they do for me, they do that also.
This is just one instance of what happens. It’s mainly one instance because it’s all I can remember right now. I know if I asked I could fill up pages, but I’ll save that for my book! 😉
The reason I write about this is because, when I am seen in public, I appear to be a polished, educated Alzheimer’s Advocate who can speak eloquently about my Alzheimer’s experiences. I am for the most part, because my long-term memory allows me to call upon my Public Relations days when I could speak about anything and everything. The only difference now is rather than speaking off-the-cuff, I read my words from a script. It sounds polished only because I practice over and over again, but by the time I get to the actual presentation, I have forgotten what I have practiced and the long-term PR memory kicks in. The days of learning and retaining anything new are over.
I wish the days of my darkness were over but I have the feeling they have only just begun. Whenever I am speaking of my Alzheimer’s, I mention that the person with Alzheimer’s is not the only person that is affected by the disease. In my case, it’s my family who, not only loves me unconditionally, but cares for me unconditionally, and does so under the radar.
They embrace me on my good days as well as on my dark days. They and I both wish for the dark days to be less. In my mind they are, but in their reality, I have come to find out they are not. All I can do is try that much harder. I just hope my brain understands what it I am trying to do.
Until next time,
In honor of National Alzheimer’s Awareness Month, I was asked by the Alzheimer’s Association to write about my Care Partner, my Life Partner, my Wife, Shannon.
This is a tribute to her for not only caring for our family, but caring for me and all that goes with it.
I LOVE YOU Shannon, more than words could ever say.
Thank you for being YOU!
I first met my now-wife Shannon at work. I was her supervisor, and since she knew the responsibilities of the department inside and out, I leaned on her for assistance.
We started to get to know each other on a more personal level and then we started dating. She asked me out – I had no idea she liked me in that way! After dating for some time, she took me to Disney World and “proposed”; we had a beautiful wedding on the sands of Pensacola Beach by the Gulf of Mexico and rest is beautiful history.
Learning of my diagnosis sticks in my mind, but not due to feelings of sadness. I was focused on the beauty of my wife. After I asked my neurologist if I had Alzheimer’s and he said “yes,” I remember crying uncontrollably. All I could think of at that moment was what my mother was going through at the time. (Brian’s mother died of Alzheimer’s.) Shannon sensed that. She took my hand and said, “I love you and you will NOT go through this alone. I will always be right here.”
Since then, she has beautifully kept her word.
Before my diagnosis, we travelled a lot; short trips, cruises, trips to New Orleans (my hometown) or Fayetteville, NC (hers) and our favorite destination, Disney World. I used to tell her: “I’m your driver, you’re my navigator and we will go wherever you want to go.” We laughed a lot.
Sadly, the travelling had to stop due to finances. When both of us were working, we could basically do whatever we wanted. That changed when I was no longer able to work. Shannon became the sole financial support. We had to downsize in order to maintain a healthy lifestyle for our college-aged daughter and our son in high school. Shannon has had to adjust to my mood swings, my confusion, my argumentative moments (wanting to do the things I used to but can no longer do, like driving) and losing part of who I used to be.
She has done it all with no complaints and with only unconditional love. She is simply amazing. I’m not sure what I did to deserve her.
Shannon’s biggest strengths are consistency and loyalty. When she makes a commitment, whether it’s professional or personal, she sticks to it – and expects everyone to do the same. These qualities have allowed her to reach a position of great responsibility as an operations manager for a realty company. Her job is hard work and requires long hours but she does it in order to provide for her family. I admire her every day for her strength as a person.
Her personality is a mystery to most but not to me. She is loving, tender, somewhat adventurous, quiet and the funniest person I have ever known. She doesn’t know she is funny, but her dry sense of humor keeps me in stitches most of the time. She talks back to the TV, she figures out who did it on the ‘Who Dunnit’ shows long before the plot is revealed and she loves the ID network. We still laugh a lot, which is wonderful.
I want to thank her and all caregivers. Caregivers – I saw how you took care of my mother, my father, my grandfather and my wife’s grandmother. It takes a certain special type of person to be able to do what you do, but you do it day in and day out. You never complain, you always wear a smile and you’re always there, taking care of your own family or of other families you treat like your own. You are unbelievably wonderful people and for those who are unable to thank you themselves, I thank you!
We can honor caregivers and care partners by giving them something they probably need or deserve – a period of time, whether it’s a few hours or a few days, to have time to relax. This could be a spa treatment, a weekend at a hotel, a manicure/pedicure. Don’t be afraid to ask a caregiver what they want so that you can give them something you know they would enjoy.
I want my care partner Shannon to know that plain and simple, she is my hero.
Shannon, I hope you never feel that the things you do go unnoticed or unappreciated. The vows we took were for better or for worse, in good and bad times, in sickness and in health. You probably never thought it would go to this extreme. Just know, if the tables were turned, I would be right where you are now. I love you unconditionally and you show me that love every day. My only hope is that you can see and feel it in return.
About the Author: Brian LeBlanc was diagnosed with younger-onset Alzheimer’s in 2014 at age 54. Hecarries the APOE-e4 genotype, a genetic mutation which increases the risk of developing Alzheimer’s disease. His mother, father, and maternal grandfather have all died with symptoms of the disease. As a member of the Alzheimer’s Association 2015 National Early-Stage Advisory Group, Brian would like to raise awareness of the impact of younger-onset Alzheimer’s disease and be a positive example for other newly diagnosed individuals. His mantra is, “I have Alzheimer’s, but it doesn’t have me!”
Brian and Shannon live in Pensacola, FL. Together they have three children.
As each day begins, we are faced with a decision . . . “Am I going to take the Easy Way or the Hard Way?”
Most of the time, this is an unconscious decision, however, if we are having a rough morning, we may “consciously” ask ourselves that question.
“The pessimist sees difficulty in every opportunity. The optimist sees the opportunity in every difficulty.”
— Winston Churchill
For me, it would be very easy to just sleep the day (and night) away and let my Alzheimer’s World just pass me by, not having to face things that normal-brained people don’t even have to think about. For instance, I now have an alarm on my phone that goes off every morning, noon and night to eat. Yes . . . to eat.
On a recent visit from my sister and brother-in-law, my sister noticed I had lost a good bit of weight. She asked about my eating habits and I told her, for the most part, I was eating very healthy. Shannon, my wife, said, “when he remembers to eat.” Hearing it said out loud, I came to the realization that I had been forgetting to eat on a regular basis. You would figure your empty stomach sends a message to your brain that says, “FEED ME!” My stomach probably does that but my brain forgets to tell me.
So in addition to the alarm telling me to eat, it also tells me when to take my medicine(s), when to get on my ALZ Assoc conference calls, when to read my emails, etc. Thank goodness for the alarm function on my iPhone.
“I will always find a lazy person to do a difficult job because he will find an easy way to do it!”
— Bill Gates
Then there are the decisions as to how I will spend my day. Since driving is out of the question (I very rarely drive due to my ability to get lost, which makes me anxious, which makes me not want to drive because I may harm myself or anyone in my truck or other people on the road) I have to think of what I can do to stay productive. With the “Walk to END ALZHEIMER’S” approaching, I tell myself to get outside and walk “Dallas the Dog” to get myself prepared. Sadly, I forget to do it. Ironically, when I do remember, it’s raining. No, it’s not an excuse, it’s just how it is.
Advocating is the one thing I do daily, whether it is a speaking engagement or through Social Media. When I have a speaking engagement, as Shannon says, I come alive. I think it’s because I go into “work mode”, falling back on the times when I was working in the role of my Public Relations role. In a way, Advocating for Alzheimer’s is a Public Relations role for I am educating and making people aware of Alzheimer’s. It becomes second nature to me and there is no thinking involved. It’s when the Advocating is done is when I have issues.
“Nothing in the world is worth having or worth doing unless it means effort, pain, difficulty… I have never in my life envied a human being who led an easy life. I have envied a great many people who led difficult lives and led them well.”
— Theodore Roosevelt
So, in retrospect, for the past 55 years, I guess I have had a pretty easy life. Sure there were hard, tough times (broken bones, 5 knee surgeries, gallbladder removal, divorce(s), 3 heart attacks, back surgery, neck surgery, to name a few) but it was never as hard as it is now. You see, before now, all of my “ailments” were curable. I knew with a little rehab, I would be up and about and continue on. There’s no rehab for Alzheimer’s.
Each day is a rehab day for me. I try so hard to reconstruct the day before. I know I should write things down so I won’t forget but trying to remember to write things down so I can remember them the next day or the next week is hard to remember. It’s quite a conundrum. I sort of know how Bill Murray felt in “Groundhog Day.” Each day, although it’s a new day, seems like the day before yet, with not so many memories. I know that may seem hard to understand, but it’s the best way I know how to explain it.
“The Dictionary is the only place that success comes before work. Hard work is the price we must pay for success. I think you can accomplish anything if you’re willing to pay the price.”
— Vince Lombardi
So, I will keep plugging along, trying my best to remember things, but I will never give up, i will never stop fighting, and I will NEVER take the easy way!
Until Next Time,
Today is World Alzheimer’s Day.
It’s a day not so much to celebrate, but more for a call to Alzheimer’s Awareness.
It’s a day to make more people aware of Early Onset Alzheimer’s.
It’s still thought of as a disease of the elderly. those of us that have it, know this not to be true.
It’s a day to ignore the ignorance of some who use Alzheimer’s as a joke;
“accidentally deleted an e-mail . . . #”
“Forgot what day my birthday was on for a solid half hour #Teenagers and young adults will, hopefully, one day, understand how serious this is.
Until then, it’s their right to remain ignorant!
It’s a day to call awareness to the families of individuals with Alzheimer’s.
They sometimes suffer more than the individual with the disease . . . they retain the memories.
It’s a day to remember our loved ones, our friends, our role models who fought the Alzheimer’s fight,
and in who’s honor, we, ourselves, pick up where they left off.
It’s a day to support those who have Alzheimer’s.
This past weekend, I attended a reunion of sorts. We celebrated 75 years of educational achievements St. Agnes Parochial School accomplished. Thousands of boys and girls passed through the doors of St.Agnes, boys in their tan khaki shirts and pants, girls in white blouses and navy blue skirts. (the uniform code was changed later on, but that was long after I left) Unfortunately, due to low enrollment over the past several years, the decision was made to close the school.
Like anything else that happens in New Orleans, whether good, bad, happy or sad . . . IT WAS PARTY TIME! Thus, The Final Bell Has Rung Celebration was created. I’ll get to the celebration in just a bit.
I must admit, when I first read about the closing of the school, it saddened me. So many memories came rushing into my head; teachers, classmates, activities, school plays, field trips, etc. I had my own personal movie playing in my head. I also visualized the layout of the school. (Spending 8 years in the same building, you get to know your way around) I could see the cafeteria and remember the smells of the lunches Mrs. Jeansonne prepared for us each day. I think we were all too young to appreciate how good her food was. How I would love to taste her chicken and rice again.
(Friday nights, all 3 of my brothers, at one time or another, as well as myself, attended Boy Scout meetings in the cafeteria. Although smaller in numbers, Troop 36 is still in existence today.)
It amazed me how much I remembered and how clearly the memories were. Most of the time, I have trouble recalling events from the day before or even 5 minutes ago, however, Alzheimer’s, if there is such a good thing about this damned disease, still allows me to recall memories of long ago.
One of my fondest memories was due to the huge enrollment in the 60’s (we were the Baby Boom Generation). The school ran out of classrooms. So, my 1st Grade class (1966) was in an old house behind the school. The next year the portable buildings were completed and they housed Grades 1-4. The main building was for the upper grades.
Moving into the main building for the 5th grade took a little getting used to. The hallways of the second and third floors always seemed so dark, long and daunting. I guess anything would look like that at such an early age. Now, still a bit dark, everything looks so small.
Flash forward to the present and the “not-so-clear-memories.” If not for the photos that my wife took, as well as others, at The Final Bell Has Rung Celebration, I would not have remembered who I ran into. Those who I did manage to see, although I hadn’t seen some of them in 45 years, I still recognized them. They still had the same faces, just a little bit older, sometimes grayer (like me), but I knew exactly who they were.
Some of them knew I had Alzheimer’s and were amazed how well I looked and that I remembered them. I’m not sure what they expected, but it goes along with the stigma of having Alzheimer’s. You’re supposed to be elderly and sickly looking. Don’t get me wrong, I’m not complaining or insulting anyone. I’m probably the first young(ish) person they have seen with Alzheimer’s. I totally understand and appreciate every one of them. I also ignore the stigma. Like Popeye says, “I yam what I yam!” and as I always say, “I’m Still Me!”
My wife, Shannon, stated in one of the pics she took, “Brian having a great time at the St. Agnes reception. He has seen and talked to so many old friends….he is so happy and in his element….this is ‘my Brian'”
It made me realize that she saw me as I “used to be” and it made me happy that she could see that. On the other hand, it saddens me that I am not that person all the time anymore. I want to be, and sometimes I am, but I want to be that person all the time, if not for any other reason than for her. She married a man who was funny, lively and outgoing and I still am at times, but I’m not as spontaneous as I used to be. It makes me extremely anxious and that pisses me off.
Anyways . . . as I said before, if it weren’t for the pics, I would have a hard time remembering a lot of what happened and who I ran into. I can be reminded of something if someone prompts me or brings up a certain situation but unfortunately, I’m not able to remember those things on my own.
As long as my long term memory stays intact, I can recall many memories, have many movies play in my head and still recall those dear friends from 40+ years ago. I just can’t remember the present too well. And that my friends is the beginning of a long, horrible road that I know I will travel, but I will travel that road with all my memories of yesteryear and those memories will include those of you whom I have had the pleasure of making your acquaintance.
Until next time,