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 . . .
Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?
First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???
- I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
- I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times
by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape? Did I fake remembering the 4 words I was told 5 minutes ago?
- Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
- I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?
WOW . . . if I was faking all this, I must be a pretty damn good faker to have come up with this diabolical plan. But wait, if I was actually faking it, wouldn’t that take someone who can think and remember what to do, day in and day out, so they could remember to keep “faking it?”
- who has no clue what day it is
- who cannot tell time on a non-digital watch
- who has to have alerts on his phone to remind him to take his medicine, to eat and to bathe every day
- who can’t remember, day to day, how to work a TV remote
Could someone who is Cognitively Impaired really carry out this plan?
Oh wait, I get it . . . I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember my wife and children. God forbid, should I be able to use a laptop to write blog posts that will hopefully bring awareness and education to people who don’t understand the in’s and out’s of Living with Alzheimer’s Disease that they only saw in their elderly parents and grandparents.
GEEEEZZZZ, I guess since I’m able to do all of these things, maybe all of those so called medical professionals, all 4 of them, plus their PA’s and NP’s, all with their Diplomas and Certificates and published articles are just full of shit!
Maybe they have a quota as to how many people they have to diagnose with a Dementia-Related Illness each month and they needed just one more to be awarded the monthly “Hey, You Diagnosed Some Poor Sucker with a Fatal Illness Who Wasn’t Really Sick” award, and I was the lucky one.
Maybe they (all 4 Dr’s, PA’s and NP’s) deliberately lied to me just to turn my life and my family’s life inside out and upside down, all the while so they can collect a $35 co-pay so they have some spending money for lunch!
Wow, did they pull the wool over my eyes, or what?
I’ve been open and honest about my Alzheimer’s life since the day I was diagnosed. When I talk about it, I don’t do it to make people feel sorry for me, to have pity on me or to call attention to myself.
If I did that, I’d be dishonoring the lives of my Grandfather, my Mother and Father, or my wife’s Grandmother.
If I did that, I’d be making a mockery of every person in the world who has Alzheimer’s Disease, whether they be over or under the age of 65, individuals who I now call a friend.
If I did that, I’d be purposely putting my wife and children through sheer, underserving, inexcusable, wretched hell.
Well, I don’t have the capability to do something like that.
I’m not saying I’m perfect for I have many faults and I’ve made many mistakes in my life that I’ve paid dearly for, but I’m not evil!
So, for those of you who want to continue thinking I’m faking my illness, please go right ahead. You have the right to think and say what you want. You can’t hurt me anymore than what I’ve already been. We don’t talk or see each other so it’s not like I’m missing out on anything.
Since receiving my “diagnosis” I’ve become non-existent to you, well, except to be called a fake, not to my face of course.
So please, continue your path in life and feel good about yourself. It must be nice to sit upon your throne and pass judgment upon those of us, you feel, are just skating through life.
Yeah, I’m skating alright. Of course, I can no longer skate on my own (guess I’m faking that too) but I’ve got Shannon (and her family), Asheton, Bradley, Linda and so many others holding me up both physically and emotionally when I need it. Unfortunately, I’ve been needing their assistance more and more lately but they are always there. I know I’m fortunate to have them, and yes, I know who YOU are, and I NEVER take it for granted.
They understand what I go through every day. They see and talk to me on good days, bad days and all days in between, because they get it and I am so thankful for that.
Feel free to call them and ask them if I’m “faking it”.
Better yet, just call Shannon. She would just loooooove to talk to some of you.
Just be prepared though, she’s kinda protective of me.
Until Next Time . . .
I know you’re probably looking at the title of this blog post wondering what it means. I promise I’ll tell you, but first, I would like to (I’m trying to think of the word that means to look back on certain events but not only can I not figure out the word, I can hardly remember yesterday, so I will just say . . . ) look back on 2016.
2016 was a very busy year for me. I can’t remember a time in my professional work life when I was this busy. All I can say is, it was a different kind of busy. Being that I’m not able to hold down a 8 – 5 salaried job doesn’t mean I’m sitting back in my recliner with Dallas (my dog) eating ice cream and watching daytime talk shows. (by the way, have y’all seen Harry, the new show with Harry Connick, Jr.? It’s on Mon -Fri @2pm CST, on ABC. Just sayin’.)
Where was I . . . Oh yeah, 2016.
Working with several organizations (ALZ Assoc AL/FL Panhandle, National ALZ Assoc Early-Stage Advisory Group, Dementia Action Alliance, Covenant Alzheimer’s Care, Dementia Alliance International) keeps me busy. And no, I’m not complaining.
Busy = Engaged Brain . . . Stagnant = Fog. I’ll take an engaged brain any day.
This brings me to the first number in the title . . . 58
58 is the number of presentations I took part in during 2016. Yes, with only 52 weeks in the year, there were times when I doubled up in a week and even in a day. I didn’t care. I did what I was asked to do without question. In my mind, it was another opportunity to spread Dementia Awareness. It was another opportunity to demystify the Stigma associated with Dementia, especially Early-Onset Dementia.
No matter where I go, people still associate Dementia as that of a disease of the elderly. When I stand at the podium and tell the audience, “I’m 56 years old and I have Early-Onset Alzheimer’s Disease”, the reaction, the looks on people’s faces is consistent. It’s that of surprise, shock, and yes, disbelief. I get comments like, “My Mother / Father / Grandmother / Grandfather had Dementia and they couldn’t speak, let alone stand up in front of an audience like you do and talk about their life wth Alzheimer’s. I ask the age of their loved one and they are/were considerably older than me. I take that as an opportunity to talk about my life and the lives of hundreds of thousands of others who have Early-Stage Dementia and are able to live somewhat of a full life.
I also have people tell me how “brave” I am to talk about my life with Alzheimer’s Disease. Military personnel, Law Enforcement Officer’s, Fire Fighters and others who put their lives on the line every day are who I consider brave. I’m just a guy with Alzheimer’s Disease who can still talk about what it’s like to live with the disease. As I say in my presentation, “Alzheimer’s: Up Close and Personal”, “I don’t try to paint a rosy picture of what it’s like to live with this disease for if I did, you would not understand what we go through on a daily basis.” Although I don’t consider myself “brave”, I do thank them for the compliment. My Momma taught me to be kind.
My Dementia Advocacy isn’t just restricted to the AL/FL Panhandle. I also go to different places in the U.S. That’s what brings me to the second number in the title, 11,370.
That number represents the number of miles I have traveled by air and highway during 2016. To give you a breakdown, 5,836 were the number of air miles, leaving a balance of 5,534 representing the number of highway miles. The air miles weren’t shocking since I made a number of trips to Washington, DC and Chicago, but the highway miles are what really surprised me.
One of the most memorable moments was during a presentation in Washington DC at the National Academies of Sciences • Engineering • Medicine for the “Preventing Dementia and Cognitive Impairment Workshop”.
I was asked to speak at the workshop, to give an abbreviated presentation of my “Alzheimers: Up Close and Personal” presentation. Looking at the other presenters, they were Ph.D’s. CEO’s, MD’s and then there was me. The only abbreviations I could think of to go behind my name was ALZ, which is how I introduced myself.
Being that my presentation was scheduled for later in the afternoon, I was able to listen to the other presenters. It was a bit intimidating due to their Scientific, Medical, and Professional backgrounds but I knew I would be presenting from a first person point of view, talking about myself rather than someone or some thing.
When it came time to speak, I walked up to the podium. To the left of me was a wall of windows. Right before I started to speak, I looked out the window and there was the Lincoln Memorial. It was such a surreal moment. A feeling of calmness came over me as I started my presentation. During my 15-minute allotted time frame, I glanced at Mr. Lincoln’s Memorial several times. I not only felt proud to be there, but I felt as if I were representing the millions of people living in the United States who were living with Dementia. At the conclusion of my presentation, the unthinkable happened. The entire room stood up and gave me a standing ovation. No one else, the entire day, received that type of acknowledgment. What a memorable moment that was, memorable enough to stay with me.
My local advocacy has put me in front of audiences numbering in the 20’s and 30’s to 100’s. Each time, I share my “first person point-of-view” as to what it’s like Living with Alzheimer’s each and every day.
Although I’ve spoken to Medical Professionals, Civic Organizations and Caregivers, the one group that affects me in the most emotional way are the Law Enforcement Officers. Each and every day, these men and women put on their uniforms and then put their lives on the line. That’s what I call bravery!
Through Crisis Intervention Team Training, I speak to them as well as teach them as to how to identify people Living with a Dementia-Related Illness, individuals they may come into contact with each and every day. Again, I speak from personal experiences of public confusion, disorientation, broken or unintelligible speech, etc. to give them an idea of what to look for. They ask very good questions and don’t mind if the presentation goes over the allotted time.
Most of them, as do most of the audiences I speak to, have a connection to a family member or friend who has had or has a Dementia-Related Illness.
Most of them have already had experiences with individuals with a Dementia-Related Illness and will now interact with these individuals differently and in a more positive way.
And this brings me to the last number in the title, 1,000%, which is what I give to everything Alzheimer’s.
– preparing/updating one of my presentations
– presenting to a small, medium or large audience
– making sure my family knows how much I appreciate what they do for me, day in and day out
I make sure I give it my all.
I give 1,000% for I don’t know when I won’t be able to do this any longer.
When my time comes, I want to know that:
– I gave everything I had to give.
– no matter how big or small, I made a difference
– I gave people a better understanding of what it’s like to “Live with Alzheimer’s”
– I played a part in the destigmatization of Dementia
– people are now aware that Dementia is NOT just a disease of the elderly
– I helped people realize and understand that just because someone has Dementia does not mean that it’s the end of all things.
There is still so much work to be done. There is still so much Dementia awareness and education to be shared. I’m hoping 2017 will be a breakthrough.
Whether or not that happens, I will continue my travels and will continue giving 1,000%!
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 . . . . 🙂
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.
I was in a locally-owned retail store yesterday afternoon when, because I was unable to find the item I was looking for, I had to ask for help. Confused and a bit frustrated, I tried to explain to the store employee what I was looking for but the words came out stuttered and, I’m sure, unintelligible. To avoid further embarrassment, I stopped and told the very nice lady, “you’ll have to excuse me but I have Alzheimer’s and my words don’t come out right at times.” Well, she just laughed and said, “I know what you mean. I get Alzheimer’s when I drink!” and laughed a bit more.
I didn’t get mad because I’m used to reactions like that from people who don’t know about Early-Onset Alzheimer’s. Instead, I explained to her that I had Early-Onset Alzheimer’s Disease and that it affects people under the age of 65. I thought she was going to cry from embarrassment. I told it was OK and that I deal with this type of reaction every day. It gave me an excuse to Advocate. Here I was standing at the cash register with, first just her but as time went on, a group of about 5 people, talking about Alzheimer’s.
I answered questions about how I knew to get diagnosed, what type of issues I was having, what were the signs before diagnosis, etc. After about 15-20 minutes of fumbling and stuttering my way through Alzheimer’s related information, giving them the http://www.alz.org website, telling them to look up “Know the 10 Signs,” I left.
I have to say, for the next few hours, I was bothered by what happened. Not because she made a joke, but because here was yet another person who didn’t know about Early-Onset Alzheimer’s. Other diseases have no age limit. You can tell someone you have cancer and they will immediately know it’s possible. For me to tell someone I have Alzheimer’s when the majority of people think that only the elderly can have this disease, simply means that more awareness and education is needed.
Right now, you can’t watch a football game during the month of October and not see pink. I think it’s wonderful that Breast Cancer Awareness is out there and in your face. The pink ribbons and football gear works, for so many people are now very familiar with that disease. For years, Jerry Lewis used to do the Muscular Dystrophy Telethon on Labor Day, not only raising awareness, but millions and millions of dollars. Because of that, people are aware.
WHERE IS THE PURPLE??? WHERE IS THE ALZHEIMER’S AWARENESS?
The real question should be, why do other disease receive billions of dollars from the National Institute of Health when Alzheimer’s doesn’t even crack the billion dollar ceiling? Again, I hold no ill-feelings towards other diseases. If anything, being that they have now found treatments, preventions and cures, it gives me hope that one day, the same will be said of Alzheimer’s. For now, well, we keep advocating.
Does the fact that a cure/treatment/prevention isn’t even on the horizon stop me from advocating? NO!
Does it frustrate me? Yes!
But again, does it stop me? NO!
The only positive from all of this is there is a group of people (a small group) that now know about Early-Onset Alzheimer’s. If one of those people shares that information with someone who may be showing sign of Alzheimer’s and that person goes to their Doctor, well, I have done my job.
One at a time. It’s slow, but at least it’s progress.
Until next time . . . PEACE!
“I Have Alzheimer’s, BUT It Doesn’t Have Me!”