Let’s Change the Narrative!

Each day, I scour the news sources looking for the next “big thing” in the Dementia and Alzheimer’s World. Some days there are very interesting stories full of hope and promise and then there are days when the headlines lead you to believe the next “big thing” has been found, only to find the words, “hopefully” or “in the future” or “in the next 10 years” in the body of the article . . . you see where I’m going.

The thing I continuously see are people like me who are Living with Alzheimer’s and people who are Living with Other Dementia-Related Illnesses being referred to as Patients and/or Sufferers.

I’m not sure about you but I am NOT a PATIENT of any newspaper, magazine, documentary, news channel or TV host.
I also don’t SUFFER from my Alzheimer’s. I struggle.

Part of what I do when I’m advocating is to remind everyone that, although I have a disease that will, one day, contribute to my death, I also remind them that I am NOT anyone’s patient except for my Doctor. “XXX” is my Doctor and I am his/her patient. That’s it. No one else has the right to claim me as a patient. I find that to be highly insulting and it gets on my very last nerve.

When I, and others, are referred to as “SUFFERERS”, it also strikes a nerve. I will speak only for myself on this for I ‘m not sure if others feel like they are suffering. I don’t feel that way. Suffering means, “the state of undergoing pain, distress, or hardship.”  I can understand the hardship part from a financial point of view and on the days when I am in my fog, but I still don’t consider myself suffering.

If I offend anyone by saying this, I don’t mean to. I’m simply stating how I feel. There may be some folks out there who feel as if they are suffering. The only thing I can say to that is, each of us are individuals, and life is going to affect us in individual ways.

The focus right now on those of us Living with Alzheimer’s or other Dementia’s is “SEE ME, NOT MY DISEASE” or “PERSON CENTERED FOCUS.”
Person Centred Approach is about ensuring someone with a disability is at the center of decisions which relate to their life. What it boils down to is, who knows us better than US? Instead of making decisions for us or about us, why not include us in the conversation. Ask US what we think. Discuss options with us . Just treat us for who we are and that is human beings.

I know in the later stages, I will be unable to communicate my wishes as to what I would like or dislike. With that said, I already have an Advanced Healthcare Directive and Appointment of Agent as well as a Durable Power of Attorney. It was important to me to make sure I was making the decisions for my life. I did not want to put that responsibility on anyone else. As a side note, as long as I can still eat, there will be peanut butter, chocolate and of course there will be music.

My advice to anyone and everyone is to have these documents prepared. My advice is free and you, as an individual, can do with it what you like.

I’ve said many times, “This is NOT how I expected to spend my retirement but, it is what it is.” I try to be productive every day, BUT . . .
Sometimes I am, sometimes I’m not.
Sometimes I write, sometimes I watch Netflix.
Sometimes I just sit, look at photographs and listen to music.
Sometimes I go to Starbucks.
Sometimes I just sit and think.
Sometimes I just sit and cry,  but not for long.

I’ll admit, it’s a hard life, but I know there are others who have it worse so I don’t dwell in the darkness for long. I have loved ones who I can call day or night. I have friends, a lot fewer than what I once had (that’s a blog post for another day) that I can lean on when needed, and lastly, I have myself.

In my Alzheimer’s mind, I’m still me. I can still drive, I can still work, I can still fix technological things, I can still balance a checkbook. OK, I can’t physically do ANY of these things anymore, but that’s OK. I know what my limits are . . . most of the time.

At the end of the day when I lay my head on my pillow, I know I’m still me. I’m not everyone’s patient, I’m not suffering and I’m not the me I used to be but that’s OK. You see, I don’t worry about the things I wasn’t able to do today for when I wake up tomorrow morning, I won’t remember. I’ll just re-invent myself all over again, until the next day, and that’s OK with me.

Until next time,
PEACE!
B

WHY?   WHEN?   HOW?

When looking at diseases that affect the daily lives of millions of individuals each and every day, you’ll see some of the most common diseases already have a cure or a way to stop the progression.

  CORONARY ARTERY DISEASE ✔️
  CANCERS✔️ HIV / AIDS✔️
  DIABETES ✔️

But, when you get to the more complicated diseases such as Alzheimer’s, that one seems to stand alone because, partly, it is one, if not THE, most misunderstood disease in the world today.
 
  ALZHEIMER’S

The reason being there is:
no known way to prevent Alzheimer’s
no way to, 100%, stop the progression of Alzheimer’s
no way to stop delusion, disorientation or forgetfulness
no way to stop the inability to create new memories
no way to continue completing simple tasks or recognize common things
no way to stop aggression, agitation, difficulty with self care
no way to overcome irritability, personality changes or getting lost
no way to stop the inability of jumbled speech
no way to regain loss of appetite, sense of taste and smell

These things occur over time, however, as progression continues, all of the above can occur in a single day. Then the next day comes and the only recollection we have is what we’re told what happened the day before . . .
for we cannot remember.

Living alone adds a whole other wrinkle to the Alzheimer’s equation, however, it is doable. I know a few others who, like me, are living alone and we are all doing just fine. It’s not always easy but nothing worth doing ever is. Being on my own gives me a feeling of independence and, it keeps me on my toes. For the most part, I know I am the only one who I can count on.

On the days I struggle, on what I call my “foggy days”, I reach out to my support system, or what I call, my Support Team. They are made up of family, friends and even some who are just acquaintances. They say they are “just calling” or “just stopping by” to say hello but I am still aware enough to know they are checking in to make sure I’m OK, especially when they bring me food. (They have seen me in person or have seen photos of me and notice the weight loss.) Sadly, the need of my Support Team has become more of a necessity than not and I am truly grateful they are around.

So, what do we do? Do we just stop living the best life we can?
No!!! Giving Up or Giving In is NEVER an option.

What we continue doing is using our voices to educate, to advocate, to speak out against stigmatization.
We put our pride aside and ask anyone and everyone to help us raise much needed funds to be used for the possibility of finding a cure or a way to stop the progression of this horrendous disease.
We keep our hopes alive that the success the researchers are having with mice will turn into prevention and cures for humans.

Through all of this, we don’t stop loving and/or needing love to be returned. I believe love stays with us until the end. Although my Mother was not able to speak, she could still express love though her eyes, or through humming or La, La, La in the most beautiful, melodic voice I’ve ever heard.

So, I start my day and end my day acknowledging how fortunate I am for the many ways I am loved and cared for.
I’m lucky to have some very special people on my Support Team and I’m thankful that I still know what it feels like to be loved.

As an Alzheimer’s Advocate, I plan on continuing my Alzheimer’s Advocacy, educating, updating and sharing my personal journey to anyone wanting or willing to listen.
I don’t want our sons and daughters, or their children, or their children to have to live with this horrific disease known as Alzheimer’s!

Until Next Time,
PEACE!!!
B


a-charlie-brown-christmasIf you’re a Baby Boomer like myself, you will probably recognize the photos from “A Charlie Brown Christmas.” For me, it brings back memories of happy, simpler times. That’s where Charlie Brown lived … in the simple times. Nothing really stopped him from doing the things he wanted to do no matter what others thought. He saw the beauty in things others didn’t. He was hopeful and did things in his own time. He was trusting … sometimes, too trusting.

Charlie Brown was just a simple guy who always saw the good in people, never judging, never holding a grudge. He’s described as, “Good ol’ Charlie Brown” is the lovable loser in the zig-zag t-shirt—the kid who never gives up (even though he almost never wins). He manages the world’s worst baseball team…yet shows up for every game. He can’t muster the courage to talk to the Little Red-Haired girl…yet keeps hoping. Even though he gets grief from his friends, his kite-eating tree, even his own dog, Charlie Brown remains the stalwart hero.”
CB Football
He is forever hopeful that Lucy won’t move the football. I think most of us wishes it will happen one day, so we cheer him on that he will, get to kick the ball at least once . . . but not this time. Lucy does what she ALWAYS does. She moves the ball away and Charlie Brown lands flat on his back.

We weren’t really surprised were we?
Charlie Brown was! As I said before, he always sees the good in people and he trusts they will not do anything to cause him harm. He trusts Lucy time after time. Why? Because that’s who he is.

(Just so you know, this post is not about Charlie Brown, but, you’ll understand in a little bit.)

Image result for charlie brown christmas tree

Lastly, there’s the Charlie Brown Christmas Tree that, in his mind, was the perfect tree. Of course, no one else but Charlie Brown saw the beauty of the simple little tree, and, as usual, they all laughed and made fun of the tree as well as him, “The Blockhead”, and hurt his feelings . . . AGAIN!

Maybe it was the Christmas Season that got to them, for this time, they saw just how much they had hurt Charlie Brown. 

Image result for charlie brown christmas treeWhen they saw the saddened little boy walk away as if he didn’t have a friend in the world, Linus anchored the little tree with his blanket and all Charlie Brown’s friends took the lights and decorations off Snoopy’s house and placed them on the tree. They brought Charlie Brown back to show him what they had done and he smiled so big. As with every Charlie Brown cartoon, he was accepted, everyone was smiling and singing and for a brief moment, everything was right with the world.

Now as a I said earlier, this is not about Charlie Brown and his friends. This is actually about reality in “Dementia World.”

Those of us who are living with a Dementia-Related illness sometimes feel like Charlie Brown. We have those days when we feel forgotten, dismissed, or if we don’t really matter. We sometimes come across people who we believe are our friends but turn out to be a “so-called friend” who pretend to have our best interest at heart, when all they are interested in is furthering themselves by using us to get there.

The feelings of abandonment and distrust we experience are not just about our friends but also about some  members of our family who no longer talk to us for whatever reason. We try our hardest to remember what we may have done to put this distance between us for we are certain (like Charlie Brown) it must’ve been something we did. When we come to the realization that it wasn’t us, it doesn’t feel any better.

When we are having a good day, we feel there is nothing we can’t do, so we take advantage of those days. We use our clarity to do something our minds would not allow us to do the day before, that is, if we remember the day before. Sometimes we do remember and we rejoice for the small victories. Sometimes we don’t and it’s OK because we know we’re not going to remember everything so we carry on the best we can.

Then there are the really tough days, the days when we go to kick the ball, and the ball is snatched away. On those days, we may literally fall on our backs, on our butts, hurting ourselves figuratively and mentally.  

If you’re thinking my point here is to make you feel sorry for me or for the millions of others who, like me, are living with Alzheimer’s or other Dementia- Related Illnesses you would be incorrect. Like Charlie Brown, we don’t give up . . . we CAN’T give up. Giving up is not an option. Giving up is an end and I can’t speak for everyone but I can speak for myself, I still have too much to do and I’M NOT READY TO GIVE UP!

What we do want are your friendships. We want your love. We want your understanding. This Disease is not something we asked for, this is not something we brought on ourselves, this is something that just happened to us and we are trying to make the best of the situation. 

Since this ’tis the Season, I ask you that if you know someone who is Living with a Dementia-Related Illness or any type of illness for that matter, please:

  • don’t assume we are receiving phone calls, letters, e-mails, Christmas Cards, etc. for you would probably be mistaken.
  • don’t assume we are being visited by friends and /or family for we may not be
  • don’t assume a gift card or other monetary gifts would not be appreciated
  • don’t assume anything about anyone, for you don’t know the whole story
  • the one thing you CAN assume is, “WE ARE STILL LIVING . . . WE ARE NOT GIVING UP . . . WE STILL MATTER . . . WE ARE STILL HERE!

I would like to take this opportunity to wish YOU, yes YOU, a Very Merry Christmas!

Until Next Time . . . 
PEACE (on Earth and good will towards men)

B

What Happened to our Society?

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As a Baby Boomer, (born in 1960) I grew up respecting my elders. Elders were basically anyone of the adult age. This meant Teachers, Bus Drivers, Law Enforcement Officers, Mail Carriers, Firefighters, anyone and everyone who was an adult. It didn’t matter who the person was, YOU RESPECTED THEM. If you didn’t, well, word would get back to your parents and they would “gently remind you” about the respect issue.

Fast Forward to today. What happened to RESPECT? You would be hard pressed to find a young child or a teenager addressing an adult as “Sir or Ma’am.” Instead you get “YEAH” or “NO” or nothing because they are texting or taking a Selfie and are too busy to answer. Somewhere along the line, RESPECT flew out the window.

Maybe I’m just old. At 58 years old, I don’t really feel old but in the eyes of a teenager or toddler, I’m ancient. My hair and beard is gray/white, my walk has slowed a bit, I have to rest a bit more than what I used to, so I can see where it may appear I am old, but unless I am spoken to rather than just judged on my appearance, how will anyone know who I am and what I can share.

I’m writing this because there is a huge issue in our society right now regarding ageism.
Ageism is described as : stereotyping of and discrimination against individuals or groups on the basis of their age. This may be casual or systematic. The term was coined in 1969 by Robert Neil Butler to describe discrimination against seniors, and patterned on sexism and racism.

Today, the term is often applied to any type of age-based discrimination, whether it involves prejudice against children, teenagers, adults, or senior citizens.
Throw in Alzheimer’s Disease and other Dementia-Related Illnesses and that just deepens the issue.

Although the term was coined in 1969, I haven’t really noticed the trend until recently. I started wondering, is it because I am growing older (almost 60)  or is it because I have Alzheimer’s Disease? Is it a combination of both?

I read an article this morning by my friend and Pioneer Network President & CEO Penny Cook, entitled, A New Culture of Aging — Making it HappenIn her article she states, “The first step of changing perception is creating awareness.” Creating awareness is something I know  a lot about.

I see and hear, on a daily basis, how those of us who are living with a Dementia-Related Illness are treated. As much as we would like, we are not treated as we were before our diagnosis.
Our diagnosis becomes a label.
That label carries with it, Stigmatization.
Stigmatization carries negative connotations.

I REFUSE TO BE LABELED!!!

So, I use my Alzheimer’s: Up Close presentation to educate and share awareness. It showcases that just because we reach a certain age or just because we have some sort of “cognitive difficulty” doesn’t mean we don’t matter. On the contrary. We probably matter more NOW than what we ever did.

The reason being, we can talk about:

  • what we want/need instead of assuming you already know
  • seeing us and not our disease
  • seeing us and not our age or appearance
  • connecting with us and not shoving us in a corner
  • DON’T pre-judge

There are always 2 sides . . . what we think and what you may think.
Those sides may differ slightly or dramatically but you would never know unless you ask. Responsibility as to what we can do and what we expect from others allow our voices to be heard.

In another article I read, written by Kendra Cherry for “verywell Mind”  “How Does Ageism Impact More Than Just Older Adults?”  it states: “In one study published in a 2013 issue of The Gerontologist, researchers looked at how older people were represented in Facebook groups. They found 84 groups devoted to the topic of older adults, but most of these groups had been created by people in their 20s. Nearly 75 percent of the groups existed to criticize older people and nearly 40 percent advocated banning them from activities such as driving and shopping.”

This is disturbing that individuals, who know nothing about us, are passing judgement on us, making assumptions about us and criticizing us because we have reached a certain age. Everyone is entitled to their own opinion, however, using those opinions with no knowledge as to who these individual are is ludicrous. It is also a classic example of Ageism.

I could probably go on forever, citing more examples, quoting more articles, but I think you get the picture.

I may not be able to end Ageism today, but I sure can (and will) continue to make some noise about it. I’m a firm believer that everyone is entitled to their own opinion, however,  I will continue sharing awareness and educating that NO ONE has the right to pass judgment on another based on race, nationality, sexuality, age, as well as other “ism’s.” If you want to know more, don’t opinionate, just ask. We’ll be happy to talk with you!

PEACE!
Brian LeBlanc
International Alzheimer’s Advocate
“I have Alzheimer’s, BUT . . . it DOESN’T have me!

Thank You!

I’ve been writing about my Alzheimer’s Journey for a number of years now and I just realized I’ve never thanked all of you for your encouragement and support. Your comments and good wishes are appreciated more than you know, especially on my rough days.

When we are faced with challenges, we have choices to make:

A) bury our head in the sand and hope it goes away…

or

B) face the challenge head on

We all know Alzheimer’s Disease doesn’t “go away”. No matter how hard we fight, no matter how hard I fight, I know in the end … well, I don’t think about the end. I stay in the here and now, moving forward with my Alzheimer’s Mission.

I’m quoted as saying, “this is not how I envisioned my retired life to be but it is what it is.” Being that I will turn 58 years old in about 2 weeks, I started thinking about what I’ve accomplished in those years. What I realized is, apart from watching the birth of my son, what I’m doing right now is the most meaningful.

I don’t like the fact that Alzheimer’s led me to this realization, but, as I’ve said before, “it is what it is”. My time, my energy, my focus is finding ways to live as well as I can, utilizing techniques, technology and time.

I have vowed to use my voice for as long as I am able to speak on behalf of those who no longer have a voice and in memory of those who are no longer with us.

Giving up will NEVER be an option!

B

Thanks again for your continued support, good wishes, and friendship!

GoFundMe Alzheimer’s Awareness Mission

The Journey is Not Always as it Seems!

Being today is the last Friday in June, also the last Friday of Alzheimer’s and Brain Awareness Month, I knew I wanted to write about something but I didn’t know what that “something” was going to be. A trip to the grocery store today gave me my inspiration.

For those of you who may not know, I now live alone in an apartment. Although I still have a drivers license, I don’t have a vehicle for I can’t afford one (insurance, gas, maintenance, etc) so I found an apartment complex that is within walking distance to everything I need.

When I got up this morning, my intention was to head to Winn Dixie for I needed a few things, however, my brain had other plans and the fog rolled in. (For those of you who don’t know what I’m talking about, you may want to see one of my earlier blog posts Fog, It’s Not Just a Weather Condition.) 

When in a “Foggy State” not only is my brain not operating at full capacity but my balance is a bit off. The last thing I wanted to happen is to fall either while walking to or from the grocery, so, I remained inside.

I busied myself with other things, completely forgetting I needed to go to the grocery. Opening the refrigerator to fix lunch, I suddenly realized, I was supposed to go to the grocery. Forgetting things like this used to make me angry but now, they make me laugh at myself. It took me several years to realize it was no one’s fault other than my own when I forget things. Then after a couple of additional years, it wasn’t my fault, it was Alzheimer’s’ fault! (I’ve always been a slow learner).

I started getting ready, making sure I had my wallet, my phone, and my backpack and off I went. The walk is only about a 1/2 mile each way so I get my exercise in while getting my errands done. Another thing I’ve learned it’s easier to use a backpack to carry my groceries than it is to carry the plastic bags that can easily burst or rip. (I learned that the hard way.)

With my shopping done, I packed my backpack but couldn’t fit everything so I had to carry 2 grocery bags. I made my way across the parking lot and was about to make my way to the sidewalk when I car came up behind me.

From what I could see, there were 3 teenagers in the car. There may have been 1 other but I don’t really know or care. The driver and the kid seated directly behind him started shouting obscenities at me. I didn’t understand what I had done. It wasn’t like I crossed in front of them for they had come up behind me. I just couldn’t understand what was happening.

Then I heard the words, “you homeless f***er!” “Get a job you piece of s**t!” “Go beg somewhere else you blah, blah, blah!” They just kept on screaming, cursing, yelling and laughing at me. I then realized I was approaching an area where there are people usually using that spot, holding signs asking for food and or money. Many of them have backpacks and an assortment of bags with them. I guess they thought I was making my way to that spot to ask for food and/or money.

I didn’t know how to feel. I was being verbally assaulted because I was mistaken for someone who, they thought, was below them, someone who didn’t fit their description of an upstanding member of society, someone who, in their words, “you f***ing BUM!”

I started walking again and they continued cursing and yelling but the traffic started to drown them out. They made their way out of the parking lot and made a point to slow down as they passed me on the street to continue shouting at me. I just ignored them and made my way home.

Once I got home, I unpacked my bags and backpack and then I got angry. I wasn’t angry at those little punks who probably thought they got to me and made me feel bad. I was angry at something else. I was angry at my Alzheimer’s.

If I didn’t have Alzheimer’s Disease, I’d still be working, making A LOT more money than my monthly Social Security Disability.
I’d still be driving, able to get where I needed/wanted to go, rain or shine.
I’d probably still have my network of friends to interact with.

Thinking of these things, I was getting angrier and angrier . . . really pissed off!
Then a notification went off on my phone. It was from someone on Facebook. I didn’t know this person but they were thanking me for opening up about my Alzheimer’s Life. They had read a few of my blog posts as well as my Facebook posts and they thanked me for helping them better understand their Mother, who is currently living with Alzheimer’s.

As fast as the anger came upon me, calmness replaced it. The words, my own words, the words I now say at the end of my presentation came flowing into my brain with such clarity . . . (I still had to get a copy of my presentation to make sure I had the exact verbiage)

“Regardless of whether you have an illness, regardless of your gender, regardless of your race, the way you are perceived by others, although it may be hard to take at times, it’s not something you need to concern yourself with. Look at it as a learning experience you can use later in life and a teaching experience you can use today.

For those who use words or actions against you, it’s because they don’t understand. You know who you are. You know your abilities.

Everything you’ve been through in your life . . . every success, every failure, prepares you for what lies ahead.

It’s why I’m not embarrassed to stand before you or anyone for that matter and say, “I HAVE ALZHEIMER’S DISEASE!” I don’t do it as a way of looking for pity and sympathy, I do it as a way of saying, “HEY! Look at me. I’m only 57 years old, I look somewhat normal but I have this disease.”

It starts a conversation. It’s my way of advocating, spreading the word, making aware, or whatever you want to call it.  It is now my life mission!”

Everything in life happens for a reason. We may not understand the why’s but accepting things makes it more manageable.

Until next time,
PEACE!
B