ASSETS OR LIABILITIES???

I came across a post today that disturbed me.
It read: A tough conversation — when do older people stop being an asset and start being a liability or do they ever?

My question is, as an individual “LIVING with Alzheimer’s Disease and now, Vascular Dementia, and approaching my 60’s, am I going to be considered a liability by some? Will the public see me as well as others like me as a “Diseased”, “Memory-Impaired” “Demented” person?

How can a person all of a sudden go from an individual to a liability? Is that how the majority of the world sees us? If they do, they are very, very, sadly mistaken.

Just because I have Dementia-Related Illnesses does not mean that I cease to contribute to Society. On the contrary. It is my opinion that I contribute more now than what I ever did when I was employed. In 2013, my employer dismissed me for, what he claimed, was not carrying out my duties to the fullest of my ability. Although I was upset at the time, when I was diagnosed with Alzheimer’s a year later, he may have been correct. I now understand and accept that decision however, it didn’t mean that I was a liability.

My Grandfather and my Mother both Lived with Alzheimer’s but I, nor anyone I know, ever looked upon them as a liability.
My Father Lived with Vascular Dementia. Again, no one I know of looked at him as a liability.

I can’t speak for everyone so I won’t try. I can speak for myself and others I know very well that living with a Dementia-Related Illness, or any type of illness for that matter, is hard . . . very hard. It’s frustrating, not just for ourselves but for our families, our loved ones, and our friends. They have a front-row seat to our frustrations, confusion, and anger but in this case, the front row is not necessarily the best seat in the house.

I have so many friends and acquaintances who have a Dementia-Related Illness, who are CarePartners for their loved ones, who are Executives, CEO’s and Members of Dementia and Elderly Organizations and Communities. They, like me, as well as thousands of others,  do not look upon Individuals with Dementia-Related Illnesses or any type of Illness / Disability as a Liability. They see US, not our Disabilities. WE see us as Individuals. We are Person-Centered Focused.

Never should anyone, no matter age or gender, be looked upon as a Liability. No one is perfect and no one ever will be. We are human beings and no matter how perfect we strive to be, we never will be, so we strive to be the best selves we can be.
If that’s not enough for others, oh well!

Until next time,
PEACE

B

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

Hope for the Future?

Scanning the headlines under the topics of Alzheimer’s, Alzheimer’s Disease, Dementia and other related topics, I see a trend. The trend is for the future and that’s awesome. My hope is that no one will have to go through what I and millions of others have gone through and are going through now.  Trust me when I say, you DON’T want to experience Alzheimer’s Disease.

This is why, towards the end of every single presentation, I make this statement, “I made a vow to myself to share Alzheimer’s Education and Awareness for as long as I am able, in order to benefit those that come after me. I do this in the memory of the loved ones I have already lost, for the new found friends I have recently lost, and for the friends and loved ones I will lose.”

Scouring the headlines, as I do most every day, I see  I see things like:

  • Eat Healthy  (newsflash … we’ve been told to eat healthy for decades now. People have followed these programs exactly as they were laid. Some people still developed Alzheimer’s. My Mother ate healthy all her life, measuring her food on a food scale and eating her veggies and she still died with Alzheimer’s Disease.)
  • Excessive alcohol use linked to early-onset dementia risk (I have yet to see an Alzheimer’s / Dementia health warning posted outside a bar, restaurant, sports stadium or any other establishment that serves liquor. Even if these types of postings would start popping up, do you think it would make a difference?) 

  • Head injuries may lead to early Alzheimer’s (The NFL has made a difference by imposing new rules and bringing Dementia / CTE awareness to the forefront. However, pay close attention to the sidelines as to when a player makes a great play. Everyone gathers around the player and SLAPS HIM IN THE HEAD! and it’s not a little soft tap, and it’s not just once. Maybe they should look into that also. Just sayin’.
  • How daytime sleepiness may raise Alzheimer’s risk (This is my favorite. Do you know how many people may decide they need a nap during the middle of the day because they are tired but don’t do it now because they feel it may lead to Alzheimer’s Disease? So instead, to relax, they head to their favorite Sports Bar and have a beer.) 

There are a lot of things floating around right now appearing in the News Feeds, but in my humble opinion, it’s all speculation. This headline sort of summed it up for me and is also the most honest headline I’ve seen in a while:
Alzheimer’s Drug Trials Keep Failing —
It May Be Because We Don’t Understand the Disease

There is hope though. While Pfizer made the decision to back out of the Alzheimer’s Drug Research arena, enter Bill Gates and Warren Buffett, each contributing $100,000,000. It’s refreshing to see individuals like Gates and Buffett step up and do something like this, not for the glory but for the good of humankind.

Living Well with Alzheimer’s Disease is hard but as the saying goes, nothing worthwhile ever comes easy. Throw in the fact that there is no way to prevent it from developing, to stop the progression or to cure it, it has not stopped most of us from living somewhat of a positive, purposeful life.
It has also not stopped the countless number of researchers, drug companies, and benefactors from doing what they do each and every day to search for a cure.

I am confident that one day, there will be a cure. Before that, a way to stop the progression of the disease. Before or after that, a way to prevent from developing. Finally, after that . . . THE CURE.

Until then, I’m just going to continue living, as best I can, day by day, in the moment.

Until next time . . . PEACE!
B

Alzheimer’s . . . from the Daughter / Dad Perspective

In honor of World Alzheimer’s Month, my daughter and I were asked to write a few words as to what it’s like to be a Dad with Alzheimer’s and a Daughter of a Dad with Alzheimer’s. Being today is World Alzheimer’s Day, here are our words, our perspectives, our truths.
My hope is that this brings an awareness, some clarity and raw honesty of how Alzheimer’s not only affects the individual with the disease but the family as a whole.  I also hope this shows that Living with Alzheimer’s is still “LIVING”, still “FEELING LOVE”, still being “ALIVE INSIDE!”
B

IMG_2646

Daughter of Dad with Alzheimer’s, from HER Perspective

Being the daughter of a parent living with Alzheimer’s is challenging, unpredictable, and the best way to learn patience. There comes a point where you find yourself, a child, not only wanting to help your parent with the disease, but also being left with no other option but to help. Luckily it doesn’t happen all at once.

It starts with helping them retrace their steps to finding their keys that they put in the fridge, to watching them struggle for a few minutes to find their car in the parking lot, to wondering if they know where a store is five minutes away from home, and then ultimately them not being able to drive anymore at all and having their license taken away. It’s a slow and steady progression, but it still hurts me all the same.

Being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind. Nothing prepares you for that, and when the time comes you have to just accept it and take it with a grain of salt. Conversations are a little harder to have, dinners aren’t as cheerful as they once were and outings have become progressively more stressful. But at the end of the day despite all the challenges, the unpredictable circumstances, and my patience running a little too thin…I still love my step dad, and I know he still loves me. 

Dad, with Alzheimer’s, of Daughter from HIS perspective

Being a Dad to a daughter is special, like a gift. Throw in Alzheimer’s and it complicates the entire situation. Her helping to care for me while I live with Alzheimer’s was nowhere on my radar, but she just jumped in and never looked back.

At 22 years old, she has her own life and will not be here forever. My questions are, will I be around or aware to see her married, become a mother, to hold my first Grandchild? Will I be there to celebrate those moments with her?

I know she tires of me asking questions she has answered before but she doesn’t bat an eye. She just answers. When she comes home at the end of her work day/night, she sits with me for a few moments, asking me questions about my day that most of the time I can’t answer but somehow, she already knows the answers and helps me fill in the blanks. Funny thing is, I don’t always recognize when she does this . . . but she knows, and it breaks my heart.

I realize I must sound the same as my Mother did (she also had Alzheimer’s) when I asked her questions. I’m sure, as confused as I sound, she still treats me with the same love and kindness as I treated my Mother. I couldn’t ask for anything more loving than that.

She states, “being the daughter of a parent with Alzheimer’s is having a front row seat to watching someone so close to you literally lose their mind.” I don’t know anyone who would want that for any of their children. I know I didn’t and I also know my daughter doesn’t have to do what she does, day in and day out, but she does it.

My one hope is that she is far, far away when I am in need of the type of care I’ll need in the end. Until then, I try to cherish each kiss on the cheek, each moment, no matter how big, small or insignificant we share.​

#WAM2017  #WorldAlzheimersDay2017

Until next time . . .
PEACE!

B

 

“Weighing In” on a Few Things

First, let’s do some housekeeping:

  1. Yes, I still have Alzheimer’s Disease (and no, I’m still not “Faking It.”)
  2. I know everyone wishes for (me as well as everyone else with a Dementia-Related Illness) a cure/prevention/stop of progression (no one wishes that more than me) but there’s still not any of these “yet”, so I live each day as best I can, one moment at a time.
  3. I’m still me and “on most days” you can still talk, joke and laugh with me and I will talk, joke and laugh right back with you.
  4. On the “not-so-good-days”, well let’s just say I have them but don’t remember too much about them, which, when you look at it from my point of view, is actually a fortunate occurrence. 

That should bring everyone up to date, so let’s move on.

I don’t get out too much anymore being I am no longer able to drive. I have to depend on my family and some very close acquaintances to take me wherever I need/want to go. The “need to go” far outweighs the “want to go” because I don’t like asking anyone to take me anywhere. I do have the option to “UBER” anywhere I want to go, but I don’t usually opt for that either.

When I do get out and run into people I know, it’s nice to see them. It just reminds of years ago when I was out and about, being part of the social scene. The only difference now is the way I am greeted. (Please don’t think I am being disrespectful or ungrateful for what I’m about to say, just bear with me.) Now, when people see me, they come up and they get a sort of sad expression on their face and they say, in a very caring tone, “Hey, how are you? You look GREAT!!!” The first thing that pops into my mind is, “WOW! I must have looked like crap years ago. What I didn’t realize is the transformation I have gone through.

Let me explain:
One of the changes that comes with Alzheimer’s Disease and one that I am now experiencing is a change in my taste buds as well as in the way I smell things.

Here are 2 articles I found which may be helpful for you to understand . . . 

How Dementia Tampers With Taste Buds
https://www.everydayhealth.com/alzheimers/how-dementia-tampers-with-taste-buds.aspx
Food, Eating and Alzheimer’s
https://www.alz.org/care/alzheimers-food-eating.asp


Putting 2 and 2 together, when you can’t smell and/or taste the food you are eating, you tend not to enjoy it very much and you also tend not to eat too much.
Growing up in New Orleans, I ate some of the best food in the world . . . and a lot of it. At my highest weight, I was 285lbs. I lost a significant amount of weight and usually kept it between 240lbs and 210lbs, sometimes dipping below, sometimes going a bit higher.

Recently, I did notice that my clothes were not fitting me like they used to. Some were literally falling off of me. What I didn’t realize, until I started seeing recent photos of me is how much weight I had lost. Then I stepped on the scale . . . I saw it steadily drop from 180 to 170 to 160 and now to 155lbs. (I have no recollection as to the last time I was even close to 150lbs but i think it was around the time of my birth.)

I can still recall my Mother taking me to JoAnn’s Husky Shop in New Orleans to shop for clothes. I wanted to wear “normal clothes” but my body had other plans, which usually included the delicious, mouthwatering donuts and pastries from Haydels Bakery and McKenzie’s. I can still taste those delicious buttermilk drops, hot glazed donuts and every pastry you could ever imagine. It was a little fat boys dream for they were both in a “bicycle ride” distance. (All that sugar could be why I have Type II Diabetes today, but I digress.)

ANYWAYS, back to the present . . . I started looking at recent photos of me wearing clothes that were the correct size for me and THAT is when it really hit me.

(Here are 2 photos I took right after my walk this morning August 23rd, 2017, in case any of you haven’t seen me in a while.
And yes, I know I have NO BUTT, but even at my heaviest, I still had NO BUTT! Thanks Dad!

The reason I posted these photos is because if someone hasn’t seen me in a long time and they see me now, looking like I do, no wonder I’m greeted like I am. I would probably do the same if I saw me.

Don’t worry, I still eat, I just don’t eat nearly as much as I used to. I eat healthier food,  I don’t snack a lot and now I’m walking every day (or when it’s not raining or due to scheduling conflicts) .

What I’m trying to say is, I’m sorry if I thought badly of anyone for having that sad tone in their voice or for telling me I “look great” which is what you tell a sick person to make them feel better about the themselves. Ironically, looking at me now and looking at me a year ago, I kinda-sorta do look sick.

I guess another reason I didn’t see what others see is because in my mind, I’m still me, or at least a version of me.
I know I’m not as sharp as I used to be.
I know I can’t remember too much from yesterday or the day before.
I know I still have to rely on electronic devices to tell me what to do and when to do it.
I know there are things I can no longer do, but I also know why I think like I do and I also know you’ve heard it before, but it’s what I live by . . .

I Have Alzheimer’s BUT . . . it Doesn’t Have Me
for I Don’t Allow it to Define Who I Am!

That’s it for now.
Until Next Time . . .
B

PEACE!!!

 

So, Where’s the Alzheimer’s Awareness?

“Living with Alzheimer’s is not the way I wanted to spend my retirement, however, I’ve made the decision to play the cards I’ve been dealt. Although the cards are not stacked in my favor, I’m still going to bet on the positive.” ~bpl

June, the sixth month of the year, the halfway point of 2017, the month in which we celebrate Father’s Day, my wife’s birthday and generally, Summer gets into full swing.
Oh, yeah, it’s also “Alzheimer’s & Brain Awareness Month”, although looking at news outlets, you would never know. 

This morning, with Dallas, my faithful companion in my lap, my coffee in one hand and my Atkins Breakfast Bar in the other, I settled into my recliner to watch my Favorite Show, “CBS Sunday Morning with Jane Pauley.” This show is my go to Sunday morning show for I’ve been watching it since it’s inception in 1979. My mother (Norma LeBlanc, 1929-2015, Alzheimer’s) watched it religiously, which is how I grew to love the show.

I was a little put off this morning. Being the first show in the month of June, there was no mention of June being “Alzheimer’s & Brain Awareness Month.” I thought for sure there would be “some mention” of it, but it was nowhere to be found. I started flipping through the channels on the other morning shows and found nothing. I “Googled” the major networks and looked at their news feeds . . . NOTHING.

Before anyone says anything, yes, I am aware that the Terrorist attack in London took the top spot and wouldn’t expect any other news item to be at the forefront. My heart goes out to those who were injured and especially to the individuals (and their families) who lost their lives in a senseless manner. So very sad. 

But on this Sunday, like any other Sunday, those of us who advocate on a daily basis still soldiered on, screaming at the top of our lungs, (in a Facebook, Twitter, Instagram, LinkedIn sort of way) sharing Alzheimer’s Awareness and Education. But it was business as usual. NO ALZHEIMER’S SUNDAY STORIES!

Instead, CBS Sunday Morning ran a story on HIV/AIDS, which I’m glad they at least paid attention to one of the diseases that takes lives too early. I’m also thankful for the advances in HIV/AIDS research. I can only hope for the day Alzheimer’s Disease is on the same playing field.

You may think that since I have been Living with Alzheimer’s Disease since 2014 (diagnosed in 2014 but according to my Neurologist,  probably living with it for up to 10 years prior) that I’m whining. Well yeah, maybe I am a little.

I won’t speak for anyone else, however, I know there are many that will agree with me that Alzheimer’s, in my opinion, has been treated like the red-headed step-child of the disease world. Although it is the 6th leading cause of death when it comes to diseases, it has been severely underfunded when it comes to research dollars. In the last couple of months, Alzheimer’s research dollars finally reached the BILLION DOLLAR MARK, and it was just barely over the BILLION DOLLAR mark and still far behind other diseases.

Part of the reason why? Alzheimer’s is one of the most misunderstood and complex diseases there is.
Imagine how it would be if there was a way to stop the progression, prevent it from developing or even cure it. I bet the $$$ would be flowing.

I just wish Alzheimer’s was given as much attention as others.
Take Breast Cancer for instance. When November rolls around, for the very first NFL Football game that month, there is pink everywhere. On NBC’s Today Show, the male anchors take part in “No Shave November” campaign.

Alzheimer’s has June 21st, “The Longest Day”.
According to The Alzheimer’s Association:

“The Longest Day is all about love.
Love for all those affected by Alzheimer’s disease.
On the summer solstice, team up with the Alzheimer’s Association
and select any activity you love — or an activity loved by those affected —
to help end Alzheimer’s. Together, we will raise funds and awareness
for care and support while advancing research toward
the first survivor of Alzheimer’s.”

The Longest Day is a great idea, do something you love, in memory of someone who had Alzheimer’s or with someone that has Alzheimer’s Disease and raise money for the cause. But what about the other 364 days of the year. 
OK, 363 days of the year for we have the “Walk to END ALZHEIMER’s“. 

Professional sports such as Basketball and Baseball take place in June. Why don’t we tap into those organizations so everyone will see PURPLE everywhere they look. I give BIG PROPS to our Double-A Baseball Team, The Pensacola Blue Wahoo’s (farm team of the Cinicinatti Reds) for working with us (The ALZ Assoc of the AL/FL Panhandle) to hold an Alzheimer’s Fund Raiser called, “Paint the Park Purple.”  The event is June 12th if you would like to join us. (contact me if you would like information)

Also, Seth and Lauren Rogen do an awesome job of bringing Alzheimer’s to the forefront with their “Hilarity for Charity” event. (Hilarity for Charity® (HFC) is a movement led by Seth Rogen and Lauren Miller Rogen to inspire change and raise awareness of Alzheimer’s disease among the millennial generation. Lauren’s Mother was diagnosed at the age of 55).

I still feel we are falling short when it comes to awareness. Look at Social Media! I can post, and others can post, all types of Alzheimer’s Awareness stories, photos, articles, etc. and get “some” traction, but post a pic of a laughing baby, a drunk person falling down stairs, an adorable pet of any kind, or a nude person and it gets “A BILLION” more likes and shares than our Alzheimer’s Awareness posts. I’m not sure what that says about society but I just know it gets more likes than the stuff I post.

And to make matters worse, when we, those of us who Advocate publicly, are asked to speak at Alzheimer’s functions, we are consistently told, “well, you don’t look like you have Alzheimer’s.” I know I’ve said this before but, unless we are sitting in a wheelchair, not able to do anything for ourselves, it’s hard for others to believe we actually have Alzheimer’s. After all, we are walking, talking and living a life that’s hard for society to comprehend.

So, what do we do? I guess, for the time being, we continue doing what we have been doing. I know through my own Alzheimer’s Advocacy, I’m not going to reach every single person, but if I reach at leat 1, I’m doing what I set out to do. Maybe that’s what it’s going to take. Reach 1 person at a time, one day a time. I guess I can do that because time is something I have a lot of right now. I may as well use it constructively.

Until next time . . .
PEACE!

B

 

Part II So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

Part II      So . . . You Think I’m Faking my Alzheimer’s Disease, do you?

After writing the first post earlier in the week, I received so many comments here, on Facebook, Messenger, Twitter, texts and e-mail that were all very positive. I appreciated everything each of you had to say. What I came to realize in conversations with some folks was, I wasn’t alone of being accused of FAKING a Dementia-Related Illness. It broke my heart that so many other people have gone through the same scenario I did. Then, I received a phone call from a good friend of mine (who also doesn’t look like or act like he has Alzheimer’s). We talked for a long time and we discussed so many things related to my recent blog post. I knew then that I was going to have to do a Part II based upon the information we discussed. So, without further ado . . .

PART II (hey, that rhymed with ado! It’s amazing what a person with Alzheimer’s can do!)

I will start with a quote from the Invisible Disabilities Association

“In general, the term disability is often used to describe an ongoing physical challenge. This could be a bump in life that can be well managed or a mountain that creates serious changes and loss. Either way, this term should not be used to describe a person as weaker or lesser than anyone else! Every person has a purpose, special uniqueness, and value, no matter what hurdles they may face.

In addition, just because a person has a disability, does not mean they are disabled. Many living with these challenges are still fully active in their work, families, sports or hobbies. Some with disabilities are able to work full or part time but struggle to get through their day, with little or no energy for other things. Others are unable to maintain gainful or substantial employment due to their disability, have trouble with daily living activities and/or need assistance with their care.”

Facebook: https://www.facebook.com/InvisibleDisabilities/

Twitter: @InvDisabilities
Web: https://invisibledisabilities.org

When I wrote Part I, I had no knowledge of the Invisible Disabilities Association which is why I listed their information above. You should really go take a look!

I also failed to mention in Part 1 that I have Type II Diabetes and Heart Disease (3 heart attacks, 2 stents). I mention these 2 diseases since they are Dementia-Related Illnesses. Along with the genetics from my Great-Grandmother, Maternal Grandfather and Mother, (all who died with Alzheimer’s) you throw my Father into the mix (who died with Vascular Dementia) and he, along with my Mother, passed along the ApoE4 protein to me, the chances of me NOT developing Alzheimer’s were pretty slim.  

Even with all that, I’m faking. 

I’ve also had about a dozen surgeries in my life yet none of these issues EVER came into question from anyone. No one ever said to me, “You don’t look like you have Diabetes” or “You don’t look like you’ve had 3 heart attacks” or You don’t lok like you’ve had that many surgeries.”
SO, WHY THE ACCUSATIONS OF FAKING ALZHEIMER’S DISEASE??? 

I shake my head in disbelief for I wouldn’t even know HOW to fake Alzheimer’s.

To put it plainly, living with this disease is no picnic. It really sucks.
The hardest part of Living with Alzheimer’s, at least for me, is knowing you have a fatal disease that one day will contribute to your death. However, you can’t think about it all the time for it’s really a depressing subject. So, you suck it up because the last thing you want to do is to affect your family in any type of negative way.  But remember, we have Alzheimer’s and we forget and, unbeknownst to us, we do bring it up, and that sucks even worse.

I think I’ve said this before but it’s worth saying again . . .
“I don’t try to paint a rosy picture of Living with Alzheimer’s because there’s nothing rosy about it.”
It would be an insult to myself as well as to anyone who is currently living with the Disease or who’s life has already ended because of the Disease if I tried to make it sound any other way than what it actually is.

“But you LOOK good”
“You just want attention”
“But you don’t LOOK sick”

https://invisbledisabilities.org


How many times have we heard this? I know this statement has been uttered to individuals with all types of diseases that can’t be seen. You see, when someone breaks their arm or leg, they get a cast. 
If someone cuts themselves, they get a bandage. If someone has surgeries, they have scars.

Alzheimer’s is invisible. It can’t really be seen, however, it can be seen through our unsteady actions, through the way we sometimes stutter while trying to find our words, or, during conversations when we start repeating ourselves.

Then, if they’re paying attention, they know something isn’t right. 

When I first started advocating, I actually talked about Alzheimer’s being invisible. I told my audience, “it would be easier if we all dressed in purple and had a cool-looking cape with a big A on it. Besides looking “hero-ish” people would then know we have Alzheimer’s.” (Based on that is where I came up with my Twitter name “The ALZ Guy”. I pictured myself standing on a stage wearing my purple, Super Hero-ish costume, and starting my presentation with my hands on my hips, saying in my best Batman voice, “I’M ALZHEIMER’S GUY!”
OK, now that you know I have a very vivid imagination, I’ll move on.

I guess what I’m trying to say is, you can’t control what other people think or what other people say. When it comes to Alzheimer’s or other Dementia-Related Illnesses, there is so much that is unknown, people don’t know how to react.
Sometimes they will say negative things for they think are correct or factual.
Sometimes they will say negative things because they can’t/won’t accept the truth that you have a fatal disease.
And sadly, sometimes they will say negative things just out of meanness or jealousy, you know, just because they think you’re faking it just to get attention.

The only thing you are able to control in this situation is you. People can say what they want but it’s up to you whether or not you let the words harm you. Don’t get me wrong, the words sting, but, probably the one good thing about those of us living with Dementia,
WE’LL FORGET WHAT THEY SAID . . . unless of course, we’re faking!

Until Next Time,

PEACE
B