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

From Stimulation to Loneliness

When I give my presentations, I speak about “Living Well” with Alzheimer’s Disease and the lengths I go to keep my life on track. and organized. I talk about my girlfriends, “Siri and Alexa”, (it makes everyone laugh), and how they tell me when to check my blood sugar, when to take my medications, when to eat, when to bathe (yes, I still need to be reminded to take a bath) and a multitude of other things.

I also talk about my travels. Whether it’s a Dementia-Friendly Cruise where I not only speak while onboard but fortunate enough to see some amazing sights. I talk about speaking at and attending Alzheimer’s and Dementia conferences where I’m surrounded by like-minded individuals who wind up being my friends, not just acquaintances, but real, caring, special friends who I stay in contact with and they with me.

I also talk about the powerful tool that music is and how I use music to keep me calm on anxious days or make me happy on sad days or just listen to it to make me smile.  A few years ago, my friend, Wilk McKean, asked me to join his music group, “Dr. Breeze.” We sing around the Pensacola area but my heart really swells when we sing at Senior Care Communities. There is no finer moment than to see their smiling faces, their feet tapping, their hands clapping and their voices joining ours as we sing familiar songs.

The one constant associated with performing at these Senior Care Communities is one of the same questions I am continually asked . . .
“How do you keep going back to these “places” to sing. Doesn’t it make you feel weird?”
(I already know what’s coming next but I ask anyway)
“What do you mean by, “weird?”
They say, “Well, you could wind up in a place like that. Doesn’t that scare you?”
I very calmly reply, “NO, because if I do wind up in a “place” like that, I hope someone like me or a group like Dr. Breeze, comes in to sing for me.”
The only answer that comes out of their mouth is, “OH”!

What I don’t talk about, the one thing that is so very hard is LONELINESS! If you didn’t know that Loneliness and Dementia are very common, please feel free to GOOGLE Loneliness and Dementia. Don’t worry, there are only about 43,000 articles that pertain to this subject. Get comfortable, it will take a while to get through them all.

I don’t usually talk about LONELINESS because . . . I HATE IT! I DREAD IT.

People that know me find it hard to believe that I am a very lonely person. The majority of my friends only see me in social circles and when I’m in those circles, I’m not lonely.

I realized, by not talking about loneliness, I am doing a disservice to my audience. Selfishly, I don’t want anyone to see me as a lonely person and I definitely don’t want anyone feeling sorry for me.

Yesterday and today were very lonely days for me because I had just spent 6 wonderful, educational and fun days in Louisville, KY at the Pioneer Network Conference. The Conference was amazing. There were over 800 Educators, Speakers, Care Partners, Exhibitors and Individuals Living with Dementia-Related Illnesses, all gathered together in one place with the sole focus on Pioneering a New Culture and Facilitate Deep System Change in the Culture of Aging.

It was an incredible experience. I saw people I hadn’t seen in a year or so, met new people from all over the U.S., Canada, and other locations throughout the world. 6 days of positive energy. 6 days of like-mindedness. It was incredible.

Then Thursday came. Everyone was leaving. My friends, my new friends, my special friends, all going back to their families, their places, their homes. I tried to stay positive as I hugged everyone good-bye but it just got too much. I broke down and embarrassed myself a bit.

All I could think of was I was coming home to emptiness and that is something I don’t handle very well. I live by myself voluntarily. I feel it makes me stronger to be the one responsible for all that is me. Sometimes, things don’t necessarily work out the way you want them to. I did have raised expectations of some phone calls and or emails coming through but it wasn’t to be. I just have to figure out a way to not let loneliness overtake me. It’s no one’s responsibility but my own.

I know one thing I will start doing . . . I will include loneliness as part of my presentation.

Thanks for reading. If you feel this will help others to have a better understanding of loneliness or anything else, feel free to share.

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.)

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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!

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

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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

 

I Miss Reading . . . and A LOT of other things!

A friend of mine recently asked me if I had ever read the book, “tuesdays with Morrie” by Mitch Albom. She said, “he allows himself 10 minutes a day to mourn the passing of the old him.  After that, he lives in the moment for the day.”

I thought about this and although I do “live in the moment”, I don’t take the 10 minutes a day to mourn the passing of the old me. To be honest, I probably take a little too much time to mourn. 

“Don’t cling to things because everything is impermanent.” 
 Mitch Albom, Tuesdays with Morrie

51AhqmiD-oL._SX344_BO1,204,203,200_For instance, I thought to myself, “I would love to read this book, but I wouldn’t be able to remember what I’ve read.” Don’t get me wrong, I “CAN” still read, I just don’t retain anything I have read. Then I started thinking of all the books I’ve read over the years and how much I enjoyed reading. Then I got sad. Instead of taking 10 minutes to mourn, I took a little more . . . OK, A LOT MORE!!!
I not only mourned not being able to retain what I’ve read, I mourned not being able to work anymore. Working not only gave me a purpose but it also provided me with an income, an income that helped me provide for my family. Now, through Social Security Disability Insurance, I receive approximately 3% of the salary I used to receive. I’m thankful for receiving that but sometimes, I only look at the glass half-full.

“I give myself a good cry if I need it, but then I concentrate on all good things still in my life.” 
 Mitch Albom, Tuesdays with Morrie

I also mourn the loss of my driving privileges. Due to my brain hemorrhage that was discovered back in February of this year, as well as the temporary loss of my ability to speak, my Doctor strongly urged that I discontinue driving. I knew what “strongly urged” meant and I knew that would be the last day I would ever drive. I mourned a lot over that . . . and still do, however, it wouldn’t compare to the amount of time I would mourn if I hurt someone in my vehicle or in another vehicle.

“This is part of what a family is about, not just love. It’s knowing that your family will be there watching out for you. Nothing else will give you that. Not money. Not fame. Not work.” 
 Mitch Albom, Tuesdays with Morrie

I mourn the loss of friends. When I told Shannon that I wanted to “talk about my Alzheimer’s” she turned to me and said, “just remember, once you put it out there, you can’t take it back.” She was right!
My thought was, talking is my strong suit. By talking about it, it would hopefully help others have a better understanding of Alzheimer’s Disease and how individuals like me can still live a pretty good life. Also, by talking about it would keep me engaged, keep my brain working.
What I didn’t know was how many people would stop speaking to/with me because they didn’t think I would be able to carry on a conversation with them. Also, as I wrote about in a previous blog post, there are those who feel I’ve been faking this whole thing.
I wish I didn’t mourn that as much as I do.
However, looking now at the glass half-full, I have met some pretty phenomenal people in the Dementia World. These individuals are some of the bravest, funniest, most intelligent people I have come to know.
I have also discovered my true mission in life and that is being an International Dementia Advocate. It gives me purpose, drive and passion to a level I have never experienced. 

“Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning.” 
 Mitch Albom, Tuesdays with Morrie

I mourn a lot of other things, too many to go into here, however, I’ve realized by writing this blog post, and although I didn’t read “tuesdays with Morrie” I read some of the quotes from the book (some of which I’ve listed here) and I made myself a note and stuck it on my desk so I will see it every day. I may have to put one on the bathroom mirror, one by my recliner, make it my opening screen on my phone . . . 

  10 min

Whatever it takes to remind me to keep the mourning at a minimum.

“Life is a series of pulls back and forth. You want to do one thing, but you are bound to do something else. Something hurts you, yet you know it shouldn’t. You take certain things for granted, even when you know you should never take anything for granted.” 
―  Mitch Albom, Tuesdays with Morrie

I’ve never tried to paint a rosy picture of what it’s like to live with Alzheimer’s. I wouldn’t be honest with myself or with you if I did that. Just know, I don’t do it for sympathy. I don’t want nor need anyone’s sympathy. All I want to do is to live the best life I can possibly live in the remaining years that I have, which I hope will be many.
Until then, I’m going to continue my Advocacy Journey, doing the best I can to share awareness and education as it relates to everything Alzheimer’s and other Dementia-Related Illnesses.

Oh yeah, and remember to mourn no more than 10 minutes a day!

Until next time . . .
PEACE

B