Another Why???

This is part of an article written by Donald Weever, Professor of Chemistry, Director of Krimbil Research Institute, at the University of Toronto.

As a researcher who studies Alzheimer’s disease and a neurologist who cares for people with Alzheimer’s, I share in the frustration, indeed anger, of people and families when I tell them that I have no cure to offer. Over the past year, scientists have tackled COVID-19, a previously unknown disease and within months developed effective new vaccines. Over that same time frame, the list of Alzheimer’s treatment failures got longer. Currently, the only approved drugs for Alzheimer’s merely alleviate some of the symptoms — partially and temporarily — but do not stop the disease from progressing.

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Brian’s Rant

So, HOW AND WHY is it that a vaccine could be manufactured for COVID-19, a brand new pandemic, very quickly BUT NOTHING for Alzheimer’s. How did THAT happen? WHY did that happen?

Why is it that Congress can pass bill after bill after bill, including passing bills to give themselves pay raises. I thought they were working to represent us. We voted them into office. Shouldn’t WE, THE PEOPLE be the ones to vote on their performance?

They get all the perks but those of us with Cognitive Impairments are living on Social SecurityDisability. We are still waiting for our pay raises!

We raise money, millions of dollars each year … each and every year, and we are given hope that something is on the horizon yet when all the totals are tallied, there’s just not enough money to do the research. That’s when we go to Congress and ask for more funds for research. They have enough to pass around. Then they have to vote and argue about how much of their budget are they willing to give for Alzheimer’s Research. Then they have to ask one another, “Will this affect us in any way?”

It seems they only care about their special interest groups and their top donors. Of course they have to have money for their wine and dine “meetings”. I’ve never received an invite for candidates in my district. I guess I’m not rich enough or connected with the right people. I can’t even speak with a member of Congress directly. We get passed over to someone on their staff. In the meantime, we still have Dementia-Related Illnesses that go untreated.

While I’m ranting, another thing that really makes no sense to me is, why are celebrities chosen to speak on behalf of us yet WE are NEVER asked to make a commercial although we are called … “THE EXPERTS”! You know the ones who live with these damn diseases each and every day! Why is that?

If I sound angry and frustrated, it’s because I am! I’ve lost 3 members of my family to Alzheimer’s and Vascular Dementia because there wasn’t any way to help them. I’ve been living with Alzheimer’s since October of 2014 and Vascular Dementia since 2019. My family and loved ones are going to lose me, but before that, I know I’m going to lose more friends and family members to these Dementia-Related Illnesses.

I’m tired of losing people!!!

I’m scared I will wake up with brain fog and it stays!

I haven’t even touched upon the stigmatization we face each and every day. Comments like, “you don’t look like you have Alzheimer’s, besides you’re too young!” That’s an old persons disease.”

Tell that to the families of the people they lost!

I was even told by a family member that I was faking my Alzheimer’s. WOW!!! Do you realize how difficult it would be to try to “remember” each day you wake up and remind yourself you have Alzheimer’s but some days you won’t remember … BECAUSE YOU HAVE ALZHEIMER’S!i

I know this is an angry post but dammit, I AM ANGRY!!! Why does the National Institute of Health have to beg for much needed funds for Dementia research. WHY!

Why are there panels of experts getting paid, who speak at conferences, symposiums, ZOOM Calls, or wherever they are asked to speak when the real experts are sitting at home trying to make financial ends meet.

I haven’t even touched upon the Family Care Partners who hold down a job and at the end of the day, care for their loved one(s). I know from first-hand experience, it’s a tough, emotional, unpaid job.

Look, I’m just a guy who is expressing his thoughts and emotions, but also asking a lot of questions. I’m also hoping that when it comes down to asking CONGRESS to pass new legislation to fund Alzheimer’s and all Dementia-Related Illnesses, they will do just that.

I hope that the work that went on to make a COVID-19 shot will be an example as to what can be done if EVERYONE works together.

I just HOPE that we will not have to continually ask the question … WHY?

Until next time…Peace!

Brian

#Alzheimers #Dementia #Why #Dementia-RelatedIllnesses #HOPE4AlzheimersCure #ENDALZ #HelpUS!

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Aphasia: ‘I Couldn’t Speak and I was Terrified’ By Brian LeBlanc

A Bit of Brian’s Brilliance Alzheimer’s March 17, 2021

I woke up Saturday morning just like any other day. Maureen, was up before me, of course, as she moves like a cheetah, completely opposite of me as I move like a sloth. I just take my sweet time.

The gentle waves of Tampa Bay just outside our bedroom window glistened in the morning sunlight. So relaxing and peaceful, a wonderful way to wake up and prepare my mind for the daily grind of functioning and remembering. I said something briefly to Maureen, although being a bit foggy, I can’t remember what it was.

I finally sat up and tried to say something, and … NOTHING. I couldn’t speak. I couldn’t think. I had my inner monologue. I could mouth words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence. Frightening silence. Another attack of aphasia — thankfully a relatively infrequent consequence of my Alzheimer’s Disease and Vascular Dementia — It had now robbed me again of my ability to communicate verbally. I looked to Maureen in a panic. She could see by my eyes I was terrified. We were scheduled to do a Facebook Live for WeAre#DementiaStrong that morning, but that hardly mattered.

She promptly and politely canceled the event with a nice post explaining that I wasn’t feeling “well.” Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done.

Did I mention I’ve had several bouts with aphasia before?

For some, aphasia symptoms may include a total or partial inability to write or understand language. Some say words in the wrong order; others say sentences comprehensible only to themselves. My aphasia causes a complete loss of speech. No words can escape my lips, whatsoever. I may be able to mouth some words, but I rely mostly on gesturing and a text-to-speech app that allows me to communicate.
I often laugh, wishing Maureen could just read my mind, but I can’t even read my own mind most days. In the meantime, my Text to Speak app can speak for me, much to Maureen’s playful chagrin. It’s sometimes funny to have the app speak for me in a British accent or a woman’s voice. But whatever joy I get, joking around with the apps may bring, the sad reality of aphasia.

I said something briefly to Maureen earlier, although being a bit foggy, I can’t remember what it was. I finally sat up and tried to say something, and … NOTHING. I couldn’t speak. I could think. I had my inner monologue. I could mouth the words. They were right there on the tip of my tongue. But nothing. Silence. Pure silence.
Frightening silence. It was another attack of aphasia.

Not feeling “well” was an understatement. I was in full-blown crisis mode in my own head, and Maureen was doing her best to comfort me and coax me out of silence. That’s easier said than done.

A few years ago — I hardly remember this — I was unable to speak for several months. Another incident lasted three or four days.

The Uncertainty of Aphasia: When Will It End? has no answer. Will it end at all? I’ve entered each attack of aphasia facing the reality that whatever I said the moment or night before could be the last words I ever say. Maureen later told me, “The first thought that went through my head: ‘What if the last thing I ever hear you say is what you just said to me.”

Maureen went to the office and cried. Even as an expert in dementia care and life-care planning who walks the walk in professional and personal shoes, the random, uncontrollable and sometimes cruel effects of dementia are a lot to handle. “I was like ‘I can’t deal with this. I just can’t deal with this,’” she said. “I have plans in place if I couldn’t leave you alone at any point. I just wasn’t ready to put them into action.” I understand better than most that dementia is incredibly difficult for both the diagnosed person and their care partners.

She does a fantastic job as my care partner. She knows exactly what to do not just to keep me happy or distracted, but to address dementia symptoms and provide holistic relief. She’s a saint for taking my hand and leading me out of the fog and darkness, time and again.

Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.

Music is the perfect therapy tool. We remember music. We remember art. They realign and reset minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800 songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs. (On that note, Maureen and I are proud to serve on the Board of Thriving4Life with Maureen serving as the Board Chair).

@Thriving4Life nonprofit promotes clinical art therapy and personalized music for elders and individuals. I can honesty say that music works. I hear the melodies the beats and the lyrics. I feel the emotion. It’s soothing, and it brings me back to reality. But that’s not what brought back my ability to speak

We tried to make the day as normal as possible. I watched a little TV. We went to the store. We even had a little argument, as couples often do, using my text-to-speech app. Maureen sat me down on the couch with my headphones. I can vaguely recall tapping my toes to the beat. She says my lips moved with the lyrics. I was remembering, but still no voice.
Music is the perfect therapy tool. We remember music. We remember art. They realign and reset our minds with ties to specific emotions and functions. I love all kinds of music, and I have some 4,800+ songs on my phone. There’s scientific proof that music and art therapy can actually replace dementia drugs.

Later, we sat together on the back patio, overlooking the water as the sun began to set. I managed to snap a great picture of some dolphins. I stood up and started my way inside and I tripped on the door jam. I went down hard, yelling a certain four-letter word. I’m not sure if it was the jolt or something else. All I heard was, the expletive I yelled and Maureen saying, “YOU TALKED! YOU SPOKE!

Thankfully, this round of aphasia lasted less than 24 hours. Since that first time, I’ve always tried to speak first thing in the morning after regaining the ability to speak. That’s my test. That fear never loosens its grip now.

Communicating with Aphasia and Dementia.

Last week, Maureen wrote a terrific blog about communicating with loved ones in certain stages of dementia. Coincidentally, we ended up living the extreme of that reality, however briefly, that very weekend.
“Trust me, Brian LeBlanc will always try to find a way to communicate,” Maureen said. And she’s right. Communication is my life. It’s who I was before dementia as a Marketing and PR professional. It’s still who I am now.
Thankfully, I’m always prepared to use gestures, facial expressions (and of course, my text to speech app.

Later that night, Maureen and I were joking and talking when  she said, ‘You know, I kind of wish you didn’t talk anymore.’ We had a good laugh.

As I’ve said since being diagnosed with Alzheimer’s Disease in 2014,

 “I have Alzheimer’s, but it doesn’t have me!”

 http://www.caregiversupportandresources.com/aphasia-i-couldnt-speak/

Until Next Time . . .
PEACE!
Brian

Being Strong

The other day, I was having a rough time. 2 nights earlier, I started to have my hallucination visitors again and that, in addition to disturbing my sleep, it also escorts a butt-load of anxiousness.

Later that morning, Maureen found me in my chair uncontrollably crying. From what I can remember, I just kept saying, “I HATE THIS SH*T, I HATE THIS SH*T. HOW MUCH MORE CAN I TAKE?” She consoled me with hugs and positive words.

She then went into her office and came back with something in her hand. It was a little sign that read . . .
YOU NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE.
She put it on the corner of the TV table where I would see it morning, noon and night. (She’s crafty like that.)

Well, it worked. Even right now as I write this post, when I can’t think of the right word or the word I want to use but forget how to spell it, or how to use the settings on my laptop. (I must admit, I took a photo of the sign to use in this post but I couldn’t remember how to add it.)

I may have told you this before so if I did, please forgive me for repeating myself. Living With a Dementia-Related Illness that has no cure, no way to stop progression and just takes little pieces of your brain and just throws it away, REALLY SUCKS!
However, what I have come to realize is MY strength. It’s not a physical strength, it’s a strength that comes from within, a strength that before now I hadn’t fully realized.

I can now fully understand how strong my Mother was when she went through her Alzheimer’s Journey. Even when she lost her ability to speak, she tried her damnedest to get her message across by humming music or using her eyes and her smile. She was a very strong woman all her life and she never stopped being strong for, as the sign says, “Being Strong” for it was the ONLY choice she had.

Who knew a little sign could have such a huge impact?
Well, I do!

Until Next Time . . .
PEACE
B

My Question is “WHY”?

I LOVE MUSIC! For those of you who know me this does not come as a surprise to you. Being the youngest of 5 children, I became interested in all Genres of music.

My Mother would listen to Movie Soundtracks like Sound of Music, South Pacific, Fiddler on the Roof. some of favorite artists were Andy Williams. Mitch Miller, Bobby Goldsboro, Lawrence Welk and others.
My sister Linda, who’s age I shall not share for fear of my life, listened to a lot of Barbra Streisand. She may have listened to some other artists as well, but I can’t recall who.
My brother Wayne liked the group, The Animals, Paul Revere and the Raiders, Herman’s Hermits, The Rascals, The Turtles, The Beach Boys, and others.
My brother Barry liked Cat Stevens, Chicago, Lovin’ Spoonful and others I don’t remember.
Keith was a fan of The Beatles, The O’Jays, The Eagles and others I don’t remember.

Then there was me. Being I grew up listening to the same music as my parents, my sister and my brothers, my likes of artists spread from the 60’s all the way until today. Yes I liked the music, but I was a bit more interested in the lyrics and how they related to the parts of my life and whatever decade I was in. Being I was born in 1960 and it is now 2021, I’m entering my 7th decade. (damn, typing that made my fingers cramp. LOL)

I would sit in the living room with headphones on (my dad made me listen through headphones for he didn’t want to listen to “that crap”) and I didn’t yet have a stereo in my bedroom but I didn’t mind. Plus it gave me the opportunity to listen to the lyrics of the song. (My dad did like one “modern” song and that was Proud Mary by CCR (Creedence Clearwater Revival). I don’t think he knew the lyrics he just liked the song.
Anyways . . .

As I said, I liked to listen to the lyrics of a song. A lot of lyrics spoke to me (not in a creepy way) but more like, intellectually. You may wonder what I am writing about, but if you follow me, you may find that I don’t like to get right to the point.

As I enter my 7th year of being diagnosed with Alzheimer’s Disease, I have become more reminiscent of things and some of those things wrap around friendships, forgotten friendships, and broken friendships.

There are a lot of songs that have the word “WHY” as part of the title. WHY is a very short question and sometimes, turns into a very long answer. If you are wondering if I am going to ask a question using the word “WHY”, you are correct. As a matter of fact, I may ask several questions using “WHY?”

This morning as I was listening to my music, a song by STYX (one of my favorite bands) came on that was very familiar to me. The name of the song is “WHY ME?”
The lyrics spoke to me for I ask these questions to myself, to God, to anyone who listens.

Part of the lyrics are:
I guess we used to be the lucky ones, whose fortune smiled on everyone
Stop! A voice said you best beware.
Stop
! Bad luck is everywhere.
And sure enough the voice was right
My luck had changed overnight

Stop! Please tell me what went wrong
Stop! I can’t take these ups and downs
Hard times come and hard times go
And in between you hope and pray the scars don’t show
‘Cause life is strange, and so unsure
The days you hardly make it through

You swear that there’s a curse on you
And nothing seems to fit
And things won’t go your way
You know you’ve had enough
You’ve got the right to say
Why me, why me


I often wonder, WHY ME?
I wonder, WHY don’t you talk to me anymore?
I wonder, are you scared? Do you think I won’t understand something you say or ask? Do you feel that my confusion may make you feel uncomfortable?
If you answered YES to any or ALL of these questions, please, put yourself in my shoes or the shoes of a loved one, or the shoes of one of my many friends who are also Living with Dementia.

After doing that, please write back to me and . . .
Let me know how it feels for you.
Let me know how lonely it feels.
Let me know how it feels to be abandoned.
Let me know when you write to a friend or someone you thought was a friend, and they don’t respond.
Just let me know!

I am not asking these questions out of pity or as a cry for help or attention.
I want to know how it feels for you to walk in our shoes.
Sadly you won’t be able to, you can only imagine what it would feel like.
Try this . . . I want you to go somewhere with your husband, wife, partner, child and have someone walk up to you and instead of asking YOU how YOU are doing, they ask the person you are with because they think you aren’t able to speak.

I understand that there are those who are no longer able to speak but . . .
can still hear and understand,
can still recognize a smile,
can still feel a hug, feel a hand holding their hand.
They are still a person inside. They may not communicate in the way they once did, but they try very hard to make it known that they understand.
The worst thing you can do is to discount them, abandon them, ignore them just because they are not the same person you used to know, because they make YOU feel uncomfortable.
HOWEVER, they are still a person that knows you.

I have a STRONG circle of friends. and yes, they know who they are. They don’t need to be reminded. Thanks to Maureen, I now have an extended family which includes 2 adult daughters, Meghan and Erin, Erin’s husband David, Maureen’s brothers and sisters and I could never not include my shadow . . . Emma!

Please don’t think this is a cry for help for it is the furthest thing from the truth. I don’t need pity, I don’t need anyone to feel sorry for me, I’m not begging you to be my friend. All I’m doing is to give you the opportunity to learn a little bit about folks like me who are living with a Dementia-Related Illness. We are really awesome people, you just may have to to introduce yourself to us every now and then. 🙂 Oh yeah, we have a great sense of humor!

Until Next Time . . .
PEACE
B


DEMENTIA MARCHES ON!

Dementia knows no age.
It equally takes the memories of man, woman and even children.
It cruelly attacks our most recent, precious memories, leaving us with our long-term memories, which allows us to remember what was but not yesterday or today.
It can stop our brain from functioning at a moments notice like a pitch black curtain descending in our heads, causing us to lose our words and complete thoughts in mid conversation with no way to retrieve them, leaving us standing there with a blank expression.
No matter what we do to try to stop it, DEMENTIA MARCHES ON!

~B

I’m not writing this to depress you or to make you feel sorry for those of us that are living with a Dementia-Related Illness, I’m just trying to help you understand what we experience, sometimes for a minute, an hour, a day or days. To put it bluntly, IT SUCKS!!!

What I do ask you is to not feel sorry for us. I ask that you to interact with us just like you would anyone else.
But wait . . . that’s not all!

Dementia not only affects memory. There are also side effects that come along with our Disease. Some, but not all are anger, emotional roller coasters, hallucinations, depression, anxiety, difficulties with visual and spatial abilities, problem solving, difficulties handling complex tasks, difficulties with planning and organizing, and later on, difficulties in completing every day tasks and more issues as we progress.
To make matters worse, according to #AARP, some scientists say there is compelling evidence that the negative effects of the COVID virus could last even longer, possibly creating a surge of cases of dementia and cognitive decline years down the road.

I could go on and on but, I don’t want to and I think you get the point.

When 2021 was approaching, I realized that I was entering my 7th year of my Alzheimer’s journey and my 3rd year of my most recent diagnosis of Vascular Dementia. Has that stopped me from #LIVINGWELL? The answer to that question is NO! If anything, it pushed me forward to do things I might not have done before.

In 2019, I moved . . . again, but this time staying in FL. I moved to Largo to join my Life Partner / Care Partner Maureen Rulison. She has been a blessing in disguise, (she says she is not in disguise) organizing all my medications, vitamins, setting me up with my new physicians and basically helped organize my life.
Adding to my list of addresses, we just recently moved to, what we hope to be, our forever home. (the U.S. Postal Service just breathed a sigh of relief! hahahah) We talked a lot about living on the water. With Maureen’s determination and the stars aligning, we were lucky to find what we were wishing for. Our backyard is Tampa Bay (the body of water, not the area) and the dolphins and birds greet us with a good morning every day. It’s surreal to live in a beautiful location and this location and all that it offers does help with my anxiety.

I’m saying this here and now, unless we win the lottery, we are NOT moving again.

I feel like I have jumped around a lot with this post, but I know I haven’t written a new BLOG post in quite a while so I had some catching up to do. My New Orleans friend of hundreds of years, Giorgio, texted me the other day with this message . . .
“Good Morning my friend . . . I’m noticing there’s only 5 days left in January. When are you going to make your January post?”

Well Giorgio, here ya go my friend. Thanks for the heads up and not allowing me to get lazy. I need that push every now and then.

I would also like to thank all those who follow me and send your encouraging words. It really means a lot.

If I could leave you with words of encouragement . . .
“If you are LIVING with a Dementia-Related Illness, don’t give up!
If you know someone who is LIVING with a Dementia-Related Illness, drop them a line. It may be just what they need .
If you can’t decide whether or not to keep in contact with someone who is LIVING with a Dementia-Related Illness, the answer is ALWAYS, YES!

PEACE,
Brian


Should I Stay or Should I Go? (My Battle with Dementia, Anxiousness and Covid-19)

Investigations by Chinese authorities have identified human cases with onset of symptoms in early December 2019.The first laboratory-confirmed case of COVID-19 in the United States was confirmed on January 20, 2020, and reported to CDC on January 22, 2020.
After that, ALL HELL BROKE LOOSE!!!

Doing some research on COVID-19, I came across a lot of questions from the public . . .
* Do antibiotics work against the coronavirus?
* How long does the coronavirus last on surfaces?
* What is a pandemic?
* Can the coronavirus disease spread through swimming pools?
*Can the coronavirus disease spread through frozen food?
* Can I still have sex during the coronavirus pandemic?

I could probably give you the answers based upon what I’ve read, but that would take too long. I’ll let you research on your own.

What I want to talk to you about is . . .
How is COVID-19 affecting those of us who are LIVING with Dementia?

It is said that those of us who are LIVING (and yes, I call attention to the word LIVING, because it is what we do everyday) with a Dementia-Related Illness are “EXPERTS!”
We don’t know a lot of the medical information (we are NOT Neurologists) but what we do know is how it affects us. A big hurdle the majority of us face is Anxiety.

Anxiety is usually a symptom that comes along with Dementia. It differs from one person to another, meaning that the frequency differs. Some don’t have it all. Others may have hallucinations while others don’t. Dementia is what I call a Designer Disease. We all know that Dementia is not a disease in and of itself, but is has so many diseases that fall under the Dementia Umbrella that makes it difficult to find the ever-escapable cure. But I’m not writing about that . . . I’m writing abut how anxiety comes into play with COVID-19.

I should start off by saying, anxiety is not exclusive to Dementia-Related Illnesses. Anxiety can be present in anyone’s life.
According to the CDC . . . Public health actions, such as social distancing, can make people feel isolated and lonely and can increase stress and anxiety. However, these actions are necessary to reduce the spread of COVID-19. Coping with stress in a healthy way will make you, the people you care about, and your community stronger.

Those of us Living with Dementia-Related Illnesses usually, but not all, have Anxiety that comes along for the ride. I can speak only about my anxiety for, as the saying goes . . . “If you know 1 person with Dementia, you only know how it affects THAT one person.”!

Each day, Maureen will tell me she is going somewhere and asks me if I want to come along with her to “get the stink off!” Just hearing that question triggers my anxiety. All these thoughts start running through my head. All the what-ifs start swarming like bees. Scenarios start popping up like . . .
What if I touch something that someone who is infected touched?
What if we go into a public place and there are people not wearing a mask?
What if I see a non-mask-wearing person sneeze and all their COVID particles are now airborne?
What if someone coughs in my direction?
I even took to wearing Playtex gloves when I pumped gas for Maureen. When I got back into the car, I would sanitize the gloves and then sanitize may hands, just to make sure. You never know who touched what.
I must say . . . “IT’S EXHAUSTING BEING ME!!!”

So, Bella and I stay on the sofa, her sleeping and me doing insignificant things that I feel are of some sort of importance. I would much rather stay inside than to possibly infect myself by walking out the door.
There are, however, times when I will go along for a ride, mostly when I don’t have to leave the car. This usually happens when Maureen wants to have a Diet Dr. Pepper from Chick-fil-A with light ice. (She is a firm believer that Chick-fil-A has just the right mixture of ingredients served in a Styrofoam cup which keeps it cold (and y’all thought I had issues) but I digress!

Look I know I’m being a bit paranoid about the whole “COVID THING” but, I have enough problems with things I currently have. I’m not looking to add anything more to my Disease Resume’. So, I will continue my stubbornness, couch sitting with my faithful furry companion while Maureen goes on her missions into the COVID-19 world.

I also have a message for everyone . . .

“WEAR YOUR DAMN MASK! IF YOU DON’T CARE ABOUT YOURSELF, THAT’S ONE THING BUT NOT CARING THAT YOU MAY POSSIBLY INFECT SOMEONE WITH A DISEASE YOU MAY NOT KNOW YOU HAVE AND THAT PERSON DIES BECAUSE OF YOUR IGNORANCE / STUPIDITY/ STUBBORNESS / SELFISHNESS, WELL, I HOPE YOU CAN SLEEP VERY RESTFULLY EACH NIGHT!

Until Next Time . . .
PEACE
~B

In Remembrance of Mary

I wrote this original post 3 years ago but being today is a sad Anniversary for my family and I, I wanted to repost it with some changes.

~B

In 1998, my world was changed. My niece, Mary, died from Cystic Fibrosis at the age of 22. I knew how she died for I was there by her side watching her, crying for her, singing to her, as she drew her last breath. My question was, “WHY HER?” I’m not saying I was wishing it upon someone else, I was just questioning, “WHY?”

She struggled all her life. My sister was told Mary wouldn’t live past the age of 2. What her doctors and everyone else who cared for Mary came to know was how much of a fighter she was and how she didn’t like being told what she could or could not do.
She went through, not 1 but, 2 double lung transplants. She fought so hard during all 22 years of her young life.

Mary passed away on October 14, 1998. One of her last wishes was to take a trip wherever she wanted to go. My sister told me, she chose to come to Pensacola to surprise me for my birthday, which was in September. It was a huge surprise.

I will never forget the last week of her life. She was talking to me from her hospital bed and she asked me, “When are you coming to see me?” I told her I would be coming that next weekend. She said, “NO! YOU NEED TO COME NOW!” I asked her what was wrong and she said, “everybody here is acting all nice and pleasant. When I yell at someone, I want that someone to treat me normal and yell back at me and tell me to shut-up. You’re that person!” I arrived in New Orleans the next day.

I stayed up at the hospital with her, only going to my parents’ house to bathe and eat. On her “last night” one of Mary’s friends and I were with her and we were watching the World Series.  Mary was on oxygen and her tube would sometimes fill with condensation and have to be emptied. If not, she would have more trouble breathing than what she already had. When this would happen, she would alert us and we would drain her oxygen tube.

During a crucial part of the game, Mary was trying to get my attention to drain her oxygen tube. Keeping in mind what she asked of me on the telephone, and in keeping with the sarcastic nature of our relationship, I told her to “keep it down, we’re trying to watch the game.” She started laughing, which made her start coughing, then we were all laughing. All of a sudden, she stopped coughing raised up her oxygen mask, held up a single finger (you know which one) and said some pretty obscene words, put her mask back on and continued coughing! That was my Mary.

We stayed awake most of that night, talking, laughing, telling stories. A little after 1:00 pm the next day, well, you know what happened. Although I was terribly sad, I wouldn’t have traded those last days for anything in the world.

The answer to the question, “WHY HER?” came to me this morning.
She was chosen to show us, even when in the darkest of times, even during her hardest struggles, all she wanted was to be treated normally. Being she could still laugh through it all was also a valuable lesson.

I miss her so very much but I know she is with my Mom, breathing with no issues, laughing, telling stories and at peace.

Missing You,

Your Favorite, Uncle B

❤️🌹

Dying with Dignity

I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

Several months ago, I made a video to my future Care Partners. In case you didn’t see it, here is a a link to the video. https://bit.ly/30fWF5O

In the video, I talk to my Future Care Partners, telling them my likes and my dislikes so that when I am struggling with my Dementia, Anxiety and anything else that may make me a little difficult to deal with, they will know what to do.

Realizing that planning how you will pass from this earth is not exactly a fun discussion to have. We also realize that death can come along at any time, so it’s always important to have a plan. Don’t you want to be assured that that when your time comes, you will leave this earth in a manner in which you choose? I know I do,

With that said, Maureen and I have had many conversations about this topic because we both want to make sure that whoever goes first, the other one will know their wishes. We are going to write these wishes in our Journals, making changes and additions as we go along. It’s important to both of us that we give each other what the other wants.

One of the things we agreed on from the get-go is that we want to be cremated. We figured, why would we want to rent space in the ground when we could have our ashes planted in the ground and become a beautiful tree. That is such a beautiful thought that, when in full bloom, people could come sit under our branches and enjoy the shade we could be provide them. To us, that is such a beautiful way to spend eternity.

This blog post is not completely about dying, but more about our dignity. Simply said, I don’t want to spend the last days of my life being kept alive by a machine just to prolong the inevitable. I have work to do, meaning, I am donating my body to science.
– I want them to study my brain to see if something they find could be used to help further understand this most misunderstood disease.
– I want them use my organs to keep someone else alive.
– I want them to use anything they can to benefit others.

I can’t think of a better way to help others, rather than just put me in a hole in the ground.

In preparing for this post, I did l do some research. One of the things I looked at were websites with the title of Death with Dignity. This was not what I was looking for but a lot of folks, now today more than ever, are choosing.
Right from the start it states, “You’re joining a growing movement that works to ensure terminally ill Americans have the freedom to choose from a full range of end-of-life options, including how they die. Seventy percent of Americans support the end-of-life option allowing qualified terminally-ill people to end their lives through physician-prescribed medications. That’s right: seven in ten Americans want this option. https://www.deathwithdignity.org/learn/advocates/

Like I stated above, this is not for me but I respect those who choose this alternative.

So, what do I want to happen during the dying process?

  • First of all, I want Music. I want the room to be filled with my favorite music (I am currently working on my playlist) so that when I pass, I will be relaxed and non-stressed. That’s important to me.
  • One thing I DON’T WANT is people staring at me during my last moments. I know it will be sad, however, living with Alzheimer’s, Vascular Dementia, Type 2 Diabetes and no telling what awaits me in my later years, I want to be in my own bed, with nice sheets and soft pillows, have Hospice involved, laughter, (I don’t want it to be solemn for that is not who I am) and I have discussed all of this with Maureen.
  • I DON’T want to be left alone, (unless Maureen leaves to get a Diet Dr. Pepper from Chik Fil-A)

    This will all be put in writing so in case Maureen is not around, it will still be able to be carried out. Why is this so important to have this written?
  • I may not be verbal at that time. (Maureen says she couldn’t be so lucky to have me non-verbal.)
    I feel people should talk about their fears, no matter how serious, funny or anything in between because we don’t want to be trapped with those fears inside.

Before Maureen, I had no idea how I was going to spend my final days and moments nor did I have anything in writing. The only thing I knew for sure is that I wanted to be cremated and have my body given to science. I was living by myself and I had a fear of something happening to me and no one finding me for days. I had a fear of dying alone.

Now, with Maureen ever present in my life, I no longer have that fear for we now have a plan in place. And even if Maureen is not there, there will still be people by my side and I won’t be alone.

With that said, I feel safer, less anxious, loved, and assured that my wishes will be carried out just as they were planned. There is a secure feeling that is now with me.

You see, in Muareen’s line of work, at times she was the only one standing by the bedside of one of her clients, holding their hand as they passed away. She offered comfort but had no idea what their wishes were. She promised me that would never happen with me.

Some things I forgot to mention was, I want to have a Celebration of Life.

I want music to be played and at one point, I want the song, “Feeling Good” by Michael Bublé to be played. I want food and yes, alcohol. I don’t want anyone to wear black. Instead, I would love it if everyone would wear brightly colored clothes. If you have a Tropical Shirt, that would be even better. (I may add more to this as I think about something new. It’s kind of like me … a work in progress. You never know what you’re gonna get!)

The reason why I mention all this is because, if you don’t already have a plan or haven’t had conversations with your family as to how you want to spend your final days and moments, plan now, so that when that time comes, you will pass away in peace and your loved ones will also know they gave you exactly what you asked for.

Doing this is one of the greatest gifs YOU can give to your Loved Ones.
DON’T WAIT UNTIL IT’S TOO LATE!!!

Until Next Time . . .
PEACE!!!

B

World Alzheimer’s Day

Each Year on September 21st is World Alzheimer’s Day.
I will start out with what IT’S NOT!
* IT’S NOT a day of Celebration!
* IT’S NOT a National or International Holiday!
* IT’S NOT a day for cookouts or Backyard Bar-B-Ques!

What it is, is a day to call AWARENESS to
* a Disease that has NO PREVENTION!
* a Disease that has NO WAY TO STOP the PROGRESSION!
* a Disease that has NO CURE!

I guess you can see why I don’t exactly call this a “Day to Celebrate.”

You will probably see a lot of photos on Facebook, Instagram, Twitter and other Social Media of individuals wearing purple. It’s a way of calling awareness to a Horrendous Disease.

One of the strangest things about this disease is it doesn’t exactly cause people to die. According to the Alzheimer’s Association . . .
” Alzheimer’s disease leads to nerve cell death and tissue loss throughout the brain. Over time, the brain shrinks dramatically, affecting nearly all its functions. “

It is said that no one dies from Alzheimer’s, instead they die with it.
To put it in plain English, Alzheimer’s attacks different pieces and parts of the brain, causing those pieces and parts to malfunction and cease operation, therefore, in some cases, the “affects” of Alzheimer’s is the cause of death.

Alzheimer’s and other Dementia’s are classified as “Degenerative Diseases.” Maureen and I wish they would classify them as “Degenerative Disabilities” because the world works to create solutions to live a better quality of life for individuals with Disabilities and it works to help those with Incurable Diseases live more comfortably as they die. Why not build cognitive ramps in our world for Persons Living with Dementias-Related Illnesses LIVE” in our world rather than DIE in our world.

Here are some Facts and Figures from the Alzheimer’s Association.
https://www.alz.org/alzheimers-dementia/facts-figures

  • More than 5 million Americans of all ages have Alzheimer’s.
  • An estimated 5.8 million Americans age 65 and older are living with (Alzheimer’s) Dementia in 2020.
  • Eighty percent are age 75 or older. One in 10 people age 65 and older (10%) has Alzheimer’s dementia.

Where are the statistics of Individuals, like my friends and I, who are Under the age of 65, who are “Living Well” with Alzheimer’s, Vascular Dementia, Lewy Body, Parkinson’s, White Matter, FTD, CTE, MCI?
Do we count?
Are we not as important as our elders?
Where do we fit in the Alzheimer’s equation?


Inquiring minds would like to know.

Until Next Time,
B
Stay Safe and . . . PEACE