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!”
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.
When I started writing this blog post, I had a different topic in mind.
That topic was lost when I forgot the password for signing into this site. I then began the task of resetting the password but didn’t write it down each time I changed it. (yeah, I was under the assumption that I could “remember it.”) After the 4th ATTEMPT, I wrote it down and another topic, or rather a question, popped into my mind . . . WHY ME???
I think I’ve asked that question to myself, probably over a thousand times during my almost 57 years on this planet, but each time, I came up with a logical answer . . .
For instance, “Why did I get punished” was a question I asked myself regularly during my childhood. My most common answers were . . .
“Talking during class time/church or any other place where I was NOT SUPPOSED to talk.”
“Arguing with my teacher/classmate or anyone else I disagreed with during a time when I was supposed to be quiet.”
“Not telling the truth” (I’m still not sure how I always got caught)
“And then the time I got punished for telling the truth and was not believed, so I lied and then got punished for lying.”
You see, my sister, my brothers and my childhood were nothing like the Brady Bunch. Instead of our Dad sitting us down and having a “teaching lesson-like conversation”, let’s just say we had a bit of an issue “sitting down” after our “conversation.” I think you get the picture.
As the years went by, I still questioned WHYanytime something didn’t make sense to me. I usually wouldn’t let go until either I was satisfied with the answer or the person to whom I was asking just gave up answering my questions and moved on.
So, yes, I was very inquisitive because I wanted to learn. I knew that everything happened for a reason and I wanted to know what that reason was.I would say I had about a 75% success rate in receiving answers. To this day, I’m not sure “some” of the answers I received were “correct” or just “made up” to shut me up, but I at least got an answer.
Then, in 1998, my world 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 during all 22 years of her life.
Mary passed away in October of 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 is 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.
Yesterday, July 29, 2017 would’ve been Mary 41st birthday. I couldn’t help but wonder what a firecracker of a person she would be today.
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.
The same question arose again in the very late ’90’s when my Mother was diagnosed with Alzheimer’s Disease. I thought it was hard to take Mary’s Diagnosis. Nothing in this world could’ve prepared me for this.
My question, again, was, “WHY HER?”
Here was a woman who was the closest thing to Snow White I could imagine. People even mentioned that she even sounded like Snow White when she sang. She was a kind, loving woman who helped take care of Mary (who I just wrote about), her Father (who also had Alzheimer’s), her Mother (who was a paraplegic), her sister (who had brain cancer), my Dad (who, for those of you that knew him, was more than a handful), other friends and relatives, and not to mention 5 children who she had during the first 10 years of 60 years of marriage.
She did everything. She was June Cleaver and Carol Brady all rolled into one. She was an amazing Mother, loving and patient wife, dependable friend, phenomenal Southern cook, extraordinary singer and possessed so many other superb qualities.
Through her Alzheimer’s Journey, she almost never stopped smiling. Even when she could no longer speak, she would hum or “la-la-la” the words to a song to try and communicate. I think she did it with me to signify our bond for loving music. She was always trying to help and to not be a burden on anyone. If she had the ability to speak she would’ve apologized to everyone for needing assistance and care. That’s who she was.
She passed away in January 2015, only 2 1/2 Months after I was diagnosed with Alzheimer’s. It was an extremely hard time, to say the least, and brought up the question again . . . WHY HER?
Like Mary, that answer came to me through my Mother. She taught me how to live life trying not to burden those whom she loved the most while still staying true to herself through her love of music, her patience and her love of family and friends.
So . . . in looking at the lives of both Mary and my Mother, both of these wonderful, strong, beautiful women who lived their lives in the best way possible, have helped me in answering my, “WHY ME?” question.
I truly believe Mary and my Mother used their strengths throughout their entire lives and really depended upon those strengths during the last days of their lives. It started me thinking about the strengths that I have that would/has already enabled me, so far, to get me through my Alzheimer’s Journey. I had to look back to one of the main reasons why I got into so much trouble during my early years . . . “TALKING!!!”
Talking is what I have done, and still do, to this day. (just ask my family and friends . . . lol) By using my voice, I’ve been able to speak to thousands of people, telling my story, dispelling the Stigma associated with Dementia-Related Illnesses, laughing at myself as I go deeper into the Alzheimer’s Forest, using my singing talents to bring back memories to others of days gone by.
So, looking at the lives of 2 incredible women, “Mary Estelle Tycer and Norma Mae LeBlanc,” who used their strengths to, unknowingly, teach us how to live our own lives by using our own inner strengths, I’ve finally been able to answer the question of “WHY ME?”
Thank you, Mary and Mom . . . still teaching me after all these years. I LOVE and MISS YOU BOTH!
“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 pinkeverywhere. On NBC’s Today Show, the male anchors take part in “No Shave November” campaign.
“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.
With Mother’s Day being celebrated this Sunday, I wanted to pay homage to ALL MOTHER’S (and this means all individuals who fit the role of a Mother regardless of gender) who selfishly give of themselves, day in and day out.
(Just so you know, I wrote the following Mother’s Day Blog Post 2 years ago. I re-read it for I didn’t want to re-hash anything I had already written but I thought it appropriate to repost it with a few additional words and photos. The additions will be in italics and bold.)
Holidays. There are so many holidays on the calendar that it’s difficult to keep track of them all. Some of them are legitimate and some are just made up for some reason or another. The one holiday that I truly believe is the holiday of holidays is Mother’s Day. The reason I say this is because, without Mother’s, none of us would be here. Sure, the Father’s had a little something to do it with it but the Mother’s are the ones that carry the burden.
In an effort to explain the importance of Mother’s, I went to merriam-webster.com to look up the definition of “Mother.” This is what I found: a: a female parent b (1): a woman in authority; specifically: the superior of a religious community of women (2): an old or elderly woman
First, let me say I believe Merriam-Webster needs an update.
Second, I apologize to all Mother’s, both female and male (who assume the role) for the insincerity of the definition.
While I am no expert, and not a recent guest of a Holiday Inn Express, (hope you get the joke) I would like to give my own definition, or explanation, of what a Mother is.
A Mother is someone who: – can soothe anything, no matter what the age, with a hug and a kiss – will fiercely protect her family like a lioness protects her cubs – praises their children for the good they accomplish but also holds them accountable for any and all of their wrongdoings – can make your favorite meal impossible to replicate because of her “secret special ingredient.” – can assume the role of sole provider when no other support is available or not given – can assume the role of caregiver of a spouse/significant other, parent or grown child when that individual is no longer able to support or provide for themselves. – rises from her sickbed to take care of her family no matter how bad she feels – consistently puts others before themselves – loves unconditionally
I could go on and on, however, I think you can see that a Mother cannot be defined by any one definition, especially by the definition provided by our friends in the dictionary profession. A Mother’s definition (can change on a daily or hourly basis or at a moments’ notice.) Defining a Mother is almost impossible because of the infinitive person he/she is.
In addition to caring for her children, most Mother’s are also wives, which involves taking care of a “bigger child” with a different set of issues altogether. Most of the time, that “bigger child” has no clue as to what his wife does on a daily basis because he is too busy complaining about his day, playing golf, getting together with his friends, playing X-Box, Fantasy Football, etc. (Just to be clear, I am not grouping all Men/Husbands into this category, but YOU know who you/they are.) 😉
(My Mother was a stay-at-home wife and Mother. She not only cared for her 5 children (all born within 10 years) she also cared for my Father who, those of you that knew him, could be more than a handful. She did everything that was asked of her and more.
As her own parents aged and then became ill (my Grandmother, unable to walk due to a spinal issue and my Grandfather with Alzheimer’s) my Mother and her sister cared for them.
Later, my mother helped my Sister take care of her daughter, Mary, who was taken from us in 1998 due to Cystic Fibrosis.
Then my Mother helped take care of her own sister Carol until her early death.
She was one of the strongest women I have ever known, but I see a lot of her in my Sister as well as my wife Shannon, who is now my Primary Caregiver. Like I said about my father, those of you who know me understand what a job that must be for Shannon. She is more than a wife and Mother, to me, she is My Hero!
So, for most of my life, I’ve been surrounded by these very strong women, women who have put themselves and their needs last for the benefit of the families they care(d) for.
I know there are many other Mothers in the world who are just like the women I know and love, but as usual, they fly under the radar, some staying as far back in the background as they can so that their “SUPERPOWERS” can remain a secret. However, those that truly know and love them, their secrets have long been revealed.
In my definitions of a Mother, one of the things I stated was, A Mother is someone who: rises from her sickbed to take care of her family no matter how bad she feels. When my Mother was stricken with Alzheimer’s, over time she forgot how to do things, forgot what things were, but she still tried. She still had that Motherly Instinct inside trying to get out.
Finally, when she lost her ability to speak, she would sing. (She sang in church for over 40 years and she loved movie soundtracks, especially The Sound of Music. When she would clean, she would put that soundtrack on and just sing away as she cleaned the house.) Although Alzheimer’s took away her speech, she kept that perfect pitch. No longer knowing the words she would make up words or say la la la la, but I could recognize the song. I truly believe it was her way of saying, “Here, let me make YOU feel better by singing to you!.” Even if that wasn’t true, I don’t care. No one can disprove it so I believe it to be true because that’s who my Mother was . . . and although no longer of this earth, STILL IS!
(As a side note, in the last few hours of her life, I was the one singing to her. My sister held the phone up to her ear and I sang her a song.
There was eye movement as I sang as if she was actually hearing my voice. It is said of Individuals with Alzheimer’s, the hearing is last to go. My sister and I will ALWAYS believe she heard the music she so loved. A few hours later, she passed away. With that said, NO ONE will ever tell me the power of music does not matter.)
(I’m not sure of the date of this photo but I do know this is the last photo I have of my Mom and me. She NEVER, EVER went out of the house without makeup on or her hair done, let alone take a photo with no makeup on so I didn’t dare post a photo of her with no make-up or with her hair not done. I wanted everyone to remember her how she was . . . BEAUTIFUL!
At one point during my visit, she reached for my hand with both of hers and we just held hands in silence, looking at each other, she towards the end of her Life with Alzheimer’s and I, just starting out. I’m so glad I was able to capture this moment and although we were silent, I felt we had a great conversation.
So to all the Mother’s in the world, regardless of whether you’re married, divorced, single, an adoptive Mother, a Father filling the role of a Mother, I hope your Mother’s Day is everything you want/need/hope it to be. We all know you deserve much more than just 1 day a year and hopefully, you receive it.
(I will never forget one of the priests at St. Agnes Parish in New Orleans, Fr. McCallion. He had a very strong Northern accent, but it fit right in with what we call a “New Orleans Accent.” Anyway, even to this day, at the end of his homily, I can still hear him giving his Mother’s Day wish as only he could.
” . . . and lastly, I would like to wish all you Mudda’s and Happy Mudda’s Day!”
It would get as big a laugh as it just gave me when I typed it.
So, in the words of Fr. Mac . . . HAPPY MUDDA’S DAY to my Mom, my Sister, my wife and to each and every Mother who reads this!
So . . . You Think I’m Faking my Alzheimer’s Disease, do you?
Imagine my amazement when through recent conversations with some close acquaintances, I was told that there are individuals who think I am FAKING my Alzheimer’s Disease. Yeah, I know, right?
First off, HOW IN THE HELL DO YOU FAKE ALZHEIMER’S DISEASE???
I’ve had brain scans. Did I manipulate them by turning my brain off, not thinking anything while in the scanner?
I’ve been diagnosed, not once, not twice, not thrice, but 4 freakin’ times by a Neurologist, a Neuropsychiatrist, and two Neuropsychologists (appointed by the Social Security Administration, who by the way, declines benefits until no stone is unturned). Did I fake not remembering how to draw a clock or another type of shape? Did I fake remembering the 4 words I was told 5 minutes ago?
Do I fake every day not remembering things from 1 minute, 1 hour or 1 day ago
I’ve had my driving privileges taken away by my Dr. for it was determined I no longer have the cognitive abilities or proper reaction time to operate a vehicle. Did I fake that too?
WOW . . . if I was faking all this, I must be a pretty damn good faker to have come up with this diabolical plan. But wait, if I was actually faking it, wouldn’t that take someone who can think and remember what to do, day in and day out, so they could remember to keep “faking it?”
who has no clue what day it is
who cannot tell time on a non-digital watch
who has to have alerts on his phone to remind him to take his medicine, to eat and to bathe every day
who can’t remember, day to day, how to work a TV remote
Could someone who is Cognitively Impaired really carry out this plan?
Oh wait, I get it . . . I’m supposed to be curled up in a bed, not able to talk intelligently, not able to feed myself or go to the bathroom by myself, and not remember my wife and children. God forbid, should I be able to use a laptop to write blog posts that will hopefully bring awareness and education to people who don’t understand the in’s and out’s of Living with Alzheimer’s Disease that they only saw in their elderly parents and grandparents.
GEEEEZZZZ, I guess since I’m able to do all of these things, maybe all of those so called medical professionals, all 4 of them, plus their PA’s and NP’s, all with their Diplomas and Certificates and published articles are just full of shit!
Maybe they have a quota as to how many people they have to diagnose with a Dementia-Related Illness each month and they needed just one more to be awarded the monthly “Hey, You Diagnosed Some Poor Sucker with a Fatal Illness Who Wasn’t Really Sick”award, and I was the lucky one. Maybe they (all 4 Dr’s, PA’s and NP’s) deliberately lied to me just to turn my life and my family’s life inside out and upside down, all the while so they can collect a $35 co-pay so they have some spending money for lunch! Wow, did they pull the wool over my eyes, or what?
I’ve been open and honest about my Alzheimer’s life since the day I was diagnosed. When I talk about it, I don’t do it to make people feel sorry for me, to have pity on me or to call attention to myself. If I did that, I’d be dishonoring the lives of my Grandfather, my Mother and Father, or my wife’s Grandmother. If I did that, I’d be making a mockery of every person in the world who has Alzheimer’s Disease, whether they be over or under the age of 65, individuals who I now call a friend. If I did that, I’d be purposely putting my wife and children through sheer, underserving, inexcusable, wretched hell.
Well, I don’t have the capability to do something like that.
I’m not saying I’m perfect for I have many faults and I’ve made many mistakes in my life that I’ve paid dearly for, but I’m not evil!
So, for those of you who want to continue thinking I’m faking my illness, please go right ahead. You have the right to think and say what you want. You can’t hurt me anymore than what I’ve already been. We don’t talk or see each other so it’s not like I’m missing out on anything.
Since receiving my “diagnosis” I’ve become non-existent to you, well, except to be called a fake, not to my face of course.
So please, continue your path in life and feel good about yourself. It must be nice to sit upon your throne and pass judgment upon those of us, you feel, are just skating through life.
Yeah, I’m skating alright. Of course, I can no longer skate on my own (guess I’m faking that too) but I’ve got Shannon (and her family), Asheton, Bradley, Linda and so many others holding me up both physically and emotionally when I need it. Unfortunately, I’ve been needing their assistance more and more lately but they are always there. I know I’m fortunate to have them, and yes, I know who YOU are, and I NEVER take it for granted.
They understand what I go through every day. They see and talk to me on good days, bad days and all days in between, because they get it and I am so thankful for that.
Feel free to call them and ask them if I’m “faking it”. Better yet, just call Shannon. She would just loooooove to talk to some of you. Just be prepared though, she’s kinda protective of me.
a surprising and welcoming event that is not explainable by natural or scientific laws and is therefore considered to be the work of a divine agency.
My most memorable, recollected use of the word “Miracle” was during the 1980 Olympics. Al Michaels of ABC Sports, with only 2 seconds left on the clock, shouted, “DO YOU BELIEVE IN MIRACLES?” as the under-dogged USA defeated Russia for the Olympic Gold Medal in Hockey.
There was a three-act play, “The Miracle Worker” by William Gibson based on Helen Keller’s autobiography, “The Story of My Life” which premiered in 1962.
Of course, you have all seen the Christmas classic (1947), and re-make (1994), of the movie, “Miracle on 34th Street.”
(Now you know where I got my inspiration for the title of this blog post)
OK, enough about all of that.
If you haven’t read my 2 previous blog posts, you may want to read them. Doing so may give you better insight to understand what has been going on with me.
In case you don’t want to go back, here’s a very quick recap: I woke up on the morning of February 5th unable to speak. Not from laryngitis but something that was Alzheimer’s related. I spent the next 2 1/2 weeks struggling to find my voice but, was unsuccessful.
That should bring you up to speed. In between the 2 1/2 weeks with no voice, Shannon and I celebrated our 9th Wedding Anniversary. We both made each other handmade cards and went out to dinner.
I’ve always prided myself on being creative and was very satisfied with the card I made for Shannon. However, on this Anniversary, she went all out.
I will share a quote from her letter:
“You are my husband, my best friend, the ying to my yang, my partner in life.
My gift to you this year is memories . . .
So, Brian LeBlanc, you made it through 9 years of marriage . . . What are you going to do now???
“YOU’RE GOING TO DISNEYWORLD!!!” We leave in 7 days! Being that I couldn’t talk, I let my tears do the talking. She knew what I needed and she knew where I needed to be.
She was hoping and praying for a miracle.
We didn’t tell anyone where we were going and being I couldn’t speak made it kind of easy for me to comply. I even had to remind myself NOT to post anything on Social Media. (I used sticky notes on my desk to remind me.) We wanted it to be just about us . . . a change of scenery to our favorite place turned out to be just what we both needed.
I should have known something was up when, on our way to Orlando, “Brown Eyed Girl” came on the radio. I sang every word of the song. I still couldn’t speak at the time, but I sang that song. It was such an appropriate moment, for when I was with the band “Mass Kunfuzion”, every time I sang that song, I dedicated it to Shannon. So there we were, rolling down the Interstate, on our way to the “Happiest Place on Earth”, and I’m singing to my wife.
Sunday was our first visit to the Magic Kingdom. It was like re-visiting an old, familiar friend. Although we were surrounded by tens of thousands of people, a sense of peace came over me. I know it sounds strange but if you’ve read my previous posts where I speak of Disneyworld, it should come as no surprise as to how I was feeling.
The following is my own recollection of what happened on February 19th, 2017, that “Miraculous Sunday.” I’m sure Shannon, with her crystal-clear memory recall ability, could fill in the gaps, but this is what I remember.
As it was nearing the time for the fireworks show, I said something. What I said, I have no idea. (Up to that point I was only able to say very few, single words. The rest of my communication was conveyed by using a whiteboard and a text to speech app)
Shannon turned to me and said, “What did you say?” I think I shrugged my shoulders. She said, “you just said a complete sentence!” Ithought she may have heard someone nearby and only THOUGHT it was me. She told me again, “you said a complete sentence!”
Even though I couldn’t remember, not only what I said, but couldn’t remember saying anything at all, I remember feeling very warm.
Then the fireworks started.
I remembered distinctly what came next.
I heard the words, “Oh my God, that is so beautiful!” come out of my mouth.
I immediately turned to Shannon and she was smiling the biggest smile I have ever seen.
She said, “You did it again. YOU TALKED!” I replied in a very tearful voice, “I KNOW!”
Again, I felt a burst of warmth spread over me. I knew something had just happened. I didn’t quite understand what happened, or why it happened, but it happened. We just held each other and it was like no one else was around.
(the photo below was taken immediately after the fireworks while I was still experiencing unexplainable moisture flowing from my eyes. I think I was still in shock as to what just happened.)
Why my speech returned at that precise moment still befuddles me. Did a miracle just happen?
Contrary to popular belief, miracles do happen.
Shannon and I firmly believe this was a miracle.
It didn’t happen slowly, it was all of a sudden like a switch was turned from off to on. I don’t think I have stopped talking since then. When I’m at home and no one is around, I talk to Dallas. He’s an excellent listener and never, ever disagrees with what I’m saying.
For those of you that have known me for many years know that I love to talk. My family knows that I love to talk. For them, I’m sure it was sort of a vacation for them to not have to hear me talking non-stop about everything and anything. They are, however, thankful and relieved that I can speak once again because they know how lost I was without my voice.
Shannon and I kept the news of the return of my speech to ourselves. We told no one. The reason being, we didn’t want to say “HEY!!! I CAN TALK AGAIN!!!” and the next day, or 2 days later, my voice disappeared again. So, we were overly cautious. Also, I didn’t want to give anyone false hopes, especially Shannon. So, we remained quiet.
Imagine what it was like. Here I was, not able to speak for 2 1/2 weeks and all of a sudden, I could speak again, but I had to keep it on the down-low. So, what did I do? I talked to everyone in Disneyworld. It didn’t matter who they were or whether they understood English. I talked and talked and talked. I think, by the time we were packed up and headed back home, Shannon was probably afraid I was going to talk her ear off. But I didn’t. So, here I am, able to speak again, and “miraculously” feeling a bit more clear-minded. Maybe I’m imagining it or maybe it’s real. I don’t really care. I’m just going with how I feel.
Needless to say:
I will never forget how Walt Disneyworld makes me feel
I will never forget how Walt Disneyworld made me feel as normal as I could feel
I will NEVER forget the Miracle on Main Street USA on Sunday, Feb 19, 2017.
Lastly, as far as believing in miracles, well . . . Shannon and I are TRUE BELIEVERS!
This has been a very long week + 2 days. That’s how long it’s been since I’ve lost the ability to speak.
At first, it was scary. I didn’t know how I was going to get through this. Then, my support system, comprised of Bradley (16), Asheton(22) and Shannon (I’m not telling her age!) stepped in, telling me I’m not alone in this, and that “WE” will get through this. They have kept true to their word.
So far, I haven’t received any encouraging news as to what caused this. One Dr. said it could have been the brain hemorrhage that showed on my MRI.
Another said it was the growth and spreading of plaques and tangles in the frontal lobe of my brain.
Another said it wasn’t any of those things.
So, I’m feeling very good about myself . . . NOT!!!
The one positive thing about all of this is the unbelievable support, encouragement, and love that pours in each and every day. It comes through texts, both facebook messenger and posts, twitter, Instagram, and e-mail. The organizations I volunteer for, Alzheimer’s Association (national and local) Dementia Action Alliance, Covenant Care, and Dementia Alliance International) have all sent messages of encouragement and concern. Covenant Care even went as far as sending (and hand delivering) a card full of encouragement along with apraline and pecanKing Cake. (Don’t worry, I took an extra dose of insulin. I wasn’t about to miss out on that deliciousness of sugary confection. And besides, it would’ve been rude of me if they asked if I enjoyed it and I answered with, “I don’t know, I didn’t eat any of it because I’m diabetic!” My Momma taught me NOT to be rude.)
Anyway, back to the no-speaking thing.
Being I can’t communicate, except for very few words, (Love You, Yes, No, and Pee-Pee. Just to clarify, Pee-Pee is for my dog Dallas . . . not for me!) I use a whiteboard and an app named “TextToSpeech”. You pick the type of voice you want, you type in whatever you want to say, and then hit speak. It’s very easy to use. Since I’m still able to form words in my head, I’m still able to type and write. I don’t know how, but neither does anyone else so far. I’m hoping someone, someday with be able to tell me exactly what’s going on.
On the negative side, I’ve had to cancel a number of my speaking engagements and I literally hate that. Since being diagnosed with Alzheimer’s, I’ve never had to cancel any speaking engagements. Having to do so makes me feel as if I let a host of people down especially when it comes to Law Enforcement. I always enjoyed teaching them the Crisis Intervention Team Training, where I taught them how to recognize someone with Dementia. It’s important since more and more individuals, especially baby-boomers like me, are being diagnosed with a Dementia-Related Illness. I know it is being left in good hands but . . .
I’m also getting used to not driving anywhere. It’s not the “not driving” part, it’s being isolated and dependent upon others. I’ve burdened my family enough already. Now I’m asking them to drive me places or to get me things. I hate having to ask but they never say no. They always find a way. I’ve come to the realization that I’ll never drive again and, like everything else, that will have to be OK. There’s always UBER, if I need to get out. I can use my Text to Speech App to tell them where I need to go. We’ll see.
I’m just going to continue to do what I do as best as I can. I will advocate through the written word instead of the spoken.
I will keep a positive attitude, especially when it comes to my family. They don’t deserve to have to take care of me especially with a “piss-poor” or a “poor poor me” attitude. They deserve the best me I can be and that is what I strive to do.
Some days are rougher than others. Yesterday I was in bed the majority of the day for I kept falling. My dizziness was at an all-time high. I figured the best way to deal with that and not worry my family was to eliminate my walking. So I stayed in bed.
Before I go, I just want to drive home one more thing. Yes . . . I have Alzheimer’s! Yes . . . I can no longer speak! Yes . . . It’s a pain in the ass to deal with! However . . . I’m Still Here, Living the Best Life I Can!
There are many others in the world who are just like me.
DON’T COUNT US OUT! We still have a lot of life within us.
We still have a lot to say and we’ll say it through any form of communication we are able. We will continue our Advocacy, raising Awareness and Educating about all things Dementia-Related. Even when we are no longer of this earth, our words will still live on.
“I Have Alzheimer’s BUT, It Doesn’t Have Me for I Don’t Allow it to Define Who I AM!!!”