WHY ME???

WHY ME???

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 WHY anytime 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!

Until Next Time . . .
PEACE!

B

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The Happiest Place on Earth

The Happiest Place on Earth

Yes, I’m talking about “THE” Happiest Place on Earth, Walt Disneyworld.
However, it’s not for the reasons you may think.

Let me explain . . . I recently came across an article by Sandy Wells of KABC News entitled, New Approach to Treating Alzheimer’s Disease Replicates Life As It was 60 Years Ago.” http://www.kabc.com/2017/01/09/new-approach-to-treating-alzheimers-disease-focuses-on-long-term-memory/

The article talks about “Reminiscence Therapy” 

Here is an excerpt from the Article:
“Specifically, how that works, and what it has shown is reminiscence therapy really reduces agitation, improves mood and improves sleep quality, all of which are major factors when you’re dealing with the challenges of facing Alzheimer’s Disease. When you think about Town Square, really, what it is, is a complete, immersive environment that’s designed around a 1950’s – 1960’s time period, specifically from 1953 to 1961.

For those of you that don’t know the in’s and out’s of Alzheimer’s Disease, the first thing to go is the short-term memories. It’s why I have trouble remembering things from day to day, week to week, etc . . . However, talk to me about things from the 60’s, 70’s and 80’s, I’m as clear as a bell. So I think it’s awesome that a Town Square atmosphere is going to be built specifically for Individuals with Alzheimer’s in mind. It will put them in an environment where they are comfortable, non-anxious and happy.

So what does this have to do with WDW? I knew you would ask that question sooner or later, so I am prepared to tell you.

My first time going to WDW was in 1976. At that time the park was only 5 years old and the Magic Kingdom was all there was. Since that time, I have been back at least 15-20 times. I’ve lost count. I have seen it grow from just 1 park to 4 and I have been so many times, I know where everything is.

The last time I was there was in September. Shannon surprised me with a trip for my birthday. We had such a wonderful time.
One thing that stood out, and still does, was when we were waiting for the Wishes Nighttime Spectacular (the fireworks). Shannon had to go to the restroom so I stayed where we had found a good spot. Several minutes later, Shannon called to tell me she was lost and couldn’t find me. She was more worried about me than being lost. I talked to her to find out her location and I knew right where she was. I told her to look for the light. I turned on my phone’s flashlight and held it up, shining it in her direction. She saw it and followed it back to me.

She asked me, “How did you know where I was? How did you know to hold up the light?”  I had no answer for her. I couldn’t explain it other than to say, “I don’t know, I just knew.”

 On our last day there Shannon and I were talking about how much fun we had and then, she told me this . . .
“Since we have been here, you have shown no signs of Alzheimer’s, you didn’t talk about Alzheimer’s and you didn’t talk to anyone about Alzheimer’s. You even found “ME” when “I” was lost. You were who you used to be and I want you to hold onto that.”


With that said, she took me to the ticket counter and upgraded my park pass to an Annual Pass. She said, “I want you to come back here as often as you can, take as many photos as you like and just be who you used to be.”  I didn’t know what to say. I was elated, emotional, speechless. I didn’t think it was possible to fall more in love with her than I already had, but I did. And no, it wasn’t because she was giving me this gift, it was the reason why she was giving me this gift. She wanted me to feel normal.She wanted me to feel how I used to feel. She wanted me to have the clearest, non-foggy mind I could possibly have in a place I knew so well.

On the ride back home, I thought a lot. I tried to think as to why WDW transported me back to an earlier, normal-brained time. I knew part of it was because I had visited there so many times that everything was familiar. However, something just didn’t click. I was still unsure . . . until I spoke with my sister.

One day, on a phone call with Linda, I was telling her about the gift Shannon had given me. I told how it made me feel being back in WDW. Then I explained to her about not being able to clearly understand why I felt that connection, that is, until she asked me a very simple question . . . “Don’t they play music all through the park?”

When she asked that question, a wave of emotion washed over me, just as it is now. I started hearing the sounds, the musical sounds of  WDW, in my head. It wasn’t a particular sound or a particular song,  it was just the most beautiful, joyous, happy sound I’ve ever heard. Linda, reminded me of my love of music and how musical therapy (listening to your favorite songs from years gone by) can transport you back to a particular time and place. All the pieces of the puzzle fit together and I finally had the answer to my question I had been pondering since September.

I’m not sure why I didn’t think of the music but then again, I’m not sure what I think or don’t think anymore. 

The reason I am bringing this up now is next week, I will be in Orlando to be on a panel for the The National AT Aging and Dementia Decision Tree Workshop. I am going there a little early so I can make a quick visit to WDW. Call it being a “kid at heart” or call it “just wanting to feel normal.” I just want to be who I was before Alzheimer’s came along and robbed me of so many things.

Thank you Shannon, for giving me a gift of love, a gift of happiness, a gift of normalcy. Whether you are there with me or I’m by myself, you will ALWAYS be in my heart.

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Until next time . . . “Have a Magical Day!”

B

A Little “Monkee-ing” Around

“Here we come, walkin’ down the street,
We get the funniest looks from, ev’ry one we meet.
Hey, Hey we’re The Monkees . . .

Yes, I’m talking about “The Monkees.” The same “Monkees” who appeared on your TV’s on Saturday mornings in the 60’s. They are still performing today, well, 2 out of the 4 Monkees are. As you may know, or haven’t heard, Davy Jones passed away in February 2012 and Mike Nesmith no longer tours with Micky and Peter.

So, why am I wrimg_4739iting this blog post about “The Monkees?” ? Well, thanks for asking.
Shannon (my wife) and I went to Biloxi, MS last weekend (10/1) and saw them at the Hard Rock Live. They put on a great show, singing their songs, playing their instruments as if they were still in their 20’s. At 71 (Micky) and 74 (Peter) they can still rock it!

It was not so much the actual performers we went to see (well, Shannon did have a bit of a crush on Micky when she was younger) but it was the music they perform.
Sitting in that audience Saturday night, listening to them play all of their hits (and there were many) it just made me smile and forget about my Alzheimer’s for a bit. I was that little kid again, sitting on the floor watching TV, singing along to “Take the Last Train to Clarksville”, “I’m a Believer”, “Pleasant Valley Sunday”, just to name a few. And no, it wasn’t just me. The entire audience was singing along.

It’s a proven fact that while music can soothe and relax most people, it has a profound effect on individuals living with Alzheimer’s.
According to the Alzheimer’s Association “Music can be powerful. Studies have shown music may reduce agitation and improve behavioral issues that are common in the middle-stages of the disease. Even in the late-stages of Alzheimer’s, a person may be able to tap a beat or sing lyrics to a song from childhood. Music provides a way to connect, even after verbal communication has become difficult.”
Read more: http://www.alz.org/care/alzheimers-dementia-music-art-therapy.asp#ixzz4MVXGu4Zr

Being I’m in the middle stages of Alzheimer’s, I utilize music to kee me calm and relaxed. It takes the edge off and keeps me from being anxious. When I hear one of my favorite songs, it sort of transports me back to a place where I was clear-minded, relaxed and happy. I can only hope when I get into my later stages, music will bring me comfort.

OK, back to “ The Monkees.” 

 Like all of us, they’ve changed a bit.

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It’s just age. It happens to all of us, but like their song says, “That Was Then, This Is Now.”

They are still funny (especially Peter), bantering back and forth. There was a huge screen behind them  playing videos and showing photos from their TV show and performances. They even had Davy Jones singing his vocals on “Daydream Believer”. It was a bittersweet moment for the audience as well as for his 2 friends on stage.

I walked away from that concert feeling refreshed, clear-minded, wishing it would it would last . . . and it did, at least for a little while. 

Thank You Micky Dolenz and Peter Tork for continuing to do what you do.
Thanks also to Mike Nesmith and the late Davy Jones for doing what you did.

PEACE!
B