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.

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.

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

The Disease that Keeps on Taking

This morning when I opened up Facebook, I saw I had a message from a good friend of mine. It read, “My thoughts, love, and prayers are with you today.”
I thought to myself, “How very nice of her to say this.”
Then I read it again and thought, “This is what people usually say when you’re having an operation or you’re starting a new adventure or when you lose someone.”
So, I wrote back to her saying, “Thank You, but why do you say this today?”
Then I looked at the date, January 14th, and tried to think of anything that happened on this day.
Sadness all of a sudden overtook me.

10830689_10204543352758086_1036799725875045458_oI walked over to my desk to look at my “reminder board” and at the top are 2 Prayer Cards from the funeral services of my Dad (2/8/10) and Mom (1/14/15). I knew before I looked but I had to verify, not just that today was the 1 year Anniversary of my Mom’s death, but to realize I had forgotten.
Hours later as I am writing this, tears still flow, not just because she is no longer of this earth but because of the disease I share with her, the disease that took her mind and memories, that same disease that is now taking mine . . . Alzheimer’s.

You know, it’s strange how the Alzheimer’s mind works. The memories don’t come back on their own. A bit of prompting is needed. So, as I sit here trying to remember details of that day, the one and only memory that comes to mind is of a phone call from my sister.
When I first saw her number pop up I froze. You see, my Mom had a stroke a week or so previously and she could no longer chew her food, or swallow for that matter, so a decision was made to allow her to be comfortable and pass away in peace. (This may not be exactly factual but it’s the way I remember it and that’s good enough for me.)

Anyway, my brothers, my sister, my nieces and nephews all went to say their goodbyes10931127_10204543328837488_6014411360357330344_n but my Mom, who always had a strong will, just kept hanging on, as if she was waiting for something. That is what prompted my sister to call.

You see, I live in FL, I was just diagnosed with Early-Onset Alzheimer’s about 2 1/2 months previously and I was only driving sparingly. Making a trip at that point was not possible.
Anyway, my sister called and said, “Everyone has been by to see Momma, everyone but you. I know you can’t be here physically but I think she is holding on to hear your voice. I’m going to put you on speakerphone and I want you to tell her good-bye and that it’s OK to go.”
It was the hardest, yet the most beautiful thing I have ever done.

So, I had a “one-sided” conversation with my Mom. I told her about my Alzheimer’s diagnosis and since we shared so many things in our lives (I was the youngest and a bit spoiled by my Mom and my sister) why not share Alzheimer’s as well.  I told her how well I was being taken care of by Shannon, Asheton and Bradley and how I couldn’t feel more loved.
I then told her that it was OK to go. It seems she had taken care of so many people during her lifetime that maybe she felt she still had more to do. I let her know that everyone was in a good place and that she could now go where she could finally rest. (like I said before, this may not be EXACTLY what I said, but it’s what I remember).

My sister told me that while she was listening to my voice, there was eye movement under her eyelids as if she was aware. I’m not sure if that was possible but because we know so little about Alzheimer’s, anything is possible. I don’t remember if I sang to her to her or not (we shared a love of music as well as singing) but I would like to think I did. I told her I loved her and then spoke to my sister gain.

A few hours later, I received another phone call to let me know she was gone.

As hard as I try, I don’t remember anything of the days that followed. Maybe that’s a good thing. I’m sure they were filled with sadness and I’m probably better off not remembering.

All of this makes me wonder . . . “Do people in the last stages of Alzheimer’s still hear and understand but just can’t communicate back?” I hope so. I hope I can still hear the voices of my loved ones when my time comes. I want to hear their voices and music and all the things that make me happy. I can only hope.

Next year, I don’t know know if I will forget this day again but if I do, I hope someone will remind me. For now, for today, while I still do remember, I will think fondly of the woman who . . .
– gave me life
– taught me to always open doors for people – especially ladies and the elderly
– to say yes sir and yes ma’am
– taught me to always carry a handkerchief
– shared with me her love of music and gave me my singing voice
– loved me unconditionally and with all her heart

I love you Mom and always will.
Rest in Eternal Peace. Hope Dad isn’t bothering you too much and I’ll see you soon.
At that time, we’ll find some place to sit, put on the Sound of Music soundtrack, sing and reminisce . . . clearly.

Until then, I will keep on keepin’ on, trying not to burden Shannon and the kids too much and continue doing what I do and I do it in honor of YOU!

PEACE
B

 

 

 

 

 

 

One Battle Over, One Just Beginning

Yesterday, we laid my Mother to rest. Her battle with Alzheimer’s was over and she could, once again, think with a clear mind and live out her eternity in peace.

It’s always hard  to say good-bye to a loved one. In the past, I’ve had to say good-bye to Friends, Grandparents, Aunts and Uncles, Cousins, a Niece and Nephew, and my Father. I knew it would be hard to say good-bye to my Mother, I just didn’t know “HOW” hard.

Previous to her physical departure, Alzheimer’s took her memory, her speech and her ability to take care of herself. A stroke led to her not being able to swallow liquids or food. This led to her final demise. “Garden of Memories” did an outstanding job of erasing the effects Alzheimer’s had on my Mother. My sister and sister-in-law dressed her in clothes they knew she would have loved. She was once again, in death, restored to her lady-like stature. Although that was beautiful, I was not ready for the amount of tears that would flow from within me.

You see, not only do my Mother and I share a “Mother/Son Bond,” we also share Alzheimer’s.

Riding to the funeral home, during the visitation, praying during mass and finally saying good-bye at the gravesite, I couldn’t help but think, “What will my Alzheimer’s journey be like and how will it end?”

Ever since I was diagnosed with Early Onset Alzheimer’s I started researching this horrible disease. One thing that stood out is that it is one of the most under-funded, under researched diseases. I know there are some medications on the market right now that may assist in “slowing the progress” of Alzheimer’s but there is no cure. If a cure is discovered, by the time it’s available for consumers, the cost will probably be astronomical and will be too late to do me any good.

I keep telling my self I can’t worry about what will be, so I’m committing myself to concentrate on the here and now. I have a family that loves me and cares deeply about my well being. I want to give them all the love I can possibly give. I want to make good, positive memories with them, that, although I will forget in the future, they will retain. I want to spend more time with my brothers and sister and their families to create memories with them and for them. I want my friends to know how much I care for them, what their friendship means to me and how much I appreciate them.

I will fight this fight as long as I possibly can.

This is such a cruel disease. I know there’s a reason for everything, but I can’t help question it’s existence or what purpose it serves. That goes for every disease. I know I’ll never know or understand, but that won’t stop me from wondering. Until that time, I will be an Advocate for Alzheimer’s. I will bring attention to this disease, I will do my best to raise money for this disease and hope and pray for a cure.

Mom, thank you for a lifetime of memories. I cherish each and every one and I will hold onto them as long as I can. No matter what my future holds, you will always be in my heart!