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Rodeena Stephens, founder of Fight To Remember and member of Alzheimer's NYC Chapter Board of Directors 

A New Chapter: My Journey to Rediscovery 

Since 2009, I was a caregiver for my mom who suffered from Alzheimer’s. My beloved mother lost her battle to Alzheimer’s disease on May 21, 2013 at approximately 5:00pm. I can honestly say that it was a pleasure to serve her. With that said, I can also admit that the emotional toll it took on my life impacted me on a variety of levels.

For as long as I can remember, I’ve been in love with the art of writing. I’m a writer at heart and to this day still have my old journals and diaries that kept my mind occupied from my childhood to young adult. Over the course of my life, I have experienced many lows, as well as received tremendous blessings. I consider myself to have the endurance fitting of a rubber band. No matter what came my way, I could bounce back. I’ve experienced loss, heartache, life-changing surgeries and more. And through it all, I’ve been unscathed and maintained my creativity and passion for the things that shaped me into the woman I am today. However, in 2009, my life changed. I don’t have any children; however, at my mother’s life’s end, I cared for her as if she were my child. Alzheimer’s disease slowly destroys the mind, and eventually this strong, beautiful woman became my child. I sacrificed much for her – just as a mother would sacrifice for a child. I gave up a balanced social life, finances and career growth because my mother became the focus of my life. Since I’ve never been a parent, I can’t say for sure that parents can relate to what I’m about to say – I mentioned previously that I’ve endured much in my life by way of pain, loss, emotional hurts and more, yet was still able to keep it moving. But, when this my mother was impacted by this terrible disease, when the woman who taught be about love, respect and strength was inflicted in her mind, I literally almost lost myself. It’s one thing when hurt and affliction comes upon us, but when it comes upon our children, loved ones, parents… I don’t know about you, but it literally stopped me dead in my tracks. Don’t get me wrong, I still continued to work, I’m communications director at one of New York’s largest churches, I have an LLC, I’m a social media consultant and also an adjunct professor but still, with all of those accomplishments, my passion for writing simply disappeared. As my mother’s Alzheimers increased, my passion for creative writing decreased.

The responsibility of caregiving is a great one. Research on caregivers dictate that many caregivers almost lose everything, homes, finances, marriage, family and friends. Although home health aides came to the house, it didn’t prevent the “curfew” that was placed upon me. And true, this pressure seemed overwhelming at times; the truth is I would do it again. God sustained and strengthened me during the most challenging times of my life.

My mother passed away peacefully but the longing I have for her to be with me is far from  peaceful. There is an emptiness that no one can replace and an indescribable heartache that seems to never go away. The wonderful thing about my mother is that she taught me to NEVER give up. My mother would always say to me “you can’t think straight when you cry,” and telling this to someone who is emotionally passionate; which includes crying, used to be a hard pill to swallow. So as I go into this 2nd month being without my mom, I can do one of two things. Do I just let the pain of her permanent physical absence hinder me from doing all that she’s ever encouraged me to do; I can sit here and cry and focus on me the victim, a motherless child – hence, not think straight. Or I can use this energy to do the things my mother encouraged me to do. Express myself, be all that I can be, never give up and keep it moving. I choose the latter. So as I sit here on this hot Saturday afternoon, I realized for the first time in months that I miss writing. I’ve spent so much time as of late reading the beautiful writing of others that I almost missed the fact that I do have my own story to tell. As the Bible so eloquently reminds me in Psalm 139:14  “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”

My mother was 80 years old when she passed away. For the last 3-½ years I was blessed with the privilege to create a quality of life for her. She loved, she lived, she laughed and most importantly she knew God. During my mother’s last several weeks of life, I sat by her side, I sang with her, prayed with her, danced for her, laughed and thanked her for the sacrifices she made. In those last few weeks, that was all that mattered. To spend her last days by her side, holding her hand, talking to her, comforting her even during her last breath of life… well, it was the most difficult thing I’ve ever experienced; however, It was also the most rewarding experience. My mother simply fell asleep and I know without a doubt woke up in the arms of God.

I truly miss writing, and what better way to start writing again other than writing this tribute to my mom. She was my mother, my friend and my first love. So, I’ve begun a new chapter of my life, I’m on a journey of rediscovery and I’m excited, yet fearful. But fear will not stifle me because it’s simply not who I am and certainly not who my mother raised me to be. I truly miss writing, but I miss my mother more and for that reason I will continue to write and bring awareness to Alzheimer’s. 

Experiencing first hand the impact that Alzheimer’s has on the one that is inflicted, as well as the caregiver, is the reason why I developed Fight to Remember. I believe the first Alzheimer’s survivor will become a reality. Until then, I Fight to Remember… Until then, we all Fight to Remember.

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