“to remember love” (Alzheimer’s)

by Tonya Ferguson

tonya fergusonAs a little girl I dreamed of what I wanted to be when I grew up. Mostly the typical nurse, wife, teacher, mommy, secretary, singer, movie star, etc. But, nowhere in my thoughts did I ever think, I want to be an orphan when I grow up. Never in my wildest imagination did I think, I want to be a full-time caregiver for 9 ½ years in my home, 24 hours a day, when I grow up. Nor did I think, I want to learn how to cope with grief from the utter most depths of my soul for the rest of my life when I grow up. Nope, those things were NOT on my wish list when I was a little girl.

As I grew up, I was shown and told daily that I was loved. My family was extremely close, and we were all allowed to show our emotions and affection all the time. My parents were my greatest examples. I was always encouraged to follow my dreams. And as I did, I lived them to the fullest, with all the zest and zeal I could muster up. Then a dark day came, and I found out there was a sad part to living my dreams. That was the day I was jolted awake from my wonderful dreamland, by the crushing reality that I would never be able to live those dreams again.

I knew my life would never be the same, but what I didn’t know, was how I was supposed to live the rest of my life from that moment on. Looking back, I see it was God’s Unending Grace, and me allowing my Faith to guide my steps when I couldn’t see through my tear-filled eyes, that got me through the most vicious and unrelenting storm of my life. One that I walked out of so much stronger than I was when I walked into it. It literally changed my life, and changed who I am as a woman, for the better. Fifteen years ago, I never would’ve thought I’d ever say those words. Now I’m able to hear my words coming out of the mouths of others that are battling their own storms.

Never could I have thanked my parents enough for giving up their lives to give life to a dream my brother and I shared. They made it possible for us to open up our own family-focused Country Music Show. We performed as a family on stage, six nights a week, six months every year, for sixteen years. We absolutely LOVED what we did. It truly was a dream come true, until…

It was on a cold, January day that I experienced my first heartbreak. On that day a deep, black, bottomless hole bore its way through my heart. A hole that went to the very depths of my soul and would never be filled back in. A hole just as real and unexplainable as each unique sunrise is that we experience every day. A hole that was always meant to be seen and felt, but never meant to consume, destroy, or bury me in.

On a Monday evening in January, my father collapsed at the dinner table after sharing his last prayer with my mother, and taking his first bite of the last meal they ate together. Thirteen, unimaginable, life-altering, and horrible hours later, as I softly sung his favorite song, “I’ll Fly Away” in his ear, my family and I held him as he left this world and bounded through the Gates of Heaven. The details of that horrific night are permanently embedded in my heart, and live forever in my story that I later put down on paper, after experiencing the second greatest heartbreak of my life. So, it was on a crisp, clear January morning when my “Grief Journey” was born. How was I to know I was going to have more losses to face so quickly?

Within a couple of weeks of my dad going “Home,” we had to make a decision we never thought we’d have to make as a family. We had to decide if we were going to continue doing our Music Show or to end it. None of us could bear the thought of going on without dad, so we agreed to close our family show. We had to end our family’s dream. This was my second loss in two weeks. Surely, that was all I would have to endure. Or was it?

Right on the heels of losing my dad and losing my family’s dream business, I was nowhere close to being prepared to find out I would also be losing my mother. I’ve always heard if you get “Three Strikes, Then You’re Out.” But I decided I was going to change that rule.

Before I could even begin to process my grief, I began to notice that there was something wrong with my mother. I’m not sure of the exact day or time it became a member of my family. I do know that by the time it made itself known, it had already been with us for several years. I don’t remember the exact moment things turned from being something I could easily explain away, to the crushing reality there was an unwelcome stranger, intruding itself into my family. I just remember the moment I realized how much I despised this horrible thing that had forced itself into our lives. There was no way I could’ve prepared myself for what was ahead of me. I couldn’t even conjure it up in my wildest imagination. How was I going to know what to do when my mother was diagnosed with “Early Onset Alzheimer’s Disease” when she was in her early fifties?

I can honestly say, until I became one, I had never heard the word “Caregiver.” I certainly wouldn’t have considered myself qualified to care for someone with Alzheimer’s. But that all changed the day the doctor handed me a prescription for Aricept, said there was nothing he could do, and sent me on my way. I have never felt more lost and alone than that moment. I wanted to run screaming out of that building and never come back. But I didn’t. From the day I received her diagnosis, there was never a choice as to what I would do. I just knew I was going to take care of her. And so my Caregiving Journey began at the same time I was still grieving the loss of my dad.

It didn’t take me long to realize that Alzheimer’s, just like all diseases, came from the pits of satan’s hell, because he is the one that comes to steal, kill and destroy. God did NOT give my mother Alzheimer’s. He doesn’t give anyone horrible diseases.

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I really wasn’t prepared at all to see how Alzheimer’s was going to ravage the brain of my beautiful, intelligent, witty, and loving mother. It was horrible to watch it continuously take her further and further back in time, until she was calling me mommy, and then not able to talk at all.

If I would’ve tried to survive living that nightmare on my own strength, I would have curled up into a fetal position and quit very early on. But I wasn’t doing it on my strength. Each and every morning God gave me a whole new portion of strength I would need to get through that day.

I’ve learned that grief is a journey. And like all journeys, it’s meant to have a beginning and an end, (of sorts). I remember in the beginning of my “Grief Journey” from losing my dad, that sleeping was a nightmare, but so was being awake. That one day was no different from the next. I remember not feeling alive, yet pain was everywhere for me. I remember the paralyzing effect it had on me day in and day out. Notice I said in the beginning. As time went on, I found myself transitioning from one gut-wrenching stair step of grief to the other. Each one I conquered gave me the strength to climb on to the next one. As I walked further away from the January morning when my “Grief Journey” began, I was able to come to terms with my grief because my dad was no longer here with me. I had to learn to deal with what was actually in front of me, and the reality was…he was gone.

When I became my mother’s Caregiver, I was shocked when I started having those same feelings of grief I had with my dad. How could I be grieving, she was still here with me? I could reach out and touch her and talk to her. It was then I learned a gripping lesson. I was on another “Grief Journey.” But this time it was unending. It was like being stuck on a hamster’s wheel. I began to grieve every time my mother lost another function or ability. Just as I would grieve through the loss of that function or ability, she would lose another one, and I would begin to grieve all over again. This happened time, after time, after time. That’s when I came up with the phrase, “Perpetual Grief.” For 9 ½ years, I daily lived in the midst of “Perpetual Grief.”

I’ve learned that grief is actually a very selfish thing, it’s all about the person that’s grieving. It’s about US missing OUR loved ones. It’s about OUR heartache. It no longer has anything to do with our loved one that’s no longer here, because they couldn’t possibly benefit from OUR grief now. It’s all about US. I’m here to tell you there is no protocol for death, loss, or grief. It’s all a very personal thing. There are no rules, no winners, and no losers. Once you’re dealt a hand in the game of grief, you’ll suddenly find yourself playing solitaire. We each have to find our own way, on our own Grief Journey, and in our own time.

I was actually surprised to discover that when I gave of myself to help others, it took the focus off of me and my pain. So, during some of my worst grieving moments I chose to help people who were in need around me. Once I stepped out and did that, it gave my grief a positive and constructive place to go, and it helped me greatly.

I have now lived through two types of loss. One was a quick, shock-invoking loss. The other was a slow, arduous loss that took more than fifteen years. I think in some ways the slow, arduous loss took a little greater toll on me. Or maybe it was just that I never had time to process the loss of my dad and our family business, before I was thrust into dealing with the slow, arduous loss of my mom, as well as being a full-time Caregiver. In the end, they both were monumentally, heartbreaking losses, that forever changed my life.

By far, being a Caregiver was the most difficult, thankless, exhausting, challenging, frustrating, heartbreaking, and the loneliest job I‘ve ever done in my life. However, being a Caregiver also gave me the opportunity to give the greatest gift of “Unconditional Love,” and has left me reaping rewards that words just can’t describe.

So much good has come out of that dark, relentless storm I walked through. I began writing music, lots of music. Songs that I found could reach into the heart of others that were being crushed under the weight of loss, sorrow, grief, and Caregiving. A door has been opened for me to mentor and counsel with others who are hurting, because of all that I’ve experienced. I also wrote a book telling my story. All the words I wrote down on all those pages were to give a Voice to all the Caregivers, Compassion to all the Grieving, and Hope to all the Hopeless.

My Book CoverMy book, “to remember love,” tells my story of “Real Life, Real Loss, and Real Love.”

The kind of “Real Life” that at times is broken, imperfect, hopeless, heart-breaking, bewildered, sorrow-filled, grief-ridden, and lost. My book shows you that “Real Life” is not always what we want it to be, and is not always as it seems.

The kind of “Real Loss” that permeates every fiber of your being, causing you to wring your hands in disbelief, float aimlessly in a pool of tears, crawl into a deep cavern of ache, and withdraw from living. My book shows you that “Real Loss” is not what you have to be defined by for the rest of your life.

The kind of “Real Love” that picks you up and carries you through the darkness and into the light, that gives you peace when the battle is raging all around you, that gives you a rainbow at the end of your horrendous storm, that is a super natural, pure, and perfect kind of love that can only be given by God. My book shows you that there is “Real Love” that will give you the kind of Peace that passes all understanding, and will allow you to overcome all obstacles placed in your path.

The day I started writing and reaching out to others in their time of need, was a wonderful day. That was when my Healing truly began. The day my pain found a positive, new purpose, was the day I was really no longer feeling the same pain.

About the Author: Tonya Ferguson was born and raised in Missouri, is a wife of almost 33 years and mother of two daughters. Her life has taken many twists and turns throughout the years but mainly she is an Author, Singer, Songwriter, Recording Artist, and Life Changer. She paints landscapes of truth about real life struggles with her songs and books she writes. Her delivery takes you on a very personal healing journey, by sowing a “Seed of Need” into your life’s soil.

Tonya is no stranger to the pain and sorrow life can bring at times. She knows, all too well, the crippling condition grief leaves you in, as you face each morning without the sun. Her life, and every breath, was overwhelmed with grief, loss, and Caregiving on many sunless days. As devastating as that was for her, she has learned that she is able to encourage and guide others in a very intimate and unique way, because of all she has endured.

This is a new season in Tonya’s life. She’s learned the benefits of “Embracing Change,” and sharing those life changing and invaluable benefits with others is her life’s purpose. Through her Real, Relevant, and Relatable voice in her book, her music, one on one, and blogging, Tonya shares her wisdom and lessons she’s learned, allowing lives to be changed from chaos and pain, into peace and healing. She invites you to walk alongside her on her journey.

You can learn more about Tonya, read excerpts from her book, read her blogs, listen to her audio blogs, listen and download her music, purchase her book, and contact her by visiting her website.

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