If you ask any young kid at some point in their life, “Who is your hero?” or “Who is the most influential person in your life,” nine times out of ten they will answer with pure confidence, “My Mom”. I am no different, even at the age of forty; my response would free flowingly be my mother. Let’s face it, it is our natural reaction to be attached and enamored to this woman we were given birth by, and who has held our hand in good times and in bad. Mothers stand up for us, they guide us, and they teach us literally everything they know, sometimes without saying a single word. My mother has literally given her all to me and my family; she has strongly shaped my life, in every aspect.
A sad shift
Recently, my family has experienced a rather sad shift and I feel like my whole world has been turned upside down. Within the past few years, it has come to the forefront that my mom has been diagnosed with Alzheimer’s disease. My mom. My strong as nails, tough cookie of a mom. The woman who started her business with almost nothing to her name and has managed to survive in a rather tough area and support her family for over 40 years. My mom who was vivacious as could be, the fixer-upper parent, and the down and dirty in the garden parent. The one who would step in and “handle things”. My mother who was, and is the glue to my family. The now Grammy to my kids, who without her, I could have not raised my kids past the toddler phase. My mother is battling this ugly, heart-wrenching disease that is so prevalent in our world. Let me also mention that my mother is so very young, only sixty-six of age.
Alzheimer’s is so much more than just losing one’s memory. It literally crushes family. One of the hardest things I have witnessed is my father having to step into every role that he never paid much attention to. Whether it be financial decisions, household chores, family business relations, or medical choices, he has had to step up like never before. It is a learning curve for everyone that surrounds, and everyone has to step up to the plate, guns a-blazing.
True love looks like this
Every single day I watch my father as the main caregiver take care of his true love, and I feel like I am watching a real-life version of the movie “Fifty First Dates”. If you aren’t familiar with it, it is where Adam Sandler’s character falls in love with Drew Barrymore’s character, and she has suffered a brain injury. Each day he wakes up and finds a new way for her to meet him and fall in love with him, making her each day unique and special. This is what life is now like for my parents. Each day comes and goes with different challenges, but my father says, it is all about making her happy and comfortable. Whatever it takes. He has become her Adam Sandler in a sense, reminding her of all the things she loves, making it through one day at a time, and putting her happiness on a pedestal, no matter how trivial or silly it may be. It is now his main focus to find small moments of joy. That is marriage goals right there people because let me tell you this disease can get ugly at times and is sure to get uglier. Again it isn’t just the forgetting, it can be the pure belligerence and neglect of who that person is, the constant worrying about the dumbest things that they nag and nag you about, but you have to roll with it. Whatever it takes.
The hardest thing for me personally has been the relationship between myself and my mom that has changed. Sometimes I feel like I have already lost my mom because I know she mentally just isn’t there. It literally kills me and rips at my heart knowing my hero is gone, but yet is very much still there. Like any great influence, you want to be just like them, and I was no different. From a very young age, I followed in her footsteps, with her cheering me on from the sidelines. I then continued to work beside her for many years, and we were a true “team”. She was and still is the fuel that keeps me going to be better, to learn more, to inspire kids, and to expect more from myself and more from those around me. She drives me to keep her legacy in motion; in fact, she is the sole reason I keep trucking forward. My Hero. Whatever it takes to make her proud.
Even though I feel that sometimes my “old mom” is gone I have to focus on the present, therefore I have taught myself to do a “pivot”. I do a little shift in my focus to see what is really important and remind myself she is still very much here with me. Though at times she has reverted into childlike patterns with wants and needs as if she were a young kid, she is and always will be my mom. So when times get tough and you are having a difficult time (in any life circumstance), I urge you to pause, and pivot. Let go of the expectations and shift into the REAL time, what is present.
Whatever it takes
As things have unfolded, and my mother no longer comes into her business that she created as much as she used to with plans teach her classes, I am now grateful for the few moments that she does come in and dances with us. She will now come into MY class that I teach of 11-12-year-olds, and when she leaves she thanks ME. She always turns to me and says “Thank you, I had a lot of fun.” She may not be instructing a class of twenty anymore, but she is still doing what she loves. I recently made her a tap board for her Birthday, and through this quarantine, she laces up those tap shoes and taps an hour every day, with my father cheering her on. She may not remember simple things, or yes she gets irritated easily, but when she taps, she is very clear in her intention and her purpose. She hasn’t forgotten a single step!
Having a parent with Alzheimer’s has made my family and I dig down deep. We are here to support her from all angles. It is a challenge and wipes you out, period. This is the true definition of “the struggle is REAL”. I always try to remember, as hard as it is for us on the caregiver end, that she is the one fighting so very hard for a small piece of herself. I see it behind her eyes and in her soul how hard she is fighting each day. I see her pride when she can do something, whether it is playing baseball with my dad, hitting a tennis ball with my girls, or when she can recall childhood memories. She is fighting the real fight, and we stand with her. Whatever it takes.
The subject of this beautiful story is Janet Dunstan, founder of Janet Dunstan’s Dance Academy, Niagara Falls, NY. Janet is a local dance legend and hero to thousands of young girls and boys. https://www.janetdunstansdanceacademy.com/
Alzheimer’s Association: https://www.alz.org/