by Audra McShane
If you asked me 5 years ago, what are you afraid of most? My answer would be losing someone to dementia. I could not wrap my head around someone I love losing their memory and suffering through such a debilitating disease. Little did I know, my life would change drastically in the following few years.
My mom (Shara) was a realtor, an entrepreneur, a weather expert, a beachgoer, an animal lover, a wife, a daughter, a sister, and a mother. She didn’t care what the norm was, she was going to do what she wanted when she wanted. My mom is still all those things, but it’s different now. She is, and always will be, my best friend.
The year is 2017, and I am living my dream as a Golf Professional in Florida. This was around the time I realized something was off. You see–my mom and I talked every day, about everything, until the calls stopped coming in. At the time, I chalked it up to her being busy at work, and she must not be able to give me the attention I needed; after all, I was 26 and an adult living on my own. I had recently moved to a new house in Florida and mom came down to help me get settled. This was the first real wake-up call that something was really wrong. I spent that weekend helping her feel comfortable, making sure she didn’t lose her phone or her jewelry, and taking care of her. I didn’t know what was going on, but I knew it wasn’t good.
Fast forward to June 4th, 2018. I remember that day so vividly because I had my PGA Playing Ability Test, a golf tournament required by the PGA to become a certified professional. This was a big day for me, I had to shoot a certain score to become eligible. It was also the day my mom was diagnosed with Young Onset Alzheimer’s Disease. That day would change the course of my entire life.
I got a call the next day from my stepdad (Scott) who explained the diagnosis to me. I couldn’t believe my biggest fear was actually coming true, let alone to the one person I have always been afraid to lose. It paralyzed me. I immediately sprung into action, doing all of the research, looking up clinical trials, trying to find a way to get out of this disease. I soon came to realize there is no out. How could my mom be 56 and have Alzheimer’s? Is that even possible? Then it hit me, how can I help my mom if I am living in Florida? I had to make the first big decision of my life: do I stay in Florida and do what I can, or do I move home to help my mom and Scott? After 3 months of pros and cons lists, discussions with my family and friends, and my personal gut feeling, I decided it was time for me to move back home to Baltimore.
I said goodbye to Florida and officially moved back to Baltimore in January 2019. I had a new job at a great golf course, I had my support system, but most importantly I had my mom. In the beginning, I felt a sense of relief to be home. It didn’t take me long to realize this was going to be a lot harder than I thought. I quickly learned how difficult it was to manage life as a caregiver. In the golf industry, you are expected to work long hours in the summer, on weekends, and on holidays. As my mom was progressing, I realized that I did not want to miss these times with her. After a year of being home, I decided it was time to find a career that could offer a better work/life balance.
This next life change was a hard one. I always knew I wanted to teach golf, I played golf in college, I became certified with the LPGA, and was working on my certification for the PGA, but my mom and my life were more important. I searched job boards for months trying to figure out how I could transfer my skills as a Golf Professional to the corporate world. I ran across a LinkedIn job posting from a gentleman I previously fitted for golf clubs (small world). The company was looking to fill a position for the IT/HR Helpdesk, a position that required skills in customer service and problem resolution. I knew this was something I could do! I reached out to the recruiter and was hired the next week. Once again, I was relieved. Now I could work during the week and spend the weekends/evenings with mom and Scott. I have been working at this company now for a year and a half and it has given me the ability to be a caregiver for my mom and manage my life.
It’s now 2021 and my mom is considered stage 6 of the disease, there are only 7 stages total. She pretty much needs help with everything she does. Although I made all of those changes in the last few years, the last few months have been the hardest for me. The pandemic has given me the ability to see my mom more than I ever would have imagined. I cherish every moment I have with her, but I know it will just get harder as time goes on. I never truly knew that you could actively grieve a person that was sitting right in front of you. I catch myself staring at her, longing for the mom I had, that I lost, and I am worried that I will only remember her with Alzheimer’s. This is supposed to be the time in my life where my mom becomes my friend, my ally, my support system, the person that helps me make the big life decisions. I constantly think about what my life would be like if this never happened. I watch my friends have lunches, parties, weddings with their moms and I envy that so much. If only I could do those things with my mom. I think about Scott and the sacrifices he has made in the last few years. These were supposed to be the good years for my parents–full of grandchildren, vacations, and retirement. Without him, I don’t know what our situation would look like. He lives and breathes this disease each and every day. No matter what happens, I will always be eternally grateful and proud to call him my stepdad.
Throughout the last few years, I have had trouble venting to others. I always felt that no one truly understood what it was like to watch your parent slowly lose all of themself at such a young age, and that no matter how much time I spent with my mom, I always felt I should be doing more. After months of research and connecting with Alzheimer’s groups that didn’t necessarily apply to my age group or my mother’s diagnosis, I finally found YES! A small, intimate group with so much potential that I knew this was the place for me to not only have my own voice heard but help others find their own platform.
I am truly grateful that I have found others who can relate and understand. The reality of the situations that we all face is that eventually, our loved ones do forget all the things that made them who they are– and that pain is not replaceable. I have predicted the future, thought about what I will do when she forgets my name, thought about what I would say at the funeral, and have thought about what my life will be like without my mom. I have recently realized that though all of that is true and in my future, that I can only control what happens in the present. I have been actively working to redirect these thoughts into positive things. Instead of thinking of the future, I am trying my best to be grateful for the time I have with my mom, that she trusts me to help her, and what an honor that is. This is where YES! and our work is so crucial: in easing the pain that so many of us face, and saying “yes” to the moments that we are in.
My mom was diagnosed 3.5 years ago. Since then, I have relocated, switched jobs, changed my career path, and become a caregiver. I would not change a thing. Unfortunately, this disease changes everyone it touches, but it makes you look at life a little differently. Always cherish the little moments, love your family and friends, and take the opportunities you are given. This is my story, and it is ever-changing. Because of Alzheimer’s I am stronger.
