When my mom was diagnosed with Alzheimer’s disease in July 2010, I was just twenty-five years old. I felt like I had just been hit with a ton of bricks. Not only did I not know much about the disease, but I also did not know anyone who had ever had it. I had no reference as to what Alzheimer’s was, what it did, what it looked like. I knew nothing. I was lost. I didn’t even know where to start. Back then, social media was nowhere near what it is today. Not everyone had a Facebook or Instagram account. I don’t even think I had an iPhone yet. My only source of information was the Alzheimer’s Association website, which really only had a list of the symptoms and stages of the disease. I remember looking at the descriptions of each stage and thinking that my mom didn’t fit neatly into any one of them. She was a little bit of this and a little bit of that, but I couldn’t determine a definitive stage for her. What did that mean? Who could I ask? Where could I turn for help? I was completely lost and I felt completely alone.
I spent most of the next three years feeling the same way. Lost and alone. No one my age had any idea what I was going through. It didn’t help that I hid my mom’s disease from anyone and everyone. I only told like two people about my mom’s diagnosis and I was determined to keep it that way. Maybe I thought that if I didn’t talk about it, then it would just go away. I also felt like no one would care because they weren’t going through it themselves. I just kept everything to myself.
By early 2013, I had started to tell a few more people about my mom’s Alzheimer’s diagnosis. All of my family and friends knew, along with a few co-workers that I had told for one reason or another. I found out that the Alzheimer’s Association did a fundraiser called the Run to Remember, which was part of the Delaware Marathon Running Festival. One of the options was to run a four-person relay for the marathon, so each person would have to run 6.55 miles. Those four people would raise money as a team for the Alzheimer’s Association. I found three friends who agreed to run the relay with me, so I registered our team for the event. Knowing that I would have to expand my fundraising efforts outside of family and close friends, I made a decision that would forever change the way I had been dealing with my mom’s illness. I posted about it on Facebook.
By that time, Facebook and social media had become much bigger and pretty much everyone I knew had a Facebook page. I decided that although it was way outside of my comfort zone, it would be an easy way to reach out to people for donations. I wrote a post telling everyone about my mom’s Alzheimer’s diagnosis and the fundraising event for the Alzheimer’s Association. People responded immediately with their support and began making donations to my team. I was touched by the response and surprised to find that I felt relieved to have finally told everyone. It was like my secret was finally out and I could talk about it openly for the first time. That was just the beginning of my Alzheimer’s awareness journey.
Just a few months later, I made the decision to quit my full-time job and I became a part-time caregiver for my mom. I gained a lot of knowledge and experience by dealing with my mom’s Alzheimer’s on a regular basis. I saw the progression of her disease over time and I felt all of the emotions that went along with it. I felt like I had a much better understanding of the disease and I was eager to find new ways to connect with my mom. I wanted to try to give her a better quality of life, despite her Alzheimer’s. I wanted to connect with other people who were going through the same thing. I wanted to tell anyone who would listen about Alzheimer’s disease. I wanted them to know what it was, what it did, and what it looked like. I wanted them to know that it was not just an old person’s disease. I wanted to put a face to Alzheimer’s and not one of a frail, elderly woman in a wheelchair. I wanted people to see my mom when they thought of Alzheimer’s. I wanted them to see me. I wanted someone, somewhere, who felt the way I once felt to know that they were not alone. To know that they had somewhere to turn. That they did not have to wander aimlessly along this journey with no one by their side. I wanted to be to someone the person that I so desperately needed seven years ago when my mom had just been diagnosed.
All of those thoughts and feelings led me to start this blog three years ago. I began to share my story with others. I began to show people what Alzheimer’s really was and what it really did. I began to tell people how Alzheimer’s affects not just the person who has the disease, but everyone who loves that person. I began to give a real and raw account of my journey. I began to share my innermost thoughts and feelings about dealing with this disease. Things that I might never have the courage to say aloud for fear of being judged, but when I sat down in front of the computer the words seemed to flow effortlessly from my mind onto my screen. Some people might wonder why I do this, why I share so much. Why? Because awareness.
Raising awareness means more than just simply telling people that Alzheimer’s exists. It means more than explaining that it’s a degenerative brain disease that causes memory loss, disorientation, and changes in personality. Most people already know that much. They’ve heard of the disease and they might even know of someone who has had it. The purpose of raising awareness should not just be to tell people that this disease exists and that we need to raise money to find a cure. While raising money for research and finding a cure should be important, it really doesn’t do much for those people who are already dealing with the disease. Raising awareness should do more to help those people. And it can. The more people know about the ins and outs of Alzheimer’s and what it’s like to be a caregiver, the more likely they are to reach out to help someone who is affected by the disease. I think there are a lot of people out there who want to help, but maybe they just don’t know how. They don’t know what they can do to help their neighbor or friend who has the disease or is taking care of someone who has it.
That’s why awareness is so important. Let’s tell people about this disease. What it is, what it does, and what it looks like. Let’s tell them about a day in the life of an Alzheimer’s caregiver. Our daily struggles and the strength it takes just to make it through the day. Let’s tell them about our deepest, darkest thoughts and feelings about the disease. The grief, the sadness and depression, the guilt. Let’s normalize those thoughts and feelings for other caregivers who are just beginning their journey. They shouldn’t feel isolated and alone in their feelings. They shouldn’t feel bad for feeling the same way that probably every other caregiver ever has felt at some point. Let’s tell anyone and everyone our stories so that when they think about Alzheimer’s, they see our faces. They see our faces and they want to help in any way that they can. Let’s make Alzheimer’s the new cancer. So that when you tell someone of your diagnosis or your loved one’s diagnosis, they don’t disappear into the abyss. They don’t get scared away. Maybe they’ll even show up at your door with a casserole instead.
Awareness matters. There is no way for anyone to know what we go through as caregivers unless we tell them. There is no way for them to know the impact of this disease and what it does to entire families. There is no way for them to know how to help. If you don’t think awareness matters, then just try telling your story to one person. Even if you fear that your words may fall on deaf ears, tell it anyway. I promise that it will at least make you feel better to get it out. It might even light a spark in your soul that sets a fire under your ass to get out there and do something more. Think about where you were when you or your loved one was first diagnosed with Alzheimer’s. How did you feel? What did you need? Who did you need? Be that person for someone else. Be the person that you so desperately needed by your side at the beginning of your journey. Once you start sharing your story with others, it won’t be long before someone you know reaches out to you for help on their own journey. It’s happened to me. It’s why I do what I do. It’s why awareness matters.
