Sometimes I feel as though this has been a big part of my life for so long, that I forget that it’s even my life. It’s just become the norm. Which – let me start by saying – this should never be somebody’s norm. For those of you that had followed me on my previous blog, Living With Alz, you’ve heard a bit about my journey. For those of you that are brand new to this, and had never heard it before – welcome, and you’re in for a wild ride.
I was 22 when my family got the official diagnosis: my mother had Alzheimer’s. If we are being honest, we had known for years. Unfortunately, we are one of those families who didn’t get lucky. There I was, 22 years old, watching my mother receive the diagnosis for something we had diagnosed years ago. In fact, her doctor even backdated the diagnosis. Who does that? They do. Because it was clear. It had been clear for some time. And while perhaps my sister and I were ready for the diagnosis, I don’t think my parents were. Because that’s it. When you make the diagnosis, that’s it. It becomes official. You can no longer pretend. You can no longer go about your day being ignorant. You now have to accept it. And move on. As much moving on as you can.
I can remember my mom apologising. Yes, you heard that right. She apologised for having Alzheimer’s. Despite the fact that we knew what was coming, you actually can’t prepare yourself for it. You can read as many articles as you’d like. You can join communities, read books, and articles, and stories from others. You can do all the research that your little heart desires but I can tell you this here, and now. You cannot prepare yourself for it. It will break your heart. Because Alzheimer’s is one of those diseases where it’s just not going to get better. And it’s heartbreaking to say that. It’s heartbreaking to know that nothing good is going to come of the diagnosis – at least not for your family.
The only “positive” to this kind of diagnosis, is that you are now a caregiver that can help promote awareness for this disgusting disease. Which is what I have done since the diagnosis. I write about it. I tell people about it. I join fund raisers. I attend events. I do what I can to help spread the word because while it’s not going to get better for my mom, it may get better for someone else. For you. For me. For your family. For someone else’s family. The more awareness, the more money we raise – all of it. It goes towards someone else’s brighter future. This disease sucks. I’ve experienced it long enough now to really be able to say, without a doubt, this disease sucks.
And that’s why I write about it. That’s why this series is here, for me to tell you about the struggles we go through. I want to raise awareness about what we, as caregivers, experience. Tell you about what my mother is going through (in as many words as I can, but really – she’s the only one that truly knows what she’s going through). I want you to know you can ask questions, and you can be curious. I want you to know that we do laugh at a lot of the things that happen – I mean, what else can we do? Cry? We have. It didn’t change anything. We want you to see what we see, and we want to raise awareness. Because one more person knowing about this disease, is one more person that maybe, just maybe, can help us make a difference.
This series is going to take you in depth with our journey. With my mom’s journey. My family’s journey. This series is going to take you inside the experience, instead of watching from the outside in. Take a seat, hold a hand – we’re all in this together.