Austin Blackwell will be a first-time participant in the Walk to End Alzheimer’s this year. His grandmother was diagnosed five years ago. Angela Blackwell, Austin’s mother, joined our conversation part way through. In an interview with Georgia Voice, both opened up about their experiences as caretakers.
The following has been edited for length and clarity.
Could you start by telling me about your grandmother?
Austin: My Nana grew up in a small town in north Georgia. My mom is her only child, so when she started to show signs of Alzheimer’s, my mom felt we had to take her in and get everything figured out.
Once she moved in with us fully, it was very difficult, honestly — I don’t know the best way to say it — to see someone you care about losing not only themselves but you as well ….
One of my favorite memories with her once she came to live with us was when my siblings were home from school and I was home from living in the city, and we were just tossing around a basketball. My Nana came outside and said: “What are y’all doing here?” She grabbed it, and threw the basketball, and it went straight in the net! I was amazed … It’s something I will always remember about her.
My Nana is now at the memory care unit at Brickmont, and I’ve never met a staff more caring.
How did you get involved in the Walk to End Alzheimer’s, and what are you looking forward to about the walk?
Austin: This will be my first year participating. I was speaking with John Michael, asking if there were anything I could do. I would love to be a part, and help bring awareness, and be closer to my Nana. Well, with the pandemic I can’t be closer to her, but he was talking about the Walk [to End Alzheimer’s] and his group Millennialz, with the letter z at the end. I was, like, “yes, I would love to participate!”
Angela: I mostly hope it would raise money to get more research done, because I worry about myself. Am I going to go down the same road my mother did, the same road my grandmother did? I would love to think that research would be able to pick up and really find help so my children don’t go through what I’ve gone through.
When we talk about Alzheimer’s, many people have a fear of having Alzheimer’s when they’re older or having a relative with Alzheimer’s. Could you talk about confronting that fear?
Austin: I feel like it’s a justified fear, the fear of losing all your memories and everything you have worked your whole life for. I’m not going to say that I haven’t had that fear creep on me every now and then. What I would say to people who have that fear ….
I think it’s all about surrounding yourself with the people who love, support, and will be there for you. And, I think people need to realize that as a society people have made it this thing that you should hide what you’re afraid of and not talk about it. But with something like this, I think it’s the opposite, I think you need to talk about it and talk to your loved ones so you feel heard and cared about.
Angela: My grandmother has also dealt with Alzheimer’s, so I remember vividly being afraid my mother would end up like my grandmother did. It was huge for me, because I was afraid I would not be able to handle it correctly. So, it was very important to me when I realized we were headed down this road with my mother to have my children understand and be aware.
When I realized it was starting to happen, then it became: okay, this is what we will have to deal with. Now I live with the fear of: “will it be me?” It’s one of those things that’s generational — it stays with you.
Is there anything you think our society could do better to help caretakers?
Angela: Wow. There’s so much. Being a caretaker is definitely a full-time job.
You don’t have time to leave the home ….
The hardest thing is having people who can help. Austin was willing to help me, but he has a job. If I were leaving town for a weekend, he would make sure to schedule time off so he could be here to help, but having services where you feel comfortable that someone can come in and help, and give you that break — there aren’t a lot of those out there that are affordable.