I am guilty. I am guilty of forgetting who my mom was before she was diagnosed with dementia. I always say that my mom is not her disease, yet it’s often hard to look beyond her odd, usually embarrassing behavior. She’s a stranger to me. I struggle to play the part of daughter because I’m not the daughter anymore. I tell her what to do. I become cross with her. I take away her freedoms. I don’t like when she tries to hug me. I have built a wall, the Berlin Wall, between us.
Worse yet, I can’t remember what she was like before she got sick. I’ve placed old black and white photos of her on my bookshelf — mostly because I’m hoping the images will trigger something, anything in me to remind me that she’s still my mom… she was so beautiful. It’s strange. She’s only been sick for maybe four or five years, yet my memories of her as my mom are fading quickly.
I found this entry on the Alzheimer’s Association’s amazing website. They’ve started collecting stories from people living with this disease… I think we should read their words. We should understand what they are going through… the fear, the anxiety, the loss of precious memories, basic freedoms. This is a devastating disease, but to walk a mile in their shoes is something else entirely. It’s tragic. But we must. We must try to understand, truly understand what they’re going through and to look beyond the dementia.
Living with dementia: 5 years
My name is Tracy, and I am living with early-onset dementia. I was 38 years old when I was diagnosed, and I am now 42 years old. With the love and support of my family, I’m a very tireless advocate for Alzheimer’s disease.
Through the telephone and the Internet, I spend my days connecting with others who have been newly diagnosed and are searching for answers and most of all, hope. I try to be their rock and give them courage to continue on and teach them how to become advocates for Alzheimer’s disease. After all, it is their voice that makes a difference.
Last year, I donated The Dementia Memory Quilt — A Reason To Remember to the Alzheimer’s Association. It now rests in their national office. It’s purpose was to give hope and honor to those that have passed, and to those that are still fighting this disease. It’s also to show that Alzheimer’s disease is not an “old” person’s disease.
I enjoy spending my time with my family outdoors and raising funds to find a cure for Alzheimer’s disease.