Our lives are shaped by defining moments. One of my defining moments came at the age of 46.
I had it all: a loving family, a great network of friends and a successful career. So you can imagine my shock when the neurologist told me I had “probable Alzheimer’s disease.” That was a defining moment that changed my life forever. The fact is, what he said made sense. I’d been having serious lapses in memory, concentration and judgment. After eight months of medical testing, Alzheimer’s was confirmed. That was eight years ago.
I was scared. Not scared for me, but for my family. I’ve always been the one to care for them, but now I have the easy part. It’s they who have to live with the hard part. The truth is that I carry a huge amount of guilt knowing my family is going to have to care for me. My son and his wife are just starting their careers, and my husband is finally settled into retirement. I’m becoming a burden right at a time when we all should be enjoying the prime of our lives. I don’t want them to miss out on life because of me.
“Each time there’s a wedding, anniversary, birth or graduation to celebrate, I think, ‘Is this the last one I’ll remember?’ ”
I worry about what’s coming. Each time there’s a wedding, anniversary, birth or gradu-ation to celebrate, I think, “Is this the last one I’ll remember?” My family worries about it, too. Shortly after my diagnosis, my son Alan wrote me a letter. He said, “What makes me sad is that although I will always love you, in time you won’t be able to remember that I do. So I’ll say it as often as I can now: I love you.”
Another defining moment came when I realized that Alzheimer’s is incredibly misunder-stood. Many people in my life didn’t want to believe that I—a so-called “normal” person they knew—had Alzheimer’s, because that meant that anyone, even they, could get the disease, too. So many of them didn’t want to associate with me anymore. They looked at me as if I had been struck stupid, as if I could no longer speak or think. They distanced themselves from me and my family, and that hurt. In this respect, Alzheimer’s truly is a silent disease. It’s silent in the sense that no one wants to talk about it.
“I like to think I’m living with Alzheimer’s—
rather than dying from it.”
So I joined with the Alzheimer’s Association as an advocate to try to help remove the stigma from the disease and make Alzheimer’s a public health priority. I started speaking with local groups, then state groups and then nationally. I write about it on my blog so my friends and family can understand what this dreaded disease is all about. I can’t sit idly by and do nothing, as long as I still have a voice. And I still do have my voice.
Today, at age 54 and retired on disability, I try to live as normal a life as I can, although the meaning of “normal” changes frequently.
For now, I like to think I’m living with Alzheimer’s—rather than dying from it.