The following is an excerpt from Meryl Comer’s recently released book Slow Dancing with a Stranger.
I think most people are worried about their own risk if they have seen Alzheimer’s in their family. I worry all the time. When I walk up the steps to retrieve something and pause to try to remember what it was, I fear that I have begun to slip. When I mistakenly walk out without my house keys or misplace my jewelry or money tucked away for safekeeping, I panic. Is this the beginning?
Other memories are so vivid that I feel as if they happened just yesterday. At the same time, I try hard to forget how difficult my journey has been. I have cared for my husband, Harvey, who was diagnosed with early onset Alzheimer’s at age 58 for almost twenty year. For one thing, it is not yet over. Besides, I refuse to complain because I just see pain everywhere.
I used to think of myself as the well spouse, but now I realize that it isn’t the case. My vulnerabilities are great. I want to believe that I will know what to do and not be robbed of that final act of control. But when I look around me, I can’t help but think this won’t be the case.
My mother used to squirrel away prescription drugs. When I confronted her about what she was doing, she always replied, “What happened to your husband won’t happen to me. I’ll take care of it. That’s not living!” But Alzheimer’s often robs people of their abilities in an incremental fashion; few of us know when too much has been lost. My mother never used those drugs, and now her mind is too demented to have a say about deciding when enough is enough.
Each time I bathe and feed my mother, I fear for myself. I used to pride myself on being well organized and meticulous like my mother, but now I look at my cluttered desk and feel like I live in a state of chronic disarray. It was one of the first symptoms that something was wrong with Harvey. That makes me worry even more.
Experts say the barrage of incoming e-mails, phone calls, and texts taxes the prefrontal cortex, inhibiting the brain’s ability to focus. Some of us can handle the overload, but most cannot. That thought doesn’t make me feel any better.
If I begin to sleep, I never fully rest. Perhaps that’s why I have trouble concentrating and review my work over and over. My ability to remember things like names and faces stumps me more often than not. I’ve read it is a problem of retrieval and not storage—misplaced by not missing.
These days I blame it all on the stress that seems to blanket my brain. Stress was the first explanation given for my husband’s erratic behavior and moods. Now it, along with a heightened sense of vigilance, are the emotions I most keenly feel.
Lately, I have been trying to get my papers in order. Sorting through letters and mementos, I admonish myself not to be sentimental and toss them in the trash. Why leave curious and unanswered questions behind for my son Jason as Harvey did for me?
On my night shift, I take comfort in sitting alone in a living room surrounded by sentimental souvenirs we collected on our travels. There is no room on the coffee or side tables for even a drink. This is my memory shrine. It is the only place where my mind can go still. Many of the objects have small slips of paper underneath. My grandchildren are picking out—at my invitation—things they would love to have from Nana’s collection. I am curious about what they treasure most and prefer to know now.
Alzheimer’s creates a vacancy in our lives that cannot be filled. I want to enjoy being with those I love while I can still make memories with them. Memories warm us. Separated from our memories, good or bad, who are we?