I realize there is much controversy about how money should be spent on Alzheimer’s research—whether more funds should go to a cure or go to prevention. Self-interest has kept me hoping that research finds a way to prevent Ralph from the currently inevitable slide into more serious dementia, yet I also have told myself that preventing Alzheimer’s from affecting masses of others is the more altruistic approach.
Then I read the article,“Younger Adults With Alzheimer’s Are Key To Drug Search,” . Focusing on a 37-year-old woman diagnosed with Alzheimer’s, it claims that testing for certain Alzheimer’s genes could be a crucial part of the research to prevent Alzheimer’s:
“Until recently, people who inherited this gene had no hope of avoiding dementia and an early death. Now there is a glimmer of hope, thanks to a project called DIAN TU that is allowing them to take part in a study of experimental Alzheimer’s drugs.
The project also could have a huge payoff for society, says Dr. Randall Bateman, a professor of neurology at Washington University in St. Louis. “It’s highly likely,” he says, that the first drug able to prevent or delay Alzheimer’s will emerge from studies of people genetically destined to get the disease.”
I hope Dr. Bateman is correct. But I can’t help thinking about Alzheimer’s in purely personal terms. And really, the pros and cons of the research were not what came to the forefront as I read the story.
All I could think about were my kids. Basically the Alzheimer’s gene is the monster in the room that has scared me too much to acknowledge out loud.
I doubt I am alone in this avoidance. I’ve noticed that children, most of them already grown, receive only passing mention on many spouse caregiver sites devoted to Alzheimer’s. And the heroic children caring for their parents with Alzheimer’s are so busy writing about their concern for those parents that they never mention fears about their own future.
But the genetic connection of Alzheimer’s within families does exist as this article, and many others make clear [“Alzheimer’s Disease Genetics Fact Sheet for the NIA”, ”Alzheimer’s genes: Are you at Risk?”, and a variety of scholarly studies.
The thought that Ralph’s and my kids may be at high risk for developing Alzheimer’s is horrifying.
But the thought of them getting tested horrifies me too. There are all kinds of genetic risks my descendents already face. Cancer, heart disease, and diabetes to name a few. Do they need to be burdened with the certainty, or even the likelihood of Alzheimer’s? I am someone who would rather not know my future (or the future of those I love, especially if that future is going to happen once I’m not around frankly). But my kids are not me. Eventually each will decide what course he or she wants to take.
While I certainly wish Ralph had not developed Alzheimer’s, we are adjusting day by day. In fact, I am fast reaching the point of not quite remembering what life was like before. Alzheimer’s has become central to our life as husband and wife, or as the ever wise Alzheimer’s Wife recently posted, “part of the bargain.”
The kids didn’t buy into that bargain. But they eventually they may have to own it. It’s not fair, but it’s life.