I posted the rough draft of “Too Many Genes” on May 10. Here is the revised post, about Randy and Mary and their family’s experience with Alzheimer’s.
After I was diagnosed with early-onset Alzheimer’s disease in 2015, I was puzzled. The year before I had been doing research for a writing project about my forebears in the Northwest. Here is what I learned. With the exception of my grandfather, who died in a logging accident in 1940, there was no smoking gun among my grandparents. I hadn’t learned yet that Alzheimer’s can be caused by environmental causes. My dad was a commercial fisherman. One theory of mine is that as a small boy, I often accompanied my dad to his web shed, where toxic fluids were kept in the harbor. That was my theory. But that was irrelevant.
But Randy Garten and Mary Bessmer don’t need evidence at all. Randy’s family tree is riddled with cases of Alzheimer’s, going back to the era when people rarely called it “Alzheimer’s.” His mother and his maternal grandfather and great-grandfather all had the disease. Randy’s father also said there was some Alzheimer’s on his side of the family, but did not go into specifics. One euphemism used back then was “hardening of the arteries,” as if it was a concern of the heart and lungs. There was a stigma against people with dementia.
Mary said, “I saw stigma within Randy’s family as much as outside. Randy’s Dad seemed ashamed as well as depressed and frustrated by the disease. He was a precise, organized engineer who valued hard work. He saw the glass as half-empty rather than half-full. He would quiz his wife (who had dementia) about what she had for dinner the night before and felt badly that she didn’t remember. He found her repetitive actions without accomplishing anything useful to be a terrible thing.”
At the same time, Mary said, “Randy’s Dad did see caring for his wife as his special responsibility and mission. Although he struggled with depression, he managed to care for her at home until the last six weeks of her life. After her death, Dad began to notice some of Randy’s memory lapses and began to fret about Randy having the full-blown disease too, although at that time Randy’s diagnosis was mild cognitive impairment.”
Two years later, during the final year of his life (2016), Randy’s Dad said to Mary privately, “I won’t be able to stand it if Randy has Alzheimer’s like [my wife] did.” Mary said, “He mourned this possibility and seemed to feel guilty about perhaps giving it to Randy through his own family genetics. Because of Dad’s depression and suicidal ideation, we never informed him about Randy’s Alzheimer’s diagnosis at age 63.”
Sadly, Randy’s dad was clairvoyant, despite his Alzheimer’s. Randy did have Alzheimer’s: Randy himself was diagnosed in 2016, and left his longtime position in the state Health and Human Service Department, working under Alice Bonner in the state administration of Charlie Baker.
But what about the stigma? Over the last two decades, there have been leaps and bounds in understanding this disease. But when a young adult learns that he or she is likely to end up with Alzheimer’s in middle age: That could stress the parent-child relation in a very big way.
Of course, it’s possible that Alzheimer’s will find a cure and the generation of Randy and Mary’s kids could benefit in a huge way. Are you skeptical? Over the last 18 months, there was serious hype about ending Alzheimer’s. And if you are one of those adults whose families has the APOE4 gene: Don’t become fatalistic. Money speaks. And one of these years, there will be a sea-change.