My family has always made light of our genetic predisposition to Alzheimer’s Disease. Our jokes run the gamut from socially acceptable to completely inappropriate.
Sometimes we dabble in light ribbing in order to relieve tension, like when someone forgets a name or retells a story. “Get ready!” we will sing-song to our partners or family members or friends, alluding to some inexplicably hilarious distant future in which we have no memory at all.
Other times we skew darker, like when we laugh about that time my great-grandmother accidentally used Lestoil (a multi-purpose cleaner) to bake a large batch of cookies and my grandmother had to run around to all the neighbors and collect them. Or how in my grandmother’s later years she couldn’t tell any of her daughters or granddaughters apart so she called us all Barbara.
It sounds bleak, I know, and maybe a little cruel, and maybe we should think twice before taking this hit comedy routine on the road. But Alzheimer’s Disease has no cure, and most scientists believe that those who have a family member with the disease are at a higher risk of developing it. The risk level goes up even further when more than one person in your family has had the disease.
My grandmother had it, my great-grandmother had it and my great-uncle had it. The math isn’t promising.
Of course, I am not alone in having a family member (or three) suffer from this affliction, as Alzheimer’s is the most common form of dementia. A progressive disease, it affects the brain, and grows more and more destructive over time. Alzheimer’s is associated with memory loss, but the disease is much more overarching in its destruction, causing the sufferer to lose the ability to understand visual images or to make clear judgements or even complete simple daily tasks. Many Alzheimer’s patients experience sudden changes in their mood and can become fearful, anxious or even violent.
There are seven stages to Alzheimer’s, and the final stage is terminal. This may include the patient losing their ability to swallow. But unlike some diseases, this final stage isn’t always reached swiftly. My grandmother started showing signs of Alzheimer’s around the age of 75 and only just passed away last year at the age of 96. For nearly a decade her body was healthy and strong, so it was a struggle to understand that what was happening to her was all in her brain.
While Alzheimer’s has no cure, in some cases a test of the Apolipoprotein E gene can tell patients whether or not they have an increased risk. Many doctors encourage those who may be genetically predisposed to the disease to have these tests done, but with no way to slow or prevent the development of Alzheimer’s, many (like my mother and aunts), choose to skip the test in favor of a future that is uncertain but still optimistic.
A silver lining, though a muted one, is that my family members who suffered from Alzheimer’s succumbed to the late-onset variety. This is the more common form of the disease; less than 10 percent of Alzheimer’s sufferers develop the early-onset form. Late-onset means the disease doesn’t really start surfacing until the individual is in their mid-sixties or older, which sounds far better than beginning to lose your memory at age 30. But in this modern world, where the average lifespan for an American man is 76.5 and 82.1 for an American woman, this information can be of little comfort.
For a family of academics, voracious readers, and quick-witted banter-lovers, losing control of your senses, memories, and abilities can seem worse than death. It is incredibly difficult to see a bright flame slowly extinguished, and even harder to realize that, at least for a while, the individual knows what is happening to them.
As a family unit we remain hopeful that a cure or at least a treatment will be developed within our lifetimes; new drugs are being developed and new studies are being published all the time. My mother and aunts allowed researchers to learn from their mother’s decline and even donated her brain after she died. We participate in the annual Alzheimer’s walks and raise money for what we can.
But more often than not, we laugh. We ask those close to us, “will you still love me when I’m loopy?” with a light tone that carries a bit of fear. We take photographs, we tell stories, and we write things down. We read and read and read. We make jokes in the doctor’s office, we make jokes over dinner, and we make jokes on the phone. Even while gathered next to my grandmother’s bedside as she died, we laughed. We cried, we told stories, and we laughed.
We laugh because we are strong and funny and full of life, and maybe a little cruel. We intend to face the future with a grin.