Five years ago, right before her seventy-eighth birthday, my mother was diagnosed with Alzheimer's. The symptoms had been apparent for several years but alcohol masked some of them and denial, perhaps, masked others. Once my mother finally entered a rehabilitation facility and was no longer drinking, it became obvious that something was seriously wrong. Within weeks my sisters and I had cleaned out and sold her house and moved her into a secure assisted living facility with an attached unit for when her memory finally and completely gives out. She was given Aricept to try and slow the progress of the disease and it seems to be working. After a couple of years of railing at her fate and moments of clear and painful lucidity she has stabilized. Although her short-term memory is completely gone, she still knows family and friends, can still dress herself, and enjoy certain limited events, although she has no recall of any of those events as little as hours later, and conversations with her are repetitive in the extreme.
More than a dozen years ago, my grandmother, her mother, died after a long battle with what we now believe was Alzheimer's, although at the time was diagnosed as senile dementia. Her symptoms were the same as my mother's, although she became progressively and more quickly worse: unable to manage even the simplest of tasks.
I know that my chances of suffering from Alzheimer's have increased exponentially, perhaps as high as fifty percent, by having both a mother and a grandmother who suffered from the disease. And now, science has made breakthroughs which may well lead to an early diagnosis, as early even, as the age of fifty. I am fifty five.
So, do I wish to know? Do I wish to take the new spinal-fluid test which, according to the New York Times is "100 percent accurate in identifying patients with significant memory loss who are on their way to developing Alzheimer's disease"? Do I wish to live with the knowledge that ten years down the road I will be unable to think, remember, perhaps even dress or recognize family and friends?
I don't think so.
Although I admit that part of me wishes to know, if only to put to rest my fear of the disease, the larger part of me just can't cope. If there were a cure, yes, of course. But the fact is that the medications that are currently available may only slow the progress of the disease, and only in some persons. And the new medications being tested have side effects I am simply not ready to cope with. Although I sympathize that early detection may well help scientists to "save the brain" as they put it, of patients who otherwise would degenerate swiftly, I am not ready to offer myself as a guinea pig. Call it the ostrich syndrome but at this point I prefer the knowledge of no knowledge.
In addition, what if, like the early tests for AIDS, I got a false positive on the spinal-fluid test? The stress of waiting for another painful test would be nigh unbearable. And ultimately, and perhaps most crucially, if I should test positive, that particular information would severely limit my sense of my future and my ability to enjoy the life I lead now. Even should medications be able to slow the progress of the disease, the mere information that I had it would, for me, lead to impossible despair.
I assume I have "biological markers." I can live with that. I also assume that in ten years time the research will be perfected to a point that it may well make sense to take the spinal-fluid test and, should I show the markers, begin treatment. But for the present, doctors have run the usual tests for early memory loss on me and I seem to suffer no symptoms. A check of the ten early warning signs of the disease lets me know that none of the more serious incidents: repeatedly losing things, acting inappropriately, forgetting simple tasks, personality change, have reared their ugly head. But do I worry? Of course I do. My mother was a brilliant, accomplished woman. To see her reduced to a shattered shell of her former self is heart-breaking.
I have watched the progression of the disease in both my grandmother and my mother. My mother, five years after her diagnosis, remains physically healthy; she could easily live five more years at the least. But what is her quality of life? She can no longer read, no longer remain interested in a film or a television program. Her beloved stereo sits gathering dust. She gets anxious and disoriented if taken out of the safe haven of her assisted living for more than a couple of hours. She forgets her children's and sister's visits, can't remember what she did a day earlier. Her joy is fleeting, her grief palpable, and her life an endless stretch of things she can no longer love. The possibility of that sort of future for me is painful enough in the abstract. I do not wish to know for certain.