I figure I have maybe fifteen good years left. That’s an odd thing to have to wrap your head around but when your grandmother and mother were both diagnosed with Alzheimer’s in their early to middle seventies it is an inescapable fact.
It took me some years to just wrestle with my mother’s diagnosis and realize my grandmother’s “senile dementia” was the same thing before I began to think about myself and to realize that my chances of suffering from Alzheimer’s have increased exponentially, perhaps as high as fifty percent. Five years ago, as I read the then latest scientific “breakthrough,” I discovered that it might be possible to learn if you will get the disease as early as the age of 50. Then I was 55. Now I am 59. And nothing has changed for me.
I simply do not want to know.
Now, each week it seems there are new tests to determine if one has early dementia (peanut butter being the latest). There is also very recent research which suggests a new diagnosis and maybe a cure. Some day. And today I read about the mice who were “cured” by ultra-sound on the plaques, if not the tangles, that are believed to be one of the causes. None of this has changed my opinion that I do not wish to know now that I may well fall victim to the disease. Besides, my son is a neuroscientist who has been working with mice for years trying to find out how to deal with various conditions. I understand how far the leap from mouse to man is. And unless and until there is a real chance of a cure I do not wish to live with the specter of a deteriorating mind always hanging over me.
I do not wish to know. I do not.
When my mother was diagnosed with Alzheimer’s she had been an alcoholic for many years. While her symptoms of dementia might have been normally apparent, some of those symptoms had been mistaken for and masked by her drinking. And there was a level of denial among her family and mine. But once my mother finally entered a rehabilitation facility and was no longer drinking, it became obvious that there was something else 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 gave out. She was given Aricept to try and slow the progress of the disease and it worked, for a while. After a couple of years of railing at her fate and some tragic moments of clear and painful lucidity she stabilized. Although her short-term memory was completely gone, she still knew family and friends, could still dress herself, and enjoyed certain limited events, although she had no recall of any of those events as little as hours later. Conversations with her were repetitive in the extreme.
Then five years into the illness, still physically healthy, my mother could no longer read, no longer remain interested in a film or a television program. Her computer was used as a backdrop for post-it notes to remind her of things she would never remember being reminded of. Her beloved stereo sat gathering dust. She became anxious and disoriented if taken out of the safe haven of her assisted living for more than a couple of hours. She forgot her children’s and sister’s visits, could not remember what she did a day earlier. Her joy was so very fleeting but her grief still palpable; and her life an endless stretch of things she could no longer love. The possibility of that sort of future for me is painful enough in the abstract. Horrific to watch in someone I love. I do not wish to subject my own children to that kind of death watch.
Ten years on, my mother is still alive but greatly deteriorated. After a grave illness where she was hospitalized for a week it was deemed that she was no longer able to live in the assisted living home she had been in for ten years, not even in the memory unit where she was moved four years ago. In the state where she resides the law says that assisted living patients must be taken to the hospital when they fall ill as there is no regular doctor on call. Her family, all of us, made the hard decision to move her as we did not wish other extraordinary means to be taken should she fall ill again. At the nursing home the doctors are in concert with our wishes. We have, in the past, also had to stop her from being taken for mammograms and work on her teeth, all visits that would vastly disorient her, as did the terrible time in the hospital. After her recent illness she could no longer walk or feed herself; she did not speak. Two months on she can feed herself with assistance and occasionally talks. But she still does not walk. She does not know where she is or who visits her. The doctors have said that aside from some malnutrition as she will not eat unaided, she is physically healthy and could live another year at the least.
I assume I have “biological markers.” I can live with that. What I can’t live with is the absolute knowledge that I will hear a doctor tell me I will succumb to Alzheimer’s. Five years ago when I read about the spinal fluid test that was supposed to be definitive, it took me about five minutes to decide “no.” Even if I did get the test, what if, like the early tests for AIDS, I got a false positive? Like waiting on a recent biopsy for cancer, the stress of the possible outcome would itself be nigh unbearable. I have heard little about that spinal fluid test recently; it may have been supplanted by other “breakthroughs,” but were I to assume that there were such a test that would confirm the “markers” for the disease what good would it be without a cure?
And now there is peanut butter and plaques and tangles and mice and more “breakthroughs” but none of them give me much comfort. Ultimately, and perhaps most crucially, if I should test positive, that particular information without a positive outcome 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 have been too close to the destruction to wish it upon myself or anyone who loves me.
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 or 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.
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. The commercials for new medications still make me weep. And though I understand 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.
Lisa Solod is an essayist and fiction writer who writes for the Huffington Post and blogs at middleagedfeminist.com. She is the author/editor of Desire: Women Write About Wanting. Her website is lisasolod.com. Follow her on Twitter at @lisasolod. To schedule an interview or speaking engagement with Lisa, she can be reached at firstname.lastname@example.org.
(An earlier version of this essay appeared in the Huffington Post)