This essay by Margaret Morganroth Gullette on memory loss and Alzheimer’s disease has a provocative title: “Our Irrational Fear of Forgetting.” So, what’s irrational about a fear of forgetting? At one point Gullette says “People over 55 dread getting Alzheimer’s more than any other disease, according to a 2010 survey by the MetLife Foundation. The fact that only 1 in 8 Americans older than 65 has Alzheimer’s fails to register.” So it’s irrational to fear Alzheimer’s because you’re not likely to get it.
Yes, it’s not likely — but 1 in 8 is not a negligible number. That’s higher than I would have guessed.
Gullette goes on to point out that people commonly experience various kinds of forgetfulness that have nothing to do with Alzheimer’s and betoken no serious cognitive impairment — so there’s no need to get anxious about that kind of thing. This is a good point.
But some of Gullette’s other claims I’m not so sure about. She says that
People with cognitive impairments can live happily with their families for a long time. My mother was troubled by her loss of memories, but she discovered an upside to forgetting. She had forgotten old rancors as well as President George W. Bush’s name. We sang together. She recited her favorite poems and surprised me with new material. We had rich and loving times.
The mind is capacious. Much mental and emotional ability can survive mere memory loss, as do other qualities that make us human.
Well, yes . . . but: it’s not really a gain to lose rancor because you’ve forgotten the people who had aroused your rancor. As Montaigne said in one of his greatest essays, there’s a big difference between conquering lust and simply becoming impotent. If righteous indignation (for example) is a key element of a person’s character, the disappearance of that indignation due to forgetfulness should not be confused with the achievement of peaceableness.
I don’t doubt that Gullette and her mother did indeed have “rich and loving times,” but for many families it doesn’t work out that way. Many people who contract the disease are constantly agitated by the loss of their faculties, their inability to get a grip on their conditions — as is understandable: but it’s deeply painful for them to experience and for their loved ones to watch. And I have seen the grief of friends whose parents — parents who raised them, loved them, nurtured them, consoled them — no longer recognize their children. When you think about the distinctively painful nature of these changes, you can understand why many people are more afraid of Alzheimer’s than of cancer, even though they’re far more likely to get cancer.
It may not be especially likely that any of us go through the Alzheimer’s experience, but it’s not rare. After all, even if only one in eight contract the disease, that one will likely have family members and friends who will suffer along with him or her. Alzheimer’s touches far more than 12.5% of Americans, and because of the changes in personality it can bring, and the loss of a history of experiences that loved ones can share, it has distinctive and significant costs. Insofar as popular culture sees a diagnosis of Alzheimer’s as a reason for suicide, and insofar as every small forgetfulness gets dramatically magnified in people’s minds, then yes, there is too much “fear-mongering” going on. But there’s nothing “irrational” about fearing the losses that Alzheimer’s brings.
I do not view my expectation of getting Alzheimers as fatalistic. My great grandfather had it. My Grandfather has it. My mother is still fairly young, but I will not be surprised if she gets it nor surprised if I get it. I am all for more funding and research etc. My Dad was just diagnosed with colon cancer, but I do not fear cancer the same way. Cancer can kill you, but will not change you nearly the way that Alzheimers will. Yes there can be some sweet moments. I remember as a child making a card for my great grandfather. He was very pleased and passed it around the room, when it came back he had never seen it before. He passed it around twice before one of my aunts set it on a table. That is a sweet memory. But both grantfather and great grandfather also had many instances of anger because they just did not understand what it going on. My grand father went through months of needing adult diapers, but would not let the nurses change him because he didn't understand what they were doing and he was not going to get naked in front of another person. He occationally got violent because he thought he was being violated. That is not something I want to remember. But it is part of the reality of Alzheimers.
I love books and ideas. I want to have a sharp mind into my 90s. But even though I am not quite 40 I have already mentally started preparing. I read incessantly. I am trying to start memorizing scripture and prayers to get them deeper in my soul. I do not fear that God will leave me or anything like that. It is more an awareness of the fallenness of this world.
Several years ago, we published here in TNA an essay by Colleen Carroll Campbell called "The Human Face of Alzheimer's." Using as a jumping-off point the recent death of Ronald Reagan, she gave an overview of the lived experience of the disease, with a particular focus on first-person accounts of sufferers. These accounts, she writes, "are as puzzling as they are illuminating. They combine a penetrating self-awareness with an image of the ways that dementia erodes that awareness. And they reveal the ways in which the loss of some forms of consciousness may awaken new ones — new ways of being in and beholding the world."
The whole lovely essay is well worth reading.