In the meantime, it is up to family members and friends, where possible, to take care of their loved ones for much of the duration of their cognitive and physical decline. And yet there has been far too little clinical attention paid to the caregivers themselves. How can we help them through a process that is profoundly difficult, if not traumatic? Remember, alongside the rigors of providing day-to-day care, the caregivers often suffer from what might best be called “anticipatory grief,” as familiar aspects of their loved ones slip away. And this may be compounded by a fear, in family members, that they might inherit the disease unfolding in front of them. (...)
Alzheimer’s has different presentations and takes a different course in each patient, depending, in part, on where the process begins in the brain. That said, it’s often noted that Alzheimer’s interferes with short-term memory, leads to other deficits, includes a lot of denial, and, ultimately, leads many victims to gradually “lose their minds.”
The genius of this book is to show more precisely the process of resisting such losses as it unfolds between patient and caregiver, affecting not just one but both. To learn about this process is surprisingly helpful—not curative, but helpful.
Travelers to Unimaginable Lands clarifies why we, the caregivers, often behave like Sisyphus of the Greek myth, doomed eternally to roll a boulder up a hill, only to watch it roll down again. In similar fashion, we find ourselves repeating the same errors, making the same requests, and getting pulled into the same power struggles, pointless quarrels, and seething ambivalences as we care for our patients. This is partly because Alzheimer’s patients seem unable to learn from their mistakes. But it is also because, weirdly enough, caregivers experience the same problem. In an uncanny mirroring, we get pulled into a parallel process with our charges, forgetting what happened yesterday, repeating what didn’t work last time, becoming ever more prone to agitation and impatience, even as we’re engaged in a trial of devotion that pushes love to its limit.
Why does this happen? Precisely because, as Kiper shows, the healthy brain has evolved to automatically attribute to other people the existence of a self that is sustained over time, has self-reflective capacities, and is capable of learning and absorbing new information. This attribution is the brain’s unconscious default position, or cognitive-emotional bias, and does not simply disappear when we become caregivers for people whose own brains begin to falter. It is the invisible projection upon which each human encounter begins, a projection that is implicit in our every conversation and even in the structure of human language itself.
When we say “you,” we believe we’re talking to another “self,” an essence, or perhaps process, that somehow persists over time. But this self—and the continuity it implies— depends on having the memory capacity to knit together our different mental states. This same capacity contributes to the ability to self-reflect, which is a key component of human consciousness. Alzheimer’s and related dementia disorders silently strip their victims of the cognitive infrastructure that helps construct this self.
The “loss of self” described in the Alzheimer’s literature can happen slowly—over a decade in some cases—and may be stealthy enough that neither the victim (and this is the key point) nor the caregiver appreciates its full extent. Alzheimer’s notwithstanding, the person remains in front of us, in their usual form and appearance, exhibiting the same expressions, carrying the same music in their voices, evoking in us thousands of familiar memories and emotional associations. There are better and worse days, and sometimes the old self seems to return, with strong will intact—a viable simulacrum of who they once were. Clearly, there is a person there.
Yet as the disease advances, we may come to see just the shell or the husk of the self we once knew. But this new understanding does not stop us from projecting a continuous self, because, as Kiper explains, it is the brain’s default position—that is, we cannot help but see what was once there. This brilliant insight is the entry point into the hitherto difficult-to-imagine land she goes on to describe.
We often say of people caught in this bind—knowing the loved one’s self is diminished but continuing to see it as whole—that they are “in denial,” as if this was only a defense mechanism at work. But that is a misapplication of the valuable term “denial.” Yes, there can be denial, and Kiper describes some of it. But those caught in the Sisyphean entanglement are not simply denying that their loved ones are ill—after all, they’re the ones accepting infirmity and trying to help. Though it may accompany denial or even reinforce it, dementia blindness isn’t simply the defense mechanism of a stressed mind; it is, as Kiper shows, a product of how the healthy mind normally works.
by Norman Doige, Tablet | Read more:
Image: Alain Jocard/AFP/Getty Images
