Mike Barnes on the collective fear of Alzheimer’s

I asked the question differently when I first started looking after my mom, five years ago now. Then, two years after her diagnosis of Alzheimer’s (and who knows how long after she’d begun coping with its symptoms), I was more apt to cry out, in frustration that grew to outrage on her behalf, Where is A?! Where is B?!—referring to people in her life who, by any measure of love or compassion or duty, should have been with her on this darkest of journeys, but who were AWOL.

It was as she “graduated” through ever-greater levels of care—semi-independent, assisted living, secure ward, long-term care—that the question became more general and insistent. Where is everybody? seeped out from empty hallways and alcoves where the same people sat in wheelchairs day after day, never visited. It was as if an updated version of the fabled neutron bomb of the 70s and 80s had actually been deployed. Said then (memorably if not quite accurately) to destroy people while leaving structures intact, the new bomb leaves the infrastructure of a care system intact—buildings, equipment, staff—while obliterating the loving presence that is surely the patients’ due and an essential remaining solace.

Of course, there are exceptions; but visiting on different days, at different times, as I do, I see the same two or three people—usually daughters—all the time. This once prompted some rough math. Thirty people on a floor, three regular visitors—out of what? What kind of likely pool? Three immediate family members per resident, say (a low estimate); an extended family of five more; two or three surviving friends—you see where this is headed. Out of the 300 at-least-occasional visitors that might humanely be expected, you have 3. A disparity weirdly matching the one per cent/99 per cent of our current political discourse, except that here the destitution is on both sides. Have-nots of help (the one per cent caregivers, burning out), have-nots of care (the 99 per cent AWOL rest). And, of course, most destitute of all, the patients stuck in the middle—none of them getting all the support they need, many of them getting none.

There’s something fishy about such pervasive absence. Something creepy—as if you brush past, or pass through, the ghosts of the ones who should be there but aren’t as you go down the deserted corridors. The Super, the protagonist of my novel The Adjustment League, feels this keenly. It’s the barely remarked passing of an affluent woman on a dementia ward that starts him on his investigations. He senses, intuitively but also logically, something even nastier lurking behind the children’s nonchalance about their mother’s death. Neglect is the gateway drug: indulge its blithe indifference to humane duty and you’re soon ready to overlook larger sins of omission, and from there, in many cases, to move on to commit the greater evils of active harm.

I recently asked about a man who walks the halls from dawn to dusk, his gait spry, his face utterly bereft. Having had a few surprisingly lively chats with him, but never having seen him in anyone’s company, I said to a nurse that it was a particular shame he had no family. She looked down. “He has a large one. Most of them local, too. They never even phone.”

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MORE ESSAYS FROM MIKE BARNES: 

• My favourite places to read
• Writing with mental illness
• What it means to be ‘upfront’ about your illness

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Alzheimer’s, being at this point chronic and untreatable and fatal (if often cruelly slow), is a human problem more than a medical one. Loving kindness, simple presence—“I’m here for you”—is what’s needed above all. Company in the dark.

Why is that so hard to find?

Cold-heartedness, indifference, self-absorption—all the egoistic sins—can’t explain it, I think, apt as they may be in particular cases. I haven’t reached that pitch of cynicism. I think when something empties human zones this efficiently, the culprit is usually fear.

Fear of being reminded of what Alzheimer’s is and does. A craving to forget that it exists. But it does. Like cancer and lone gunmen and war and global warming, it’s not going anywhere soon. And running from a universal threat doesn’t protect you from it one whit, and only depletes the forces left to fight it without your help. “The facts are friendly,” psychologist Carl Rogers liked to say. Meaning not only that they’re better than the alternatives of ignorance and delusion, but that any significant advance—in an individual, a group, a situation—must start with a recognition of what is. That applies even, or especially, to existential terrors, for Alzheimer’s is no less, threatening us not just with pain and death but with the extinction of all we hold dear; with the fact that even our most fundamental consolation, “We’ll always have Paris”—our memories, that is—can dissolve long before we do.

Fear of getting Alzheimer’s. Not by simple contagion (though few of us are completely immune to magical thinking), but by shared genes. If a parent or another first-degree relative has Alzheimer’s, your risk of developing the disease triples. But, again, withdrawing your so-badly-needed presence won’t protect you in the slightest degree. Worse still, if you are absent now and the dreadful does befall you, you may hear, as in a fairy tale, a terrible curse whispered in your ear on the day of your diagnosis: May you receive the care you gave.

Fear of changes in your loved one. A former talker, she’s now mute. Or she screams obscenities. The placid man begins to bully others, insulting them, hitting them. The extroverted former athlete is now a sedentary recluse, without affect or inclination. Endless permutations, most more subtle than these, as the amyloid plaques and tau tangles multiply in the brain. There is no easy answer to the pain of this witnessing. Except to ask: Are you so wedded to preserving the person that exists in your mind that you’re unwilling to risk that image by visiting them as they live now? There is no greater betrayal—if I were religious I might say no greater sin—than preferring an idol to a soul. And, too, if you are open to them, not all of the changes are bad. The prim conformist breaking into merry laughter at the chirp of a bird, dancing by herself, admiring a pebble as a new and precious mineral. Neurotic and programmed responses can fall away along with more prized executive functions. It in no way glamorizes devastation to admit that brokenness, along with wreaking havoc, admits new views.

Fear your loved one won’t recognize you. This is the stopper for most people, I think. The most unfaceable terror. It is usually the first thing I am asked: Does she still know your name? Know who you are? No, and no-yes. She doesn’t know, at least not on a verbalizable level, that I am her son, and yet she greets me not quite as a stranger. A knowingness clouds her face. “A man I know” she said of me recently, “someone.” There is no gainsaying the pathos in this. But also no denying the essential wrongness in insisting that another person validate your identity by serving as an external hard drive on which is stored your dates, your traits, your accomplishments, your story. As lovely and precious as this is to us, it is also an instance of the conditional and instrumental relationship, treating someone as a means rather than an end, that Kant and Buber, among many wise others, warn against. Into the shattering of the roles forged by biography can come new, less mediated and more essentialized, encounters: “The purpose of relation is the relation itself—touching the You,” Buber says. Or Jean Vanier, more plainly: “In the end, the most important thing is not to do things for people who are poor and in distress, but to enter into relationship with them, to be with them….”

Allaying sorrow, you may find it a privilege and a profound freedom—never experienced before, perhaps—to be purely “someone” in another someone’s eyes.

To be a companion. To be with.

And to convey, in a place beyond hope or language, by your presence only, the declaration urged by the Buddhist master Thich Nhat Hahn: “Dear one, I am here for you.”